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Title: end of my teather Post by oscarcat on Sep 16th, 2005, 3:03pm hi i am 37 and i have suffered since i was22. this year i have had a realy bad bout of about 2 headaches aday for three months last week i had 2 pain free days then it came back but on the other side!!!!!!!!! cant get an appointment for 2 weeks cant go on its insane. |
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Title: Re: end of my teather Post by ghost62 on Sep 16th, 2005, 3:09pm hey oscarcat listen it suks but hang here with us and work through it there is alot of folks here that do understand ... dont give in to the beast please ok!!!!!!! guys some help here? |
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Title: Re: end of my teather Post by LeLimey on Sep 16th, 2005, 3:09pm Welcome! What do you mean you can't get an appt for two weeks? With a neuro or with your GP? That goes against all the government regulations so demand an emergency appointment and if you can't have one ring your PCT. That's completely unacceptable. I don't know if you have discovered OUCH UK at all but they will be a big help to you http://www.clusterheadaches.org.uk/home/index.cfm?address=../home/txt_we lcome.cfm&added=Dec2001&code=AD There is also a helpline which is brilliant. Talking to another clusterhead is amazing, there is nothing like it and no one will ever understand this pain the same. 0161 2721702 It is a answerphone, you leave your name and number and one of the volunteers (who are all sufferers themselves) will call you back) What meds do you have at the moment? Have you tried O2? I swear by it. It works brilliantly for me and its literally changed my life! Oh and there is a GP Info page too if its of help! http://gpinfo.ouchuk.org/ Let us know how you are getting on okay? Best wishes Helen |
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Title: Re: end of my teather Post by sandie99 on Sep 16th, 2005, 3:24pm Oscar, Warm welcome to ch.com! :) I'm so sorry you're hurting... :'( [smiley=hug.gif] (((((((Vibes))))))))) But I'm glad that you've found us. :) I used to live in the UK. I agree with Helen: try to get an emergency appointment with a doc. The reception staff at my local GP's were scared when they saw me during a ch attack that getting emergency appointment was easy after that. In the meantime, you can find lots of info about meds & treatments right here at ch.com. With some luck you can find something which helps you with the pain. I hope that you'll get appointment asap. Good luck! :) And do let us know how things are progressing, okay? PFdays, Sanna |
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Title: Re: end of my teather Post by Charlie on Sep 16th, 2005, 3:26pm Sorry the beast is making your life miserable. Here is a technique that worked well for me about 65-75% of the time: Dr. Wright’s Circulatory Technique: I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice. I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain. Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working. This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance. Charlie |
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Title: Re: end of my teather Post by oscarcat on Sep 16th, 2005, 3:27pm thanks i have been taking zomig and some beta blockers not much help though. will harass gp again tomorrow. thanks for the replys regards stuart |
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Title: Re: end of my teather Post by LeLimey on Sep 16th, 2005, 3:36pm Get your plan of attack sorted! Go and look at the ouch uk board and look under treatments at CD Oxygen. This will give you the info your doctor needs to prescribe cylinders with in built regulators so you will be ready to go as soon as your chemits can get it in. You will need a non rebreather mask too which you will have to pay for. Get the chemists to order it for you. Mine was about £6 from Boots although if you become a member of OUCH UK you can get two of them from there for that price! You might want to speak to your doctor about Imigran injections too. If he consults his BNF he will see they are in fact the only licensed treatment in the UK for CH. They work in 5-10 minutes and are in the form of an injector pen so are really easy to use. Its only a subcutaneous injection so it truly is a little prick if you'll pardon the expression! ::) Are you under a neurologist at the moment? If not ask for a referral as you deserve the best care possible. If you have any more questions or just need to talk please do okay? There's nothing worse than feeling alone with this and you aren't.. you have us now! Take care Helen |
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Title: Re: end of my teather Post by Mark C on Sep 16th, 2005, 3:43pm Welcome Stuart... http://tinypic.com/dpuvls.gif |
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Title: Re: end of my teather Post by Frank_W on Sep 16th, 2005, 4:20pm What Marc said!! |
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Title: Re: end of my teather Post by Carl_D on Sep 16th, 2005, 7:25pm Sorry you have to be here, but glad you found us. Lots of good resources here as far as treatments go. Check out the links to the left also. Have you tried o2 therapy? Peace & Vibes, Carl D |
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Title: Re: end of my teather Post by cootie on Sep 16th, 2005, 7:37pm What a bummer.......hope ya get some relief of sumthin that works from sumone. Can you go to the ER there if ya get too bad ? Good luck to ya ! Pain sucks Pam |
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Title: Re: end of my teather Post by oscarcat on Sep 27th, 2005, 7:10pm fuck this no more for me , too much for too long this was supposed to onlly last for 2-3 months , its now a life sentance >:( |
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Title: Re: end of my teather Post by Jonny on Sep 27th, 2005, 7:29pm on 09/27/05 at 19:10:46, oscarcat wrote:
Suck it up, meathead!!! Try 30 years chronic......you want to talk 2-3 months?.....GIVE ME A FUCKING BREAK!! Man, if you cant deal with alittle more than 2-3 months you might as well put the fuckin gun in your mouth now. Grow some fucking balls will you, unless you were born without any! Dont give me the "You dont know what im going through"...................Ive been there one thousand times more than you....You hear me? |
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Title: how much longer? Post by oscarcat on Sep 27th, 2005, 7:30pm does any one know how much longer this can go on? i have a doctors appointment a day from now after waiting 2 weeks for his time . but i fear he will section me after i tell him what i have been going through and what i have been tempted to do.this has been constant now for nearly 4 months stuart |
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Title: Re: how much longer? Post by Jonny on Sep 27th, 2005, 7:34pm on 09/27/05 at 19:30:55, oscarcat wrote:
Yes, in my case 30 years everyday. |
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Title: Re: end of my teather Post by oscarcat on Sep 27th, 2005, 7:35pm nice to know there are some compasionate thingys like jonny out there |
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Title: Re: end of my teather Post by Carl_D on Sep 27th, 2005, 7:37pm Stuart - It can get much worse, but it can also get much better too. Some folks suffer for years with this shit and then suddenly they go into permanent remission. You could even go chronic to where it happens year round, but there is ALWAYS HOPE! So don't go doing anything stupid because that is exactly what suicide is and is NO solution. Dude, click the below link, register and talk to me. Please http://www.clusterheadaches.com/chat/ |
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Title: Re: end of my teather Post by rextangle on Sep 27th, 2005, 7:41pm Hey Stuart, Hang in there man, learn to cope with it, deal with it. Read everything in the Medication and therapies section. Lots of good info. Try everything, find out what works and what doesn't.... I'm chronic, but I've learned to live with this shit... DON"T GIVE UP! Oh, and Jonny is actually very nice... that's just how he greets new folks... he's actualy the King here in case you didn't know.... I'll translate his message to you: Sorry you have to be here, but welcome... Cheers, Rex ;) |
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Title: Re: end of my teather Post by Kate in Oz on Sep 27th, 2005, 7:42pm Hey Stuart, Sorry you're having such a hellish time of it :-/. I had a cycle that lasted 6 months, but normally they only last 6-8 weeks. Guess Jonny's got a point - can't imagine what it must be like being chronic - but it still doesn't lessen the pain when you're going through it. I just wanted to add - my headaches change sides when I'm getting to the end of a cycle... maybe a sign?? Good luck tomorrow, get the 02 if you can - its been a life saver for me. Also Verapamil has worked in the past with minimal side effects.... Wishin you the best, Kate |
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Title: Re: end of my teather Post by oscarcat on Sep 27th, 2005, 7:44pm sorry carl-d cant remember pass word or user id at the moment after 17 years i am afraid its going cronic buit still have to work 17 hrs a day 7 days a week |
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Title: Re: end of my teather Post by Carl_D on Sep 27th, 2005, 7:52pm Check the medical info, and try Verapamil and o2 therapy. Also try Zomig nasal spray. That seems to hel alot of people. I think my longest cycle was in '93 for 8 months. I went chronic in February of '98 but I am still here and refuse to let this kill me. The CH beast is anyones worst enemy and wants us dead I am convinced. If you give in, he wins. NEVER GIVE IN! If you run out of rope, there is always someone here who has some. Grab on and hold on. Peace, Carl D |
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Title: Re: end of my teather Post by Carl_D on Sep 27th, 2005, 7:54pm and if you still are having suicidal thoughts. call 1-800-SUICIDE (1-800-784-2433) Hang in there man, Carl |
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Title: Re: end of my teather Post by Kate in Oz on Sep 27th, 2005, 7:57pm You been working that hard for that long TAKE A COUPLE OF DAYS OFF !!! btw - sometimes I get a HOT hot water bottle stick it under the pillow slip, get on my knees, shove my head on the pillow and rock back and forward like a baby.... feels like your face is gonna burn off but great distraction to the other pain :-/ Kate |
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Title: Re: end of my teather Post by oscarcat on Sep 27th, 2005, 8:00pm thanks for the advice tried zomig for 2 months but to no effect this time i am going to sit in the doctors office until he takes me seriosly. my girl friend tries to be understanding but i think she finds my pain an inconvieniences as she is also my buisness partner in a busy restaurant and i am the chef and she gets pissed of with my mood swings due to lack of sleep and preasure at work stuart |
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Title: Re: end of my teather Post by oscarcat on Sep 27th, 2005, 8:10pm jonny i guess yours is much worse ill send you a get well card stuart |
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Title: Re: end of my teather Post by E-Double on Sep 27th, 2005, 8:16pm Having 1 Cluster attack is too much....period, however many go on and on and on. For a decade I had 2 brief cycles per yr. Last yrs. spring cycle never broke (pushing 19 months) I stopped questioning whether today would be the day when it would end..... Try not to worry about when it will end. Concern yourself with trying to live and and breathe :) Best, Eric |
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Title: Re: end of my teather Post by rextangle on Sep 27th, 2005, 8:17pm Well said Eric! |
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Title: Re: end of my teather Post by ClusterChuck on Sep 27th, 2005, 8:23pm Stuart, you can do this! You have dealt with it all these years, you can continue. Even if you go chronic. I have had CH for 27 years, chronic the last 7 years. The last two and a half years, I have stopped responding to any preventatives. I cannot use any tripptans, due to the heart attacks I have had. I now get anywhere from 8 to 15 hits a day. In the last two months, I have been getting them on both sides. Many times, I get hit on my normal left side, and then a few minutes later, I get nailed on my right side. I have gotten used to them. I still work unreasonable hours. You can too. If I can do it, you can too. I am NOT a strong person. I am a wimp. I am a weakling. I am NOT anything special. There is nothing special that makes it so that I can take this. Any of us can. I have gone through some very rough times, and many can attest to that. Set your mind to it. Don't let the beast get the best of you. This family is here to back you up. They are here to yell at you when you need it. They are here to offer a shoulder to cry on, when that is needed. They are here to listen to you. Use the family, and then be ready to offer your support to another that needs it. You will be surprised at how that helps you as well as the other person. This is family, it involves give and take. Get involved. Meet other clusterheads. Read and listen. Many of us chat with each other on MSN messenger, and on Skype. Let us know if you are interested, and we will jump on and chat with you. You can do this. We can help, but YOU have to do it, and I know you can. Chuck |
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Title: Re: end of my teather Post by Jonny on Sep 27th, 2005, 8:26pm on 09/27/05 at 20:10:07, oscarcat wrote:
30 years of DAILY CH headaches? Yeah, id guess I had it worse than you. Save your card smartass, my HA's are nearly not there anymore.......Stop crying and learn to deal with whats in your head! This place is full of ways to do it or are you blind? |
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Title: Re: end of my teather Post by oscarcat on Sep 27th, 2005, 8:31pm jonny you must be one old bastard night night meat head stuart |
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Title: Re: end of my teather Post by Jonny on Sep 27th, 2005, 8:34pm on 09/27/05 at 20:31:30, oscarcat wrote:
Heres my conclusion. Attention getter, thats all this is. Im done. |
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Title: Re: end of my teather Post by Kate in Oz on Sep 27th, 2005, 8:40pm common Jonny, the guys pissed off, he's in pain - sometimes having an argument can relieve the pressure ???? Perhaps you're giving him the kind of support he needs right now - a distraction just an opinion :P please don't bite me ;) Kate |
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Title: Re: end of my teather Post by oscarcat on Sep 27th, 2005, 8:43pm thanks kate for your suport stuart |
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Title: Re: end of my teather Post by Jonny on Sep 27th, 2005, 8:52pm on 09/27/05 at 20:40:46, Kate in Oz wrote:
You dont come here to start fights unless your ready to be fought, am I wrong? Starting fights here is the sign of a loser! |
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Title: Re: end of my teather Post by Kate in Oz on Sep 27th, 2005, 8:58pm um... I don't really want to get into this in a big way... but :P He didn't come looking for a fight - he came looking for some support and sympathy.... what he found here well ..... on 09/27/05 at 19:29:33, Jonny wrote:
Kate |
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Title: Re: end of my teather Post by Sean_C on Sep 27th, 2005, 9:03pm My guess is its Hildo playing his games. Just a hunch. :-/ Sean.................................... He went straight for jonny's throat. His balls seem too big for his first day. |
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Title: Re: end of my teather Post by unsolved1 on Sep 27th, 2005, 9:08pm I agree with Jonny ... suck it up man! You're able to work 17 hrs a day then your pain can't be that bad! UNsolved |
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Title: Re: end of my teather Post by Jonny on Sep 27th, 2005, 9:09pm Sometimes folks need a virtual slap in the face, Kate. Why dont you ask Jas why she has her kid now. Its seems to me that we should hold peoples hands and cry with them as they shrink into "Poor me" I guess thats your way of dealing with CH, I guess you just not have been through enough pain to scream at someone to help themselves and stop whining. I dare you to start a thread, title it ....."How has jonny helped you" |
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Title: Re: end of my teather Post by Sean_C on Sep 27th, 2005, 9:15pm I'm not buying into any of this crap, Dildo's laughing his asss off right now ;;D Anybody remember there first day? Does this sound familiar? No fuckin way. Sean.......................................... |
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Title: Re: end of my teather Post by oscarcat on Sep 27th, 2005, 9:16pm have you read his facist web site? god help us all. |
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Title: Re: end of my teather Post by Sean_C on Sep 27th, 2005, 9:18pm on 09/27/05 at 19:44:34, oscarcat wrote:
Why doesn't he remember his password? Because his ICQ says he's someone else ;;D TROLL ;;D |
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Title: Re: end of my teather Post by Jonny on Sep 27th, 2005, 9:20pm on 09/27/05 at 21:16:30, oscarcat wrote:
TROLL ALERT!!!!! |
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Title: Re: end of my teather Post by oscarcat on Sep 27th, 2005, 9:20pm sorry sean whats an icq? |
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Title: Re: end of my teather Post by oscarcat on Sep 27th, 2005, 9:22pm came to this site for mutual consolance not verbal abuse it seems there are a few brave guys out there on the other end of a pc |
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Title: Re: end of my teather Post by Sean_C on Sep 27th, 2005, 9:27pm Cut the shit Dildo, games over ;;D YOU LOSE AGAIN ;;D That shit ain't right either, don't play games like that. Sean........................... |
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Title: Re: end of my teather Post by Jonny on Sep 27th, 2005, 9:30pm on 09/27/05 at 21:22:36, oscarcat wrote:
Brave? Send my card to Jonny Grasselli PO box 1473 Plymouth, Mass 02362 ............................................;;D PS...Im not shy ;) |
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Title: Re: end of my teather Post by oscarcat on Sep 27th, 2005, 9:30pm no games |
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Title: Re: end of my teather Post by Kate in Oz on Sep 27th, 2005, 9:32pm Hey Stuart - if you're in pain I'm feelin' for ya. Hope you get some help at the docs. and Jonny geez i don't know... I'm new here - maybe I should just shut my mouth ??? I just want to beable to help like you guys helped me... [smiley=frown.gif] that's all from me for today - diggin holes for myself aint my style (if I can help it) Kate |
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Title: Re: end of my teather Post by oscarcat on Sep 27th, 2005, 9:34pm thanks again kate good night stuart |
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Title: Re: end of my teather Post by Sean_C on Sep 27th, 2005, 9:39pm Jonny I think he meant to say "RACIST SITE" This is who he was a month ago guys, you've been TROLLED. http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=chspecific;action=display;num=1126302977 Sean.................................... FUCK OFF OSCAR ;;D |
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Title: Re: end of my teather Post by Jonny on Sep 27th, 2005, 9:39pm on 09/27/05 at 21:32:07, Kate in Oz wrote:
Yup, do you know John/Hdildo/CHtom/PMCKK? All of one person that have been making fools of folks like you. When you have posted on this board everyday for six years and get to know who the regular trolls are then you can add to this, do I have doubt that this is not a troll?.....no |
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Title: Re: end of my teather Post by Sean_C on Sep 27th, 2005, 9:42pm Dude it was definately him, check out that post i just did and scroll down, he says the same thing "racist sight" Sean............................. I will say that this takes the cake, low of low, even for you Dildo. |
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Title: Re: end of my teather Post by nani on Sep 27th, 2005, 9:44pm on 09/27/05 at 21:39:33, Jonny wrote:
Sorry, bro, no one can make a fool of me if I am being kind. If Stuart is that other guy(s), shame on him and who is really the fool? He is. If someone is genuinely suffering and needs warm fuzziness, I'd rather err on the side of caution. That doesn't make me a fool. hugs and pf wishes to all, nani |
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Title: Re: end of my teather Post by Sean_C on Sep 27th, 2005, 9:45pm on 09/27/05 at 21:16:30, oscarcat wrote:
on 09/10/05 at 17:21:42, brian_m wrote:
Convinced now?. Look no Capital letters either. Sean......................... |
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Title: Re: end of my teather Post by oscarcat on Sep 27th, 2005, 9:45pm sean c you are a fucking thingy what is this crap you seamed to belive troll is that the dolls you play with jesus christ. no wonder your fucked up |
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Title: Re: end of my teather Post by Sean_C on Sep 27th, 2005, 9:48pm I'm not playing this game anymore, This something DJ should step in on and say enough is enough. This guy is way out of line crying this crap. DEEJ BAN THIS FUCKER Sean................................... |
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Title: Re: end of my teather Post by oscarcat on Sep 27th, 2005, 9:52pm sean c why are you here just to antagonise people? or to piss people of eho cant sleep again from ch |
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Title: Re: end of my teather Post by Jonny on Sep 27th, 2005, 9:55pm Dont worry, DJ has been notified ;;D But what the hell is this? Quote:
Someone tell me thats not my website......LMMFAO ;;D |
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Title: Re: end of my teather Post by Sean_C on Sep 27th, 2005, 9:57pm on 09/27/05 at 21:52:32, oscarcat wrote:
Pick up your trash bag and get the fuck out of here TROLL. http://www.trollshop.net/trolls/trollparty/trollwoman.jpg |
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Title: Re: end of my teather Post by Sean_C on Sep 27th, 2005, 9:59pm The dumbass hit the "F" key instead of the "R" key. Look at your keyboard. He's a dumbfuck too ;;D |
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Title: Re: end of my teather Post by Carl_D on Sep 27th, 2005, 10:00pm [smiley=ohjez.gif] >:( |
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Title: Re: end of my teather Post by Jonny on Sep 27th, 2005, 10:09pm I still want to know if he meant my website damn it!!! |
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Title: Re: end of my teather Post by Sean_C on Sep 27th, 2005, 10:13pm on 09/27/05 at 22:09:28, Jonny wrote:
If he said PORN site LMMFAO I'd agree but definately not racist ;;D Night bro :-* |
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Title: Re: end of my teather Post by Jonny on Sep 28th, 2005, 3:38pm After further research I have come to the conclusion that this Stuart dude is not a troll. He has an actual email address that works and he answers it (not troll like) I am sorry to Stuart, but not sorry for trying to keep this place troll free......Sometimes shit happens! Welcome aboard Stuart......and I stand by my very first post......get mean!, its the only way to survive this shit. Ok, im done ;) |
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Title: Re: end of my teather Post by rextangle on Sep 28th, 2005, 3:46pm Well, yesterday I thought he was no troll and send him a PM asking to give me his phone number so I could call him and discuss different things he could try to ease the pain until he can see his doc. I told him I didn't mind paying the long distance charges and it would be my pleasure....He never replied... But in his post he wrote:"came to this site for mutual consolance not verbal abuse it seems there are a few brave guys out there on the other end of a pc" If that was the case he would have take me on my offer, and stop fighting with everyone, but apparently that wasn't the case... so... today I say "TROLL" [smiley=smokin.gif] |
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Title: Re: end of my teather Post by LeLimey on Sep 28th, 2005, 4:02pm Stuart I gave you good advice in recommending the info on OUCH UK. You have all the info there to take to your doctor to get meds which will help. Also there is the OUCH UK helpline as on my previous posts on this thread which you could ring if you need someone to talk to and also there is Samaritans 08457 90 90 90 or NHS Direct 0845 46 47. |
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Title: Re: end of my teather Post by oscarcat on Sep 28th, 2005, 5:42pm just fiished work pain free at the moment going to try to sleep quack at 830 in morning bye stuart |
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Title: Re: end of my teather Post by Sean_C on Sep 28th, 2005, 5:58pm He's brian_m and probably a bunch of other people. I can develop a new e-mail too, in fact I think I can create 7 with my internet provider. I'm standing by my original postings.........................TROLL ;;D Sean............................ |
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Title: Re: end of my teather Post by nani on Sep 28th, 2005, 6:12pm on 09/28/05 at 15:38:58, Jonny wrote:
:) :-* |
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Title: Re: end of my teather Post by Charlie on Sep 28th, 2005, 6:27pm Stick around Oscar. CH has a way of making people too quick on the draw.http://www.smiley-sanctuary.com/smiley/armes%20et%20dangereux/1/cowb.gif?SSImageQuality=Full http://www.netsync.net/users/charlies/gifs/wrestle.gif Hope you're doing better. Let us know how you're doing. Try the technique I posted awhile back. I works. Charlie http://smaylik.by.ru/i/15.gif?SSImageQuality=Full |
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Title: Re: end of my teather Post by oscarcat on Sep 29th, 2005, 2:46pm hello got a bit further with my gp today and he gave me max dose ofhalf securon and imigran injections. he has never heard of using oxygen but promised to look into it for me. so will see tonight if there is an improvement with the imigran. must go now as we have a late table of 12 to cook for. thanks for your help stuart |
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Title: Re: end of my teather Post by LeLimey on Sep 29th, 2005, 3:19pm Hi Stuart. Half securon is another name for verapamil but its the wrong sort. You have the sustained release type and they aren't as effective for CH. You should have the verapamil BP. What dose are you on? Have you been on it already and have you had any ECGs? With verap you should have an ECG before starting it and another after ten days and then each time you increase the dose. I'd be interested to see what your doctor reckons is the maximum dose as dosages for blood pressure and CH are vastly different! Get your doctor to look at the OUCH GP site, it will give him exactly the info he needs to see in order to prescribe O2. If he looks at the new O2 regulations he will see the SBOT (Short Burst Oxygen Therapy) specifically mentions the use of O2 for ch'ers which is down to the good work of OUCH and Mo Graham in particular lobbying Parliament to get those changes. Major Kudos is due to her for that! Get back in touch with your doctor tomorrow and press for the O2, give him all this info and get it! I can promise you that you will be euphoric over the change it will make for you. Let us know how you are getting on or if you need any more help. This is an area OUCH UK has been very successful in with lobbying PCT's to help people get O2 so don't be afraid to contact them. Helen |
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Title: Re: end of my teather Post by oscarcat on Sep 29th, 2005, 8:05pm hi helen i have been taking these half securon tablets for three monts at the dose of 1 120mg a day now he says build up to 3 tablets a day its all a science i tend to shy away from always trusting in the doctors advice in our case plain unlucky get on with it. bit scared now waiting for the pain and hoping the injections work. hope your feeling good thanks again for your support it means more than you could know good night stuart |
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Title: Re: end of my teather Post by oscarcat on Sep 29th, 2005, 8:14pm jonny and sean sorry if we fell out unlike me please accept my appologies stuart |
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Title: Re: end of my teather Post by LeLimey on Sep 30th, 2005, 4:15am Right Stuart now we can start getting you sorted! 120mg of verapamil is about as much use as a hcocolate fireguard for most people, 360mg will be more effective but I didn't start getting any relief until I got to 480mg so be prepared to maybe have to go higher. There are several people both in the UK and the UK who are on 960mg a day and over. You definitely should be on the BP version, that won't be a problem, just tell your doctor you have had that info from the OUCH UK site, he can look it up for himself. The sustained release version is just not effective for the majority of sufferers (there are always exceptions to the rule but they are a small minority!) Did you have an ECG? If not you need to tell him you need one and you should be definitely getting a referral to a neuro too if you aren't already under one. Next step Oxygen! If you're like me you will prefer a "med free" option if possible and the O2 is certainly that! I cannot tell you the difference it has made to my quality of life. To be able to abort an attack in around fifteen minutes without meds and feeling more relief with almost every breath was so amazing I wanted to stop people in the street and tell them about it! Now that I have a "mask of the Gods" (designed by a cluster sufferer) I can abort in usually around five minutes and its fantastic! I can't recommend it enough! If you decide to try O2 I would highly recommend them. They are available from www.clustermasx.com or send an im here to ben_uk as the website is set up for $ and we can get them at a UK price (since we have the £!) Alternatively there is the non rebreather mask which you can buy from Boots or any chemist (but they will have to order them in) for about £6-7. OUCH UK have them too at 2 for £5 plus about £1.40 postage which is a much better deal and well worth joining for! Keep posting, I know it seems like I'm pushing you to try other stuff and niggle your doctor but I can promise you that the changes to your quality of life will be worth it and why suffer more than you have to?! Helen |
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