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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> What should I try next?!  
        
(Message started by: washed-out on May 10^th, 2008, 1:25pm)

Title: What should I try next?!
Post by washed-out on May 10^th, 2008, 1:25pm

Sorry for making another topic. I know that there are many topics about each medicine but I am so angry...

I am browsing 'our' medication survey (not for the first time of course) and I am starting to thing that there is hardly anything good for me...

Let's check whole "1st preventative suggestion" list:
Prednisone - can't take it (weight and other other health problems)
Verapamil - I have been taking it for some time - it didn't help at all, it was even worse! And I was suffering from terrible side effects (even on very small doses)
Lithium - haven't tried it yet but my doctor said that weakness and "feeling sleepy" can be even worse than those after Topamax/Verapamil...
Sansert - that's not available in Europe and I was told that it's pretty dangerous...
Depakote - same thing, as far as I know not available here
Anti-imflamatories - tired a few, didn't help
Beta blockers - haven't tried
Ritalin - haven't tried but I heard it's not very popular
Topamax - I am taking this SH*T now. OK even very small dose gives me an impressive relief but I can't stand side effecets.
Quit smoking - I haven't smoked even once in my life...
Change diet - didn't help
Stop alcohol - don't drink at all; I get horrible (prolly the worst) headaches after alcohol
Accupuncture/Chiropractor - haven't tried but I am rather sceptical (I know I shouldn't be...)
Lots of water - I drink A LOT of water every day...

As you can see... There is still:
- Lithium
- Beta blockers
- Ritalin

Before I started my Topamax treatment my doctor was thinking about both, Topamax and Lithium but eventually she found Topamax as a better thing for me. Anyway it disappointed us... So now I will probably try Lithium but I am afraid about weakness... (which appeared after taking Topamax/Verapamil :/)

After I was diagnosed for the first time (by another, not very professional doctor) I was also taking dihydroergotamine and I think it was OK but nowadays my headaches are much worse and I doubt that this weak medicine can help...

Title: Re: What should I try next?!
Post by Guiseppi on May 10^th, 2008, 9:54pm

The only advice I can give you is personal experience. I''m a 48 year old male, with CH abut 30 years, and a peace officer to boot! That limits me on what I can take as prevents and still work.

At 1200 mg a day, lithium blocks 80-90% of my headaches, oxygen and the occasional imitrex jab keep the rest in line. At 1200 mg a day I pee a lot the first 2 weeks and do feel a mild lethargy, nothing that prevents me from working. The problem with listing side effects is people assume they will automatically suffer all of them. Many people have found relief using lithium, it's certainly worth a try.

And I do understand the frustration, the first couple of failures really frustrated me too. Wishing you some relief soon. :-/

Guiseppi

Title: Re: What should I try next?!
Post by Bob_Johnson on May 11^th, 2008, 8:42am

Lithium has a long history of effective benefit for CH. Used with care, it's not a bad med (especially when compared with nothing being effective!).

But print these two articles and use as a tool to discuss options with your doctor.
---------

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.)

Title: Re: What should I try next?!
Post by washed-out on May 12^th, 2008, 5:39am

Thanks a lot for your replies.

on 05/10/08 at 21:54:19, Guiseppi wrote:

mild lethargy, nothing that prevents me from working.

But you felt like that only for 2 weeks or all the time? I am just curious, I am going to try it anyway.

Title: Re: What should I try next?!
Post by Bob_Johnson on May 12^th, 2008, 8:09am

It's important to keep in mind: a list of side effects for any given medication is ONLY a list of possibilities. The % of people affected may vary widely, person to person, drug to drug.

Don't assume you will have a reaction. When properly used, the vast majority of people do not have problems.

There is simply no substitute for working with a doctor who knows enough about the various meds we use so that he can guide you with care.

Title: Re: What should I try next?!
Post by washed-out on May 12^th, 2008, 8:47am

Yeah I know that... For example - Verapamil seems to work very fine for most of the patients and it is horrible for me (side effects).

I will try Lithium anyway (as I wrote), despite *possible* side effects. I need to try to know if I get them. Especially that it's one of the two medicines my doctor was considering.

On brochures there are always veeery long lists of side effects and believe me, I always try to believe that certain medicine will help me and I won't get any side effects... Psychic matters. But sometimes, after quite many failures, it's hard... :)

To be honest I was taking many different meds before my cluster headaches started and I didn't have any problems (side effects) with them. Hard luck, huh :)

Title: Re: What should I try next?!
Post by Jean on May 12^th, 2008, 9:58am

I used to think that the Verapamil caused me to be extremely tired and lethargic. It was as if I was a sleepy drunk. I think that I have figured out that it was more the HAs making me feel that way. Even in between the hits I just felt awful all the time even when I wasn't in severe pain.

I am taking the verapamil now and it is keeping the HAs away. Though I do feel a little tired, it is nothing like how I felt last year at this time. Also, the longer I am on it, the better it gets. I guess my body has gotten used to it. I sure can handle being a little sleepy better than getting slammed by HAs 2-3 times a day.

I hope that you find relief soon.

Jeannie

Title: Re: What should I try next?!
Post by DennisM1045 on May 12^th, 2008, 11:31am

I'd go for the Lithium if I were you. Everyone is different and you just can't tell how it will affect you based on your past experience with other, very different drugs.

I had a lot of trouble getting to 240mg of Verapamil last year. The 120mg steps were just too much for my system to adjust to. Weakness, passing out, low HR, .... I gave up on it then.

This year I worked out a plan to switch to the regular release formulation instead of the extended release formulation I was on. I also use 40mg pills so I could very slowly ramp up.

It worked, side effects are minimal and I'm on a very effective dose of 400mg.

This is just my experience. Good luck...

-Dennis-

Title: Re: What should I try next?!
Post by Guiseppi on May 13^th, 2008, 1:38am

Sorry took so long to respond....been a whsiker busy chasing my tail learning a new job!

Yes I only suffer the lethargy for the first 2 weeks, seems day 2-5 or the worst and even then a few cups of coffee pick me right back up. After that I really don't notice it. Really hoping it works as well for you, I hear your frsutration. The med failures can be heart breaking but it's really worth the effort when you land a good preventative. Keeping you in our thoughts and prayers.

Guiseppi

Title: Re: What should I try next?!
Post by washed-out on May 13^th, 2008, 9:15am

Thanks a lot for all your replies :)

I am going to my doctor this week, I hope I will get Lith.

Title: Re: What should I try next?!
Post by pattik on May 13^th, 2008, 9:32am

on 05/10/08 at 13:25:27, washed-out wrote:

I am browsing 'our' medication survey (not for the first time of course) and I am starting to thing that there is hardly anything good for me...

I haven't visited the medication survey for a while, and I see that there is no mention of the Clusterbuster treatments, unless you want to loosely associate it with "herbal" remedies. I would suggest that you visit their site and consider looking into these treatments. There have been many documented success stories over the years, including my own.
http://www.clusterbusters.com/

Good luck with your search, and PF wishes to you.

Patti

Title: Re: What should I try next?!
Post by purpleydog on May 14^th, 2008, 6:42pm

As others have said, side effects are not for 100% of the people taking the med. It's like this: When they are testing a drug, they must list each effect the person taking it perceives, and even after a drug has been approved, some people may have side effects that didn't come up the first time, so the lists of the effects can be long.

A lot of side effects do go away after a relatively short amount of time, and you'll feel fine. Then again, some people are a bit more sensitive, and it may take longer.

If you want to try something, and your doc can't give you a medically valid reason to not take it, then give it a shot. If my doc told me that a med may make me tired, I'd try it anyway. Anything to kill these damn headaches...