Hi all
I am glad to report that I have been completely PF for about three weeks now. I have been tapering down on steriods (nearly completely off the damned things now) and been taking and increasing dose of Topamax/Topimarimate.

I am on 100mg a day but I think I am going to have to stop taking it because although it has cured my clusters, the side effects are unbearable.  I was warned about the short term memory loss but it's REALLY bad. I have really lost my ability to think straight, communictae well, understand what anyone is saying to me, spell simple words and it's affecting my ability to do my job too...

My boyfriend says it's like I've had a bit of a peronality transplant which is a bit worrying! I'm concerned because in 6 weeks I am in court for a final family court hearing which in VERY importnt to me and I MUST be on the ball. I just don't think being on this drug is an option for me.

If I stop taking it, how long will it take to take for my mind to spring back to normal? Will I have to taper it down? Also when I talk to my doc tmrw, given that this drug was effective in fixing my clusters, does anyone have any suggustions for what to try as a long term preventative that doesn't leave me feeling quite so brain dead?

Hope this makes sense!

Jo

I am thinking Verapamil?

Ca I just stop the Topamax and just start the Verapamil I wonder?

Is anyone here taking Verapamil? Does it leave keep the mind clear or is a fogger like Dopeymax?

J x

I believe they should taper off of one and begin the other -it would not be an overnight change... Then it takes a few weeks to see the results of verapamil and you may have to adjust dosages until you get desired results.

Verapamil is a drug of choice for CH, however.  It should Not give you the cognitive side effects topiramate does.   Good luck!!! 

Bob Johnson has posted this on Verapamil many times - info might be worth printing & taking with you for your doc...

Val
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Headache. 2004 Nov;44(10):1013-8.   

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.

    Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).

Fab - I'll print that off for that doc and get a Vera script. The quicker I can get the dopeymax out my system the better xx Thankyou