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        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> Next probably dumb ?
        
(Message started by: becky8 on Oct 7^th, 2004, 10:34am)

Title: Next probably dumb ?
Post by becky8 on Oct 7^th, 2004, 10:34am

Just a recap for newbies to me. Bottom line I am having to Dr. myself (my neuro knows nothing on headaches) and can't get into one til Feb. So.... you will find me asking alot of probably what seems to you all as dumb questions. Since only for the last year have I started to question these crazy everyday on and off headaches. I now know what they are and have got my Dr. (so far) in the last week to give me Verapamil and hope its helps and hope he lets me stay on it (He was werid about giving it in the first place) Now for my question, IF I am lucky enough to have it work. How long can I be on it? Can you be chronic and then stop being chronic? It's been about a year now but can that still just be a cycle? If so,how will I know if I am on Verapamil and its working to just keep them away or does it not TOTALLY keep them away?You're all probably laughing by now, but thats okay if you just answer.

Title: Re: Next probably dumb ?
Post by plazticsoul on Oct 7^th, 2004, 10:44am

I have no answers, but I am on 6 months now and the duration of pain seems to be chronic. I can only hope that I do have a cycle and it will someday end. I don't care if it ever comes back... as long as I can get a break! I'm sure you feel the same way ::) Good luck to you. Don't worry about asking "stupid" questions. I think my questions are stupid but that doesn't stop me [smiley=laugh.gif] We are all in the same boat!

That is a long wait till your scheduled appointment. I am sure this office receives cancellations from time-to-time. Probably a good idea to check with them frequently to get squeezed in somewhere.

Title: Re: Next probably dumb ?
Post by floridian on Oct 7^th, 2004, 10:54am

No laughter - your questions are reasonable and you should be asking them.

One year is the official line dividing chronic from episodic - if you haven't had PF month in the past year, you are chronic. People who are chronic can have the headaches stop, and episodics can become chronic. If you are pain free under verapamil and want to know if the headaches are gone or if the verapamil is just supressing them, the only way to know is to get off the verapamil. You can worry about that later - for now, just get pain free.

I'm not a verapamil expert, but I think some people here are on it for extended periods. It is a blood pressure drug (calcium channel inhibitor) and those are usually prescribed long term.

Title: Re: Next probably dumb ?
Post by don on Oct 7^th, 2004, 11:41am

Quote:

How long can I be on it? Can you be chronic and then stop being chronic? It's been about a year now but can that still just be a cycle? If so,how will I know if I am on Verapamil and its working to just keep them away or does it not TOTALLY keep them away?

1. As long as you need to be. Goadsby suggests tapering off around two weeks after you are convinced your cycle has ended.

2. Chronics report having cycles within cycles. Floridians definition of chronic vs. episodic is on the money.

3. Verapamil has never completely stopped a cycle for me. It has kept the frequency of the attacks low. When there are no further atttacks after a two week perion I taper off the verapamil.

Title: Re: Next probably dumb ?
Post by Valerie on Oct 7^th, 2004, 12:08pm

Ask away - most of us have suffered for years with no help. I've personally never met another clusterhead, so just knowing there is a place I can ask questions to people who know my pain is awesome! I hope you get some answers... the important thing is to try to be pain free - then you can worry about the rest :)

Valerie

Title: Re: Next probably dumb ?
Post by netniet on Oct 7^th, 2004, 12:12pm

Im a cronic and i use verapermil, I stil get hit but not so much and not so bad. Don is right Im cronic but I do have periods that I get hit much more and worse.

Ninet

Title: Re: Next probably dumb ?
Post by JJA on Oct 7^th, 2004, 12:17pm

I think the whole episodic and chronic thing is just an arbitrary definition. It is kind of like a contiuum. On one end are the people who get short cycles with many years in between. On the other end are people who go 30+ years without a break. Most of us fall in the middle somewhere and so does the arbitrary line dividing chronic from episodic. Many people have cycles that last longer than a year. Technically, they are chronic during these cycles, but their headaches behave in a episodic manner.

Jesse

Title: Re: Next probably dumb ?
Post by BobG on Oct 7^th, 2004, 12:21pm

on 10/07/04 at 10:34:00, becky8 wrote:

Just a recap for newbies to me. Bottom line I am having to Dr. myself (my neuro knows nothing on headaches) Please find another neurologist and can't get into one til Feb. Feb? Get another neurologist! And you might try using the words suicide headaches when making an appointment. It kinda gets their attention. So.... you will find me asking alot of probably what seems to you all as dumb questions. Nope. We were all new here at one time. You can't learn if you don't ask. And read everything under the buttons on the left side of your screen. Since only for the last year have I started to question these crazy everyday on and off headaches. I now know what they are and have got my Dr. (so far) in the last week to give me Verapamil and hope its helps and hope he lets me stay on it (He was werid about giving it in the first place) He will probably get even more weird when you have to ramp up to 800mg a day before you get control of the clusters. Now for my question, IF I am lucky enough to have it work. How long can I be on it? As long as it takes. Can you be chronic and then stop being chronic? Yes. It's been about a year now but can that still just be a cycle? If so,how will I know if I am on Verapamil and its working to just keep them away or does it not TOTALLY keep them away?You're all probably laughing by now, Nope, no laughing allowed when someone asked for help. After you've been helped, then we'll laugh at you and make you the butt of ours jokes ** but thats okay if you just answer.

**just kidding

Title: Re: Next probably dumb ?
Post by Mr. Happy on Oct 7^th, 2004, 12:27pm

There are no dumb questions, but from time to time, there will be dumb answers.

Won't see too many of those around here,
RJ

http://mushys.com/despair/clueless.jpeg

Title: Re: Next probably dumb ?
Post by Tessjasmine on Oct 7^th, 2004, 1:03pm

I'm a new member of the site but not new to clusters - I had them from age 14 to18 then nothing until this year (I'm 27!)

Thought they'd gone but they're back and worse than ever. I've got a question - I've been prescribed Imigran / Imitrex and sometimes it works like a dream but other times makes no difference. Does anyone know why?? And how the hell do you stop yourself ripping your eyes out with the pain!! Please - I need any tips on coping that I can get!

Title: Re: Next probably dumb ?
Post by nani on Oct 7^th, 2004, 1:34pm

The only stupid question is the one you don't ask. My understanding of verapamil is that it is ok to take for prolonged periods if your normal bloodpressure is normal or high. I think it causes problems if you normally have low blood pressure. Talk to your doctor about Neurontin in addition to the verapamil. It's an anti-convulsant that also works for pain. I use it as a long term preventative and have the dose increased during bad episodes. I'm a chronic (for 4 1/2 years) with severe episodes now and then. You can also see if the doc will write a scrip for oxygen to abort HAs. Hang in there [smiley=hug.gif]

Title: Re: Next probably dumb ?
Post by don on Oct 7^th, 2004, 4:23pm

Quote:

I think the whole episodic and chronic thing is just an arbitrary definition.

No it is not. It is the diagnostic criteria established by the IHS.

Title: Re: Next probably dumb ?
Post by JJA on Oct 7^th, 2004, 5:00pm

Yeah, I know, but it is still arbitrary. The criteria for chronic had a 2 week remission but arbitrarily changed to a 1 month remission by the IHS. I bet hundreds of people became episodic the day the definition changed, but their heads didn't get better. (Not trying to be a smartass here)

Jesse

Edit: I now realize more people would be considered chronic due to this change.

Title: Re: Next probably dumb ?
Post by Jonny on Oct 7^th, 2004, 5:06pm

on 10/07/04 at 10:34:00, becky8 wrote:

Can you be chronic and then stop being chronic?

Yes, I was chronic for 29 1/2 years and out of the blue I was PF for five months. I did nothing different with my meds or anything else in my life, it just happened. Im now back to getting hit like im chronic but I have a new title "Episodic" and I love it, ive been waiting a looong time to say that.

Good luck to you!!

.....................................jonny

Title: Re: Next probably dumb ?
Post by don on Oct 7^th, 2004, 5:13pm

Quote:

I bet hundreds of people became episodic the day the definition changed, but their heads didn't get better

Thats pretty funny and very true! Hadn't thought of it that way before. LOL

Title: Re: Next probably dumb ?
Post by Kris_in_SJ on Oct 7^th, 2004, 5:32pm

HI,

I'm pretty much in agreement with BobG. I'd sure be looking for a different neuro - February is REALLY far away.

I'm not sure how much Verap your doc gave you, but I've never had much relief with under 480mg/day. Once I'm up to that amount, my HA's are reduced to shadows within a week or so, then usually gone after another week. I'm definitely episodic, though (a 2-3 month cycle every few years). If you've been chronic for some time, it's hard to tell how you'll respond.

Sure hope it works for you, though!

Kris