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        New Message Board Archives >> Jan-Mar 2004 >> Just diagnosed
        
(Message started by: Ole_Ron on Jan 17^th, 2004, 2:08pm)

Title: Just diagnosed
Post by Ole_Ron on Jan 17^th, 2004, 2:08pm

I was just diagnosed with CH January 8th and now knowing the symtom I realized that I`ve been having them since I was 19 (17 years). I always thought they were bad sinus headaches because of the runny or conjested nose so I`ve was taking sinus pills.

The bouts would only last for 3-5 days and go away. This one is in its third week now and I believe it on its way to remission. I have shadows throughout the day and and now a tolerable headache at night.

The Doctor gave me Relpax (eletripan HBr). I haven`t taken any yet because the pain isn`t as bad as it was last week. I have never been one to take med for fear of dependency. I know the pain will be back and I want know if anyone is familiar with this medication and will it help.

Its sad to see so many people go through this, but its good to see that others understand the pain I feel during these attacks.

Ole_Ron

Title: Re: Just diagnosed
Post by don on Jan 17^th, 2004, 3:32pm

Found this little gem at healthsquare.com

Quote:

Relpax should only be used during a genuine attack of classic migraine. Do not attempt to prevent migraines with this drug, and do not use it for tension headaches, cluster headaches, or unusual types of migraine such as hemiplegic or basilar migraine.

Title: Re: Just diagnosed
Post by Cerberus on Jan 17^th, 2004, 3:42pm

Ole Ron,

I gotta ask first is your cycle 3-5 days a month, year, what? Much information in the buttons to the left. I have never had the pleasure to try the meds you are on,but, have found relief via immitrex, verapamil, and mostly oxygen. There may be some here that have experience with your regimen though. In any event read up and welcome.

Ramon

Title: Re: Just diagnosed
Post by Ole_Ron on Jan 17^th, 2004, 5:48pm

3-5 days about twice a year. Have skipped the last 3. Maybe why it was 3 weeks this time (playing catch up).

Title: Re: Just diagnosed
Post by Edski_1 on Jan 17^th, 2004, 5:56pm

OK, I got to ask what is *really* known about triptans and clusters/migraines? This "fear of dependency" is contracdicted boldly on the thread about getting more imitrex if you need it. I'm a newbie too, but sumitriptan, elitriptan, zolmitriptan...I was a type of chemist for 8 years out of college, and I may not recognize a drawing of one yet, but a triptan is a triptan, and there seems to be ample evidence that they are safe drugs for treating clusters. And NO EVIDENCE THEY ARE ADDICTIVE.

For my experience, a 3 - 5 day cycle seems very brief...almost too breif to note. But There are cycles within cycles and we get sensitive to certain resonant portions of them I suppose...and we all seem to be different :) So I give the triptan a try...it likely won't hurt! :P And I doubt you get "hooked" except to think "wow!" if it works well.

Title: Re: Just diagnosed
Post by Renee on Jan 17^th, 2004, 9:38pm

I, for one, thought WOW!!! It really did work!

Imitrex injections puts the brakes on the higher kip ha's and o2 contols the lower kip ha's and i'm not addicted.

I've never heard of using Relpax for CH either!

good luck
renee

Title: Re: Just diagnosed
Post by Charlie on Jan 17^th, 2004, 9:52pm

Welcome to the fold Ron. Sorry you had reason to find us but you'll find some good ideas here about dealing with this horror.

Stick around and let us know how you're doing.

Charlie

Title: Re: Just diagnosed
Post by BlueMeanie on Jan 18^th, 2004, 12:21am

Ole_Ron,

First time i've heard of a cycle only lasting 3-5 days twice a year. You sure it's not sinus or migraines ? Either way, welcome and I hope you find relief.

PS. Triptans are NOT addicting and NON narcotic. It's the best abortives for CH's. O2 is also wonderful thing.

WELCOME.

Title: Re: Just diagnosed
Post by ClusterChuck on Jan 18^th, 2004, 12:31am

on 01/17/04 at 17:56:00, Edski_1 wrote:

a 3 - 5 day cycle seems very brief...almost too breif to note.

Too brief to note? If it is a Ch cycle (regardless how short) it is DEFINATELY worth noting! That pain is SEVERE!

Although it is shorter than most, the variations that the beast takes, this does not seem out of line. It is very possible.

Welcome aboard, Ole_Ron, sorry you have to be here!

Chuck

Title: Re: Just diagnosed
Post by taraann on Jan 18^th, 2004, 10:21am

First of all welcome Ole_Ron!

Just wanted to say I have never been on Replax (that I can remember) but the Zomig NS says the same thing "It does not prevent migraine headaches from occurring and should not be used for other types of headaches(eg: clusters, etc)" and I know I am one of many CHers that are on Zomig.

Title: Re: Just diagnosed
Post by Edski_1 on Jan 18^th, 2004, 11:35am

Yeah, I'm sorry I said that. :-[ Please forgive me...

I think what I might have been *trying* to say is that a cycle that short might make it hard to get a handle on any characteristics of it, i.e. timing patterns, possible triggers, treatment options...

Title: Re: Just diagnosed
Post by jadedgazer on Jan 18^th, 2004, 1:53pm

Sorry to hear that you are one of us, but welcome. You will find a wealth of information here.

I remember Replax being mentioned recently on the Meds board, but not sure in what context. There are many drugs being used to treat CH that were not developed for specific treatment of CH. In fact, I know of no drug that was developed soley for the treatment of CH. Different things work for different people. You might want to search the archives and look at the Meds Board to find out more info about Replax.

Stick around, read everything you can find here, and ask questions...there are lots of smart people here who have been fighting the beast for a very long time.

Jackie S

Title: Re: Just diagnosed
Post by ClusterChuck on Jan 19^th, 2004, 12:57am

on 01/18/04 at 11:35:40, Edski_1 wrote:

You are forgiven!!!

Your comment in the second paragraph are so very true!!! I hadn't though of that!!! WOW! That would make things difficult wouldn't it?

Good point!!!

Chuck

Title: Re: Just diagnosed
Post by Edski_1 on Jan 19^th, 2004, 7:18am

Chuck, what makes me think of that is how many people I spoken to since my cycle started in the fall that have said they've experienced something similar...and it makes me think that a lot more people go through this at either more irregular intervals or very short periods, or very long remissions that it gets lost...

It's not a very well characterized condition to begin with, certainly not a very well treated until maybe what, the last decade or so? Seems when I was told a long time ago that I could have clusters "there was nothing that could be done"...then again that could have been just an ignorant doctor. There are some of those out there... >:(

Having been a scientist (maybe now that I'm looking for a new job I'll morph back into one), and always retained an interest in science, I still have an interest in measurement. One thing that strikes me about this community I find myself now becoming a member of is that it understands the value of measurement...and records...I wish I was keeping a log of my headaches since October. It would have been so helpful to undestand what was going on. At least I will be from now on...actually have been since earlier this month.

Anyway, thanks for the notice on that. Last thing I want to do is come across as insensitive. I realize that 3 days of these headaches suck whether it's a one time thing or comes once a month for a year....but the second scenario paints a far different picture, one that starts to reseble CH more than just a common HA. Just being a scientist! ;)

Title: Re: Just diagnosed
Post by ClusterChuck on Jan 19^th, 2004, 7:35am

Oh-oh!!! Watch out everyone!!! We got us a ~~nut~~ scientist among us!!! haha!!!

Glad to have you aboard, Edski, now maybe we can get some more edukated input here!!! heehee!!!

Many people here keep records as you are talking about. I never have. Maybe I should have. But I have had this beast for around 25 years now. And just the hits I have had in this last "cycle" (I am chronic) would fill a book!!! I have been having 6 to 12 hits a day since July!!! haha!!! Can't wait to get back to my normal one or two a day!

Chuck

Title: Re: Just diagnosed
Post by Boogie on Jan 29^th, 2004, 8:34pm

Thanks for the info.

sorry it took so long.

The wake up at night with a 9-10 on the kip scale were 3-5 days, with milder headaches before and after. The recent 9-10 lasted 2 weeks.

The headaches were milder by then so I did not take any of the eletripan. the Dr. gave me a prescription for another pill (i can`t remember the name). I was suppose to start with 6 pills a day, then 5,4,3,2, and 1 until 44 pills were taken. This seemed a bit much for then end of a cycle.

Thanks again for the info,

Ole Ron

Title: Re: Just diagnosed
Post by LouisJ on Jan 29^th, 2004, 8:57pm

Three to five days on a 9-10 kip scale!!!!!!!!! Holy cow!

Ron, I sure hope you find some preventive medication fast!

I have found a lot of good information on this site that has helped me and my (extended) family.

Good luck.

-- Louis

Title: Re: Just diagnosed
Post by tiredofclusters on Jan 29^th, 2004, 10:52pm

Hello Ole_Ron

Sorry to hear, But this is a GREAT site to learn about CH.
I'm new to this site myself. There is some great folks here. When i'm going threw my cycle with them i;m glad to know there a place i can go to talk to some about them. Have a bad one tis afternoon, lasted 2-1/2 hours, had to sent the wife out to get my IMITREX prescription filled.

Good luck
Neal