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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> What else can I try?
        
(Message started by: birdman on Jan 8^th, 2008, 8:47am)

Title: What else can I try?
Post by birdman on Jan 8^th, 2008, 8:47am

Quick history - 37 year old eposodic sufferer for 22 years. Haven't been able to completely break my cycle since Feb of 2007. Had a month or so hear or there of pain free. Dec 19th started up again. Neuro feels that it has morphed into paroxsymal hemicrania (sp?). I cannot take verapamil as it has caused arthymia the last time. Currentlt taking - indomethacin 150mg, melatonin 9mg, 02, red bulls, and ice. Have had to resort to imitrex or zomig at least once every day. Was hoping to try rc seeds or shrooms but have been unable to go the five day detox. Now my anxiety/depression is starting in. Any advice on what I can do would be greatly appreciated. I am literally at my wits end.
Thanks!
Tim

Title: Re: What else can I try?
Post by kcopelin on Jan 8^th, 2008, 9:14am

One of the worst characteristics is the ability of the CH to "adapt" to meds...much like the Borg on Star Trek-
indo ususally works on PH, not on CH, how about lithium? Up melatonin a bit for those night time hits and maybe add benadryl.

Hang in there!
PFDAN
kathy

Title: Re: What else can I try?
Post by birdman on Jan 8^th, 2008, 9:30am

How high can I go with melatonin? 12mg?

Title: Re: What else can I try?
Post by Charlotte on Jan 8^th, 2008, 9:39am

Tim, there is no shame in taking Paxil or something like that for panic attacks/anxiety/depression. It seems to go hand in hand with some of this.

Also, has your doc tried a pred taper?

Have you tried Kudzu? You can get it from vitacost or iherb on the internet, and follow the directions on the container - it helped me for 14 months and had the approval of my doc, pharmacist, and neurologist. Then the company stopped making the form I used and the other forms didn't work for me.

The thing about verapamil, even if it caused a problem last time, you can try it again slowing ramping up from as low a dosage as 20 mg under the doc's supervsion. It may not cause the same problem this time. That is what happened to me, and this time I had no problem - but the slow ramp up in amount was hell waiting.

Good luck.

Charlotte

Title: Re: What else can I try?
Post by thomas on Jan 8^th, 2008, 9:47am

Have you talked to your doc about DHE treatment. It can give you a day or a week off. Depends on which method he decides is best for you. (Sub-ep shot or IV treatment)

Title: Re: What else can I try?
Post by birdman on Jan 8^th, 2008, 9:54am

Charlotte - thanks for the support. I have done pred tapers in the past, three in 2007. Was hoping to avoid another taper. I have thought about kudzu but need more info. Do I need to detox, etc? As far as verap goes, my neuro does not want to try again as my family has a history of heart problems.
Thomas - DHE is the last resort per my neuro. I may not be too far away from that but am trying desperately to avoid. Not sure if my concerns are legit or not but neuro seems to want to avoid at all costs.
Please keep the advice and info coming. I appreciate all of it.

Title: Re: What else can I try?
Post by monty on Jan 8^th, 2008, 10:01am

What about lithium, topomax, amitryptiline, or other options?

Also, I second Kcopelin's idea on antihistamines. But I like chlorpheniramine better than benadryl (diphenhydramine). Chlorpheniramine stays in the body longer, works better overnight for me.

Title: Re: What else can I try?
Post by monty on Jan 8^th, 2008, 10:06am

Also, the older generation antihistamines are also SSRIs. They may help with anxiety and depression.

Quote:

Some old antihistamines were selective serotonin-reuptake inhibitors (SSRIs) and the SSRI effect was discovered by Nobel Laureate Professor Arvid Carlsson as early as 1969. Chlorpheniramine was the most active of the tested drugs, and it compares favourably with amitriptyline and imipramine with respect to actions on both serotonergic and noradrenergic neurons. Chlorpheniramine can be called a SSRI, since the blocking of 5HT is stronger than the effect on noradrenaline neurons; however it might also be called a selective serotonin and noradrenaline reuptake inhibitor (SSNRI) and be compared with new drugs, such as venlafaxine. Carlsson suggested the potential value of clinical studies of the antidepressant properties of this and related antihistamine drugs. But, in the event, no such trials were ever performed at the time. However, later clinical observations of the benefits of dex-chlorpheniramine treatment in panic disorder have been published. Clinical experience suggests that patients using chlorpheniramine, and having also a concomitant depression or panic disorder, may experience a return of symptoms when their old drug is changed to a new antihistamine lacking SSRI effects. Yet this phenomenon is not known to many doctors, and even less known to the large number of patients buying chlorpheniramine under various trade names over-the-counter (OTC) at a low price for self-treatment of hay fewer or as a cold remedy. Chlorpheniramine was introduced in USA under the name Chlor-Trimeton as long ago as July 1950, and is still on the market. Therefore, this SSRI is now over 50 years old. If chlorpheniramine had been tested in depression in the nineteen seventies, it is probable that a safe, inexpensive SSRI drug could have been used some 15 years earlier than fluoxetine - which became available in 1987. Chlorpheniramine might have been the first safe, non-cardiotoxic and well-tolerated antidepressant. Billions of dollars in the development and marketing costs would have been saved, and the suffering of millions of patients alleviated.

Even though they say that these are non-cardiotoxic, that doesn't mean that they might not affect some types of arrhythmia - check with your doctor first on this.

Title: Re: What else can I try?
Post by birdman on Jan 8^th, 2008, 10:20am

Have to see what the md says. Currently taking 20mg paxil for panic/anxiety disorder.

Title: Re: What else can I try?
Post by Guiseppi on Jan 8^th, 2008, 11:00am

I've had really good luck with lithium as my prevent. For dosage compariosons I'm male, 48, weigh about 190 pounds. I take 1200 mg a day when on cycle, 300mg 4X a day. Blocks about 90% for me, 02 and the occasional imitrex jab keep the rest under rein. Might be worth a try, many have had success with it.

Guiseppi

Title: Re: What else can I try?
Post by birdman on Jan 8^th, 2008, 11:28am

Guiseppi,
Side effects?
Tim

Title: Re: What else can I try?
Post by Guiseppi on Jan 8^th, 2008, 12:17pm

Suprisingly few, I'm in law enforcement so obviously very limited as to the meds I can take and still work. I was very hesitant to try lithium as in my line of work it has bad connotations! Wish I had signed on much earlier.

The first 2 weeks you have to pee a lot. It's a salt after all and your body tries to dump it as fast as you take it. It takes about 2 weeks to build up to the therapeudic level you need, I've always done a 2 week pred taper to tide me over. (I'm episodic, roughly 2 cycles a year, 8-12 weeks) There is a little noticeable lethargy for the first couple of weeks, I can combat that with strong coffee, a staple when I'm on cycle anyways!

By week 3 I don't notice it. I've put my beat partners on notice when I start back on it, they claim they've noticed absolutely no differences in my behaviours, response times, etc.

The county is okay with it, thus far it's been my "silver bullet" against this thing. It requires a little blood work the first few days as you get your levels set and there are things you tell your loved ones to watch for as lithium toxicity is an issue, but not one I've had trouble with.

Guiseppi

Title: Re: What else can I try?
Post by birdman on Jan 8^th, 2008, 1:02pm

Thanks, the more ammo I have against this the better!

Title: Re: What else can I try?
Post by thomas on Jan 8^th, 2008, 1:50pm

on 01/08/08 at 09:54:49, birdman wrote:

Thomas - DHE is the last resort per my neuro.

I'm really not sure why so many people are afraid of this med, my wife and I use it to get a break. And besides the pain of the shot itself, side effects are pretty minimal. But I'm not a doctor either. :-/ Hoping you catch a break soon.

Title: Re: What else can I try?
Post by birdman on Jan 9^th, 2008, 12:39pm

This morning and again just now, the oxygen worked as an abortive. Thank God!!!!! Let's hope that this is a sign.
Tim

Title: Re: What else can I try?
Post by Bob_Johnson on Jan 9^th, 2008, 12:47pm

HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
_________________________________________
http://www.plainboard.com/ch/chtherapy.pdf
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. Rozen)
================
Treatment guidelines from Europe

------
A. May, M. Leone, J. Áfra, M. Linde, P. S. Sándor, S. Evers, P. J. Goadsby:
EFNS guidelines on the treatment of cluster headache and other
trigeminalautonomic cephalalgias.
European Journal of Neurology. 2006; 13: 1066–1077.

Download free full text:
http://www.efns.org/files/guideline_49.pdf
(Thanks to "cluster" for link.)