|
||||||
|
Title: I'm Back. Ontario People read and reply please Post by MorePower on May 19th, 2006, 9:10pm Hey, I am back. I have been suffering since last July, not a miniscule in time frame from what you guys ahve eeb suffering but I have had zero relief. Maybe 1 night here or there but aleaat 2 per day. 1 in the afternoon between 1 and 3pm as a rule, sometimes as late as 6pm and 1 at night. They start at 9pm rarely but 90% of the time its 1:10am on the nose out of a dead sleep. The CH are getting worse and longer. First started at 15 min, now almost hours. I can't take it anymore. I am a Christian and whn I get an attack, I ask God, to take me out of my misery and let me die. I would not commit suicide but ask that I die. The night attacks are so intense. Only my wife sees how I suffer, My 7 yr old wakes up, sees my sreaming, ripping the headboard off the bed, curling up in a ball crying,.yelling, screaming in pain. He cries because he knows nothing. MY wife is disabled from a car accident and feels helpless. I am on topamax,anti dperessant abd today got a trial of imitrex for 5 days. I would do surgery in a heartbeat if there was a 1% chance they would stop. No one beleives me that they are more severe than others. The video of the guy in clusterbusters of the guy is not even a 1/4 of what I get. His attack is a normal afternoon attack for me. The night time attacks I am useless. Then for 2 days I feel throbbing in my face. My body is exhausted. These CH started immediately after my wifes car accident. I was properly diagnosed and learnd the hardway by loosing a tooth as it starts in my right upper gumb abd goes behind my right eyeball. I didn't come on this site for many reasons, Mainly because I felt I can't get help. Now, I am at my wits end. I can not take it any longer. July 05 to May19,06. Not 1 day relief. None stop. Right through Fall, Winter, Spring. i ahve had enough. Thanks God, I am on Stress leave otherwise I would have got fired as I would have gotten hurt at work. I am useless to anyone at this point. Even myself.I don't know what I am goign to do. Anyone else from Ontario????PM me if ok I am in London, Nice to meet any fellow suffers in my area. ;) |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by E-Double on May 19th, 2006, 9:28pm Welcome back. Sorry you're in pain. Don't belittle others Lose the chip Gain support and help Give the same. Good luck! |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by BobG on May 19th, 2006, 9:35pm Hey MP, welcome back to the board. There is help here. You only mention Topomax and a trial of Imitrex. Have you tried anything else. Prednizone, verapamil? Is your Imitrex pills, spray, injections? Loosing the tooth may not be what triggers your pain. The trigeminal nerve has endings in the upper and lower gum lines. Inflamation of the trigeminal nerve can feel just like a tooth ache. Most people get that pain and the pain behind the eye is probably the most common trait among sufferers. Let us know about you meds. Surely someone can suggest help for you. |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by BlueMeanie on May 19th, 2006, 9:52pm Welcome back. It sounds like this is the first time with Trex. I hope it works for you. If it's pills, don't give up as you just need to change to either the spray or the shot as pills don't work fast enough. Read the imitrex tip to the left of the page for some good info on splitting doses. Have you tried oxygen ? There is also info on that subject to the left of the page. You should spend a great deal of time reading when not in pain. There's tons of info throughout this site. Good luck and more power to ya . PF vibes !!!!! |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by Grandma_Sweet_Boy on May 19th, 2006, 9:59pm Check your PM's. Carol |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by MJ on May 20th, 2006, 1:47am Hey Mo Pow Welcome back. Good advice from EE above. We all understand more than you think. Many here get hit up to 10 and more times per day, including the video dude who was having an easy day I heard when the vid was taken. I remember when I first got these things I would curl up in a ball sometimes and literally go into convuslsions from the pain. One important thing for me is allways be upright and moving when being hit. While laying on the floor or bed things allways seemed worse. Get up and move, find an unobstructed pathway and use it, pace, count the steps whatever to train your mind. Fight the damn thing with all you got and then revel in the glory of kicking its heathen ass. If a god you believe in your asking him the wrong thing. Its give me strength not take my life. I'm sure your not useless to your wife and son, sounds like they could use your help be happy your not disabled on a permanent basis. Live for the times between pain. Check your meds effects maybe they are prolonging the cycle. |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by BikerBob on May 20th, 2006, 3:41am Hi MorePower, Ontario, Heh ? Here's the link to your friendly local neighborhood vendor of RC seeds in Ontario. See the LSA FAQ on http://www.clusterbusters.com to understand their use in the treatment of Cluster Headaches. http://www.ethnogarden.com/cart/index.pl/catid_77/proid_156 Be well, BB |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by MorePower on May 23rd, 2006, 2:06pm What are the seeds for? What do they do? Are they legal??? What is a KIP scale? I took my 1st dose of imitrex last night but it lasted 1 hour. It was the worst i ever had yet. Not the longest but the hardest hit. I took the imitrex within seconds of it coming on. Not sure if it helped. Usually, I call asleep within minutes of an attack because I am exhausted. But I couldn;t because my face was throbbing. It still is some 8 hours later. I felt sorry my 7 yr old son, had to watch me go through it last night. My in laws are staying with us, so he was sleeping in our bed. He cried his eyes out feeling helpless. I felkt bad cause he had to see it. I apologized to him this morning. He knows Ihave no control over it. Again, I am afraid to go to bed tonight. im exhausted physically and mentally :o |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by E-Double on May 23rd, 2006, 4:28pm If you can't get melatonin, some in Canada have had luck with Gravol for sleep and prevention of your night time hit |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by MorePower on May 23rd, 2006, 8:17pm when I get a cluster I am in a dead sleep, wakes me up likea firetruck in my bedroom,. I have no trouble going to sleep. |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by E-Double on May 23rd, 2006, 8:44pm We all know how one feels and when it appears. That's why we are here!!! Read what was written. Not to help you get to sleep but as a preventative! Melatonin ..........nevermind, I'll dig up some research for ya. http://www.achenet.org/articles/84.php Leone M, D’Amico D, Moschiano F, et al. Melatonin versus placebo in the prophylaxis of cluster headache: a double-blind pilot study with parallel groups. Cephalalgia 1996;16:494–6. Peres MFP, Rozen TD. Melatonin in the preventive treatment of chronic cluster headache. Cephalalgia 2001;21:993–5. |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by Sean_C on May 23rd, 2006, 9:11pm on 05/23/06 at 14:06:43, MorePower wrote:
That fuckin sucks bro, been there countless times myself :( My best advise would be to have your o2, trex or some kind of abortive and crushed ice ready for when he comes. Lots of good info above, hopefully he won't hang around long. Sean....................................... |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by broomhilda on May 23rd, 2006, 10:14pm Another resource that may help you locally... http://www.clusterheadaches.ca/cgi-bin/yabb/YaBB.pl I dont know how to post links but if you look at the threads in "dealing with clusters" there is a lot of information that may help you. PF wishes Andrea |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by MorePower on May 23rd, 2006, 10:17pm I put him to bed at 9, fell asleep immediately after. 9:20 I got nailed again. I went out of the bedroom and went to the stairs to have my episode. MY mother in law watched me have one. First one she ever saw. Now I feel bad for her. I used the Imitrex again. No relief. How many times should I use it b4 I toss it??? Also, what is a scale that you guys use???Last night and tonight have been the worst pain so far. Not the longest lasting but the hardest pain. Also, anyone ever work in a factory and have an attack? How many attacks b4 u got fired? I will get zero sympothy at work. Iam on stress leave right now.Which is good. I'd get hurt if I was at work now anyway. I am so scared whats going to happen to me and the rest of my life if I will be able to hold any jobs or even get hired if I get fired for CH's.... u guys are all soo nice,thanks for the support and info above. I wil print it off and give it to my doctor. |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by seasonalboomer on May 24th, 2006, 9:21am dude, you need to talk to someone as the message board is a little too slow for your present spot. I saw Grandma ask you to check your PM. Did she talk to you? If not, someone who has/had this level/frequency of hits can talk you through some next steps. I understand how you feel, though I don't sufffer at your level. The main objective has to be to start to put together a plan. That includes figuring out medications and therapies that can help you when you are getting hit and maybe find a course of meds that can help you avoid getting hit as often. Maybe someone can talk you through some of this as it sounds as though your life feels like a mess to you. I can tell you there is hope and these things can be managed better than you are doing now. It takes discipline, building knowledge and not allowing yourself to simply be a passive victim to these things. Someone else asked about Oxygen. With the right rig this could possibly help you out of 50%+ of your headaches. Doesn't that sound worth getting some? TODAY? Are you injecting the Imitrex? Most people with your severity find that only the injections are worthwhile. Pills, no way. Find a way to get )2 and buy a Clustermasx with it online at clustermasx.com. Good luck. Scott |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by unsolved1 on May 24th, 2006, 9:39am I was wondering if anyone was going to ask that question, and finally Scott did. Are you using the Imitrex injections ?? If not, Get them !! Try Prednisone for a break in the headaches. It'll let you gather your wits !! For more immediate help, go to an ER and ask a doctor about getting an infusion of Solu Medrol. Goodluck UNsolved Edited to add: The "KIP SCALE" ... look to your left on the menu and click on the link !! |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by MorePower on May 24th, 2006, 9:45am I will ask my doctor for the upententh time for oxygen. He is so reluntant for anything. The imitrex is pills. I am so exhausted. Ill come back later with a clear mind. Im too tired to think right now. luv ya guys |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by seasonalboomer on May 24th, 2006, 11:06am dude, i know you're tired but you need you to do a couple things. don't take no for an answer on the oxygen. you need a prescription for an O2 tank with a regulator that allows for 10-15 lpm flow rate and a NON-REBREATHER MASK. (You can order a better one later from Clustermasx.) Each of those details is critical. If your doctor is reluctant - you have to FIGHT HARD. Print the links here about O2 and about medications and therapies listed. My doc fought me as many have and in the end YOU ARE IN CHARGE. As for the Imitrex pills, again FIGHT HARD to get the injections. The pills are too slow for Clusterheads. Let the migraine people use them but for you, you NEED either injections or the inhaler. They've both worked for me but the injection feels like a freakin' miracle happening when they are successful. My main point is that you sound as though you are at your wits end. You can either lie down and be a victim of your doctor, the system, or cluster headaches. Pick your poison. OR, you can get off your keester and FIGHT HARD for your life. There are tools that work, it is YOUR JOB to learn and read and FIGHT for them. Many of us approach replying on this board in different ways. I'm not a good "consoler" - others are better at that part than me. I'm the kind that says if you're in a fight, you better be the first one to grab the bazooka when everyone is choosing weapons -- don't let someone else give you a pocket knife and then blame them. This board was a godsend for me and I learned that the advice has to be acted on to work. So, get going. FIGHT! Scott |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by MorePower on May 24th, 2006, 12:32pm Hey, umm I just spent 45 min writing out a long reply, but it said it was too long, so I hit back and it deleted all of it, Grrrr. I am gonna try to fight. Any links to injectable imitrex? How do i ask for 02? |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by unsolved1 on May 24th, 2006, 12:39pm Imitrex Injection Info (http://www.migrainehelp.com/4.about_imitrex/4.2.taking_imitrex/4.2.4.imitrex_injection.html) http://us.gsk.com/products/assets/us_imitrex_injection.pdf How to use Imitrex Stat Doses (http://www.migrainehelp.com/pdf/imitrex_stat.pdf) http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by BobG on May 24th, 2006, 2:01pm About your son seeing an attack.......... Explain to him, in words he can understand, what the attacks are what causes them. Do this when you are not having an attack. Little kids are a lot smarter than most adults will give them credit for. Many times, when a parent is hurting, a child will blame themself thinking it is because of something they have done. You must let him know that he is not responsible. Give you son a 'job' to help you through the attack. Could be to see that the radio or TV is turned down, could be to care for a younger sibling until the attack is over, could be he can get you a hot cloth or ice bag. He just needs something he can help with. Be sure to give him praise, a big hug and a thanks for a job well done. It will help take his fear away and make him proud he did his 'job' to help. |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by Linda_Howell on May 24th, 2006, 6:52pm Everyone here has given you really good advice and I can tell that you are just about at the end of your rope and so very frustrated. I know you're in pain but I HAVE to say this: Eric said to get rid of the "chip" and don't belittle others, and I will tell you why he said that. The man in the video you referred to is Cluster Chuck. In the 19 years I have been chronic and out of all the clusterheads I have met in person over the years, I have never seen anyone who gets hit as often as he does. I've seen him have a 30 min. hit.....get a break for a 1/2 hour or 45 mins....and get hit again. This goes on and on, over and over, all day and all night for him for years now. He goes through 10 to 12 E-tanks every single day. Because of a heart condition he can't take any abortives except 02, and never once have I heard this man complain or be on any kind of a pity-pot. I am only saying this to you because I have a deep respect for this man and when you said something about the guy in the video only having 1/4th of what you get... it really hit a raw nerve for me & a few of us who know what absolute hell Chuck goes through. Linda |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by unsolved1 on May 24th, 2006, 7:01pm Well said Linda ;) UNsolved |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by MorePower on May 25th, 2006, 7:04am Linda: I didn't know that he suffers that often, I am sorry. Here is the coles notes version of me and my family with alot of details left out. Very condensed version. Jan12,05-married my best friend, conceived a child on wedding night. For next 3 months my wife was gravely ill,normal for some women. April5,05-(my bday), We lost the child. She carried it for a week b4 the D&C, and was assured she would feel nothing and be out of it. That was the exact opposite of what happened. This almost cost our marriage. July25,05-My wife was in a bad car accident. Rear ended. At 1st was 2nd degree whiplash. Now diagnosed with incurable Fibromalgia(neck,back,knees and feet),Chronic Fatigue Syndrom(sleeps 12 to 18 hours a day) and severe myiofacial pain.Plus she has chronic muscle spasms thoughout each day. She can barely walk with even the use of a cain. She had a busniess and was successful, but that has gone belly up.She is 29 yrs old. Dec,05 My son,age 7-diagnosed with ADHD(prev marriage)I have 50% custody-4days on/off Jan27,06-My son was mauled by a dog and received 20 stitches.Now suffers from severe fears ,espc. dogs and has night terrors. he is in councelling. Finally,last week, his mom agreed and got him on concerta for the adhd. Me-Started having Chronic CH's immediately after wifes accident.Thought it was a tooth.2 root canals,tooth removed,then dianosed. Been suffering 2x a day.Rare 3x's a day but has happened. I also suffer from exzema and IBS, Migrianes, tennis elbow(work related) and back problems. I have been on stress leave since Jan 12.Thanks God. Just giving you guys a heads up, Why my plate is full. I left out alot of sad details like money situations(almost lost eveything).Father in law had surgery for 12th time in 1yr and half, and other family issues. Not trying to complain. Just explaining why maybe I feel worn out and less apt to fight. I apologize If I seemto have a chip. Its been a rough year. Thanks for the encouragement, I am gonna do some more research today b4 my psch appoint tomorrow and beg for imitrex injections and 02. Bless u all Tom |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by chewy on May 25th, 2006, 7:46am Quote:
Its about identifying not comparing. |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by MorePower on May 25th, 2006, 7:48am again, my apologies :'( ok |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by LeLimey on May 25th, 2006, 9:50am Tom you've gone through alot, you're welcome here and I do understand the eagerness to post and get it out where you finally can feel understood sometimes overtakes the tact of what you're trying to say. The point has been made as have the apologies and its time to move on. If anyone else brings it up.. stuff em! ;;D Now lets see what we can do to help okay? Have you made it back to the doctors yet? Do you still need info on how to ask for O2? Have you ever tried ice or redbull/strong coffee to abort? Forgie me if you've answered those before but flicking back through posts now I'm missing answers if they are there. Don't give up on us okay? We WILL help you! Helen |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by MorePower on May 25th, 2006, 1:05pm My appointment is tomorrow, fingers crossed. For anyone new to this post, please read my last post on end of page 1,my summary.thanks |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by LeLimey on May 25th, 2006, 2:02pm Good luck for tomorrow, Get o2! Get Imi JABS! Come back and tell us how you got on.. in that order okay?! ;) Helen |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by E-Double on May 25th, 2006, 7:41pm Chewey said it well. Hugs to you and your family. I as many certainly understand!!!!!!!! Be well and really try to enjoy life!!!!! It is what it is man, so make the best of it ;) |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by MorePower on May 26th, 2006, 2:08pm The Doc I seen today was a Psych. She would not prescribe me O2 or Imitrex Injections as she is not familiar with CH's. She is treating me for depression and anxiety-stress leave from work. She did say to call me Neurologist and go on stand by appointment. My appointment is sched for June 20th. I hope to get in earlier, My doc appoint is on Monday. I hope he gives me 02 or Imi Injections. I am gonna beg him for it. I can't print nothing off, I am outta ink.$50 cartidge(grr). In the meantime. Ill just try to fight and do more rerearch. Id eventually be intrested in doing a fundraising thing. Kinda like Michael J Fox did for Parkinsons, or alteast rasing awarness. |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by LeLimey on May 26th, 2006, 2:22pm Tom ring the neuro daily to see if there are any cancellations.. it's worth a try. If you can't print stuff off take the links with you, at least you have a chance of making him see if he will look at them. I've been wondering how you got on, thanks for letting us know, I just wish you had more good news, for you more than us but it would have made my day to hear you get sorted. Keep battling, we'll get there between us! Helen |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by seasonalboomer on May 26th, 2006, 2:36pm on 05/26/06 at 14:08:41, MorePower wrote:
I was just going to let your post go by with an "oh well" but feel compelled to take another effort to get you fighting productively. You've got all weekend to get a printer cartridge. GET ONE. There are dozens of us that have made use of these printouts and been able to convince our physicians that we needed O2 and Imitrex INJECTIONS. I, for one, would not have been able to convince my doctor without having the additional back-up of saying, "Look Doc, I'm telling you this is what I need. There are no pain killers in this, just O2 with the attached specs, and IMITREX injections. Doc, Why do you want to deny me the most effective treatment for this horrible pain I'm having to go through?" It worked, as he flipped through the pages. Don't let yourself make excuses for not going with all your ammunition. This is part of FIGHTING with al lyou have so you can take care of the many other things going on in your life. And, by the way, prior to making huge efforts to raise money and/or awareness over CH, you'd make us very happy if you'd do what you need to do first to get your CH management program underway. Stay focused. Scott |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by BikerBob on May 26th, 2006, 3:20pm If you don't want to buy a new printer cartridge, can you go to a copy shop that has computers for rent with a printer, get on the internet and print this? http://www.brightok.net/~mnjday/chtherapy.pdf The general consensus of fellow cluster headache sufferers is that this article is right with 3 minor exceptions: 1) In the Oxygen section, 8-10 l/min should be 10-15 l/min 2) Some have found that Zomig (zolmitriptan) nasal spray is better than Imitrex injections due to its longer lasting results. 3) The Expert opinion section says if melatonin fails then verapamil should be instituted. There is no reason to wait for melatonin to fail. Melatonin and verapamil should both be started together as soon as possible. BB |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by Linda_Howell on May 26th, 2006, 7:41pm Morepower, do what BobP did. Bob: I need to see the Dr. right away. receptionist: The earliest I can squeeze you in is in 2 months. Bob: Forget it. I will have shot myself by then. receptionist: The Dr. can see you tomorrow at nine. or words to that effect. You MUST take the lead in your care. You must be super-militant. Linda |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by clarence on May 26th, 2006, 9:05pm MP - I'm in Toronto. I would love to get together, or chat over the phone if you need to. I have had a few bad experiences with Ontario docs, and I would be happy to give you any info I can. There are a few of us here in Ontario, and maybe its time for another Toronto meet and greet?!?!?! Sounds good to me! Casey ps - get on http://www.clusterheadaches.ca - an unending source of information and support - for Canadians (and residents) by Canadians (and residents). |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by BikerBob on May 26th, 2006, 9:23pm on 05/26/06 at 19:41:06, Linda_Howell wrote:
I strongly disagree with Bob P and Linda_Howell. Never threaten suicide to a doctor unless you mean it. The doctor will focus on psychiatric care for suicidal tendencies rather than cluster headaches. Just tell the truth about the pain to get a fast appointment. BB |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by Jonny on May 26th, 2006, 9:48pm on 05/26/06 at 21:23:29, BikerBob wrote:
And what is the doc going to do, commit you?......DUH!!! Some people ::) |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by E-Double on May 26th, 2006, 9:59pm on 05/26/06 at 21:48:38, Jonny wrote:
Actually they can. The police can be called and one can be placed in a psyche ward. At least in our country |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by Linda_Howell on May 26th, 2006, 10:15pm Quote:
Diagree all you want. It worked for him. I'm sure he WAS NOT kidding. He's 6' eleven-ty and I wouldn't ague with him if my life depended on it. If you saw him you would n't either. This is NOT about threats. It's about getting an appointment that is necessary. Linda |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by Jonny on May 26th, 2006, 10:23pm on 05/26/06 at 21:59:41, E-Double wrote:
Just imagine how much one could sue that doc for that shit......LMAO ;;D |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by BikerBob on May 26th, 2006, 10:39pm on 05/26/06 at 19:41:06, Linda_Howell wrote:
on 05/26/06 at 22:15:05, Linda_Howell wrote:
How do you know that Morepower wouldn't be "kidding" if he lied to a new doctor about suicide? As I said, tell the truth about the pain to get a faster appointment. BB |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by Jonny on May 26th, 2006, 10:47pm on 05/26/06 at 22:39:00, BikerBob wrote:
So what you are saying is this sentence would be BS, "If I dont get some relife I will probably end it" Seems like thats the truth to some, no? I guess you have meegranies, Bob |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by BlueMeanie on May 26th, 2006, 10:57pm I had a doc that would always give me Trex and understood that I NEEDED it for CH's. My insurance changed and I had to get a new doc. The new guy was very hesitant to give me Trex or 02 for CH's as he didn't know much about them. I told him that without Trex I may not survive and thought many times about shooting myself because without Trex I couldn't handle the pain as it was the ONLY thing that ever worked for me. Without hesitation he wrote me a script for both Trex and 02. I was sure glad he did. :) Sometimes you have to be a little demanding to get the docs to understand just how bad this pain is. |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by clarence on May 26th, 2006, 10:58pm More Power - Don't get distracted by the tangents. Focus. Get to the doc, and get to the neuro. Get O2, and get Imitrex injects. You have an appt. with your doc on Monday? That's good. Is there a clinic you can go to on the weekend? Better. If you need to, go to the ER. Your doc may be able to expedite your neuro appt. Casey |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by Linda_Howell on May 26th, 2006, 11:08pm Quote:
Good Lord Bob. Isn't THAT what I was saying????????????? ::) ::) ::) ::) |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by BikerBob on May 27th, 2006, 1:12am on 05/26/06 at 23:08:03, Linda_Howell wrote:
Oh, so you are saying that all CH sufferers should say to their neurologists that they are suicidal in order to get better service? Get real! And you are the OUCH-US Family Services Team Chairperson? As I said, tell the truth about the pain to get a faster appointment. BB |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by MorePower on May 27th, 2006, 5:56pm wow, I will call and ask if there is any cancelations again but I won't threaten sucicide. When I have an attack. I seriouslly consider it. When its over, I know I would never do it to myself or my family as it is selffish and unchristian. Quite the converation you guys got going there |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by Redd715 on May 27th, 2006, 6:12pm It's just like any other community.... We may all have CH touch our lives, but other than that, it's no different than your average town meeting. Different people with very strong yet different opinions. You'll get used to it 'round these parts. :) |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by BobG on May 28th, 2006, 3:01am MorePower, Please do us a favor and remove that video you are using for a tag line. It's taking up a hellva lot of bandwith and makes scrolling very slow and jerky. Thanks. |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by Jonny on May 28th, 2006, 3:09am on 05/28/06 at 03:01:03, BobG wrote:
DITTO!!!! If I wanted to watch a movie id rent one! |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by MorePower on May 29th, 2006, 7:50am Video removed. I thought it was funny. Reminded me of banging my head when getting a CH..... Ok, some really weird stuff is happening to me... As I posted b4, I stated that I get a Kip 5 to Kip 8 during the day as a rule and then Kip 9/10's at night. I call them Kip 20's. Well, day b4 yesterday, I had 4 Kip 5's with a 1/2 break one after the other. I ahve never had 4 in one day. Then last night(Sunday), I went to Cruise Night(car show) and at 7:30pm, I had a Kip 10. I have never had a Kip 10 during daylight hours ever!!!I climbed in my truck and had an episode. People were watching me.Most of the time, my eyes were shut. But when I did open them, I saw people pointing at me and starring. Probably wondering what was happening to me. In a way I was embarrased, in another way I could care or less. It hit me hard. It lasted about 1hr 15 min. When it was done, my heart was racing and I felt exhausted. Like someone just beat the snot out of me.I sat in my truck another 1/2 and then I was ok. I got home and told my wife. I told her it was the 1st time I had ever experience a night time attack during the day. Her mom is staying with us. My wife said she can't bear to watch me have attacks anymore as its too painfull for her to watch. My wife suffers from a disease mentioned in prev posts. When I have these attacks I am moody, and short with people. People don't understand that it sucks life out of us. I don't mean to be rude, short. It just wears on us. I ahve noticed even in the past week, my fuse is very short. I don't mean it to be. But it just is. My wife gets angry with me, saying I don't listen to what she is trying to tell me. I just wish she would understand its not her, its not me. Its these darn CH's. Now that I had a Kip 10 attack during the day, I am scared. My doctors appointment is today at 3:45pm. I am going to get some ink today and print off a wack of stuff and beg him for some help. Thank you all for your support and PM's. You have all been very supportive. I feel better everytime I come on here and read posts and read your words of encouragment. Bless ya all, Tom |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by E-Double on May 29th, 2006, 8:00am Hang in there Tom!!! You first real public attack can be devestating. I hope you don't have to get used to them and that it was just a fluke. Get tha ink and make sure to demand help!!!! In addition, do something sweet for your bride. Let her know somehow, how very much you do appreciate her and when you do have those periods in between attacks.....kiss her a$$ for putting up with you. That's what I do ;) E |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by MorePower on May 29th, 2006, 8:07am She knows I love her to death. I have and will do anything for her. Just wish she would realize that its the CH's making me short fused not me, her or anyone. Calgon, take me away |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by LeLimey on May 29th, 2006, 1:08pm Tom, Bring her here to the site, we'll help her as well as you. Its a tough road being a supporter and there is equally as much support here for her as for you - we'll welcome her with open arms! Helen |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by maffumatt on May 29th, 2006, 1:29pm on 05/29/06 at 08:00:40, E-Double wrote:
The best advice I have seen in a long time. It probably sounds odd but CH probably saved my marriage, it made me appreciate my wife and all that she has done for me. If someone can stick with you through CH, you KNOW how they Really feel about you. Matt |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by MorePower on May 29th, 2006, 1:58pm My wife thinks or believes that all my problems or anger, or my unlistening issues are not related to CH's. Would someone here explain what CH's do to a person after an attack.....you cna't think clearly, you don't wanna talk, you snap,moddy,etc etc. Maybe if she read others points of view, she would know I truely love her and its not me. Its these CH's!!!!!! |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by Jonny on May 29th, 2006, 2:00pm on 05/29/06 at 13:08:23, LeLimey wrote:
BINGO!! Let her read, Tom.......she will understand more of what we go through if she reads what we go through. Good luck, Bro!! |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by Guiseppi on May 29th, 2006, 2:41pm My wife saved my sanity by finding this site for me. I finally have her reading and even posting a little bit in the supporters corner. It's one thing for you to try and explain an attack, it's something else all together when she reads thousands of these posts with almost identical symptoms. Wishing you luck and some peace. Guiseppi |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by MorePower on May 29th, 2006, 10:40pm Hey ya'll: Seen the Doc today, Went with my amo(documentation). he gave me prescritpion for trex injections, but only 2 doses per refill, which means I have to refill it every 2 days, He did this because if it don't work, its wasted money. I agree if it don't work. If it does, then it will be a pain for the next 40 days of refills. He gave me a prescription for O2. Problem, went o pharmacy, we don't do this. So I called the O2 place, but they were gone for the day. Also doc said 99% sure my benefits won't cover it nor will they probably give me O2 to begin with for a young healthy 34 yr old. He said "Quote" You want what for What???" He said they will give me a real hard time. But he wished me luck anyway. I had another major CH today b4 my doc appointment. I dind't even bother mentioning it to my wife as she is sick of me mentioning it. Why bother? Too bad it happened b4 I got my Imi injec. Ill watch the video again to make sure I don't botch it up when trying to give myself an injection. I don't wanna waste one. Between my wifes disability and my disease, its really taken a toll on us lately, She said some really hurtlfull things to me tonight. I am more worried about going to sleep than anything. Just giving you an FYI, I am dead beat tired. 8 loads of laundry, washed all the comfortores and cleaned the house,zzzzzzzzzzz |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by BlueMeanie on May 29th, 2006, 11:17pm on 05/29/06 at 07:50:34, MorePower wrote:
Welcome to the daylight Tom. Everyone is different. Mine started out only during the day, then everntually went day and night. Sorry to hear you got hit in a bad place. I sure understand the feeling. Hope those shots work for you. If they do, you'll be amazed. on 05/29/06 at 22:40:20, MorePower wrote:
I believe most of us have messed one up at one time or another. Be careful cuz you're right... it sucks to waste a shot especially if it was your last one. If they do work... make sure you stockpile. 2 shots a months is no where near enough as you already figured out. on 05/29/06 at 22:40:20, MorePower wrote:
The 02 supply place shouldn't question it as they are just filling a prescription already approved by your doc. Good luck to you. Vibes that your cycle ends soon. |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by seasonalboomer on May 30th, 2006, 8:35am My doc was also a jerk about the O2. I remember that same puzzlement he voiced. The greatest thing was the O2 people were like, "hey, we have lots of cluster people that we have on Oxygen, everyone swears by it." The knowledge is out there, just apparently not in the hands of those we need to have it in sometimes. Good luck and good job fighting!!!! As for the short temper and general crankiness you cite in your relationship with CH and your family. It's worth being very careful here. Your wife might be partly right as you can slip into the pattern of using CH as an excuse for being "jerky" (or worse). I get a bit withdrawn when in cycle so anger isn't a big issue for me - learning to manage your LIFE with CH is the goal, learning is the key. I can't wait to hear when you get your O2 and start seeing some results. Remember -- Non-rebreather mask is essential at flow rates of 10-15 lpm. Accept nothing else. Scott |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by Margi on May 30th, 2006, 10:13am Hi Tom, You've gotten some awesome advice here, especially from Scott (Seasonalbloomer). Attitude really IS everything when dealing with cluster. Stop fighting it and start outwitting it, if you know what I mean. The hardest lesson my husband had to teach himself was how to stay calm during attacks - it's been HUGE in his survival, Tom. He also has learned to take his cycle in stride and just deal with it as it comes. we have our weapons in our arsenal (oxygen, water, ice, Gravol) and we know it WILL leave - sometimes it takes way too long, but it will (last cycle was 9 months - we honestly don't know how the chronics do it :(). I know - easy for me to say, not being a sufferer but...trust me, supporters suffer to. We wish we COULD take your pain away for you and, because we can't - that's a whole new problem set, ok? Go easy on your wife and give her the gift of cluster education. Please tell her that I don't mind a bit if she writes to me directly - margis@clusterheadaches.ca. Mike and I have been together 20 years and he's been a clusterhead the whole time. There is NOTHING that will match the experience of supporter to supporter therapy - we lead startingly similar/parallel lives, living with a clusterhead and sometimes it's not even worth trying to talk to someone who's never sat on this side of the fence while watching a loved one go throught this hideous pain. People who don't live with a clusterhead simply can NOT understand our pain - so we often just shut down when talking to "laypeople". Nothing she could say could shock me or scare me away, ok? As to oxygen...you will need a prescription for a non-rebreather mask in Canada. And your oxygen won't work without one. Brilliant, isn't that? ::) But, sadly, true. There is another mask available, however, manufactured in the UK that is said to be the cadillac of O2 masks. Go here: www.clustermasx.com. You can order it over the internet. Took us about a week to receive it from Ben - $25 US but our dollar is so close now, it's sure worth it! Go to Medigas to get your Oxygen - we've found they are the most understanding and cluster educated oxygen suppliers in Canada. Also, you WILL get oxygen covered with your insurance company so don't listen to whoever told you you won't. You may have to do some fancy dancing but...push it. I had to get a letter from our doctor explaining why she prescribed it and forwarded it on to Manulife (and now Equitable Life). Once we smacked them on the forehead with the letter, they came around and we are now 100% reimbursed for any O2 supplies. Just a final word of caution and I don't mean to scare you, just educate you.... Imitrex can cause an increase in the frequency of attacks, so do try to use it sparingly. Zomig is another drug in the same class (triptans) and it doesn't seem to have this side effect. It's available in a nasal spray - so is Imitrex btw, and it's apparently just as effective. My hubby will never use 'trex again - next cycle, we're going with Zomig. Oh and ... sorry about the Leafs. As a Flames fan, I intimately feel your pain this year. Hockey is over. :'( |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by clarence on May 31st, 2006, 10:54pm What Margi said...Medigas. When I called them, they didn't really know what I was talking about. Asked how much flow I needed, and I said at least 15 lpm. The girl was audibly shocked. But, they sent it, and they sent it in the tank I wanted it in. They didn't give me a non-rebreather though. The thing is though, they didn't question the script. And, I don't think that they can. Its just likg going to a pharmacy...they just dispense. (No disrespect to all you pharmicists). That week I actually had to go to the ER, and I lifted one from my room. [smiley=bag.gif] Don't tell, ok? Getting my clustermasx next week though. That should be better. Casey |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by MorePower on Jun 1st, 2006, 7:21am Hey guys: Sorry been really busy. Ok, I tried the Imi Injec. Got a Kip 10 after 1 hour sleep, and it was a banger., It took eveything I had to open the box, and inject myself. I cried and pouned my face and prayed so hard for it to go away. at the 20 min mark, I went to the washroom to blow my nose as it is alwasy plugged when I have a CH, and when I walked in the bedroom, Voila, it was gone as fast as it came!. I was so tired, I jsut hit the bed and passed out. My wife noticed how fast it worked, but, Question....I woke up at 6am with a Kip 8, Now my doc said dont use these more than once a day also it says don't take one in less than 12 hours, so I was well under 12 hours. So its 6am and I have a Kip 8. SO 3 advils and harsh coffee and 1 hour later it went away. Question is....the 6am Kip 8, is that the hangover from the Imitrex???? Also another question...The clustermasx....do you need an O2 tank for that mask?I am waiting for my insurance company to call back on the coverage. I can't afford to pay for it upfront. |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by clarence on Jun 1st, 2006, 8:12am The clustermasx is only the mask attachment. You need the Oxygen tank and regulator to go with it. Medigas should provide the tank and regulator. You have to order the mask, (or lift a non-rebreather). I actually have an extra non-rebreather that has not been used if you need it. I can send it to you, or if you are in Toronto, you can pick it up. As for the Trex...well, that is another story. I HATE Imitrex, but I love it at the same time. I hate the way it makes me feel. I hate CH worse. I believe that the recommended dosage calls for no more than 2 doses in a 24 hour period. This is strong stuff, it does crap to you. So, I try to stay within those guidelines. I don't expect a family doctor to understand, as, every family GP I have had has not understood that Imitrex for Cluster comes with special exceptions for the Cluster Sufferer. I don't mean that you can go against medical advice. I do mean that the Neuro has always given me different advice from that of my GP, and told me that it is alright because he knew more about the condition. For example. Last time I went to the GP, he FREAKED that I was taking 2 injects a day at times. He said that you aren't supposed to take more than 5 doses per month, and made me see the Neuro that day to sort this out. Neuro blew it off, and said, well, if that's what you have to do, do it. I don't think that this means take as much as you want. I think it means weigh the consequences. I have taken 2 doses within 12 hours. I have taken more than 2 in 24 hours. I will say that I try not to take the imitrex as much as possible. I hate it. It is painful, and it alters the way my clusters occur - meaning my pattern gets screwed up, and it isn't always a sure thing that it will abort. The imitrex doesn't work the same for me as it used to. But it is what I have at the moment. Oxygen isn't working all that well for me (hopefully the clustermasx will change that). Zomig nasal worked for a while, and then stopped. It is important to remember that there are a lot of things for you to try yet. Oxygen and Imitrex are only abortives, and only a couple of them at that. You haven't even started with the prevents. Have you asked the doc about prednisone, verapimil, gabapentin? Also, think about trying out Kudzu - it has helped a lot of people (check the medications and therapy board). Finally, check out http://www.clusterbusters.com - which has benefited many people greatly. It is a long road my friend, but you got some traveling partners now, who know the difficulty. This is the place to be! Casey Clustermasx (http://homepages.nildram.co.uk/~tritech2/clusterx/index.html) edited to say: 1) I am not advocating overdosing on Imitrex. Not at all. This is serious stuff, and should be respected. 2) DO NOT MIX TRIPTANS. This means that no matter what you do, do not take different types of triptan meds within 24 hours of each other. ie, do not take imitrex, and then zomig within 24 hours of each other. This can cause serious complications... |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by E-Double on Jun 1st, 2006, 9:08am Imitrex tip! |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by Margi on Jun 1st, 2006, 10:00am on 06/01/06 at 07:21:56, MorePower wrote:
Tom, Medigas charges us $36.00 for a tank full of oxygen that will last my husband through 30 headaches (it's called an S tank, 4 feet high, heavy as a bugger but they will deliver). We own a regulator (thanks Jonny), but I know they do rent them as well for a reasonable rate. Non-rebreather masks are about $4. Oxygen isn't expensive. Don't wait for your insurance!! Just go get a tank! And those little E tanks will only last you for 3 headaches. The only time we use them is if we are travelling. Their $19 a tank at Medigas. Take generic gravol before bed, as well. It can get you through the night without any hits. It doesn't let you reach REM sleep and that's when cluster attacks hit you. Shoppers Drug Mart has this available in generic form but you have to go to the pharmacy and ask for it. |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by Bob P on Jun 1st, 2006, 11:59am Usually a lot of high flow regulators on E-bay. I picked up a 25 lpm regulator with 2 non-rebreaters for around $25. |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by MorePower on Jun 1st, 2006, 9:29pm Wow, great info guys. Just awesome. I tired trex now for 3rd time. I have had no real side effects other than being really tired and drowsy. Don't feel funny per say.My arm is a bit sore from where I hit it where the needle is but thats to be expected I guess. Thank you so much. I just pray for none tonight, I had a Kip 9 at 8pm, my 7 yr old was great, comforted me the whole time, got me water, rubbed my back and said daddy you be ok. Tore my heart in half. What a tropper. |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by MorePower on Jun 2nd, 2006, 5:39am I digress, my attacks are more frequent. I am getting two Kip 10's per day now instead of one Kip 10 and a Kip 4 to 8. All both in less than 12 hours. 1st one I take trex, second one I suffer though. IS this a side effect of the trex? |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by E-Double on Jun 2nd, 2006, 6:37am It could be. Some report an increase in frequency with the use of triptan. you have to pick battles. Fight for the Gas ;) |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by clarence on Jun 2nd, 2006, 2:27pm Hard to say man. Cluster beats you up, comes in a pattern, and when you think you got it down, the damn thing switches up on ya. Casey |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by cherylc on Jun 11th, 2006, 1:09am Hey there...I'm also from ont. and was reading through your posts. I had a hard time but found a doctor to prescribe O2 and then have an O2 supplier. Follow the directions everyone has given you on this site...keep trying and you will find something that will help you cope. Was wondering how you are doing? |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by MorePower on Jun 21st, 2006, 12:49am hey, been a few since I have been online. Just been pysically and emotionally drained. CH's are draining me. I am having a KIP 6 now, Still able to type. Went to my Neurorlogiest today. She said just increase your Topomax, Now I am on 75mg per day she said increase 25mg per week upt to 400mg per day max. But reverse and cut back if side effects start. She gave me nasal spray presecription for Imitrex. Imitrex works great but they come back 10 fold. I got a Kip 10 thursday and had 5 KIP 10's with 12 hours after. All over 1 hour long. So I only got relief once out of the 6 attacks. If I use no Imitrex, I get maybe 3 attacks per day max. Its a toss up. If I am in public and have a severe attack, I will use it, or if its a Kip 10 and I am in a dead sleep and I wake up and want to die, then I take it. Thats the only times. I can't afford oxygen. Since I am Chronic, the cost alone are too high and even though insurance covers some I can't pay upfront. I just can't. It just won't happen. The nero doc said they may or may not ever go away and I may have them for life. This was a tough pill to swallow. Sorry gotta run, I am sooooooo tired and sore in my face, I need to crash. tyyl :( |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by MJ on Jun 21st, 2006, 1:18am Mo pow Sounds like the imitrex is causing more problems than good. If I read right you went from 2 attacks per 24 hrs to 5 plus once you started using the trex. If only one in 6 hits were relieved then maybe the trex created only 4 extra hits. My opinion is call the trex med an experience and try something else. The money saved not buying imitrex will get you a lifetime supply of oxygen down at the local welding gas supply store. Its what we all do. keep on trying untill you find what works for you. Imitrex doesnt work for everyone and neither does oxygen but it sounds like the success is higher with oxygen for about 70% of clusterheads. Neither one works for me. If you still cant get oxygen try repetitive excersize and deep breathing, for me its pushups. this can have similar effects to oxygen through a mask. |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by Margi on Jun 21st, 2006, 10:12am ooooh, I hate imitrex!! Damned if you do, damned if you don't. It ALWAYS doubles the number of attacks for my husband. Can you ask your doctor to give you Zomig instead of trex? It, apparently, doesn't have the same frequency increasing problem. Why haven't you gotten oxygen yet? |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by MorePower on Jun 23rd, 2006, 8:52am I can not afford it. The amount of oxygen I will need even though I will get eventually remebursed I don't have the cash to cover it. If ya may have read in some previous posts my wife is disabled and going down hill fast. We are on a seriously tight budget. I am actually now going to look into disability for myself since I am chronic. I am going to see my doc today. There is no way in heck that I can work. If I get an attack at work, I am screwed, If I have attacks before work,like 10 min before I am screwed or the night before I can't go into work on no sleep, MY job is extremly dangerous. The laws in Canada maybe a bit different. I am not sure if it is a know disability since I am chronic. But there is no way that my employer will sympathisize or my co-workers sympathisize if I start wigging out(as I call it) at work. They will send me home and that will happen only a couple times before I get fired. Right now I am off on stress leave and they know I have this disease, the one nurse at my work where I pick up my cheque is always asking me"when you coming back" I say I don't know,its up to my doctor.... Unless I find a job that pays me $25 hr like I make now and full benefits like I have now and that sympathisizes that I have this disease I am screwed. I guess unless I can find a job where the employer says ok , have an attack, take 1 to 3 hours off for your attack, then go back to work after your attack. I'd be ok with that, but then what about my off work attacks, when I am physically and mentally exhausted at home? I have been more concerned in the last 6 months of taking care of my wife and son and putting myself on the back burner. I guess I need to look after myself to help them too. Its my nature to think of others especially the closest to my heart before I think of myself. I guess I will see when I go see the Doc today what he says. One thing I do know is that if I go on permanent disability, that I won't make the money I used to, and our lifestyle will have to change. We are already scraping. We went from making $100,000 yr with my wifes busniess and my job to $30,000 yr now because her business went belly up from the accident and I only get a small percentage while on comp. Sorry, I went on, felt I had to talk today.....any thoughts? |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by Margi on Jun 23rd, 2006, 1:01pm Ok, first of all - you're not chronic and you won't be until you've been in cycle 12 consecutive months. I see from your first post that you're 12 months ends some time in July. Close, but not chronic yet. Just a technicality I know and splitting hairs but... Second, oxygen is probably the most affordable of the treatments out there. $38 will give you a 4 foot high tank that should last you through 30 headaaches. You can get the regulators on ebay real cheap, or you can rent. Masks are about $4 at Medigas as we've said earlier in this thread. You WILL get reimbursed for every penny of it too, if your health insurance is reimbursing you for imitrex (far far FAR more expensive than O2). Or, if you have any friends who are welders, maybe you can talk them into getting a tank for you. My husband has even found relief just huffing it through the nozzle from the welder's tank (the O2 nozzle, NOT the acetylene nozzle! :o). OR, you can go to Emerg and ask to use theirs. Just please try it before you totally discount it. Third, Gravol can get you through the night unattacked. It's available at Shoppers Drug Mart without prescription and in generic form - but you do have to ask at the pharmacy counter for it. It's about $6. Ice, well ice is free. Laid on the back of your neck at onset of attack can really keep the pain down for you. Water is free too - drinking ice water at onset can also help or you could try the water treatment (but remember to take a multi-vitamin so you don't wash out all the good stuff). It's in a button to the left, here. Imitrex is obviously causing you to have more attacks than you would, normally. And, finally - go read Scott's Cluster Sufferer's Manifesto: http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=chspecific;action=display;num=1151077676 Attitude really is crucial to your survival. Going for total disability is going to be a huge amount of paperwork and hassle, if you ask me. To my knowledge, cluster isn't yet recognized as a full disability in Canada. If you're willing to go through that paperwork to get that started with your insurance company (or WCB), why not do the paperwork to get oxygen covered? I do benefits administration here at work and it was one letter from our doctor and we were fully covered for oxygen. We've even switched carriers so I know that at least Manulife and Equitable cover oxygen for clusterheads. I can't imagine why any other Canadian insurers wouldn't either. Go make friends with your Medigas guy. They let you have an account there so you don't necessarily have to pay up front. So, you can go get your O2, submit your claim, get reimbursed, then go pay Medigas. AND, they deliver to your doorstep. Like I said, go read Scott's Manifesto. |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by maffumatt on Jun 23rd, 2006, 6:15pm Stupid question maybe......Margi what is Gravol, I have see it in several of your posts. It says its a motion sickness drug, but does it act the same as melatonin? How much do you take and is its use on CH documented pretty well as sucessfull? How does it work? |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by Margi on Jun 26th, 2006, 10:15am Matt, no it's not a stupid question! :) Gravol is the same as Dramamine. I don't think it's marketed as Gravol in the states though - we have both here. It's an anti-motion sickness drug that promotes sleep as a side effect, but doesn't let the user reach REM sleep which is where most nighttime clusters occur. You can only use it for a maximum of 7 days though because REM deprivation sets in and that can be scary too. Dosage depends on body weight - it's described on the package. My husband is 5'7" and about 160 pounds. He takes 2 or sometimes 3 at bedtime and can get through the night unattacked. As to the success rate, it works surprisingly well - for a while. Like most other cluster "meds" though, the beast can morph and develop an immunity and it can stop working for some folks. (It's done that for my boy at times). But, at the peak of a cluster cycle, sometimes 3 or 4 nights of uninterrupted sleep can be golden. Same with benadryl - benadryl will give Mike a few nights solid sleep as well. Any port in a storm, right? ;) |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by maffumatt on Jun 26th, 2006, 11:25am Thanks Margi ! |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by MorePower on Jun 27th, 2006, 7:21am ok I will try next week with the oxygen, My time has run out for my stress leave and cluster attacks (short term disability) and I am waiting to find out in the next couple days if theya re going to extend it again. I do have a serious question that I would like somethought put into and hopefully a Canadian to respond to even though its a US website. I don't wanna jump ship over to ch.ca because I love you guys and you are so helpful and nice. First, I do believe I am chronic, because I am less than 12 months away from being chronic like 2 weeks away. Second that have been getting worse and longer( and I am not complaining, just stating the facts ma'am). Third.....here is my delima If and when I do return to work, how in the world will I keep my job. Seriouslly, they will only accomdodate me so much. I am looking at it from there point of view and mine. If I have one or more attacks in the middle of the night and they are severe, I am screwed, I am exhausted mentally and physically and unable to work that day. If I have an attack 10 min leaving before work, I will be late, again, depending on severity and length of attack. Next what if I have one or more attacks at work? They will send me home, to the nurses station for what? How many times before I become a libility. First, I work in a factory where it is completly unsafe tohave an attack. I work with steel, that moves very fast, fast moving lift trucks, very noisy and very hard work(not complaining, its a good job). You have to be 100% alert for safety, provide 100% excellent work ethics(well I do) and be on your toes 100% of the time and work fast to put out a product very quickly. As well, the fellows I work with could care or less if I drop to the floor and start balling my eyes out and wigging out(as I call it). They will laugh at me and say go home you *&^%*y! Thats factory life if anyone can relate. So what in the world am I supposed to do. I went o Police College and gave up a career for my wife(se didn't want me to be a cop), so I went to a factory which isn't my career of choice to provide for my family. Now I feel like I am disabled. I can't get a full night sleep, I am exhausted most days. Etc, you all know the routine. What is a guy to do? I asked my doc who would employ me?? He said, I wouldn't.... I asked him if I could find a job where the employeer was sympathetic to my disease and for every hour I missed from an attack I would make up. But who would hire me???? He said fat chance. My doc wasn't being rude, just realistic. He also said fat chance get disability at 34 yrs old as they will fight you for it. I am just trying to figure out, how am I supposed to work when I get so many attacks. I have no idea when I get an attack, how severe and how long it will last? Not to mention my wife is going in a wheelchair from her car accident. She can now only walk no longer than 10 min. I like working, I am not a lazy guy. Never have been. I don't know what i am going to do. If any Canadian here is familiar with applying for disability please help me out. I am on short term disability now. I am assuming the next step would be applying for long term disability. I have seen a Neurologist, And she confirmed what I have. My doc also set up an MRI for Nov, to rule out a Brain tumor. I am doing my best to try to fight this. We are trying different meds and increasing doses etc to reduce amount of attcks etc. I am not giving up hope. Any help of words of wisdom is appreciated on what to do., thanks and God Bless |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by chewy on Jun 27th, 2006, 7:34am Quote:
Not really. All sufferers and supporters are welcome here. Quote:
By getting on an effective preventative and always having access to an abortive. Have you tried melatonin for sleep? |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by Katherinecm on Jun 27th, 2006, 8:22am on 06/27/06 at 07:21:03, MorePower wrote:
I also have been on a long leave of absence because my job requires 100% focus. I have yet to figure out a preventative/abortive regime that even partially works, let alone allows you to focus at 100% without interruption. My dad, who also had chronic CH, worked either for the local police or sheriff's department for most of his life. I am wondering if it's possibly not the ideal job for someone with Chronic CH (unless interrupted sleep schedules is a trigger for you). I mean, he didn't get attacks in times of stress, when it was low stress time he had plenty of time to take a break because whatever he was doing during low-stress times didn't require 100% focus. Because of the level of stress during work he often got hit right when he came home and relaxed, he would be out of commission for 45 minutes or so and then ok for most of the rest of the evening until about 2am. He worked in a fairly rural area of North Central Florida, so it may be very different in cities, and perhaps in Canada law enforcement works a little differently, I don't know. To me, there is very little joy in life with chronic CH, and it is especially stressful when you're doing work that you don't want to do. You have to do what will give you joy, and you are obviously an honorable man who wants to work and support his family. If I were in your place I would talk about that with your wife- the reality is that working in a factory with CH may be MUCH more dangerous than working as a police officer. Perhaps if you lived in a small town where there is little crime she would feel much more comfortable about having you do the job YOU want to do. Katy |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by MJ on Jun 27th, 2006, 11:38am More power A couple tips I have learned over the years. First and foremost is that dealing with CH is all about attitude if one is to survive frequent hits and still be productive in society. Maintain a positive attitude. Difficult at times I know but essential to living. Take care of yourself or you cant care for others properly. The mind is the first line of defense for CH and especially when you have not yet found a proper treatment. It took me 30 years to find relief. Read everything on this site related to CH. Second Wake every day at the same time, if you have a schedule allow the time to have a hit before proceeding. This may mean getting up 3 hours before work so you can accomplish the hit. (CH learns to some extent as it appears regulated by the bodies clock) Work is good it distracts you from the frequent pain. Work also is one of the great preventives for CH often while being stimulated wholly the clock shuts down the CH hits. Eat properly and at the same times every day. Sleep is overrated. Even if little sleep is attained do not readjust your schedule, stay up and go to work. Productivity may suffer but you will suffer less as well. Maybe for me only. Use denial of CH as a tool. The moment a hit is over I refuse to recognize it and get back to life no matter how weak I feel. Its sorta like being late in a traffic jam, relax you will get there. Accept the fact that delays happen again and again. Third. due to sleep issues find alternate ways to be stimulated between the hits, ie.. energy drinks or pills, black strong coffee, etc.. In my cycles sometimes lasting years I'm allways hit from 8-12 times a day at the level 10 pain. Doesnt leave much pain free time and for months on end I may get less than an hours sleep at night but most every day I go to work and attempt to accomplish something. |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by MJ on Jun 27th, 2006, 12:16pm Having said the above. I am self employed and own the company so its difficult for me to be fired or reprimanded. I however like others have hundreds of bosses instead of just one or two and can be fired from many jobs instead of just one. Iknow what its like in a steel plant. We have contracts to maintain and service the process cooling and machinery for several large laser and plasma machines cutting up to 3 inch plates in one of the larger steel companies in the midwest. My company also maintains air quality and conditioning and assists with the OH cranes in emergency breakdowns there.. Its a tough and dangerous place to work like you said. The company would be lax in allowing you back in the plant where you may endanger other lives beyond your own while being hit. If I were you I would see if your employer cant place you in a less dangerous position temporarily as it would be less expense than paying disability for them. Maybe shipping, maintenance or clerical work of some kind.. Ask and you may be surprised at what they can offer you. The front office is different than the plant. Provide them with simons letter to employers. someone can provide you with that link |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by Margi on Jun 27th, 2006, 1:09pm get your doctor to write a letter for you describing your disability and inability to work. Have your Benefits Adminstrator file an LTD claim with a copy of the letter, for you (or STD maybe). Sleep deficit is getting a lot of attention in our media right now so maybe you can play that card, I don't know. Please try another abortive than Imitrex. Obviously you've gotten worse since using it. Please try Zomig instead. And ask for a preventative such as verapamil or lithium, or both. Get some oxygen. Get some gravol to get you through the night. And, uh, it's not considered "jumping ship" to come post on our Canadian board, by the way - we're all part of the same family. Maybe, just maybe you might find a sufferer in your area who can offer you some support. These are not competitive websites, the cluster websites. We're all in this together. The only reason the different ones were formed (OUCH UK, OUCH Canada, etc.) were to give more local support. You've been given a lot of really good advice here in this thread. Please take some of it! I don't mean to sound harsh but there comes a point when you do have to pull yourself up by the bootstraps and take a proactive role in your treatment plan instead of just sitting back on your heels and allowing it to overwhelm you. Again, I'm not trying to be mean here, just that my family is living proof that the sitting back on your heels approach doesn't work in the fight against cluster. Trust me, if this beast thinks it has a chance at winning you over, it will. If you show it that you have weapons in your arsenal and that you intend to use them, it buys you time to catch your breath and work towards setting the beast back on IT's a$$ for a change. |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by LeLimey on Jun 27th, 2006, 1:43pm Margi you said what I was going to say! LOL I'm a member of OUCH US, OUCH UK and OUCH CA and I'm proud to belong to them all - and dear old ch.com of course. I wouldn't consider giving up any of them or the support I give/get on them. I do understand what you're saying though because when I first found THIS site I was reluctant to go anywhere else, I had everything I needed here. I joined OUCH UK though and I've never regretted it, I've been eternally grateful for all their help and that of OUCH US and OUCH CA too. Its to all our advantages to have the best network we possibly can - don't discount any part of it! :) |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by BlueMeanie on Jun 27th, 2006, 7:40pm Hi More Power, I haven't read through this whole thread, but since nothing seems to be working for you. (Hope the 02 does), have you thought about checking Clusterbusters.com ? Imitrex works for me so I've really never attempted the Clusterbusters. If it didn't, I'd definately consider it. Looks like some good advice posted. Keep the faith, something will work eventually. Take care & PFDAN to ya. |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by MorePower on Jun 29th, 2006, 8:31am Hey Ya'll. Well yesterday I went to the Doc, and the Prick yes I said prick said, you have had 6 months off thats long enough, go back to work. I said no frickin way. My attcks are getting longer, more sparatick and closer to KIP 10's and this week I have had to KIP 5's in the left side of my face which scared the fudge out of me as I heard of people having it eaither switch sides or having it on both sides of the face. The moron did agree to a MRI for November. The doc said to my wife and I last Friday that he is sick and tired of dealing with me and my wife. In Ontario there is probably the biggest shortage of Doctors anywhere, they all go State side. With that being said, I am looking for another Doctor. I have had this guy since I was 6 yrs old. He only started giving me grief when my wife got in the accident and we got a lawyer. Anyway, my shrink agrees with me and said no way, you should not go back to work and is going to write a letter for me today so I can get off work to try to get meds in me that will reduce or control these attacks. Last Friday I had an attack in my Docs office with my wife and he didn't even blink an eye. I hnoestly beleive he thinks I am faking it to stay at home and care for my wife. Which is abovery *friendly* personel BS because I am only getting 60% income. Like seriouslly would anyone in the WORLD rather be at work that suffer from CH's? Obviouslly not. Like anyone would fake a CH. His atttitude disgusts me. Its almost like he doesn't want to treat me anymore. I have had two specialist including a Neurologist diagnose me with CH's. A shrink agree I am suffering and know Iam trying to fight. Whats the problem here. I'd give anything never to have an attack again and be normal. Sorry, I am jusy angry today. I need to get a new Doctor, plain and simple. Maybe then I can try to get a game plan that will get me on the right track. Anyway, I do appreciate eveything you guys write, don't get me wrong, I do listen to your advice. I do take the advice. Its hard. My wife is very rapidly going down hill fast and its harder pill to swallow than my CH's. My own folks don't even ask about me nor my wife unless we tell them, My x- wife doesn't show me respect or control my son when he is there which is the exact opposite when my boy is here. We are in financial trouble. I just have alot on my plate and I get depressed a bit lately when I have full blown attacks in public which been happening alot lately and when I walk away I just cry because people just stare and laugh or point etc. It just gets to me sometimes. I am trying to stay strong foreveryone. I am exhausted. Calgon take me away. :'( |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by MorePower on Jul 3rd, 2006, 10:05am OK, now I am stumped, 2 days of attacks all Kip 9's and 10's every 2 hours with 30 min breaks during the day and 1 during the night. WTF????Then the next day only 1 Kip 10....I don't get it. Why only 1 the nexy day,. was my body and brain so exhausted that it coudn't take anymore??? I lost count after 20 attacks. >:( :'( >:( :'( |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by chewy on Jul 3rd, 2006, 10:09pm Your chronic? Post upon post of your misery and your chronic ? How can you be chronic and have no pain management skills or treatment knowledge? Something wrong with this picture. |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by Sean_C on Jul 3rd, 2006, 10:12pm Because he's a whiner, thats why. Poor poor me ;;D Maybe this kid should take a walk through the halls of the Shriners Burn Center and see what issues really are. Get a job and stop trying to beat the system. Deal with it like everybody else, its called life. Sean.................................... |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by MorePower on Jul 4th, 2006, 1:33am thanks Chewy and Sean, I appreciate the support. I must have missed my self esteem somewhere inbetween putting my 29 yr old wife in a wheel chair or maybe it was when she wants to go in a mental institution. Ya, maybe ur right. I should get my head out of my ass and get back to work. Good thinking not a very nice person. I highly doubt you have had over 20 Kip 10's in 2 days but hey whos counting. Your perfect and know everything. As of Today. I am 1 yr Chronic, I had my calendar wrong. Today I am 1 yr Chronic. Happy birthday to me. |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by E-Double on Jul 4th, 2006, 3:56am Dude, know this........ it is not the pain that will wreck your life. it is the depression, the anxiety and low self worth that will develop when we don't get a kick in the ass. it's pretty humbling when the white noise your newborn is most accustomed to is the sound of an O2 tank being sucked on by her daddy. move on and feel good........you need to for ypur wife! that will give you more power! |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by Jonny on Jul 4th, 2006, 5:07am I was chronic for 30 years and worked nearly every damn day. |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by LeLimey on Jul 4th, 2006, 5:46am I'm chronic. I'm now a single mother with three kids of 12, 11 and 4. My four year old is a diagnosed clusterhead too. I can't give up. I have no intention of giving up. Life between hits IS good - because I make it so. I also have a crappy bone disease, non responsive coeliac disease and I've had - and survived cancer. I'm not any worse off than a hell of a lot of other's here too, alot better off than some in fact. Life is what YOU make it. You've had some good advice over the last four pages, some very caring posts and very motivational ones too. You've reached the point now where you have to make your mind up to be pro active about this or not. Your choice. Not mine, not anyone else here's choice. Just yours. CH isn't going to go away. Nor is your wife's condition by the sound of things and whilst I do feel for you I do think it's time now that you stop finding excuses as to why you can't follow suggestions and make some effort. This thread has been going for over 6 weeks now. Its time it stopped. Either start a new one with a positive theme or don't. Your choice once again. I think you'll find patience is wearing thin on this one though. |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by Sean_C on Jul 4th, 2006, 9:40am on 07/04/06 at 05:46:51, LeLimey wrote:
See this attitude MP, thats what you need, if you tried to pity her she'd kick your arse. ;) Its a do it or don't do it kind of thinking. BTW this asswhole prays fo alot of people here including your wife, which I will continue to do. Get on a program and do what you have to do for your wife, no-ones knocking you there. Your a good man for standing by her. Look into alternatives medicines for your CH if nothing else works. Sean.................................... |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by MorePower on Jul 4th, 2006, 10:55am Well I just found out that my Doc thinks I am faking my CH's. He told the Secritary that my wife and I are a pain in the ass to him,We were in the other room and we heard it clear as day. Fine then he wants us to find another Doc, so be it. I had an attack in his office and he thought I was faking it. I am not sure if I posted this b4, sorry if I did. He won't let me try new meds. He has me on topomax 100mg and other meds for diff stuff and imitrex. I tired 02 at a firehall yesterday, while visiting a friend that is a fireman and had an attack and unfortunately it didn't do anything and I wished it had. Do you think I should try 02 more than once? I am sorry if I seem a little frustrated. I come home everyday to find my wife more depressed and less of a person mentally and alot less physically. The accident sucked the life out of her. Its wearing on me because I am trying to be strong for her. Every darn appointment she goes to(physio,shrink,therapy,councelling,doc,etc), she comes home worse, more sore and crying) because she is not getting better and worse. She tells me she isn't happy in life and feels life what it was supposed to be or what she thought it was for a 29 yr old. I am sorry but thats a hard pill to swallow. I can't take her anywhere, she is stuck in the house except for appointments. She has become recluse, doesn't want anyone to see her, doesn't want to speak with anyone on the phone(friends,family etc). She has severe problems. No matter what I am going to stick by her. I married her, I love her, thick and thin, through out. If ya ever saw the movie "The Notebook", thats very similar to me how I stand beside her. With that being said. When I wig out after my attacks, and I am done caring for her at the end of the day, I am physically worn out. Because I have to care for her 24/7. She is unable to do anything, except dress herself. The insurance co, is fighting us and don't wanna pay for squat. If she had home care, that would help me out immensly. I would love nothing more that to get ahold of these CH's, go to work( cause I do like working to provide for my family as it is a sense of pride for a man to do this) and move on with my life. I have a doc that don't wanna help me out, he gives me wife the gears. I am just tired and frustrated. Not to mention my psycho x-wife who doesn't give 2 -poops about my son. Sorry I had to rant. I guess this will be the last time, I will express my frustration on here as no one wants to listen or except the fact. So bid ya guys good luck and a stong fight for you as well and I hold no hard feelings against no one. |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by chewy on Jul 4th, 2006, 11:43am Quote:
Time for you to stop wallowing in pity. Get a new Doc. |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by Linda_Howell on Jul 4th, 2006, 12:24pm I just have a few things to say and then I will butt out. You have been here since Dec. of 05. Surely in that time you have been able to read all the good links on preventatives, abortives, coping mechanisms and have read peoples stories on how to deal with employers, Ins. etc. I've been chronic since 1987. I've only had a few days where I've gotten on the pitty-pot and said why me? or other non-productive things. There are always new people finding us here and a few who got a swift kick in the rear for twisted thinking. They came back after licking their wounds thanking us for doing so. And then they got on with their lives. No one here is trying to be cruel or malicious in what they're saying to you. They're giving you a wake-up call. No. Go get another doctor. ;) Linda |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by Margi on Jul 4th, 2006, 2:07pm Tom, you've posted here and on the Canadian board and, to most of us, it doesn't seem like you're listening to the wonderful advice you're receving here. Jonny and Linda have posted here to you. I've met both of these people in person, I've hugged their necks in fact. They are just a sample of the quality of people that frequent these cluster websites. Each person here deals with their own private hell. I've sat with Linda while she's had a cluster attack. I've seen Jonny's eyes after he's had one. This cluster pain is inhuman. Jonny and Linda are true warriors and both are living proof that cluster is survivable. They've both faced adversity in their lives because of cluster. But have either one of them EVER given up? Not a chance. I'd be willing to lay money too that neither one of them has ever claimed disability - you know what they did instead? They each started their own business and became self-employed (same with my hubby). Yes, cluster does interfere with work - that's just one of the side effects. They are both very successful and productive people as a result. Life gave them lemons, so...guess what. They made lemonade and...know what? You can too, Tom. Your pain is no different from anyone here. Why are you going to be the one to let it get the better of you? Is that going to make your pain go away? Nope. All it will do is undermine your self-esteem and add to your problems. I just don't understand why you're not taking the advice given here. 1. Obviously Imitrex has made you worse - it's known to increase frequency of cluster attacks. Stop taking it! Get Zomig instead. This has been repeated to you more times than I feel like counting, Tom. Why are you not getting this point? 2. You say you tried oxygen at the firehall and it didn't work. Did you use a non-rebreather mask? Was the flow rate higher than 8 litres per minute? Probably not. It was probably through those nose cannule thingys that don't do dick, and it was probably about 4 litres per minute. Should you try oxygen again? Yes, damn straight you should and you HAVE to do it right or you're just wasting the oxygen. You have to start it at the first sign of attack, Tom. Not after the attack has started. 3. Why haven't you asked for a preventative like verapamil or lithium? Topomax has a lot of nasty side effects and, while it does work for some, it's in no way a cure. 4. You say you're on "other meds" for other stuff. WHAT other meds? Could these other meds be adding to your problems? 5. Here's the link to Social Services in southern Ontario. http://www.info.london.on.ca/cat.asp?cid=57. CALL THEM TODAY TO SEE IF THEY CAN HELP YOU FINANCIALLY. 6. I hate to even say this because I don't know the real story here, but you can talk to the Ontario Medical Association if you're disastisfied with your doctor. Can you not go to a medi-clinic and simply ask for a referral to a neurologist? You've been given the name of some great doctors on the Canadian website. Can you not call one of them and ask how you go about getting seen by one of them? I'm posting this on the Canadian site as well, Tom - just in case you're not reading here anymore. Margi |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by Linda_Howell on Jul 4th, 2006, 10:31pm Please let us know if he does post on OUCH CA Margi. I'd really like to see this guy succeed :-[ |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by BarbaraD on Jul 5th, 2006, 7:21am Mo Pow, I can empathize with you. My husband had a stroke in April of 97 -- I went chronic in July. It's been an upheaval battle from April of 97. I went thru the depression, the anger (and the other stages). But finally got to "acceptance" and have been doing a lot better. I have CH, I'm chronic and there's not a lot I can do about it, so, as Margi said - I make lemonade. My husband died in Oct (another shock), but I'm still here, still having hits daily and keeping my four year old grandson about 12-14 hours a day and running a business. This is NOT what I had planned for my "golden" years, but it's what I have. I take melatonin at night to get thru them (works great) and I deal with the pain during the day hits. O2 and REd Bull are staples in my house. I'm an accountant so I have to focus and have learned to do that. and YES, I have wanted to give up a few times, but something always came up so I kept going. Now I lead a fairly normal life (for a chronic CHer). I LEARNED NOT to let CH control my life. I agree with the others on here -- Attitude is everything. I found this website in 98 and have been here ever since -- it's my lifeline. I have a lot of friends on here and when I need to whine, I do it by pms and then it passes. Find another doc and get some preventatives. Get melatonin or dramamine and get some rest at night. It helps you get thru the day. Get some coffee down at the first sign of a CH (I drink it by the pot -not the cup) or some REd Bull. Sometimes this will abort an attack. Get an abortative for those times the coffee doesn't work (I take ergotomine - Cafergot). But your attitude is everything. I'm not being mean to you -- just realistic. You've got CH - learn to live with them and deal with them. Hugs BD |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by Katherinecm on Jul 5th, 2006, 12:44pm I notice that those of us on disability haven't been responding much. So at the risk of transferring the ire to me, I will. I'm still willing to listen, MorePower. I am also not capable of doing my job when I have this many attacks. Other jobs I guess I might be capable of at this point don't pay as much money as my disability or don't have health insurance or don't give lienency to take breaks during attacks or something else, and at the moment my health insurance isn't negotiable, I'm sticking with my leave of absence for now. I question that ANYONE is capable of doing anything other than experiencing the attack when they are having KIP-10's. If they are, it's not a kip-10, that's all there is to it. It's not about pain management, it's about the level of pain. Certainly after a year of severe attacks you would hopefully have an increased pain tolerance and be able to handle things better. But even then, it's scary when the number of attacks increases dramatically and you have yet to figure out that when people here say that you can never expect the beast to do anything but change, it applies to you too. Your increase makes me think that stress may be a trigger for you. A good friend of mine also has CH, and he quit a stressful job recently and his number of attacks has decreased dramatically. He's certain that stress is a trigger for him, and as you have clearly had plenty of it recently you may want to try things that relieve stress- things like hard aerobic exercise (running), yoga, prayer, meditation. And like many people have said here, you may want to find a different job that you are capable of doing right now. Go back to being a cop. At least that would give you some satisfaction in some area of your life. If that's not possible at the moment, then stop stressing about it and be at peace with your decision to not work right now. Despite what everyone here seems to be saying, that's okay too. You just have to decide to not be a powerless victim here, to take charge and be responsible for your own decisions. Your situation sucks. But the worrying thing to me is that you seem to be in despair about it. That is what people here are trying to "snap" you out of. The thing is, it's rarely possible to snap out of severe depression. And depression is increased when you feel powerless. So learn. Stop stressing out about the things you can't change and work on the things you can change. Get treatment for the depression, for one thing. You can't take a magic pill and make the attacks stop, at least not at this point. You CAN do some things that in combination slightly decrease the pain. Try a low-fat, low-calorie diet that might decrease inflammation. Take nutritional supplements like melatonin at night that might help you at least get some sleep. If that doesn't help increase the dose, try a different one, and possibly combine it with Benadryl, which will give you at least 3-4 hours of attack free sleep. Since your pain seems to manifest in ways similar to mine, ask for Lortab (hydrocodone) to take when you feel a really strong attack coming. O2 does nothing for me, Imitrex may knock the pain down a point or two but causes awful rebounds. Lortab will knock the pain in half and calm me down enough that I'm not so upset about the pain anymore and don't feel powerless. Obviously this has implications for driving or other matters of concentration, but without it I would be in such deep depression I don't think I would be able to stand it. And before someone who has never even tried it before says it's useless or causes rebounds or whatever, you're wrong. An ER doctor who suffers from CH too told me it's what works best for him, just to try and limit it to the absolute worst attacks so you don't end up needing more and more or getting addicted. So far it's what works best for me too. Taking one with a redbull makes it work 10 minutes faster. Taking two doesn't help any more and only seems to cause nausea and itching. You might be amazed at how much better you feel when you can manage 4 hours of sleep at night and have 3 Lortab a week for your worst attacks. It will give you 4-6 hours of tolerable pain, and though you are drugged it does help your psyche immensely to know you have the power to decrease the pain of the worst attacks. Tell your doctor he is clearly uneducated about chronic CH, and that he is being a pain in your ass. Tell him to either get you in to see a specialist or get off his ass and take the time to learn more. Even in a managed-care system, he works for you, not the other way around. Doctors are not gods. They're just people who took the time to memorize a lot of information about the body and a few medications, often because they are insecure and get all their self-worth from knowing more information than others. When you have a rare condition like chronic CH, it's most important to find a health care provider who is willing to do their job, to listen, and to help guide your decisions about your own health care. That's why it's important that YOU become very educated about CH and be actively involved in every decision about your own care. |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by chewy on Jul 5th, 2006, 1:02pm Quote:
It's all about pain management. |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by E-Double on Jul 5th, 2006, 3:19pm on 07/05/06 at 13:02:48, chewy wrote:
I would have to agree. PM does not necessarily refer only to meds. Coping and learning how to deal with ones disability is a major part of pain management. It is ok for someone to not be able to work. IMHO it is not ok to give in. I only worked about 7-8 month out of the year in 2004.l... I took a major hit to my ego yet because of my job (self employed at the time) I was able to work minimally anmd still bring home the $$ I did get my act together and felt a much more fulfilling existence. That is what it is about. Quality of life! Is it not? I do not judge! I do feel that we need to take back our lives! Be well |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by Linda_Howell on Jul 6th, 2006, 12:05am This person has stopped listening. ::) |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by MorePower on Jul 6th, 2006, 9:01am no I haven't. I was at the hospital with my wife all day yesterday. Excellent tips, and messages. So much, that I am going to print them all off. My Doc is on Holidays for over a month. I have a meeting next week with a friend of mine who has some pull in the medical community. Now since he is a friend, I don't want to jeopardize our friendship, however I will ask him politely if he can hook my wife and myself up with a Doctor. My friends dad was a world famous Doc before he passed in 1997. If he says no, then I guess I will hit the pavement. However it doesn;t hurt to ask a friend first. BTW, some of you must have miss read or misunderstood my prev post....I went to school to become a cop. I finished school and met my wife. Then we discussed it. She did not want me to become a cop(divorce rate high) and I had been down that road once before and it isn't worth it twice. So I walked away from a future career in Policing. I was never a Cop. I had nearly 10 years Police, volunteer experince, training etc. But NEVER was a Policeman. Just wanted to clarify that. I still would love nothing more than to be a cop but my marriage is way to precious to me than a career. I love my wife too much to jeopardize that. And after yesterdays emerg visit, it really got me thinking about what all of you guys have been trying to pound in my head about attitude. Fighting the good fight. I am not a lazy person, nor weak. But I guess I did give up. It really did get to me. My wife, the baby, the car accident, my sons dog mauling, my x-wife, the abuse from my dad,my job that I hate,money issues, and so on. I have been telling my wife that I can't change things but I am wrong. Well today, I am going to try to change my mentality(did I spell that right?) and work towards some sort of life for myself with this disease and cope with it where I can either control it and FLICKIN fight it. Without me fighting it, I guess I am no use to my family or myself. I would love nothing more than to take care of my wife. But I can't if I am no better myself. After I read many of my last posts thread after thread I beleive that I am pittying myself. Believe me if you don't but each post I ever made on here is 110% TRUE. As I wrote them I was hurting each time, emotionally and physically watching my wife suffer each day and myself suffering. I sat down with one of my close friends last week and were discussing our buddy whom has MS whom is 62. He kept going on about how sad it is that he is 62 and has MS(he got it 2 yrs ago).I got angry at him and said, Look at my frigin wife she is 29, not 62. I can't do anything as a faimily anymore. We can't go to the park,funtions anything. My son cries all the time, why can't mommy come. And just this past Tuesday, I was having dinner with my boy at a restaurant. There was some pizza left over. I asked the waitress, please wrap up the last 2 pieces for my wife. The waitres said to my son," OH mommy couldn't come", my 7 yr old said" Mommy is injured, she will never be better she is hurt for life". Immediately, I started balling my eyes out uncontrollably. The waitress felt so awfull and apologized. I said its ok, not your fault, I just said, I have a hard time with it sometimes. Well. there is only one way out of this, and its for me to fight. I am gonna fight my disease, fight depression. And see what happens. The only thing I will argue about is that my employeer will not tolerate absenteesim from me with my attacks, they made that quite clear to me. And also its a safety issue.They will fire me. Second, who in the world will hire a person with this disease knowing that I have it??? I would love to find an employeer that says hey" Anytime you miss, you make up, stay late or make up the day on the weekend or something like that" I would be on cloud nine, if I could find a job like that. I do not have the money nor the knowledge to start my own busniess, however I have one shot at this and I know a guy who knows people. I am going to ask him next week if he knows anyone that would have some compassion. I am also going to make another appointment to see my Neurologist. Since my Doc is a knob. I like working. Last night I had a Kip 9 before bed and a Kip 10 in the middle of the night and Kip 6 when I woke up, so I am exhausted already for the day. I have to stay close to home for the next couple weeks and take care of my wife for personal reasons. But mark my words I am gonna give it a shot, I am stubborn as heck. But with what i have been through, it wore the heck out of me. Some of you either sent me PM' and called me a liar, thats ok. I wasn't trying to impress anyone, I wasn't trying to make my life worse that anyone, but all of it was 110% the truth. I also left out alot of other personal issues aswell. I appreciate the ones on here that gave me cander, support and helpful tips and constant reminders to get my arse in gear and get going with my attitude. Thank you. Give me some time. I will check on line but not as frequent. I have to look after her right now but will make dailey steps to helpmyself. Once again, thank you all, And I will post progress reports. God Bless |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by E-Double on Jul 6th, 2006, 9:28am [smiley=thumb.gif] |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by LeLimey on Jul 6th, 2006, 11:12am [smiley=thumb.gif] from me too :) |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by BarbaraD on Jul 6th, 2006, 4:10pm That's the first step... good for you. And by the way -- we've all been right where you are and do UNDERSTAND. Let us know how things are going. Hugs BD |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by chewy on Jul 6th, 2006, 5:49pm Quote:
Now ya got it! |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by Linda_Howell on Jul 6th, 2006, 8:03pm and we'll still be here to give you a swift kick, a pat on the back or an understanding ear. Linda |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by MorePower on Jul 9th, 2006, 8:40am Hi Guys, these last few days have been rough, my wife has been in /out of emerg. She is trying to get off or ween herself off some of these really high doses of meds(Oxycocets/Durgesic patches) and going through serious withdrawl symptoms. So we are trying to support her. Basically, the withdrawls were so bad, the Emerg Doc's had her go back on the patch because she couldn't take it anymore. They suggested that she ween herself off the Oxy's...Also that out family Doc over medicated her in the 1st place and should have never mixed the 2 together, hence her being so cloudy all the time. As for me, I called the Neurologist, begged the secretary for an appointment explaining my doc is on holidays for 6 weeks and I am getting worse and need help. So I am getting in on the 20th this month. Whopeeeeee. I have a friend who suffers from migraines and his Doc gave him a trial of Zomig Nasal Spray.5 mg(he gave me the trial, so last night I felt a banger coming on fast and strong, tried it and it worked fairly quickly, not as quick as the trex. But what a God Awful after taste in my throat in my sinus area...anyone else experience this....is there any other form or needle of Zomig.... It has been about 8 hours since my attack so I am not sure if its like Trex where I will get another. Its weired with my attacks. some days I will get 2. Some days I will get hammered all day long. Some days they are small minor Kip 5 and 6 and then one Kip 10 and then some days all I get is Kip 9s and 10s. at first when I started my CHs I had a pattern, now they are completly sparatick. anyway, I fell better about myself for fighting these things now. I fell better knowing I have an appointment. I feel better knowing that I have an appointment to see my friend this week whom may be able to find me a new doc and get me a new job. I am still very depressed about my wife. Yesterday, I took my son to a waterslide park, we were only on the slides about 30 min tops, when went to get dried off, I noticed my wedding ring was gone. I freaked. I got the staff(as it was closing time) to look for it for about 20 min and had explained why it was so important to me,approx 20 young staff members looked eveywhere for it, in the pools, slides everywhere. I couldnt stop crying etc. So I ended the search and thanked the staff, I also told the supervisor that in my stressfull time that there maybe a slight chance that I am an idiot and left it on my dressor(which I never do).So my son and I went home. Guess where it was...my dressor...I immediately called the park. Called the manager, expalined how dumb I am, explained about my wife and how important she is to me and how sorry I am to the staff and that the following Saturday I am going to buy the staff Pizza for Lunch. And to please accept my apology, all this when I was balling my eyes out,. The manager felt my sorrow and was glad I found it. I feel so stupid. Well here is another story. My inlaws who live out of town are taking care of my wife for 3 to 5 days. They are giving me a break for a bit and wanted me to have my son and I to have a day out. The little guy saw enough in one week with hospitals etc. So this week, I am doing something nice for my wife. I dont have the money, so I am racking up my credit cards. I went yesterday and bought her a 15inch LCD TV for the bedroom, I am going to buy her a new bed in a bag with flannel sheets this week with nice vibrant colours(she didnt like the last set I bought-too dull) and I am going to paint the bedroom and re-organize her closet and re-do the entire bedroom for her. So when she comes back it will seem like a no room to her. She spends 90% of her life in there and is wanting to move and is bored with the house. So I thought Id spice it up for her. Make things nice for her. I am sure she she will appreciate it, as I hate painting with a passion. Hey if I was stuck in 1 room all the time, Id get bored of it too. So, I am trying to prolong her from coming home early. The biggest job will be doing her closest. The painting will be the easy part. I am sure some of you guys out here can agree on me with that lol.... Well I got my work cut out for me this week. Just trying to stay positive, be strong. Stay focused. Thanks for reading. Have a pain free day |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by chewy on Jul 9th, 2006, 11:32am Heres another helpful hint. When you make a post try and make it a few pages less than "War and Peace". |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by MJ on Jul 9th, 2006, 12:06pm Its good therapy Chewy. DJ can send me the bill, post away Mo Pow. Glad to see an improving attitude. No doubt its tough when life goes upside down but then it gets better. Only you can make that happen. Sometimes when hits get sporadic it may signal an ending to the cycle. |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by Sean_C on Jul 9th, 2006, 12:48pm on 07/09/06 at 12:06:44, MJ wrote:
The invoice is at the bottom of the page, its says PayPal MJ ;) Sean............................... |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by chewy on Jul 9th, 2006, 10:27pm This is right down below MJ. http://img.photobucket.com/albums/v388/bgull2/x-click-but04.gif Pay away. |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by MorePower on Jul 10th, 2006, 1:02am am I missing something?.....was that short enuff 4ya |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by chopmyheadoff on Jul 11th, 2006, 3:23am i know how you feel mate i suffer from chronic attacks and thank god i only get one a day. But when i do, my god it is bad. Just like you describe the constant drilling squeezing pain and every few seconds its like a banger going off in my head but seriously mate, have a little thought for others, although it must have felt like it up till now - YOU ARE NOT ALONE. I used to have a big chip "no one can possibly undwerstand how much this hurts". but they do - and they are here to support you. Take the support and be glad of it, it will help you through the dark times - and when you are ready you can share your experience and support with a newbie who is just as scared and frustrated as you are now peace chop |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by MorePower on Jul 13th, 2006, 9:03am Thanks my friend....my attacks go like this.... 1st I feel it coming....then I ask myself,hmmm what Kip is it going to be and how fast it going to come???? 2nd (based upon where I am at the time, what abortives to I have and how fast can I get them in me....advil,coffee,coke and imitrex if needed(public place) 3rd-if in public,find a place not to be seen and fast and take my meds or coffee etc and have my attack and wait it out 4th-wait,kick sream, you all kow the routine 5th-cry and cry and cry and ask why me, why any CH sufferer has to go through this and feel so aweful that I am Chronic 6th-Pray. I also pray at the beginnin of an attack and ask God to help me get me though this. I pray after and thank him for the strength that got me through it and pray for all of you other sufferers to have a pain free day and to bless you as well. 7th-be angry. Be mad that I have this disease because I am exhausted for the next while until my body recoperates for the next hit. 8-Worry about my job as I am about to loose it. 9- reassure myself that I am a fighter and that number 8 don't matter as I am on this board and I have support Basically that summs it up. Kinda dumb, but thats how it goes for me, and I do appreciate the support otherwise I wouldn;t be fighting and wouldn't be on here anymore. Bless ya guys and be pain free |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by JeffB on Jul 13th, 2006, 4:42pm Dude, how can you write so much if you are truly in that kind of pain? :-/ |
||||||
|
Title: Re: I'm Back. Ontario People read and reply please Post by MJ on Jul 14th, 2006, 1:50am on 07/09/06 at 12:48:38, Sean_C wrote:
Sean and Chewy as soon as I find out if I own any of the money or not I'll pay up. I put a pay tab into my accounts box. ;;D Somedays I wonder. Secondly I'm not reading this thread any more it could get expensive. :) By the way whats a halfass, no make that a lousy, I mean cheap, therapist cost these days anyways? |
||||||
|
Clusterheadaches.com Message Board » Powered by YaBB 1 Gold - SP 1.3.1! YaBB © 2000-2003. All Rights Reserved. |