|
||||
|
Title: Has anyon ever beat the beast? Post by ClusterChris on Apr 22nd, 2007, 10:04am Is there anyone that has actually beat the beast? I know it's probably been asked a million times and I appologize. Just curious. Beat meaning gone for lets say 10 years. Thanks |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Guiseppi on Apr 22nd, 2007, 10:08am For our active posters I think Johnny and Bob are the 2 reigning champions with several years in remission. They wil both tell you they consider themselves in remission and are ready to do battle again if he shows up. That being said, most of us kick his ass on a regular basis! I stay armed with oxygen, lithium, cafergot and imitrex jabs. AS a result I'm no longer afraid of him like I used to be. I look him in the eye and say "Bring it!" Guiseppi |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChuck on Apr 22nd, 2007, 2:31pm Nope, Guiseppi, Charlie is the long timer. Around 14 years pain free! And YES, Chris, most of us have, and continue to beat the beast! Beating the beast does NOT mean going many years pain free. It means not letting him win! Every time I survive a hit, and come out ready to do battle again, I have beaten him! 8 to 12 hits a day, and I beat that ba$tard EVERY time! Some times it takes a few hours, but I ALWAYS win, and beat him! Let him win and beat me? NO WAY! Remember, Life is beautiful ... When you are between hits! You HAVE won, and beat him! Chuck |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChris on Apr 22nd, 2007, 2:39pm thanks for the optimism. But I seem to be a little more pesimistic. The bastard has been winning for 17 years now. Yes the pf time is great however we should not have to look forward to pf time in the first place. Wish I could feel the same as you, but the bastard has done a hell of a job making my life hell. Pf time to all of ya and thanks for the replies! |
||||
|
Title: Re: Has anyon ever beat the beast? Post by TxBasslady on Apr 22nd, 2007, 3:10pm Keep in mind....that the beast will take whatever time you're willing to give him. He loves it when you allow him to alter your lifestyle. He wallows in your depression and will give you as much grief as you're willing to take. Call it a mindset....whatever you wish, but this can be controlled to an extent. It takes much time, sometimes..to find the right combo/cocktail to fight back. I fought like hell....and eventually reached the point where I realized that the more meds I tried...and took, the worse my CH became. I went med-free, January of 2005. I got a script for 02, and am proud to say that the 02 works for me 100 % of the time. It's not easy for everyone, and certainly is not the solution for everyone. I have not and will never push my choice of going med-free on any CH'er. This was just my personal choice and by far, the best choice I have made CH wise. Jean |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChris on Apr 22nd, 2007, 4:02pm I am very lucky as well, a half a shot of imitrex in the leg works i'd say 98% of the time for me! Just too bad i didn't have it for the whole 17 years. Thanks for your reply. |
||||
|
Title: Re: Has anyon ever beat the beast? Post by chewy on Apr 22nd, 2007, 9:48pm I'm coming up on 5 years cycle free. |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Brewcrew on Apr 22nd, 2007, 11:09pm I beat the beast every single day. |
||||
|
Title: Re: Has anyon ever beat the beast? Post by vietvet2tours on Apr 22nd, 2007, 11:19pm two years eight months pain free. |
||||
|
Title: Re: Has anyon ever beat the beast? Post by BMoneeTheMoneeMan on Apr 23rd, 2007, 12:14am on 04/22/07 at 23:09:04, Brewcrew wrote:
I hear ya. I beat the beast this morning at 2:30, 6:00 and at 7:30. Winning feels good. |
||||
|
Title: Re: Has anyon ever beat the beast? Post by starlight on Apr 23rd, 2007, 12:05pm Don't give up hope that you could go into remission. I have read that people can "outgrow" the headaches when they are older if they have been getting them for a while. Also people can start to skip several years inbetween cycles (if they are episodic) so that is reason for hope. |
||||
|
Title: Re: Has anyon ever beat the beast? Post by seasonalboomer on Apr 23rd, 2007, 12:49pm My life was changed by learning how to tame the beast. Input from this site allowed me to build an arsenal that helps me beat back the beast whenever he shows up. The beast no longer has the power in my world that he used to. My father (also a clusterhead) did have a 5+ year remission prior to his chemo-issue that triggered a bout for him. His extended remission came on for him at close to 60 years of age. I stay actively engaged in making certain I have the tools necessary for the battle even when I'm not in cycle. Both emotionally and pharmaceutically. Scott |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Sandy_C on Apr 23rd, 2007, 2:31pm on 04/22/07 at 14:31:40, ClusterChuck wrote:
This is beating the beast. Beautifully said, Chuck. Sandy |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChris on Apr 23rd, 2007, 2:34pm I found this while searching the post archives from 1998. Anyone know if he is still around??? I suffered from Cluster headaches from the age of 13 through 33. The article I downloaded from this site is right on the money. I wish this information was around years ago. I have not had a cluster headache in about 12 years. During those years I went to Montefiore Headache Clinic in NYC which diagnosed my headache problem as TMJ and sent me to a dentist. Back then I do noth think they even recognized Cluster headaches. During the years I have tried Lithium, Propanol, Calcium channel blockers, ergotomine, prednisone, Elavil, Endep, Bellergal, and probably some other meds I cannot remember, along with Fiorinol, Codeine and Demerol. Sometimes I thought some of these meds might be working, but I was never sure if it was the medicatiion or the end of a cycle when the headaches would stop. The one treatment that absolutely worked for me was Oxygen. I think I read about it at the time in Parade magazine and decided to try it. It stopped the headache or aborted the headache after about 5-10 minutes of breathing through a mask. Although the headache might come back, the oxygen would always get rid of it. I still have tanks of Oxygen in the basement and hope I never need them again. I have to believe that the pain from a Cluster headache is some of the most severe a person can endure. I can remember thinking to myself during an episode that I would gladly cut off a finger, etc., if it would get rid of the headache. David Kolb <DAKOLB@COMPUSERVE.COM> Westfield, NJ USA Tuesday, May 05, 1998 at 12:37:35 (EDT) |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Guiseppi on Apr 23rd, 2007, 2:39pm I don't recognize the name but strongly agree with the oxygen advice. Has been and continues to be my first line abortive. Guiseppi |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChris on Apr 23rd, 2007, 4:13pm i am going to ask my doc about the oxygen (last doctor refused to give it to me) I have since gotten a new one and this will be my first appt with her while in cycle. i can't see myself trying just the 02 though, maybe for 5 minutes then i'm givin myself a hit of trex. Wich always works. Ahh maybe i'll get brave and tough one out! I'll let ya know if i get it or not, my appt is in 20 minutes! Talk to yas later! |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Sandy_C on Apr 23rd, 2007, 4:42pm on 04/23/07 at 16:13:15, ClusterChris wrote:
Look at it this way Chris. Oxygen, 02, is not a foreign drug to your body, it a natural part of your body. Nobody, including me, will ever say that you cannot overdose on 02, but I don't think that's likely. Trex, on the other hand, IS a drug. Trex workes magic on clusterheadaches, no question. Been there, done there, used it. But, because it is a drug, it has side effects that for some of us, me specifically, cannot live with. I can't use trex any longer because of the problems/damage is did/can do to the heart. So, my choice is 02. It's now my only abortive. I use one of the alternative methods as a preventative. So far, I have been able to abort every single hit within 5 minutes. Granted, none of those hits have gone over a K7, so I don't yet know how 02 will work on a gigrundous one, but I have faith that it will help. Be brave, just a little. Try to rely on the 02 before hitting the trex. You might just learn that 02 can knock out the lower level hits, and save your trex for the biggies. Just my two cents. Sandy |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Linda_Howell on Apr 23rd, 2007, 10:37pm Print this out and take it to your Dr. http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm I am always at a loss for words when Dr.s will not prescribe this. It just boggles my mind. It is THE safest, THE cheapest, THE most effective treatment out there. :-/ demand it. If you won't speak for yourself, give me your Dr's phone number. ;;D |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChris on Apr 23rd, 2007, 11:25pm well once again I was denied the oxygen. I explained everything to her and she said she's not going to deny that it does help however, she said the reason she won't prescribe it to me is that there has not been any clinical study in "Canada" to support it. So looks like I am screwed unless anyone here in Canada has some clinical info they can share with me so that I can present it to my Dr. Any clinical research done in the U.S. apparently holds no credit here. So i think I might be shit outta luck. :( Thanks once again for your great replies! |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Linda_Howell on Apr 23rd, 2007, 11:44pm HMMM. Chris, I have friends in Canada. ;;D Give me some time to contact them. They are Hockey fans. They take no prisoners either. Linda |
||||
|
Title: Re: Has anyon ever beat the beast? Post by BMoneeTheMoneeMan on Apr 23rd, 2007, 11:56pm I dont understand why docs are hesitant to prescribe O2. U cant get high from it, u cant make drugs with it, whats the big deal? I bet if you asked your doc for a narcotic like percocet or fiorinal, you would get it. :-/ |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChris on Apr 23rd, 2007, 11:56pm I don't think there is such a thing as a Canadian thats not a Hockey Fan lol. I'd appreciate anything you can dig up for me linda! I'm in Welland, Ontario. (10 Minutes from Niagara Falls) Thank You! Chris |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Linda_Howell on Apr 24th, 2007, 12:02am O.k. Chris...give me a day or two. I was kidding on the Hockey thing. One other thing I cannot understand. Let us take 2 boards of wood, bash them around a field of ice, hit whoever comes your way with a brain smashing whack....yeah it doesn't get better than that. ::) Margi forgive me. |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChuck on Apr 24th, 2007, 12:22am on 04/23/07 at 23:25:46, ClusterChris wrote:
SHIT SHIT SHIT!!!!! I am SO pissed!!!! Get a new doctor!!! That is SUCH bullshit!!! DAMN DAMN DAMN !!!!! Don't give me the doctor's name, cuz I am afraid of what I would do to that fucking idiot!!! Chuck |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Batch on Apr 24th, 2007, 12:31am Chris, I don't know how it works in Canada, but I'd tell the lad to go back to med school and find yourself another doc that will work with you AND give you an Rx for medical O2, a Non-Rebreather mask, a regulator capable of delivering 100% O2 at 7 to 15 liters/min. 100% O2 is the best abortive for the most CH sufferers. If you're stuck with the present doc... EDUCATE him! Many of us have had to do that at one time or another. Go to the "oxygen info" link at the right, print out a few pages and take them to the doc at the next visit. You'll need a Rx for O2 one way or the other. Don't take "NO" for an answer. Let us know how you're doing. Lots of folks have found ways to abort the beast... the real trick is to find a prophy that keeps it from coming. |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChuck on Apr 24th, 2007, 12:45am OK ... I am calming down ... Would this doctor accept studies from England? There are plenty over there ... Chuck |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Linda_Howell on Apr 24th, 2007, 12:52am Take a chill pill Chuckie. I am as mad as you are about this I am on it!!!!! >:( |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChuck on Apr 24th, 2007, 12:57am on 04/24/07 at 00:52:49, Linda_Howell wrote:
Are YOU trying to tell ME what to do?? HUH??? Chuck PS: Yes dear ... what ever you say luv .... heehee <hangs my head in shame> |
||||
|
Title: Re: Has anyon ever beat the beast? Post by zanychef on Apr 24th, 2007, 1:10am every time a hit goes is beating the beast 24 yrs of it i think i'm winning ;;D can i come over and punch the dolt too?? ;) |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Linda_Howell on Apr 24th, 2007, 1:22am Chris it may seem like Chuck and I are at odds on this to you. We are not. We both are so very adament about the use of 02..... and we will both try to help you with this if it is the last breath we take. It may be Chucks last breath if he doesn't learn his place around here, but I will continue. (this is all in fun Chris) ;;D |
||||
|
Title: Re: Has anyon ever beat the beast? Post by zanychef on Apr 24th, 2007, 1:28am i too swear by o2 and hate it when docs wont accept that it works but imho chuck and linda know better than me |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Linda_Howell on Apr 24th, 2007, 1:35am Quote:
I think I love you Zany Chef. :-* :-* :-* :-* |
||||
|
Title: Re: Has anyon ever beat the beast? Post by zanychef on Apr 24th, 2007, 1:41am awww thanks hun but i only got married last week ;;D ;;D ;;D |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChuck on Apr 24th, 2007, 1:44am on 04/24/07 at 01:41:30, zanychef wrote:
Make sure you practise the following, in the mirror ... Keep doing it so that you look sincere: "Yes, dear, You are right. I am sorry. " Learn it WELL .... Chuck |
||||
|
Title: Re: Has anyon ever beat the beast? Post by zanychef on Apr 24th, 2007, 1:48am on 04/24/07 at 01:44:16, ClusterChuck wrote:
you know i wont remember that chuck ;;D ;;D ;;D |
||||
|
Title: Re: Has anyon ever beat the beast? Post by pieface_49 on Apr 24th, 2007, 5:56am Chris, Maybe this will help? http://www.bibliotheque.assnat.qc.ca/01/MONO/2007/02/711744.pdf Sunnybrook Health Sciences Centre, University of Toronto keeps coming up in searches. So does Department of Neurology, University of Toronto, ON, Canada. A doctor from University of Toronto who researches CH: http://www.sunnybrook.ca/research/scientists/GtoL/gawel Support for headaches in Canada: http://headaches.about.com/od/internationalorgs/International_Headache_and_Migraine_Support_and_Advocacy.htm http://www.headachenetwork.ca/ http://www.headache-help.org/ http://www.headache-help.org/find_ha_dr.html Hope some of the above helps. Donnie |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChris on Apr 24th, 2007, 6:09am Thank you for your input guys. This is my second doctor that has said the same thing. My last doctor actually game me some hope and said, " if you can provide me with some proof, I may give it to ya" So I printed off all the info I could from here and dropped it off at her office. My next appt she told me there was no clinical evidence, That she can't go by what people on a website have typed. Pretty frustrating to say the least. Oh you guys will love this one. When the doc walked in the room today she says" So, your cluster migraines are back?" and asked me if I get any vommitting. When i replied "no", she says, "well thats a bonus" anyway, Thats my venting. About the nw doctor thig, there is no way I can get another doctor. We are short 17 doctors right now. Finding one is next to impossible. Thanks guys Chris |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Brewcrew on Apr 24th, 2007, 7:39am Move. Or get a welding rig and buy a regulator and mask on e-bay. Gotta love socialized medicine. |
||||
|
Title: Re: Has anyon ever beat the beast? Post by zanychef on Apr 24th, 2007, 8:03am god that doc makes me wanna puke!!!! |
||||
|
Title: Re: Has anyon ever beat the beast? Post by seasonalboomer on Apr 24th, 2007, 9:37am Chris, Sorry to hear that pal. Sounds like your doctor is a sadist. No puking and that's a bonus? Count me in amongst the group that can really get worked up on this subject. The pomposity of a physician to act in this way is beyond me. I had my own battle with a GP on this subject and I shamed the guy int finally giving it to me. I literally shamed him. I went in psyched and focused on making sure that he knew who the boss was and that I wsn't going to take no for an answer. Of course.... take that too far and the O.P.P. might be called.... Find a new doc. Print out all you can. Write the review boards on this doc and move on. Scott |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Margi on Apr 24th, 2007, 10:24am Hi Chris (and thanks for the heads up about this post, Linda). We're in Calgary and my husband has been a clusterhead for more than 20 years, episodically. We had to get a referral to a neuro to get our medicinal oxygen, we couldn't find a GP who would prescribe it either. For the most part, GP's don't study enough about headache to speak intelligently on the subject of cluster. Don't ask your GP for a referral - DEMAND a referral and ask to be seen on an urgent care basis. OR go to Emerg and get a referral that way. Oxygen has long been accepted in the neurology community as a viable cluster treatment - yes, even here in 'backwards old Canada' ::). Print out that oxygen info from Maple Falls website and take it with you to the neuro. You HAVE to also get a prescription for a non-rebreather mask - your neuro probably won't offer that right off the bat but it makes the world of difference in the efficiency of oxygen therapy. Get on the O2 at the first sign of attack and stay on it, breathing normally, for at least 10 minutes. You can also order a better mask over the internet from this website: www.clustermasx.com - VERY efficient delivery. Failing medicinal oxygen, you could go the welder's oxygen route but, sadly, in order to get welder's oxygen tanks filled here in Canada you have to produce a welder's license to the oxygen suppliers....but welder's oxygen CAN be had if you have friends in the industry. One last thing - you must have a high flow rate regulator on your o2 tank. Out west here we use Medigas or Praxair(Vitalaire) and we get the big S tanks. The little E tanks last about 3 headaches for my hubby, whereas the S tank lasts about 30. Medigas delivers and once you have a prescription, they'll supply you for life - nothing needs to be renewed. With a letter from your neuro - your health insurance should reimburse you the cost of the oxygen as well. An S tank costs us about $30 a month. The masks are about $4 to purchase, clustermasx about $25 Cdn. SO much more affordable than Imitrex, just as effective, but TONS easier on your body! Hope this helps. Margi p.s. my Flames have joined your Leafs on the golf course. :'( But the Sens and the Canucks are still in it, so at least we still have some homegrown to cheer for! |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChris on Apr 24th, 2007, 11:05am Margi, Thank you for the great reply. I will call the doc today and have an app made with a neuro. Last Neuro I had gave me a beta blocker to the back of the head, 45 minutes later my wife was rushing me to the ER. on the kip scale it was a 10++ I thougt it was the end. Needless to say I never wentr back to a Neuro. Canadian healthcare is free for a reason. It's Shit! Thank you once again and I'll keep ya posted. Probably won't be for a few months, thats how long it took me to get in last time! I was rooting for the flames once my leafs failed to make it. Sucks for both of us! I hate ottawa so go Canucks!! |
||||
|
Title: Re: Has anyon ever beat the beast? Post by barry_sword on Apr 24th, 2007, 11:38am [quote author=ClusterChris link=board=chspecific;num=1177250665;start=25#41 date=04/24/07 at 11:05:23] Canadian healthcare is free for a reason. It's Shit! Hi Chris, pleased to meet you. Our health care is not exactly free, remember Daulton McGuinty? We do pay for it through our income tax, we just don't see it. It took only about one month to see my neuro in Huntsville, Ont. as a new patient, and now when I need to see him it is within the week. Maybe shop around for a different neuro. Good help is out there. PFNAD Chris, Barry :) |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Margi on Apr 24th, 2007, 12:10pm Chris, a beta blocker to the back of the head?? Do you mean he did a procedure or was this a med he gave you? Beta blockers are usually meds, but there is also an occipital nerve block that (I think?) does involve insertion of a needle at the base of your skull. Once you get your referral to the neuro's office, be pro-active and call them yourself (after the doc has made the appointment for you, I mean). Tell them that you have cluster headaches and are "desparate" to be seen as quickly as possible, that you don't know how much longer you can 'take this pain'. I know that's extreme and may not be true for you, but sometimes ya gotta go the extra mile to get by the receptionist. We had to here and we were initially told the waiting list was a YEAR long wait and my hubby was in no shape to wait a year - also, that cycle would most likely have ended by that point. I called the receptionist and, we were seen that afternoon. Push hard for this, Chris. Barry, I don't know Ontario geography, but is your neuro close to where Chris lives in Welland? Could you maybe give Chris the neuro's name? Go Canucks! :) |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChris on Apr 24th, 2007, 12:12pm Thanks Barry, Your help is appreciated. What would I do to shop around for a neuro though? I have no idea who is good, bad etc? And another problem is that by the time i do get to see him/her, I will probably be out of cycle again. You are right with the healthcare situation. Just told us here that our property taxes are going up another 5 percent. Just rediculous. |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChris on Apr 24th, 2007, 12:21pm Sorry margi, I think you were replying at the same time as I. YES, i recieved a needle to the base of my scull. It was the worst Ch I ever had Hands Down! I guess I'll start doing some Neurologist shopping. I'll see what I can come up with. Thanks |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Margi on Apr 24th, 2007, 12:22pm Chris, we used to have a website for OUCH Canada and there was a list of recommended doctors by province. We have closed the charity but I'll see if I can find that list again....bear with me. Here you go: http://www.helpforheadaches.com/doctors/migraine-headache-specialists-canada.htm This is from our friend, Brent Lucas' website - Help for Headaches. It's written about migraine but Brent himself is a clusterhead and the doctors recommended there deal in both types. I can personally vouch for Doc Robinson out in Vancouver, so I assume the others listed there are in the same class. You could ask your GP to be referred to one of them, but it looks like it means travel to TO though... :-/ I have also heard of that Dr. Gawel and I've put out an APB to my friend, Carol (Grandma_Sweet_Boy) to see if she can help, too. She's a clusterhead in the TO area and she knows EVERYTHING :) I'm thinking that might even be her doctor. Hang in there, Chris, the calvary is coming! :) How often are you getting hit and how long have you been in cycle? Do you have good support at home? |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Linda_Howell on Apr 24th, 2007, 12:29pm Thanks for coming so promptly to the rescue, Margi ;) |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Maffumatt on Apr 24th, 2007, 12:29pm Maybe you should look into welding supply O2, I use it and it is alot cheaper than getting it from a home health supplier. Just don't tell them you are breathing it. BTW If it was me, instead of you supplying them with proof that O2 works for CH, I would tell them to supply you with proof it doesn't. |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Margi on Apr 24th, 2007, 12:31pm Matt, not so easy to do in Canada as I said, but it can be done. It's actually easier to get medicinal O2 here unless you have welder friends. For you Luinda? Anything..... :-* |
||||
|
Title: Re: Has anyon ever beat the beast? Post by barry_sword on Apr 24th, 2007, 12:33pm Chris, I really don't know about your situation as far as traveling goes. I really lucked out having the most concerning and compassionate neuro the first time around. Maybe you can ask if other neuro's are a option and see a different one that understands CH's. My neuro is only 30 minutes away from where I live. I will give you his name and address, do not know if this will help or not. Welland is quite a ways away from here,and there has to be good ones closer to you. Best of luck to you my friend, Barry Blaine Taylor foell, MD FRCP(C) 23 Dairy lane, unit #2 Huntsville, Ontario P1H 1T4 Tel: 705-789-6632 Fax:705-789-1922 Hope you find one soon that will help you!! Barry |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChris on Apr 24th, 2007, 12:50pm on 04/24/07 at 12:22:30, Margi wrote:
Thank you for the link, I'm going to look it over. Toronto isn't so bad, Only an hour away. I've been in cycle for about 2 weeks now, getting hit abou 3 times a day and twice out of my sleep. Just came off of 2 years pf. Support at home is great. My wife totally understands. The problem is trying to explain it to my 4 year old why daddy always has a towel wrapped aroun his head. FInaly had to send the kids to the sitters while I sit at home while my wife works. It just kills me knowing they are there and I'm home but I had no choice. That pisses me off more then the headaches themselves! #&*$&%^$. The welding route may be an option as well (brother in law is a mechanic). I'll keep yas posted! Chris |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChris on Apr 24th, 2007, 12:51pm Thank You Barry! |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChris on Apr 24th, 2007, 1:18pm I'm off to work for the night. For those of you that use MSN Messenger you can find me at canadiantrash@hotmail.com please dont use that to send me e-mail because i never check it. It's just my junk e-mail account. Thanks! |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Grandma_Sweet_Boy on Apr 24th, 2007, 6:28pm Hey Chris - Dr. Gawal is in Toronto. He's not my neuro but I found his name for one of our other Ontario cluster folks. If Major is around and reading the boards at all, I'm sure she can let you know what her husband thought of him, but it seems to me he was find and I know Jeff had 02 prescribed for him. If you need any help trying to find phone #'s let me know and I'll get them for you when I go back into my office. Carol |
||||
|
Title: Re: Has anyon ever beat the beast? Post by BB on Apr 24th, 2007, 8:36pm Hi ClusterChris Print this out, this is the whole documentation recommending home oxygen therapy as a treatment for clusterheadaches. http://www.bibliotheque.assnat.qc.ca/01/MONO/2007/02/711744.pdf Its a technology brief written by Dr Reiner Banken for the AETMIS, recommending home oxygen therapy to the Canadian Health Department in May 2002. Its an official government document. The AETMIS is the Agence d'evaluation des technologies et des modes intervention en sante'. Its a official body that looks at recommendation of different treatments and therapies for different medical condition and recommending them to the Health Department. The original article titled " L'oxygenotherapie a domicile pour le traitement de la cephalee de Horton " is also available. It has the list of names of the specialists ( mainly in Quebec ) who recommend home oxygen as the first line treatment for CH. At the bottom it has the list of all the references ie pages and pages of studies done in Canada to support this evidence. There are also phone numbers for further information too. Give this to your GP so that she can read to her ( evil ) heart content and she can ring these people to find out more. That should give her all the supporting information she needs to convince her of oxygen therapy. Best of luck and painfree wishes to you. Annette |
||||
|
Title: Re: Has anyon ever beat the beast? Post by BB on Apr 24th, 2007, 9:06pm Also if she wants a general read of recent articles published in reliable sources about oxygen therapy for CH then below are a few http://jama.ama-assn.org/cgi/content/citation/256/24/3349b http://www.aafp.org/afp/20050215/717.html http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=3783883&dopt=Abstract http://www.blackwell-synergy.com/doi/abs/10.1111/j.1526-4610.1981.hed2101001.x?journalCode=hed http://www.doctoronline.nhs.uk/masterwebsite1Asp/targetpages/specialts/neuroUpdate/cluster.asp http://www.theneurologist.org/pt/re/neurologist/abstract.00127893-200507000-00006.htm;jsessionid=GnmLV5LlDKznh5tRQFYPbtZ37WNkJ0h30DHHW6V2qnLGh2y5DDng!3145886!-949856145!8091!-1 http://www.nlm.nih.gov/medlineplus/ency/article/000786.htm http://www.mhni.com/clusterheadaches.aspx http://www.clevelandclinic.org/health/health-info/docs/2600/2608.asp?index=5003 http://www.postgradmed.com/issues/2001/01_01/dalessio.htm http://myhealth.ucsd.edu/library/healthguide/en-us/illnessconditions/topic.asp?hwid=support/hw186895 http://uimc.discoveryhospital.com/main.php?id=565 There are heaps more if she wants more ;;D If you wish, give me her work phone number and I can ring her to talk to her as a GP from Australia. Hope this helps. Annette |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChris on Apr 24th, 2007, 11:50pm Thank you vey much BB. I am printing that info as we speak. my main concern is, will she actually read it. I'll definately give it a shot though. If anything maybe it will get her to stop calling then migrains! Here is my Doctors info, if you wish to speak with her that may help as well. Dr. J. Mueller Northtown Medical Associates 905.732.4777 (phone) 905.732.7262 (fax) Northtown Centre, 325 Thorold Road West WELLAND Ontario L3C 3W4 CANADA As much as I would like for everyone to call and beat it into her, I prefer not to have that, I still have to deal with her! It may still come to that though so sit tight lol You guys are great and I can't thank you enough! Chris |
||||
|
Title: Re: Has anyon ever beat the beast? Post by BB on Apr 25th, 2007, 1:54am Hi Chris, I am going to fax your doctor a formal letter tomorrow ( today is public holiday here ) introducing myself and telling her briefly about my personal experience with CH ( my husband is a clusterhead ) and some formal information about home oxygen as first line abortive treatment. I would then courteously invite her to contact me via fax, email, phone ...whatever if she would like to know more about the condition and its treatments. That way she wont feel "threatened" and wont take it out on you. She shouldnt anyway as a professional medical person but hey, we are all humans and we dont like it so much when we get pounced on, even when we are in the wrong. So lets be civilised and hopefully she will find learning more about CH interesting. Best of luck and painfree wishes to you. Annette |
||||
|
Title: Re: Has anyon ever beat the beast? Post by BikerBob on Apr 25th, 2007, 2:38am Chris, about that article that Annette googled... if you give that article to your doctor, tell your doctor it's wrong in that it says 7-10 lpm rather than 10-15 lpm. Insist on 10-15 lpm and be sure to get a regulator that goes up to 15 lpm rather than 10. I think it's a bad idea to have a "supporter" from Australia getting involved with your doctor and medical care, especially Annette. If I were you I would rely on the advice of Margi, Barry_sword and Grandma_Sweet_Boy. BB |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChuck on Apr 25th, 2007, 3:23am on 04/25/07 at 02:38:13, BikerBob wrote:
Even if she only gives it for 7 to 10 LPM, Chris can buy his own regulator, very reasonably, from eBay, or many other places. on 04/25/07 at 02:38:13, BikerBob wrote:
Bob, I totally diasagree with you. Are you aware, that Annette (BB) is not only a supporter, but a family practitioner doctor? I feel Annette's input would be VERY helpful! Chuck |
||||
|
Title: Re: Has anyon ever beat the beast? Post by BB on Apr 25th, 2007, 3:26am on 04/25/07 at 02:38:13, BikerBob wrote:
LOL ! Bob, I was asked if I could help. I didnt jump in here to be some heroes. I made genuine offers to Chris. Its up to him what he wants to do with the offers. If you can help Chris out better, please go right ahead. I will gladly cede to the experts. Annette |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Batch on Apr 25th, 2007, 6:07am Chris, Bless my long gray whiskers… this whole thing with your doctor not giving you an Rx for O2 is making my hair hurt. ICFBI!!! At this point, it appears that taking reams of paper to her will not work. Are you sure she’s not a Proctologist? I’m beginning to think she wouldn’t understand clinical proof that 100% O2 is an effective CH abortive if a sigmoidoscope jumped up and bit her. In case she is having trouble with the diagnosis, here’s a passage from the International Classification of Headache Disorders (ICHD-II), the bible on headache pain diagnosis. Cluster Headache and Other Trigeminal Autonomic Cephalalgias. 3.1 Cluster Headache 3.1.1 Episodic 2.1.2 Chronic Cluster Headache as defined by the ICHD-II Code: 3.1 Attacks of severe, strictly unilateral pain which is orbital, supraorbital. temporal or in any combination of these sites, lasting 15-180 minutes and occurring from once every other day to 8 times a day. The attacks are associated with one or more of the following, all of which are ipsilateral: conjuctival injection, lacrimation, nasal congestion, rhinorrhoea, forehead and facial sweating, miosis, ptosis, eyelid oedema. Most patients are restless and agitated during an attack. Unless you’ve managed to get through to this doc with all the good material on the use of medical O2 as a cluster headache abortive that Annette sent, I think a second medical opinion is the best course of action. The beauty of socialized medicine is there are lots of folks standing around to make sure it’s bureaucratically administered correctly and as inexpensively as they think possible. Call an administrator and ask for another doctor. Bureaucrats love paperwork… Give them the citations Annette sent with the following message: A box of 10 ea. 5 mg Imitrex nasal spray applicators costs $167.50 USD in Canada. That should be enough to abort 10 cluster headache attacks. Home medical supply companies in Canada provide D-Sized O2 cylinder at costs $20 USD each. A fully charged D-Sized O2 cylinder should provide enough medical O2 to abort 4 attacks using 15 liters/min flow rate and 5 minutes per attack with a properly functioning non-rebreather O2 mask. The numbers should be clear enough for event he most bumbling bureaucrat. $16.75 vs $5 to abort each cluster headache attack. |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChris on Apr 25th, 2007, 8:45am Thanks for that info Batch. I wish it was that easy to switch doctors. We are currently short 17 Doctors in our area. I am very lucky to have just the one I got. Thats why I'm thinkin that the neuro is th best route to go. I thought about the welding route for the O2 but was talked out of it by family because if I ever had even the smallest fire in the house and the insurance company caught windo of me having that tank in here illegaly, I would not be covered! So unless I can get through to my doctor or get a neuro to hook me up, I think I may be screwed! Thanks again for your help Chris |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Margi on Apr 25th, 2007, 9:52am Annette, I'm going to answer your PM right here in this thread, ok? No, you were not overstepping your boundaries with what you posted here - THANK YOU VERY MUCH FOR DOING IT!! Stop worrying - you did nothing wrong. :-* Chris, Annette is very genuine in her offer here and she's worked her as$ off educating herself about cluster in the last while - I wish more GP's were like her! My hat's off to you, Annette! For what it's worth (and no disrespect meant to you, BikerBob), Mike can abort his clusters with 8 litres per minute. We're cheap - we try to make the O2 last as long as possible and the lower flow rate achieves that AND nips his clusters in the bud if he gets on it early enough. I've seen him go as high as 10 if he leaves it too late but...rarely. Chris - did you ask your GP for that referral yet? Huh? Didja? Always good to have a backup plan if her head is still stuck in the mud... Carol - thank you - I think between the two of us, we do actually have one full functioning brain when it comes to remembering names. Hell, pretty soon we'll be able to hide our own Easter eggs, huh? Right, 'Nuthermum? ;) |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChris on Apr 25th, 2007, 10:08am no referral yet, I'm actually going to wait and see what happens with Barry, If he gets the 02 then i might contact his neuro. I also want to see if all this info will give my gp a wake up call and a change of heart. Anette, Please dont stop what your doing because of one post. The world could use alot more people like you! Chris |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Maffumatt on Apr 25th, 2007, 10:17am on 04/25/07 at 10:08:12, ClusterChris wrote:
I concur |
||||
|
Title: Re: Has anyon ever beat the beast? Post by barry_sword on Apr 25th, 2007, 10:17am Annette, I sure do appreciate all that you do for us here and want to personally say thank-you on the board. THANK YOU ANNETTE!!!!! :-* Barry |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Bob P on Apr 25th, 2007, 10:18am I too get by just fine with 7-8 lpm. Aborts in 5-10 minutes. |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChris on Apr 25th, 2007, 10:52am You think if i gathered up all the plants in the house and then put a big plastic sheet around them I could get pure oxygen?? Just a thought lol, you guys are really making me want the oxygen! |
||||
|
Title: Re: Has anyon ever beat the beast? Post by barry_sword on Apr 25th, 2007, 11:00am [smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif] Chris, these wonderful people have been telling me to get o2 from day one, and I am now just willing to get it. I have a "Homecare o2 Center" about 1km. from my house but I still need a docs script for it, but it will be close by and easy to get if I get the script. If I get it, you are more than welcome to come here and share it, but you will have to bring your own mask! My thoughts will be with you in my neuros office tomorrow. I will ask him about the neuros in your area also. Barry |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChris on Apr 25th, 2007, 11:05am I remember years ago, not too many people were really into the oxygen thing. But now it sems everyone is using it with great effects, so hell, I'm all over it. Thanks for that Barry, Maybe one day down the road I'll take you up on that offer LOL. Maybe we can put a big tank in the middle of two lazy boys and watch some hockey together! Sound like a plan lol? Chris |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Margi on Apr 25th, 2007, 11:20am on 04/25/07 at 11:05:17, ClusterChris wrote:
LOL because....we ARE Canadian! (insert theme music to Hockey Night in Canada here). Da da da da da DAH da!! |
||||
|
Title: Re: Has anyon ever beat the beast? Post by barry_sword on Apr 25th, 2007, 11:21am We will maybe work on that. ;;D I just keep laughing thinking about the plants and plastic sheet! [smiley=laugh.gif] [smiley=laugh.gif] I just hope they are not plastic plants. [smiley=laugh.gif] If you do this, a pic is a must!!! Barry ;;D |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChris on Apr 25th, 2007, 11:24am LOL If i get the energy, I may just do it for shits and giggles! |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Guiseppi on Apr 25th, 2007, 11:28am All my house plants....a big plastic sheet........like my poor wife doesn't think I'm mental enough as it is!! [smiley=laugh.gif] It is amazing how much we all encourage the 02 route these days...I just wish the medical field was a little quicker to jump on our band wagon. And don't worry about Annette getting chased away by one post, she's a bit tougher then that! Guiseppi! |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChris on Apr 25th, 2007, 11:37am lol i should do it just to see my wifes face when she gets in from work! I just wanted to reassure annette that what she was doing is appreciated thats all! No need for somebody to come into this post and downgrade her like that! Shes helpin me out greatly! |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Maffumatt on Apr 25th, 2007, 11:39am on 04/25/07 at 11:28:07, Guiseppi wrote:
That she is, that little lady is tougher than a woodpeckers lips. |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Margi on Apr 25th, 2007, 12:44pm woodpeckers have lips? |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChris on Apr 25th, 2007, 12:51pm Must only be on those American Woodpeckers. OOps did I just say that? :P |
||||
|
Title: Re: Has anyon ever beat the beast? Post by BB on Apr 25th, 2007, 12:54pm on 04/25/07 at 12:44:29, Margi wrote:
LOL ! Margi, I was wondering the same thing ... At least he didnt say I was tougher than cows hide ! :P ;;D Annette |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Guiseppi on Apr 25th, 2007, 3:03pm woodpeckers have lips? In my never ending attempts to end the downward spiral, I soooo wasn't going to go there...... ;;D Guiseppi (But OMG the comebacks I'm choking on!!!!) |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Rosybabe on Apr 25th, 2007, 3:41pm [smiley=crackup.gif]woodpeckers have lips?[smiley=crackup.gif] |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Grandma_Sweet_Boy on Apr 25th, 2007, 4:43pm on 04/25/07 at 12:44:29, Margi wrote:
Whoda thunk it? ;;D Annette - you just keep on keepin' on with what you're doing. Most of us appreciate all you do, not just here but the countless times you've provided assistance in PM's and emails too! Carol |
||||
|
Title: Re: Has anyon ever beat the beast? Post by pieface_49 on Apr 25th, 2007, 7:09pm Chris, There is a device called an oxygen generator. They are what is normally used for large fish tanks and oxygen bars. I saw a used one (stated low usage) on Ebay a couple weeks ago for $450USD. You have to be careful, most go to 10lpm, if that. The models vary from day to day on Ebay. Here is a sample ($675USD): http://cgi.ebay.com/Oxygen-generator-for-oxygen-bar_W0QQitemZ220106130636QQihZ012QQcategoryZ1271QQssPageNameZWDVWQQrdZ1QQcmdZViewItem I have no experience with such a device. Perhaps others do? Donnie |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChris on Apr 25th, 2007, 11:55pm Thats a cool device, didn't know the existed! What the hell is an oxygen bar anyway? please dont tell me its like a bar but people pay to breathe oxygen. Thats a little outta my budget but I appreciate the post! Chris |
||||
|
Title: Re: Has anyon ever beat the beast? Post by BB on Apr 26th, 2007, 12:57am After discussing privately with Chris via PM, I have written this letter to be faxed to his GP with print outs of other relevant information on CH and treatment, particularly to support oxygen as first line abortive. I have Chris's approval on this. :) To : Dr. J. Mueller Northtown Medical Associates 905.732.4777 (phone) 905.732.7262 (fax) Northtown Centre, 325 Thorold Road West WELLAND Ontario L3C 3W4 CANADA Dear Dr Mueller, My name is Annette Do and I am a registered General Practitioner working in Sydney Australia. I would like to take this opportunity to introduce myself to you and to offer you some practical information on Cluster headaches and its treatments. My husband was diagnosed last year with Cluster headaches by Prof Spira at Prince of Wales Hospital in Sydney. Being his supporter while working closely with the Neurologists and Pain Specialists and Psychiatrist to develop a best treatment plan for my husband had opened my eyes to how difficult it is for an average GP to deal with this rare but extremely painful and delibitating condition. There was hardly any mention of it at Medical School and still there is very little known about this complex syndrome. Patients often are misdiagnosed for years and miss out on the best effective treatments due to difficulty accessing up to date information. I have since done a lot of research into the condition and have gathered many useful information and guides on how to diagnose and to successfully treat cluster headaches. I would like to share this information with as many doctors as possible, especially GPs. I know we do not have a lot of time on our hands to research this deeply into each and every illness that we encounter in our surgery, therefore I hope you will find the information useful and easy to read. I would like to place a special emphasis on oxygen being the first line abortive treatment for cluster headaches, even before Triptans. Many studies recently all over the world are confirming the safety and the efficacy of inhaling pure oxygen via a non rebreather mask at high flow rate (minimum 8L/min, ideally up to 15L/min ) at the first twinge of pain to abort a cluster headache attack. Its cheap, its easy to use, its safe and its effective. Home oxygen therapy is a must for all cluster headache patients. Neurologists and other headache specialists are starting to recognize and recommend this treatment, from Dr Kudrow in the US to Prof Goadsby in England. Personally I can vouch how well oxygen had worked for my husband. His case was considered atypical and he was not responding well to many cluster medications, until he received home oxygen. Once he mastered the techniques he managed to abort more than 80% of his attacks, reducing the need for triptans from several a day down to one every few days. This has reduced the side effects of triptans and other medications and improved his overal health. As GP, we are in an unique and perfect position to recommend and prescribe home oxygen for our cluster headache patients. Home oxygen has been prescribed for many years to patients with respiratory diseases and has had a very good track record for safety. As it lessens the need for other more expensive medications such as triptans and zyprexa and pain killers, it also makes good economic sense. I am including other relevant information on cluster headaches for your perusal. I can be contacted at the above address for further information. I will be more than happy to discuss with you any aspect of the condition. You can also reach me via my email annsie99@aapt.net.au. I trust that you have found the information useful. I wish you every success in treating your patients. You will be amazed at the difference it will make to your cluster headache patients general health, quality of life and it will also improve the lives of their families. Yours sincerely, Dr Annette Do BHB. MBChB |
||||
|
Title: Re: Has anyon ever beat the beast? Post by BB on Apr 26th, 2007, 1:03am I also hereby offer the same service to anyone on the Board who thinks that a similar letter to their doctor(s) might help. Please do not ever hesitate to drop me a PM or an email. I am more than happy to do whatever I can in my capacity to help out. Love to you all and painfree wishes. Annette |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChris on Apr 26th, 2007, 7:52am To sum her up in one word....Unbelievable!!! Thank you once again! Chris! |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Brewcrew on Apr 26th, 2007, 7:56am Annette, you are a godsend. If there was ever any doubt as to why you ended up with clusterhead, this kind of thing should clear it up a bit. |
||||
|
Title: Re: Has anyon ever beat the beast? Post by chewy on Apr 26th, 2007, 8:25am Good letter Annette. Pay no attention to BikerBob. Being discredited by that guy counts as an asset! 8) |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Angie on Apr 26th, 2007, 8:28am Hi Chris I am Barry's wife Angie and Annette has been a great help here. I do not post much but I read everything to gain knowledge to help him. O2 seems the only line of defense as everyone has said. It is time for us to move in the right direction to fight this nasty affliction. Thanks Margi and Annette for all the advise, we appreciate this. Chris, hang in there we are all together in this. Angie |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChris on Apr 26th, 2007, 8:41am Hello Angie, Nice to meet ya! If your going with barry this morning, Don't let him leave without that o2 script! Sorry for the language, but we need to get this shit taken care of in Canada. They will give us anything under the sun regardless of the side effects but when it comes to pure oxygen, thats a No No. Gee you think theres a litttle bit of financial persuation going on here? Brutal! Hope all goes well today! Chris |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Maffumatt on Apr 26th, 2007, 9:20am To me, this is what CH.com is all about. Good job! |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Margi on Apr 26th, 2007, 10:29am on 04/26/07 at 08:41:44, ClusterChris wrote:
No, Chris, I think it's more a question of our doctors being so horribly overworked because many of them have gotten greedy and are moving to the States where they can make bigger bucks. The ones that decide to stay (and, trust me, the salary they make here IS well above the rest of us!) just don't have the time to keep current with new research because of their huge patient roster. Our GP's are especially overloaded - that's why it's so important to get pushed through to a specialist, one who HAS been trained in headache care. We do have some fabulous Headache Clinics in Canada - it's just that it sometimes takes moving Heaven and Earth to get in to them. I think it's more a lack of education on our GP's part than anything. |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChris on Apr 26th, 2007, 10:34am But why do they not even flinch to prescribe us every med under the sun but when it comes to oxygen it's a no no. regardless of their knowledge, why are they so hesitent on prescribing it if somedoy tells them it helps? |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Margi on Apr 26th, 2007, 10:41am actually, oxygen therapy CAN be dangerous for someone who doesn't need it. Let me do some research for you but I know there's been lots written on the dangers of oxygen. Here's a bit about the dangers of oxygen therapy (I assume for people with weakened pulmonary function?) "Dangers Pulmonary oxygen toxicity has not been seen at the low rates of flow used for long-term oxygen therapy. Although supplementary oxygen in patients with increased Paco2 may theoretically worsen hypercapnia, any increase in Paco2 in patients receiving long-term oxygen therapy is usually small and well tolerated. In two large trials of long-term oxygen therapy, hypercapnia was not a problem — probably because patients were in a stable condition.3,4 However, serious hypercapnia may occasionally develop, making further investigation and consideration of non-invasive ventilation appropriate. The development of hypercapnia is suggested by an obvious decrease in respiratory rate and depth, as well as the development of somnolence and disorientation. The risk appears greater during acute exacerbations of disease and in patients who are generally more hypoxaemic.27,28 Sedatives, narcotics, alcohol and other drugs, which impair the central regulation of breathing, should not be used in unstable patients with hypercapnia who are receiving oxygen therapy." taken from this article: http://www.mja.com.au/public/issues/182_12_200605/mcd10865_fm.html#elementId-1089306 |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChris on Apr 26th, 2007, 10:58am Damn you margi, You have got an answer for everything don't you. I am trying to lash out at the doctors and your defending them! Shame on you ! LOL just kidding, Thanks for the info. Chris P.S. I still think its shit ;) |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Margi on Apr 26th, 2007, 11:00am LOL Chris - I think I've heard those very words coming out of my hubby's mouth too. Only maybe he phrased it a bit differently .....'knowitallsmartass' or something to that effect. ;) for what it's worth, I think it's shit too but...the scientist in me has to keep digging until I found out WHY things are they way they are. |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChris on Apr 26th, 2007, 11:03am I hear ya! Keep up the good work! |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChris on Apr 26th, 2007, 11:53am Come on Barry, where are ya? The suspense is killin me here! |
||||
|
Title: Re: Has anyon ever beat the beast? Post by barry_sword on Apr 26th, 2007, 12:07pm I'm right here Buddy. We were just getting a couple of things together for this post. Bottom line, I got o2 here in my house! My neuro asked me what I would like to try this time? I said o2 and he said ok right away. I had all my printed sheets and showed him and he was 100% agreeable with this. This is where we get our o2 (1km. from my house) and the non-rebreather mask and the tank. Total cost: $140.00 Canadian. http://im1.shutterfly.com/procserv/47b7da07b3127cce8450e0468ce900000046101AZtGrZu5asU http://im1.shutterfly.com/procserv/47b7da07b3127cce8450f8228c8100000016101AZtGrZu5asU http://im1.shutterfly.com/procserv/47b7da07b3127cce8450f8210db200000016101AZtGrZu5asU |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Margi on Apr 26th, 2007, 12:16pm Good for you, Barry! If you have supplemental health care coverage, you should submit your receipts for reimbursement. It took us a couple of tries and, ultimately, a letter from our neuro to Manulife, but they do now fully reimburse for all O2. It's worth a shot! What size tank is that? Looks like you got the right gear - let us know how it works for you. |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChris on Apr 26th, 2007, 12:16pm YOU BASTARD!!!!!!! Congrats buddy! Wish it was that easy here. Hopefully annettes letter will get through to my doc. Make sure you keep me posted on the results. Chalk one more up for the Clusterheads! Talk to ya later, time for me to take a jab and stare t your picture of the tank lol! Chris |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Linda_Howell on Apr 26th, 2007, 12:21pm What an ugly looking bottle to be stared at with such reverence and love. ;) |
||||
|
Title: Re: Has anyon ever beat the beast? Post by barry_sword on Apr 26th, 2007, 12:33pm Thanks Margi, Angie is summiting the forms today but if it is not covered that is ok with us also. A small price to pay if it works for me. Chris, hang in there!! I talked to my neuro about neuro's in your area and he does not know of any off hand. He said he wanted to raise his family and have a practice in a small town setting. He did say you need to get to a neuro with your CH's. Like Margi said our GP's are over loaded, so you need a referral to a specialist. You are still welcome to share my o2 but by the time you drove here the CH would be gone and the All kidding aside Chris, I am there for you all the way, Buddy. Talk to me anytime, ok!! Barry |
||||
|
Title: Re: Has anyon ever beat the beast? Post by BobG on Apr 26th, 2007, 12:37pm Since Guiseppi mentioned my name in the first reply of this thread I think I should say that I have not had a 'true' cycle for about 7 years. But, that doesn't mean I never have an attack. I still get a yearly cycle (cluster) of shadows (KIP 2-3's) usually January to March. I don't consider them a true cluster, just a minor irritation. I also have a occasional wake-up call, maybe once every 6 weeks. They are strong enough to wake me, usually hit only a Kip 5-6 and are gone in about 20 minutes with an ice pack. They are always during a night after a stressful day. One more thing...........yes, woodpeckers have lips. "tougher than woodpecker lips" was a favorite saying of my grandfather. I first head him say it when I was a kid, about 55 years ago! It took me a long time to figure out what he meant but I finally caught on. |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Major on Apr 26th, 2007, 12:44pm Hi Chris, Shoppers in Ontario definately carry melatonin. They don't carry kudzu there - I called a bunch of healthfood stores before I found it. We now have a store right near us that carries it, so let me know if you're having trouble finding it out your way. Good luck with your GP. Jeff's family dr prescribed 02 (right regulator and mask too!) without hesitation after we brought in the printouts. Funny enough, his original neurologist didn't give it to us though - said it was very expensive, hard to get in the house, etc etc. None of that was true though - very inexpensive (especially compared to trex) and very easy to get delivered. As for headache clinics, there is one in Hamilton - here is the info. You'll need a referal from your GP to get in though. Dr. Rose Giammarco Neurologist interested in Headache Director of the Hamilton Headache Clinic 25 Charlton Avenue E. Suite #808 Hamilton, Ontario L8N 1Y2 905.523.5788 |
||||
|
Title: Re: Has anyon ever beat the beast? Post by barry_sword on Apr 26th, 2007, 12:46pm on 04/26/07 at 12:16:30, Margi wrote:
Margi, this is a "M tank" about hip high as long as one is not a midget. [smiley=laugh.gif] Linda, you are so right, how can something so ugly on the outside be so beautiful inside! :) Thanks Ladies, now we have to get Chris his o2. Barry |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChris on Apr 26th, 2007, 1:57pm Ya Ya, I know barry your here for me. Bullshit, Your in love with your o2 tank now, forget about the rest of us. Lmao, sry I just had to do it cause I'm jelous as hell! I'm sure I'll get mine soon enough! Enjoy it, you deserve it! Hope it works like a charm! The health food store down the road caries kudzu So i'm good there! Off to work now, talk to you all shortly! Chris |
||||
|
Title: Re: Has anyon ever beat the beast? Post by barry_sword on Apr 26th, 2007, 3:40pm on 04/26/07 at 13:57:52, ClusterChris wrote:
Yea Chris, there is a certain bond with the tank and it gets it's own room too! I just hope it works for me, time will tell. Barry http://im1.shutterfly.com/procserv/47b7da07b3127cce845130932d2800000016101AZtGrZu5asU |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Guiseppi on Apr 26th, 2007, 5:07pm Love....int all its forms....is a beautiful thing!!!!! [smiley=laugh.gif] Guiseppi |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Chillrmn1 on Apr 26th, 2007, 5:47pm Congratulations Barry! O2 was a godsend for me, I hope it works as well for you as it does me. Will be waiting to read how well you respond. You're next Chris. Regards, Bob |
||||
|
Title: Re: Has anyon ever beat the beast? Post by BMoneeTheMoneeMan on Apr 26th, 2007, 7:52pm Hugging your tank grinning from ear to ear....thats funny stuff!! ;;D I thought medical stuff was a right in Canada and provided to all. Howcome you had to pay for it? |
||||
|
Title: Re: Has anyon ever beat the beast? Post by barry_sword on Apr 26th, 2007, 8:08pm Unfortunately not all is free here. This like a prescription med that we pay for and if we have our own insurance we get most of it back, in which I will get about 80% back from the o2. I can go to my GP Doc and Neuro, and ER and not get billed as long as I have my Ontario Health Card. Any extras like scripts I pay for. Barry |
||||
|
Title: Re: Has anyon ever beat the beast? Post by pieface_49 on Apr 26th, 2007, 10:01pm I am new, but this is what clusterheadaches.com is about :)). For someone to take the time to understand us, who is not one of us, is a blessing. For someone who just wants to help, spending a lot of their time chatting with us, is truly something to be grateful for. Only someone who has seen firsthand can only begin to comprehend. With a tear in my eyes, Thank You Annette. From the bottom of my heart, Thank You, Donnie |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Batch on Apr 26th, 2007, 10:22pm Chris, Barry, A little something heading your way... Great pix of the Rx and home O2 cylinder. |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChris on Apr 26th, 2007, 11:34pm Very nice bary, just keep rubbing it in ya bastard lol! Have you tried it out yet?? Batch, Thats awsome, thanks a bunch for that info. Looks like that covers pretty much everything! I'm going to print it out in the morning. Going to try and get an appt with my doc on monday, I want to see if she has changed her tune since annette sent in the info. I will also get a referal to the neuro in Hamilton, I forget who gave me that name but that you for that. I'll keep ya's posted. I might just have to build my livingroom greenhouse this weekend and lock myself inside! Hope all the noggins are well! Oh yeah, I tried redbull tonight. I tchugged one when i felt the first little tinge of a shadow, after about 5 or 6 minutes I got a touch worse so i chickened out and took a shot of trex. about an hour ago I felt the same thing so I chugged the second one and here I am still pain free. Maybe the (expensive ass hell) shit actually works! Ok thats enough for now. Catch ya guys later! |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Batch on Apr 27th, 2007, 2:10am Chris, Thanks. We should have the User's Guide on line shortly. Sounds like Barry got his O2 kit up and running, shot the beast in the backside, and sent it away in short order. Keep us posted on the results of your next visit with the doc. I've a few good friends at NIH that may be able to fire a warning round across her bow. Take care, Batch |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChuck on Apr 27th, 2007, 2:48am Did someone mention OXYGEN ?? ?? ?? Would you believe I used MOST of this up in this past week? Does that tell you what my week has been like? I LOVE my oxygen! http://i170.photobucket.com/albums/u266/ClusterChuck/PICT0220.jpg?t=1177656021 There are 8 "M" tanks, and 7 "E" tanks ... BTW, Barry, that beautiful tank you are making out with, is what my vendor calls an "M-60" tank. http://i170.photobucket.com/albums/u266/ClusterChuck/PICT0225.jpg?t=1177656051 http://i170.photobucket.com/albums/u266/ClusterChuck/PICT0227.jpg?t=1177656087 Ah yes!!! Dear LOVELY tanks!!! Chuck |
||||
|
Title: Re: Has anyon ever beat the beast? Post by artonio7 on Apr 27th, 2007, 2:58am on 04/27/07 at 02:48:00, ClusterChuck wrote:
....now we've got to do the demo video ;;D with warm regards, Tony |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Batch on Apr 27th, 2007, 6:14am :o :o :o Awesome Chuck... To you my friend, a FALCON 101, a FALCON 104, and a FALCON 109 all rolled into one!!! Looks more like Wendel's Welding Supply even if it is all Medical grade O2. Tony, the demo video is already in work.. ;;D |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChris on Apr 27th, 2007, 7:36am Damn Chuck, You living in a Rocket Ship? |
||||
|
Title: Re: Has anyon ever beat the beast? Post by barry_sword on Apr 27th, 2007, 7:41am on 04/26/07 at 23:34:43, ClusterChris wrote:
Yes Chris, twice. My first was 9:05pm jumped on the o2 and 15mins. later no CH. 12:05am woke up jumped on the o2 and 15mins later no CH. I like this stuff, and no CH hangover, and Angie said I looked normal(stop right there) instead of being all beat up looking. I know both these hits would have been real head bashers but the o2 aborted them both. THANK YOU! Chuck, my heart goes out to you, you are having such a tough time. Batch, thank you for the o2 manual. Now to get Chris his o2. Barry 8) |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Brewcrew on Apr 27th, 2007, 7:55am Ground control to Major Chuck.... I'm going to have to send you a fingernail clippers. ;;D |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChris on Apr 27th, 2007, 9:41am Great Barry, So have you stopped taking all meds since the o2? I just got back from the drug store. picked up some melatonin, kudzu root, and refilled my trusty imitrex! I'll see how the new combo works out! Chris |
||||
|
Title: Re: Has anyon ever beat the beast? Post by barry_sword on Apr 27th, 2007, 10:03am Hi Chris. I have been med free about 3 weeks now but was trying Red Bull (did not work for me) but other than that I just rode them out. I thought my cycle was ending so was hoping every day was the last hit, WRONG AGAIN! I hope your Doc really reads Annette's letter and scripts you the o2. I can't believe two hits aborted last night and feel human afterwards. I think my cycle will end soon just have to get my immune system back up to speed. I can't find a list of neuro's in Southern Ontario but Margi, Carol and others much better at this will be able to help. Don't waste too much time on that greenhouse, I don't think it will work! [smiley=laugh.gif] How was your shift last night? PFNAD Buddy! Barry :) |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChris on Apr 27th, 2007, 10:26am Barry, How far off #11 Highway are ya? I usually head up that way a couple times a year. We do an ice fishing trip to Nippising Every Year, I'm usuall at Simcoe a few times and i also head up to #60 and take it across to Barry's Bay! Might have to make a stop in sometime and drink your beer! Chris |
||||
|
Title: Re: Has anyon ever beat the beast? Post by barry_sword on Apr 27th, 2007, 10:42am Are you kidding? I live in town and can almost see Hwy.11 from my house. Let me know and I will stand beside the highway with a sign, ok? Barry |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChris on Apr 27th, 2007, 10:50am nice! Probably wont be heading up untill august but I'll keep ya posted! FYI I drink Blue! :P I may be heading up to Bass Pro shortly , if your not to far from there that could be aan option as well! |
||||
|
Title: Re: Has anyon ever beat the beast? Post by barry_sword on Apr 27th, 2007, 10:53am Done deal!! 8) Barry |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChuck on Apr 27th, 2007, 9:23pm on 04/27/07 at 07:55:09, Brewcrew wrote:
What is wrong with my nails? I JUST trimmed them! I need to keep my nails long for my job ... I discovered with them a bit longer than normal, it is MUCH easier when building CAT5 cabling ... Both in putting connectors on the end, and when connecting to punch blocks. The nails are GREAT to push those little wires into position, and keep them there, while you get all of them in, before using the punch down tool. Makes the job MUCH quicker and easier. The only problem I have, is which color do I go with? http://i170.photobucket.com/albums/u266/ClusterChuck/PICT0240.jpg?t=1177722132 The left hand (Sally Hansen's Diamond Shine) is more subtle ... But the right hand (Revlon's #740, Get Ready) is striking, don't you think? Decisions, decisions!!! Chuck |
||||
|
Title: Re: Has anyon ever beat the beast? Post by pieface_49 on Apr 28th, 2007, 10:14am :o |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Brewcrew on Apr 28th, 2007, 10:47am on 04/27/07 at 21:23:04, ClusterChuck wrote:
Ummmmm.....In the words of Emily Latella...nevermind. |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChris on Apr 28th, 2007, 12:00pm I'm stayin the hell away from this one! :o |
||||
|
Title: Re: Has anyon ever beat the beast? Post by barry_sword on Apr 28th, 2007, 12:01pm Me too!! Barry ;;D |
||||
|
Title: Re: Has anyon ever beat the bea Post by ClusterChuck on Apr 28th, 2007, 2:07pm BWAHAHAHA!!!! |
||||
|
Title: Re: Has anyon ever beat the beast? Post by barry_sword on Apr 28th, 2007, 2:49pm [smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif] Barry |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChris on Apr 28th, 2007, 4:24pm ok, so now that we have gotten that out of the way........... :-/ |
||||
|
Title: Re: Has anyon ever beat the beast? Post by andrewjb on Apr 28th, 2007, 6:47pm yes ! to my utter suprise. i have met two guys this month, one, an american comedian "reg harvey", working in london, these last ten years. and a guy i used to work with. both say they havent had a hit since they were 24, there now in there early 40s. and both suffer insomnia. andrew |
||||
|
Title: Re: Has anyon ever beat the beast? Post by George_J on Apr 28th, 2007, 7:38pm I don't have the reference handy, but Bob Johnson posted the results of a Scandinavian CH study a while back that estimated the number of clusterheads in the general population. Among other things, if I recall correctly, it indicated that quite a large percentage of people who get CH only get a few cycles, or even only a few attacks. I found that interesting. I suspect that the people at CH.com are not completely representative of the CH population in general. Perhaps the percentages are a bit skewed--after all, it at least seems to me that the number of chronics here vis-a-vis the episodics is much higher than in the CH population in general. But that's just a general impression--I have nothing to back it up. Maybe many of us end up here simply because we're chronics or long-time episodics. If that is the case, a great many people that we don't know of have "beaten" the beast, after only a brief acquaintance with him. Speculation, nothing more. Best, George |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChuck on Apr 28th, 2007, 8:06pm on 04/28/07 at 19:38:05, George_J wrote:
I think you may be right, George about CH.com not being truely represental. As far as the higher number of chronics, there are two reasons for that, I suspect. One is that some claim to be chronic, yet when they describe their cycle time, and PF time, they really are not chronic. The second reason could be that virtually all the chronics stay here day in, day out, while MANY episodics, leave once their cycle is over. There are a lot of episodics that DO stay here, even out of cycle (which is AWESOME, and truely appreciated), but I suspect there are many more that quit coming, once the cycle is over. That would make it look like there is a much higher rate of chronics here. Chuck |
||||
|
Title: Re: Has anyon ever beat the beast? Post by BB on Apr 28th, 2007, 9:10pm Not to mention the number of misdiagnosis. Many may have thought they have cluster, then later found out they have something else, so they dont come back here. There are currently 2 hypothesis going on about the cause of CH, one is that the hypothalamus just goes out of whack for whatever reason, such as stress or infection ( how many people have noticed that the beginning of a cycle resembles symptoms of flu or sinus infection? ) and one by Prof Goadsby that finds some abnormality in the genetic/cellular development of the hypothalamus. I would say both are right. Its like diabetes, one can develop diabetes by eating too much sugar and fat all their lives, other by becoming pregnant ( gestational diabetes ) and others are born with it. With gestational diabetes once you deliver the baby, the diabete stops but you remain at risk of it if you are not careful. So if you are unlucky enough to have been born with some abnormality in the hypothalamus, its likely that once you develop CH it wont go? But if you only develope CH in response to severe stress to the body, maybe once your body has healed and is back in balance that you can have a very long remission, although you remain at risk of it? and if you continue to stress your body physically or emotionally, its more likely that your hypothalamus will continue to malfunction just like a type II diabetic who doesnt learn to control his diet. Just my 2 cents. Annette |
||||
|
Title: Re: Has anyon ever beat the beast? Post by GrandPotentate on Apr 28th, 2007, 9:39pm Well, here's 2 cents from a guy who thought maybe, just maybe, he did. I quit smoking five years back, which was pretty easy 'cause the brain doc had me so doped up I didn't even notice. BTW, the dope didn't do a bit of good, but the O2 that he tried later helped a bunch! Since that cycle I was pretty much pf. I moved to a new town, found a new doc who actually had heard of this beast and favored the O2 thing, but never really had to resort to using it. Only a few mild cycles with some shadows and mild stuff. We were both feeling pretty good about the quitting smoking thing, too. Here comes the irony. Ol' doc goes on vacation, retires, and I'm stuck with some new kid doc, and Wham! - I've got a really dandy cycle starting up. This guy thinks I'm some sort of nut case making this shit up. Isn't there anything about this in their pdr? |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChris on Apr 30th, 2007, 6:13pm CHRIS IS GOING TO BE SUCKIN BACK SOME CRISP, CLEAN o2!! I'll explain later, was in docs office for over an hour gotta make dinner!! |
||||
|
Title: Re: Has anyon ever beat the beast? Post by barry_sword on Apr 30th, 2007, 7:35pm [smiley=thumbsup.gif] [smiley=thumbsup.gif] When you get time! So Happy! ;;D ;;D ;;D Barry |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Grandma_Sweet_Boy on Apr 30th, 2007, 7:40pm That's great news Chris. Now and again - the medical folks do listen up!!! Did you get the right mask? Sure hoping this gives you the break you need. Carol |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChris on Apr 30th, 2007, 7:54pm Thanks guys! It's a long story and I don't have the time to type too much at the moment, once i get the kids down @ 9pm I'll hop in the chat for a bit if anyones interested. About the mask, I have no idea, She is setting it all up with vital air. I gues I won;t know what I'm geting untill they drop it off (which i hope is tomorrow sometime). I was so shocked :o I didn't ask questions. Talk to ya soon! Chris |
||||
|
Title: Re: Has anyon ever beat the beast? Post by pieface_49 on Apr 30th, 2007, 8:41pm The end to a nice story :). Hope the O2 helps Chris. Someone mentioned statistics and this one is interesting: Note the number of women going to hospital vs men for CH http://www.wrongdiagnosis.com/c/cluster_headache/stats.htm Scroll down to statistics and the statistics are much less than the reported 0.1% of the population. In the US it is reported as 0.04%. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=14763953&dopt=Abstract http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12876249&dopt=Abstract Not many statistics to be found concerning CH. None concerning how many get CH and go into remission for extended lengths of time. Donnie |
||||
|
Title: Re: Has anyon ever beat the beast? Post by GrandPotentate on Apr 30th, 2007, 9:20pm At that rate, there are about 200,000 CH's in the US. There are around 100,000 GP's, so every Dr. has about two of us on average. Apparently, there are some docs that are hoarding, I seem to find the ones that have never heard of such a thing. Is there any listing of knowledgeable docs? |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChris on Apr 30th, 2007, 9:21pm thanks donnie! |
||||
|
Title: Re: Has anyon ever beat the beast? Post by BB on Apr 30th, 2007, 10:00pm on 04/30/07 at 18:13:18, ClusterChris wrote:
YAY ! WHOOOHOOOOO !!! YABBA YIPPEE DOOO .. Annette ( who is jumping up and down ) |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Chillrmn1 on May 1st, 2007, 5:26am Great news Chris. Let us know how you respond with it. Hope it works well for you. BTW - Since trying O2 2-1/2 years ago, I've only had to use Imitrex twice....and both times was due to a trigger caused by a local anesthetic and didn't have my O2 with me. Good luck! |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChris on May 1st, 2007, 5:55am Chillrmn1, If I get those same results, I will be one happy man! The first couple times wil be a little scary, knowing I have the trex that will work 100%. But I'm willing to tough it out(I think) lol Thanks Chris |
||||
|
Title: Re: Has anyon ever beat the beast? Post by barry_sword on May 1st, 2007, 6:32am Chris, this such good news. My first time using o2 was a little awkward but you will learn fast. Like Carol said, make sure you have the right mask. My non re-breather mask was like 5 bucks, so if you did not get one let me know and I will courier one to you ASAP. Be sure to read the manual sent to us, it is all in there. I am back to work today so I won't be on here during the day but will get back up to speed tonight. PFDAN and happy o2 breathing. We are so happy for you. Barry ;;D |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Margi on May 2nd, 2007, 3:36pm AWESOME news, Chris! Can't wait to hear how it works for you. You HAVE to get on it at the FIRST sign of attack, ok? YAY!! :) |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Linda_Howell on May 2nd, 2007, 6:30pm and stay on it for about 5 mins. after too. ;) |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Kontrolr on May 4th, 2007, 6:59am Beat it?? im a fighter....then again its 4:00 in the morning....hopefully non of yall are up reading this.....goodnight all!! |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Superpain on May 17th, 2007, 8:29pm Much easier to spank the monkey than to beat the beast. [smiley=laugh.gif] |
||||
|
Title: Re: Has anyone ever beat the beast? Post by Ray on May 17th, 2007, 8:34pm Hello Everyone: Just putting in my two cents... Beating the beast comes one moment at a time. It's a conscious decision that one makes to not let the beast stop you. When you won't participate in life, it's winning. When you go about your life and he appears, you deal with him as best you can. You don't go provoke the beast -- Like drinking alcohol when you're susceptable, that would be silly. In the worst of the worst attack, you might scream, pace, and want to explode, but also pray and know it will be over when it runs its course. Know your enemy, that's key. Know your tools to fight the beast. Do your best to know where they [tools] are. At one time, I tried to figure where the closest place of retreat would be, a quiet place where I could wrestle with the beast when he attacked, while I was out and living life. View the enemy/beast as evil, and you are good. The good is destined to overcome the evil -- read The Book of Revelation for inspiration! And when you begin to feel sorry for yourself, read The Book of Job. Wishing you victory over the beast, one moment at a time. Ray |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Shedz on May 17th, 2007, 8:37pm :) :) :) :) :)Nice one :) |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Jonny on May 17th, 2007, 8:40pm Two weeks and no update....must be working ;;D |
||||
|
Title: Re: Has anyon ever beat the beast? Post by barry_sword on May 18th, 2007, 6:31am Hey Chris, how about an update on how you are doing with the o2? Did you get everything you need? Let us know, ok. Hope you are getting some PF time. Barry |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Maffumatt on May 24th, 2007, 8:23am Chris can you update us? I am curious as to how Annettes letter to your doctor went over. |
||||
|
Title: Re: Has anyon ever beat the beast? Post by taraann on May 24th, 2007, 10:02am I don't know if I answered this thread and I'm too lazy to go through all 7 pages. My grandpa had Clusters (called histamine headaches back then) and one day he just stopped getting them. Unfortunately my grandmother can't remember how old he was when he stopped getting them. I don't remember him having them so I'm guessing before his 50's or so. So there is hope! |
||||
|
Title: Re: Has anyon ever beat the beast? Post by ClusterChris on May 24th, 2007, 10:58am sorry guys for some reason i didn't notice any new posts here. The letter worked like a charm. Athough I think she was a little insulted that I had another doctor send her information, I think that was the push she needed to allow me to try it. She ended up going online to do a little research after getting annettes letter as well. I have been breathin o2 for a few weeks or so now and it has been almost like a miracle. It would take my ch away in roughly 5 to 10 minutes everytime without any other meds. I just had to use my trex for the night time because i was too lazy to go to the basement, and I need it at work. My cycle is just about done. I get 1 or 2 light shadows a day now and am med free other then a couple advils when i feel a shadow. I also hit the o2 and it takes it away in about 5 minutes. Life is good and I plan on living it to the fullest untill it's that time again! Thanks to everyone that has been there for me (you guys know who you are) And once again a HUGE thank you to Annette for going out of her way like that! :-* This may sound like a goodbye but it's not. I'm still here! Chris |
||||
|
Title: Re: Has anyon ever beat the beast? Post by Maffumatt on May 24th, 2007, 11:29am Good deal.......... thanks for the update. |
||||
|
Clusterheadaches.com Message Board » Powered by YaBB 1 Gold - SP 1.3.1! YaBB © 2000-2003. All Rights Reserved. |