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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Hello
        
(Message started by: Malapai on Feb 27^th, 2006, 10:43pm)

Title: Hello
Post by Malapai on Feb 27^th, 2006, 10:43pm

I've been to this site off and on for a few years, but never signed up for the message board. It is a great site for CH sufferrers as well as people who know someone who suffers from CHs.

I am 38 (female) and have had episodic clusters (right side) for 18 years and have yet to find a preventative medication that helps prevent or provide any relief from them when I am in a cycle. About two years ago I did try Zomig ZMT for an abortive and have had about 85% success with it. When a cycle comes now the headaches are more frequent than in the past and I don't like to take as many Zomig that are necessary to abort the headache.

I have tried Verapamil, Topamax, and Depakote. I recently started a cycle (about a week ago) and I was put on Verapamil by a neuro on call. My neuro now wants me to try Lithium 300 mg twice a day. I seem to be sensitive to medications and am hesitant to try this one. Has there been much success with the Lithium for the episodice cluster? The small amount I have been able to read today on the internet seems to aim the Lithium more toward the chronic CHs.

If this question is answered elsewhere on the message board...please point me in that direction. I visited the medication section, but did not find it in my first perusal. I will keep reading around the site.

It is a very depressing day when you wake up to a CH when you thought maybe they were gone forever.

Title: Re: Hello
Post by pfunk on Feb 28^th, 2006, 12:30am

I tink verapamil is a good suggestion if the docs have you on the right doseage. My doc started me on it last about 10 days ago and the frequency of hit has decreased from 6-7 hits/day to 2-3. He only has me taking 360mg/day but is going up this week since even the small doseage seems to have atrted to work fairly quickly. Had to get off topamax as well b/c it gave me kidney stones but I believe verap. is my new savior med since I have actually been HA free since late Thurs night/early Fri morning.
Keep your eyes and ears open around here because everyone's case is differebt and there are alot of us more than willing to give you any suggestions ad/or help that you may be looking for. If you are looking for another abortive, look into o2 and even read up on some of the alternative/vitamins that people use such as kudzu and even melatonin. Hope relief finds you or better yet, you find it first.

Pfunk ;) 8)

Title: Re: Hello
Post by burnt-toast on Feb 28^th, 2006, 8:22am

on 02/27/06 at 22:43:44, Malapai wrote:

I am 38 (female) and have had episodic clusters (right side) for 18 years and have yet to find a preventative medication that helps prevent or provide any relief from them when I am in a cycle. How long/frequently are you in cycle? Are your cycles predictable? Did you track any of your treatments in a journal?

I have tried Verapamil, Topamax, and Depakote. I recently started a cycle (about a week ago) and I was put on Verapamil by a neuro on call. Building sufficient blood serum levels are important for many preventatives to be most effective. Did you begin taking Verapamil or any of these other meds. prior to starting a cycle or after it began? How long did you try them? Did you work with your doc. to try varied doses, med. combinations and schedules for taking them?

My neuro now wants me to try Lithium 300 mg twice a day. I seem to be sensitive to medications and am hesitant to try this one. Has there been much success with the Lithium for the episodice cluster? The small amount I have been able to read today on the internet seems to aim the Lithium more toward the chronic CHs.

Believe it or not Lithium is fairly common and one of the safer/earlier drugs prescribed to treat CH (relatively speaking). Liver function tests and maintaining sodium levels are important to ensure that your body is handling the prescribed dosages well. Lithium is often combined with Verapamil but again maintaining blood serum levels is imprortant for it to be most effective.

It is a very depressing day when you wake up to a CH when you thought maybe they were gone forever.
I think a lot of folks here are with you on this one.

I've highlighed a few questions that may help others understand your situation better and provide more feedback.

It is really difficult to give medication suggestions - particularly when dealing with CH. Everyone seems to respond differently to the wide array of medications prescribed to treat this disease.

Keeping a good headache journal will help you to track and understand your condition, maintain records of treatments you've tried, identify what was successful and give you records that help you experiment with meds./dosages and medication schedules. This will also help your communicate and work with your docs. more effectively. If you don't keep one it's probably a good idea to start.

In all cases your docs./pharmacist should be your key sources of information/treatment with many of these potentially dangerous drugs.

Post some answers to my questions and see what feedback others can provide. I'm sure you'll get a lot of stuff to talk over with your doc. during your next visit. With some work you will hopefully find something that works.

Tom

Title: Re: Hello
Post by Dragnlance on Feb 28^th, 2006, 9:12am

Welcome to the board Mal!

Sorry to hear you too are a sufferer. This next comment is meant to make life easier not to discourage you..

CH is forever. Some people are lucky enough to get breaks, (I do not as a chronic) but it always comes back. The best thing is to always be prepared.

(sorry for the bad news)

Dragn

Title: Re: Hello
Post by seasonalboomer on Feb 28^th, 2006, 9:34am

Hey Mal,

Welcome to the community.

I can’t speak to the meds but would like to encourage you to stay with us here on the site. As another sufferer who fought valiantly for years only to reach a level of despair over the relentlessness of the cluster headache phenomena, I can tell you that the time spent learning and empowering myself with the information found here has changed my life.

Your mention of the depression associated with thinking of Cluster Headache as “forever” is common. This family has given me the tools to prepare for the fight, kind of like a corner manager in a boxing match. We all get hit, some far more than others. But, many here can help you prepare emotionally for the fight and others can give you feedback on the meds so that you have the right equipment for the fight.

My repetitive use of the word “fight” is intended. It is a fight. And like a fighter you need to take care of yourself in every way. Physically and emotionally. Then you can face the cycles and hits in the right frame of mind to hope fully reach a point where you are able to begin to build a trench between where you let cluster headache affect your “being” emotionally and that of a fighter.

So fight on! And hang out here and learn.

Scott

Title: Re: Hello
Post by Richr8 on Feb 28^th, 2006, 10:30am

on 02/27/06 at 22:43:44, Malapai wrote:

My neuro now wants me to try Lithium 300 mg twice a day. I seem to be sensitive to medications and am hesitant to try this one. Has there been much success with the Lithium for the episodice cluster? The small amount I have been able to read today on the internet seems to aim the Lithium more toward the chronic CHs. Some here have had great success with Lithium
It is a very depressing day when you wake up to a CH when you thought maybe they were gone forever. From what I've read here, I would never assume they are gone for ever.

This site is great, and the best part may be the message board and the ability tointeract with other sufferers. Non one you know can relate to your condition like the folk here. There is always someone here to ask a question of, share with, or just be there for you in your darkest hours. So, don't be a stranger.

The lights are always on.

Rich

Title: Re: Hello
Post by thebbz on Feb 28^th, 2006, 10:30pm

Welcome and sorry your hurtin. Aah the lithium cocktails.
Another weapon to beat the beast. Sometimes mixed with prednisone. Sometimes backed up with... and on and on . Hope you find something that works for you.
jb
O2, keep to the least poisonest prevent.
all the best to ya