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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> I am new
        
(Message started by: xena2 on Dec 4^th, 2006, 4:28pm)

Title: I am new
Post by xena2 on Dec 4^th, 2006, 4:28pm

I have been looking at this site for several days. I can't believe how many we are. I have had episodic CHs since I was 14 years old. I'm now 59. No one -- NOBODY has ever understood the pain and frustration before. Thank you for this wonderful website. I think I've found a new home.

BTW, I am going through an episode right now and pray every minute of every day it will end soon. Docs are stoking me up w/ Verapamil, Topamax to "break the cycle" and Imitrex for the attacks. But, as usual it ain't working. I have come to the conclusion, after all these years, that the "preventative meds" don't work -- at least not for the CHs -- and they just must run their course. Anyone else feel that way?

Title: Re: I am new
Post by georgej on Dec 4^th, 2006, 6:08pm

Welcome Xena.

I'm episodic as well. I've gotten them since I was thirteen. I'm nearly 53 now.

Like you, I came to the conclusion that the medications I used were doing little, if any good. Narcotics seemed to be actively harmful. I've gone unmedicated for CH since the mid-seventies.

I can't speak for verapamil, imitrex, lithium, or topomax. I've never tried them. At the time I quit medicating, I was being given caffergot/Sansert (at different times) and Periactin-- old-line meds, as well as a variety of pain medications. None of them did much of anything. Sansert seemed to increase the number of attacks.

I don't know about you, but the frequency of cycles has decreased over the years. For the past three cycles, I've gone three years between. I used to cycle twice a year--Spring and Fall. Each cycle was, and continues to be, approximately 6-8 weeks in duration.

Next cycle, I fully intend to try oxygen as an abortive. Used properly, it has been of immense help to others here, and does not seem to have any significant side-effects. You may wish to consider this as well--see the "oxygen info" link to the left of your screen.

Since they seem to be winding down, I've grown very conservative in treatment. I can live with them as they are now, but I'm very hesitant to try treating them aggressively, because there is some strong anecdotal evidence here that indicates that some medications may extend the length of cycles, and increase the number of attacks. If they change on me and I wind up with a cycle that does not end, of course, I may reconsider that decision.

There is strong evidence that a malformed hypothalamus may be a root cause for CH. If that is true, then CH is not a condition that can be readily "cured". Perhaps it can be treated more effectively than it has been, but those treatments will be palliative, and not a cure. At this juncture, I look at CH as simply a part of who and what I am--the same way I look at the color of my eyes and the color of my hair.

Good to see another long-time episodic here. Hope we can be of some help to you.

Best wishes,

George

Title: Re: I am new
Post by chewy on Dec 4^th, 2006, 7:08pm

I have always found verapamil at the right dosage to be extremely successful especially with a prednisone taper.

Quote:

and they just must run their course.

That is not true. Many people break cycles by using the meds that are right for them.

Title: Re: I am new
Post by chopmyheadoff on Dec 5^th, 2006, 8:05am

hi mate glad to meet you . .

im a chronic and have found complete relief from verapamil .

480 a day for me and now i may get 1 ch a week (which i kill with imitrex) instaed of 2 a day !!

chops

Title: Re: I am new
Post by xena2 on Dec 6^th, 2006, 5:38pm

God bless you George. My episodes are usually 3 years apart. If I had two a year, I probably would kill myself. When they first started, and in fact, up until not too long ago, I too was given Sansert and Cafregot. Nasty stuff. Narcotics don't touch them.

Last two episodes they've treated with the Verapamil, and this is the first where they've given me the Topamax with it. I'm up to 100 mg. a day of the T. and 720 a day of the V.

This episode seems to be different in that the h/a aren't waking me out of a sound sleep. I'm getting one between 7 and 9 p.m. and as I wake up in the a.m. (6:15). Very unusual for me.

Nonetheless, the episode is about 1 and a half mos. into the cycle, and my cycles last 3-4 months, usually.

Should I try that Red Bull thing? I've read about its ingredients, and the taurin works on the hypothalymus.

Thank all of you who responded. Any thoughts on the change in the way they are coming on? All these years they came on within an hour or hour and a half of going to sleep.

Title: Re: I am new
Post by CynthiaB on Dec 6^th, 2006, 5:53pm

There have been several posts warning against mixing Red Bull, or any other energy drinks, with verapamil, due to the taurine and verapamil work in the same way and can lead to a dangerously low heart rate.

Do a search of the archives on verapamil...that's how I found the old posts.

You're on my current medication regimen. I just added 240 of verapamil, taking me up to 720mg today.

If I go to bed early enough, I'm not getting the 2am hit. If I am awake for it though..it comes but not as bad. This is strange for me also. Until about a week ago it would always wake me up. I guess that means the meds are working for me.

I don't know, I'm still learning.

Every day my hits are milder, though. Except the one just before bed. Maybe I'm not timing the morning medication right. It's a work in progres!!

I'm new, too. Good luck to both of us. I'm sure if we stick around long enough they will help us figure it out.

It's a journey, but there is good company here.

Title: Re: I am new
Post by RichardN on Dec 7^th, 2006, 12:36am

Hi Xena and Welcome Home

I'm also 59 (60 in Mar). I'm a "head trauma" CHer . . . . nailed my noggin' 1/01 . . . ha's started . . . after all the tests, MRI, CTs, etc . . non-working meds, mis-diagnosis . . . . by the time my wife found this site 2/02, I was having 6-8 attacks a day and sometimes 3-5 a night, Kip 5-9, most 20-45min, some 1 1/2 - 2 hrs. I was a basket-case . . . . this place gave me a "name-for-the-pain" , an understanding of the pain I felt/feel and the information to take to my docs and start getting some control over the beast.

For me, Verapamil worked and I had my first PF day in a very long time after about 3 weeks (had 3 that night, but had the 02 to kill them before he got to the "dance" stage.

You will read many many testimonials about 02 to abort. Works for 60-70% of us. I can kill him in minutes if used early-on in the attack. I can't take triptans, so 02 is my only abortive . . . inexpensive . . . few, if any side effects . . . AND IT WORKS. You will need a prescription from your doctor and he needs to specify 15 lpm regulator and a non-rebreather mask (the one with the bag). Copy info off this site and take to your doctor . . . there's information here they can't ignore.

Don't discount the "water X 3" therapy (link on left). I'm absolutely convinced this has helped me reduce the frequency/intensity of the attacks . . . it takes a LOT of water.

As soon as you get your 02 script . . . order a Clustermasx ($25) . . . . was developed for us clusterheads and, after reading all the rave revues, finally ordered mine . . . got here today and I can tell it's going to meet/exceed my expectations.

You've much to read . . . and this great bunch of people will help in any way they can. Here, the answers/info/caring/sharing you will receive comes from folks who truly know your pain.

Be Safe, PFDANs

Richard

Title: Re: I am new
Post by Bob_Johnson on Dec 7^th, 2006, 8:07am

Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)

http://www.brightok.net/~mnjday/chtherapy.pdf