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miCHel
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Back with a vengeance...
« on: Feb 19th, 2003, 4:48pm » |
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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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Mark C
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Re: Back with a vengeance...
« Reply #1 on: Feb 19th, 2003, 5:19pm » |
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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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cbolony
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Re: Back with a vengeance...
« Reply #2 on: Feb 19th, 2003, 5:47pm » |
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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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oringkid
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Re: Back with a vengeance...
« Reply #3 on: Feb 19th, 2003, 5:51pm » |
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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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miCHel
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Re: Back with a vengeance...
« Reply #4 on: Feb 20th, 2003, 9:12am » |
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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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Mr. Happy
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Re: Back with a vengeance...
« Reply #5 on: Feb 20th, 2003, 9:52am » |
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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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Lenny
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Re: Back with a vengeance...
« Reply #6 on: Feb 20th, 2003, 10:30am » |
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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  . 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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miCHel
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Re: Back with a vengeance...
« Reply #7 on: Feb 20th, 2003, 10:56am » |
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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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brain_cramps
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Re: Back with a vengeance...
« Reply #8 on: Feb 20th, 2003, 11:13am » |
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on Feb 20th, 2003, 10:56am, miCHel wrote: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... .
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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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Mr. Happy
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Re: Back with a vengeance...
« Reply #9 on: Feb 20th, 2003, 11:25am » |
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Quote:| 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. |
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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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miCHel
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Re: Back with a vengeance...
« Reply #10 on: Feb 20th, 2003, 3:43pm » |
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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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brain_cramps
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Re: Back with a vengeance...
« Reply #11 on: Feb 20th, 2003, 3:55pm » |
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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. 
cheap help.
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oringkid
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Re: Back with a vengeance...
« Reply #12 on: Feb 20th, 2003, 4:50pm » |
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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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miCHel
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Re: Back with a vengeance...
« Reply #13 on: Feb 20th, 2003, 5:44pm » |
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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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Ann
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Re: Back with a vengeance...
« Reply #14 on: Feb 21st, 2003, 9:48am » |
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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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Lenny
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Re: Back with a vengeance...
« Reply #15 on: Feb 21st, 2003, 10:29am » |
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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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miCHel
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Re: Back with a vengeance...
« Reply #16 on: Feb 21st, 2003, 10:43am » |
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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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Lenny
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Re: Back with a vengeance...
« Reply #17 on: Feb 21st, 2003, 11:01am » |
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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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K.
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Re: Back with a vengeance...
« Reply #18 on: Feb 21st, 2003, 1:22pm » |
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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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miCHel
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Re: Back with a vengeance...
« Reply #19 on: Feb 21st, 2003, 2:01pm » |
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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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Ann
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Re: Back with a vengeance...
« Reply #20 on: Feb 21st, 2003, 2:41pm » |
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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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Lenny
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Re: Back with a vengeance...
« Reply #21 on: Feb 21st, 2003, 7:00pm » |
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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 ).
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Ann
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Re: Back with a vengeance...
« Reply #22 on: Feb 21st, 2003, 9:05pm » |
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LMAO Lenny!
You first!  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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Lenny
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Re: Back with a vengeance...
« Reply #23 on: Feb 21st, 2003, 10:58pm » |
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o.k. Ann ,
You can see mine at www.wungholow/oneinch.com ;D ;D ;D ;D
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Ann
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Re: Back with a vengeance...
« Reply #24 on: Feb 22nd, 2003, 8:40am » |
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Lenny! The link didn't work  Now I'm really curious! LOL
hugs
Ann
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