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Title: Back with a vengeance... Post by miCHel on Feb 19th, 2003, 4:48pm Hello everyone! It's been almost two years since my last post but I still checked the message board regularly. I am glad to see the community is continuing to grow and the support offered is better than ever. After two years without any pain, guess who woke me up yesterday? And not once but twice... After almost twenty years of living with CH (episodic), I knew it was coming back but somewhere deep down, you always hope it won't. Anyway, I have a couple of questions for you. 1) I still have two shots of Imitrex still in the box and one that was waiting in my autoinjector (they were supposed to expire on Februaray of 2002). Any thoughts if I should use them anyway? They are so expensive... 2) I just got a new prescription for Prednisone and Verapamil. My doc advises me to try Pred for ten days and if it doesn't work, switch to Verapamil. Any thoughts? Any input will be greatly appreciated. Thank you all. miCHel PS Sorry about the poor quality of English because I am French (Canadian, that is! Please don't boycott me) ;) |
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Title: Re: Back with a vengeance... Post by Mark C on Feb 19th, 2003, 5:19pm Hello Back, Sorry about the head, I know how you feel. For me....I would use un-opened Imitrex without hesitation, for me. The prednisilone will problely knock out the cycle, at least for a day or two. If its a tapered dosage they tend to return for me after the steroid level drops. As for the verapamill I am no expert but I think it takes several days if not more to take effect. I am sure someone else has experience with this. .........and we ain't boycotting the French-Canadians....YET! ;D Good Luck, Mark |
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Title: Re: Back with a vengeance... Post by cbolony on Feb 19th, 2003, 5:47pm michel i would use the imitrex and use the imitrex tip on the left side of the board to make them last long. They is a post on the medication,treatment board about Prednisolone Verapamil Combo |
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Title: Re: Back with a vengeance... Post by oringkid on Feb 19th, 2003, 5:51pm I may be wrong... (yuse guys correct me if so) but, as far as the pred and verapamil go.... I think that some docs prescribe the pred to give you a "pain holiday" WHILE the verapamil starts to take effect. You should ask your doc about it. Now, he (or she) may not know, but ask them to check it out (if they will) but I think that if you begin the verapamil and start the pred taper course, the pred will give you relief from the attacks while the verapamil gets into your system. Now don't take my word for this......Others will probably jump in here and tell you what they have done. But you might call your doc and at least ask him/her about this. Hope this helps and welcome back (unfortunately :-/) Sherry |
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Title: Re: Back with a vengeance... Post by miCHel on Feb 20th, 2003, 9:12am Thanks for the advice! Started Pred yesterday night and had a good night sleep (which is good cause I fell asleep at my desk yesterday afternoon after my fifth attack of the day...). I will definitely check the tip for the Pred/Verapamil Combo cause my doc advised me of not combining the two. But as he admits himself (he's great for that), he's no expert. I once brought him the complete medical info from this site (twentysome pages) and he read it all in front of me (and he's French like me) debating what we could could try. Cool doctor! A lot of times, I swear this site is the best relief from this awful pain. You guys are great. miCHel |
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Title: Re: Back with a vengeance... Post by Mr.Happy on Feb 20th, 2003, 9:52am miCH, You should _Most Assuredly_ start chewing Verapamil.....as in TODAY. It takes a week or so to saturate your system and start working.........so.....yer burning daylight. Otherwise, once you're done the Pred, you'll be back at ground zero as far as hits go..... No problem taking the two together........the Verap is relatively benign. It's the Pred that can cause more probs w/side effects. Personally, I'd rather have a hysterectomy than take Pred.........the stuff makes me stark raving bonkers. Start on the Verap as soon as you read this...........and don't forget about O2. You didn't mention using it. Get a script for it, 8-15 liters/min w/a non-rebreather mask. Ovary and out, RJ |
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Title: Re: Back with a vengeance... Post by Lenny on Feb 20th, 2003, 10:30am As for taking verapamil with the pred.,why not ? Whenever i was put on steroid's,i was always taking my preventative meds. aswell ( in 2002,i was put on them 4 or 5 seperate time's - ROIDS )it was the only time that i ever really seemed to get a break from the beast. If you dont get any releif from verapamil alone,you might want to try Lithium with the Verapamil, its the only combo.that works for myself,and there are others that on this board that will second that. If you do get on the lithium,it is a MUST to have your blood work done.I have had to be taken off of it twice now :'(( CANT WAIT TO GET BACK ON ). As far as the imitrex,i had some that were apprx. 18 months old ( samples ) and they worked just fine :D. You also might want to ask your doc as far as getting a presc. for the individual viales with some diabetic syringes ( instead of using 6 mg.- you can use 2-mg.- works just aswell ) if you cant get them where you are at,try the Q - tip trick.Good luck and hopefully many PFDAN comming your way. p.s. = I officialy ended my boycott on the french last night, i ended up eating an order of "FRENCH FRIES",please dont tell my fellow american warmonger's about this ( i dont think they would forgive me ;D ;D ). p.s.s. = you might want to get all your questions in as fast as possable,in a few hours we are going to have a vote weather to boycott the french canadians aswell ;) |
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Title: Re: Back with a vengeance... Post by miCHel on Feb 20th, 2003, 10:56am If you boycott French Canadians, we'll take back le Cirque du Soleil and Mario Lemieux (we need him here in Montreal), but you can keep Celine Dion... ;). Thanks for the Verapamil/Pred tip. As soon as I leave work, I am off to the pharmacy (again) to get some! As far as O2, I don't know if it's a Canadian thing but no doctors has agreed to prescribe it to me. I have wanted to try it for a lot of years but never did. From what I read, I am missing on the good stuff! I'll keep asking. Again, this site is so cool. I even get a chance to practice my English... miCHel (Yes, it's a guy's name in French) |
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Title: Re: Back with a vengeance... Post by brain_cramps on Feb 20th, 2003, 11:13am on 02/20/03 at 10:56:21, miCHel wrote:
miCHel: While you're at it, can you please keep Chretien? Out west here, we had enough of him a long time ago. >:( grant |
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Title: Re: Back with a vengeance... Post by Mr.Happy on Feb 20th, 2003, 11:25am Quote:
miCH, You're not alone having probs getting a script for O2. That happens all over the place. Goofiest thing is........O2 should be the FIRST abortive chosen for CH. It's amazing how many expensive, brightly colored pills and injectibles are offered for consumption (many with wild side effects), yet simple, effective O2 is usually WAAAAY down the list of utilities for combating CH. Here's some links that include info on the use of O2. Print `em out, and highlight the parts on O2 for the doc: http://www.upstate.edu/neurology/haas/hpclrx.htm http://www.hospital-doctor.co.uk/hd_news/hd_news_article.asp?ID=2498&Section=Feature http://www.ion.ucl.ac.uk/~headache/cluster.html http://www.mhni.com/faqs_cluster.html#treatment http://www.clusterheadaches.com/wwwboard/messages/81233.html Here's a picture of the ever popular non-rebreather mask: http://www.jlenterprise.com/nrbmx.html Nom de Plume, RJ |
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Title: Re: Back with a vengeance... Post by miCHel on Feb 20th, 2003, 3:43pm RJ: Thanks for the cool O2 Info. I am sure my doc will be highly interested. I simply have to try this. Has anyone heard of "Oxygen bars"? It's a new trend and we have one here in Montreal where they plug you in to pure oxygen (it can even be perfumed). Is it the same? Grant: Can't help you with Mr. Chrétien. He's the kind of man who when he talks (either in French or in English), he can't say what he is thinking. And when he's thinking, he shouldn't talk... ;D He's a good enough reason for all the other countries to boycott Canada... miCHel PS Pred seems to be already working. Just a couple of "shadows" today... so far. |
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Title: Re: Back with a vengeance... Post by brain_cramps on Feb 20th, 2003, 3:55pm talked to the girl at one of these 'oxygen bars'. She said the oxygen was '100% pure, other than the additives'. She also told me that it was 80 liters/minute. :o cheap help. |
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Title: Re: Back with a vengeance... Post by oringkid on Feb 20th, 2003, 4:50pm I imagine it is more like 8 liters per minute and I don't think it would help you as they use the cannula (thing that plug into the nose) and ch'ers need a non-rebreather mask. The additives are fragrances. Sherry |
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Title: Re: Back with a vengeance... Post by miCHel on Feb 20th, 2003, 5:44pm You are right. They do use those things in the nose. I have seen the pictures. Too bad. I could have been one of their best customers. Well, I'll have to stick to regular bars... as soon as this cycle ends. Thanks for the info! miCHel PS I have to find out how to integrate these symbols and quotes in my posts. Some of them are just too cool. |
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Title: Re: Back with a vengeance... Post by Ann on Feb 21st, 2003, 9:48am Bonjour Michel et Bienvenue!! C'est le fun de voir un autre Quebecois ici!! Just so you don't waste your time, we can't get imitrex in the vile thingy here in Quebec. Something about the "authorities" being afraid we'd commit suicide! Duh! And our syringes are different than in the States. You won't need the Q-tip. Just scratch off the label and mark the dosage along the syringe. Also, I wonder if you were to bring your non-rebreather mask to the O2 bar, if they would let you use it instead of the nose thingy? hehe Wouldn't that be wild? Might be worth a shot! I believe Sherry is right regarding the Pred and verapamil. Most neuro's prescribe them together so you get a fighting chance while the verapamil takes hold. It sometimes takes a few weeks and you may have to re-adjust the dosage. I'm taking 360 mg of verap and 600 mgs of lithium. It's been doing the trick. My neuro refuses to give me the O2...says it's for hospital use only, but if push came to shove, he would let me have it. He's cool. Good luck and keep us posted hugs Ann (Trois-Rivieres!) |
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Title: Re: Back with a vengeance... Post by Lenny on Feb 21st, 2003, 10:29am Ann, Could you please explain how you do the imitrex tip by taking off the label without the use of a Q - tip or skinny stick ::) ??? ::) |
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Title: Re: Back with a vengeance... Post by miCHel on Feb 21st, 2003, 10:43am Salut Ann et Merci! OK Switching back to English mode now. I am not sure I am getting your Imitrex tip correctly. What is the Q-Tip? Is it the autoinjector? Do you mean you use the syringe (without the autoinjector) with half of its content and then use it again with what is remaining inside? Sorry if these questions seems so basic. Imitrex injections are still quite new to me. I used them for the first time at the end of my last cycle (and only for Kip 10 attacks) and, boy, it was like a miracle the three times I used them. Thanks! I hope everything is going great in beautiful Trois-Rivières (Three-Rivers). miCHel |
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Title: Re: Back with a vengeance... Post by Lenny on Feb 21st, 2003, 11:01am miCHel, Yes it is for the "auto injecter".What you do is scratch off or peel of the label from the viale,mannualy put the needle in your body and with a Q-tip or any skinny instr. you wish to use,push doun on the plunger the desired amount that you need ( make a mark on the Q-tip prior to doing this ). For myself 2-mg. works just as good as 6 mg. Good Luck and with many PFDAN comming your way soon. |
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Title: Re: Back with a vengeance... Post by K. on Feb 21st, 2003, 1:22pm Hi miCHel, Sorry the beast is back. If you haven't started the Verapamil yet, you need to while you're on the pred. It takes a while to work and you will probably end up, with your doc's approval, increasing your dosage of verapamil anyway until you find a strength that works for you. I'm on 480mg/day. Also..you mentioned the O2 bar...yes, they use a nasal cannula..and if they're telling you 8 liters/min, they are wasting O2 (which is worth more than gold to me). You can't deliver more than 4-6 liters/min through a nasal cannula. Try to find a way to get Oxygen and a non rebreather mask. 10L/min works for me. You will find that you can abort most attacks....that way you can save your imitrex for the K10's...plus it will save you from much suffering until the verapamil starts working. These are just my opinions and what works for me. Everyone is different. The one thing that is constant is that everyone here understands what you are going through and wishes you PFDAN. Karen |
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Title: Re: Back with a vengeance... Post by miCHel on Feb 21st, 2003, 2:01pm Lenny, thanks for the precision regarding Imitrex injections. Ann mentionned that Canadian Syringes are different than American syringes. I will check it out because if a smaller dosage does the trick, it would be great. Karen, ditto for O2 tips. By the way, I started Verapamil yesterday after all the great advice I got here. Combining Pred and Verapamil is a first for me. Hope it works... Just thinking I had to wait almost twenty years before getting any kind of "intelligent medications" makes me a little mad. But that's all in the past, thank god for this site and you guys. miCHel |
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Title: Re: Back with a vengeance... Post by Ann on Feb 21st, 2003, 2:41pm Lenny, I just rip the label off the syringe. Calculate the dosage and mark them off and inject up to the mark. I don't need the Q-tip to push the imitrex into my leg...it already has a plunger that works just fine. Hope that answers your question. NancyC and I talked about this last year I think it was, and we realized that our injections were different. I have a hard time visualizing yours. (hmmmm...that sounds funny! LMAO) Michel, if you need to talk send me an e-mail, I'll give you a call ok? hugs Ann |
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Title: Re: Back with a vengeance... Post by Lenny on Feb 21st, 2003, 7:00pm Ann, Thank you for your responce. I had no idea that your's were differant from our's,now you got me going nut's trying to viualize your's aswell ( I'll tell you what,if you show me your's, I'll show you mine ;D :D ;D ). |
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Title: Re: Back with a vengeance... Post by Ann on Feb 21st, 2003, 9:05pm LMAO Lenny! You first! ;D Wish I had me one of them digital cameras....then again...DJ would probably toss me off here! ROFLMAO hugs Ann |
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Title: Re: Back with a vengeance... Post by Lenny on Feb 21st, 2003, 10:58pm o.k. Ann ;), You can see mine at www.wungholow/oneinch.com ;D ;D ;D ;D |
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Title: Re: Back with a vengeance... Post by Ann on Feb 22nd, 2003, 8:40am Lenny! The link didn't work :-[ Now I'm really curious! LOL hugs Ann |
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Title: Re: Back with a vengeance... Post by jonny on Feb 22nd, 2003, 4:43pm on 02/19/03 at 16:48:01, miCHel wrote:
The community only grows when there are people here to support it, I dont think you know this seeing you have been away for two years. Can we get your slippers too? Think about sticking around and helping some folks out when your not in pain. ...............................jonny |
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Title: Re: Back with a vengeance... Post by Lenny on Feb 22nd, 2003, 6:11pm Ann, I am very sorry, i had no idea that it is still under construction ;) ,as soon as it's up and running i will let you know. In the meantime this will have to do :-* :-*. |
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Title: Re: Back with a vengeance... Post by catlind on Feb 22nd, 2003, 6:13pm Bienvenue miCHel aka Mike. Je ne parle pas en Francais; Parlez vous en Anglais? - sil'vous plait? Okay so I flunked grade 10 french. The only other thing I can put together properly (prolly spelled wrong though) is voulez vous couche(z or r) avec moi c'est soir, and ummm those who don't know french, never mind, those who do, I'm not asking - really! LOL Sheesh, not the things you are supposed to learn from the french exchange students ;) (he was cute though) Hope you are able to have some luck with the beast michel. Ann I didn't know you were in trois riviere I thought you were closer to us at the 1000 islands. No I'm not french, I'm from Ontario originally now happily settled in the mountains of ice and snow and grime they call Upstate NY ;) Glad I am here though, can't imagine the no O2 thing :o See, there's that central health care thing goin again ;) Okay, I don't live there right now, so I won't get into the politics there LOL Chretien :-X At least Trudeau told you flat out he was gonna screw ya ;) (and if mention mulroney or campbell to my face I will take a swing at you!) oops sowwy ;) no more, I'll stick to the US politics, they are much less complicated LOL Cat |
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Title: Re: Back with a vengeance... Post by Ann on Feb 22nd, 2003, 8:30pm Cat..you crack me up! I find american politics impossible to understand, but I sure do enjoy The West Wing! I'm getting smarter every time I watch it! Last week's was a hoot. Jonny would have like Martin Sheen's comments about the French! LOL Yeah I live in Trois-Rivieres. We keep our boat in Ontario. In the summer it's at Prescott Harbour and in Winter it's in Iroquois. It's only a 3 hour drive to go sail in the most beautiful part of Canada...so we suck it up and journey west. This will be our 3rd season in the 1000 Islands, and probably not our last. We haven't crossed the border yet...too expensive, but we will do it for convention. I have already warned my hon that we were at Alexandria Bay for that weekend. He's cool with it, and he's agreed to take Don day sailing. Should be fun and I'm really looking forward to it! Lenny, let me know when it's ready....hmmmmm I'm really really curious! :-* :-* right back at you! hugs Ann |
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Title: Re: Back with a vengeance... Post by das on Feb 23rd, 2003, 9:26am Michel, I am also from Montreal. I wanted to let you know about La Clinique de Migraine de Montreal (in case you don't already know about it). Don't be fooled by the name. There are a few doctors there that specialize in CH. In fact, ironically, my friend's late father was the founder of the clinic and was partly responsible for a lot of research that helped shed light on CH. If it hadn't been for him, I may have still been taking ibuprofen to try and ward of CHs (can you believe I used to do that...lol..talk about taking meds for nothing) If you aren't a patient there already and you would like to call them, the number is: 514.337.0432 |
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Title: Re: Back with a vengeance... Post by BobG on Feb 23rd, 2003, 9:55am Lenny........... We'll forgive you for eating French Fries, this time. From now on just refer them to fries or deep-fried spuds. But.......... if we catch you with snails on your breath you're outa here! ;D I'm off work in 30 minutes and I'm going to Vegas :D |
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Title: Re: Back with a vengeance... Post by miCHel on Feb 23rd, 2003, 10:53am A few answers to a couple of messages... Jonny : Point well taken. Although I checked the board regularly for two years, I guess I was a bit too shy to post support message since I was a total newbie. As for medical advice, I stink at it. You guys are my Bible. But now that I broke the ice, I will definitely try to be more active. It makes a lot of sense. ::) Thanks. Ann : What kind of sailing do you do in the 1000 Islands? I was in Kingston for a J-24 regatta a few years ago and fell in love with the place. Cat : If the only French thing you remember is "Voulez-vous coucher avec moi ce soir"? You will be the most popular girl in Québec... ;) Das : Thanks for La Clinque de Migraine de Montréal info. I tried to get in there during my last cycle and could not get an appointment befor three months... so I kind of gave up on it. But if you say they hace a few CH specialists, I will give it another run. Go Habs Go. What started out to be a rotten week has turned out pretty good. Thank you all. miCHel |
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Title: Re: Back with a vengeance... Post by catlind on Feb 25th, 2003, 6:55pm Michel, If you absolutely loved Kingston, then be sure to join OUCH if you aren't already a member, and come to the 2003 convention. It is being held in Alexandria Bay this year, with a full view of the 1000 islands from everywhere you sit or stand :) As for my french LOL, I won't be saying that when I am in Quebec LOL Cat |
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