Well, I've been using Verapamil at 480mg per day for a week now, immediate release form and three 160mg doses. It's already making me dizzy and I really hate the feeling. I think it has affected the CH a bit, though...maybe cut off 20 minutes from the normal 60 minute attack. I don't know if it's really worth it, though, considering having to use high amounts of magnesium and laxatives just to pull my stomach through with it. And on top of that, ECG just to see if the heart can handle it.

I've been thinking about lithium a lot. It's different from Verapamil, because it actually seems to treat the cause rather than the symptoms. The thing just is, I've been really anxious about trying it out since my neuro said that e.g. diabetes insipidus is a common side effect of long term lithium usage. Frequent urination, lithium toxicity, periodical blood samples, permanent kidney damage, problems with other drugs...the list seems to go on and on.

So my questions...how do you lithium users cope with those? Or are they really something that you have to cope with? Can lithium be taken safely on a long-term basis after all? I've understood that it's supposed to be a very good drug for us chronics, but I don't really want to have permanent kidney damage under the age of 30...or any other of the more "evil" side effects. How are you lithium users managing all the stuff that you have to manage with lithium? Is there anyone to check that you don't have lithium toxicity on a daily basis? Should there be? How does one generally go about using the lithium on a long term basis?

I guess it's surely better than the corticosteroids at the moment. I really would want to stop using them, but at the moment it seems impossible. Without the steroids I had constant shadows and 5-6 hits per day on occasion. Anyways, I'm going to talk about reducing the dose to 15mg per day at three different 5mg doses...at least that should be something.

Sorry if the post is a bit messed up. I just don't know what to think or how I should go about this. Maybe wait still a couple of weeks if 480mg of Verapamil will eliminate the hits completely? Then again, I had already two hits today, despite taking it and 20mg of Prednisolon.

Bleh, I just wish I wouldn't have to deal with any of this. Sometimes I just feel so lost and drained of strength...having to be able to reassure all my friends, family and boss that I will be able to pull through this without problems and they won't have to worry. I'm sure most of you know the feeling.

Anyways, thanks in advance for all the opinions / help,
Rosa

Hi Rosa,

Verapamil can take a bit of getting used to.  Constipation is a very common symptom.  You might try Miralax.  It's an OTC product that is very easy on the system and works well for some.

I'm lucky ( :-/ ) in that I've got IBS.  So Verapamil actually helps with those symptoms.  But that's me.

I think you should be patient with the Verapamil for a bit longer.  It takes 10-14 days to become effective.  Some see results sooner.  Some have to wait the whole two weeks.  So one week is a bit soon to be thinking of changing anything.  

You might want to talk to your Dr about a Prednisone taper.  This is a very common combination.  The Pred acts quickly to arrest the cycle while the Verap builds up in your system.

Verapamil was very effective for me.  In only had to use 400mg and it knocked out 90% of my attacks.  I only ended using a handful of Imitrex injections and used O2 for the rest.

One last thing... You want to be very careful with energy drinks when taking Verapamil.  Both Taurine (found in energy drinks) and Verapamil are calcium channel blockers.  Block too many calcium channels and you have heart rythm problems.  So be very careful.

Take care of yourself and let us know how it goes...

-Dennis-

I'm episodic , not chronic, but I've been using lithium for over 10 years. I'm male, 48, my cycles generally last about 12 weeks. I take 1200 mg a day of lithium while on cycle. I have never had problems with lithium toxicity. It takes several blood draws when you first go on it, just to get the dosing right. There are obvious signs of toxicity your doctor will talk to you about. Let those close to you know what to watch for.

It's been my silver bullet. Dennis is correct in that it takes a while for the verapamil to kick in, might want to give it a bit more time. Lithium takes 10-14 days for me to kick in.

Wishing you some pain free time soon.

Guiseppi

My maintenance dose of lithium is 600mg/day. I don't think most of us take enough of it to have to worry about all those side effects you mention.


Quote:

Bleh, I just wish I wouldn't have to deal with any of this.

A wise man once said, you can wish in one hand and shit in the other - see which one fills up first. ;D

Give the Verap another week or two before you make any changes: takes awhile to become fully effective.

I think I'm just going to reduce the Verapamil to at least 360. I began using 160mg on the 11. day of last month, raised every 3 days by 80mg to 480mg on 23. day and now every time I take the 160mg dose I feel a couple of hours like I have a car parked on top of my heart. Also I'm constantly tired and the ECG showed a pulse of 40. Blood pressure was normal. Topimax side effects were a piece of cake when compared to this.

Also, it hasn't really done much for the attacks. I still get the same 1-2 of them per day. It has perhaps cut off 10 minutes of the 60 minute attack time and hasn't affected the pain level at all...I don't think it's worth it.

Next choice River corymbosa seeds or lithium.

Agree; with a pulse of 40 it is time to try another preventive; just too low.

HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
_________________________________________
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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

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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:
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(Thanks to "cluster" for link.)

Listen to Bob
Your rushing it. Slow down . You cant just switch from drug to drug willy nilly and expect any of them to work properly. And yes I do understand your desire for haste.

Quote:

Next choice River corymbosa seeds or lithium.

You will need to detox properly and have a plan for this alternative to be effective.
clusterbusters.com.......LSA faq's
all the best :)
thebb
PS: none of these treats the cause, only the symptoms. ;)