Hey all
Just curious to see if anyone has any success stories in regards to using topopax? I hear nothing but bad thing's about it. Both my doc's (my headache specialist and internist) think its a good drug for me,since the verapamil side effects are getting to me. thanks all for the input
Anthony

Was on it for a year. Upside? Weight loss. Downside? Everything. Effectiveness for CHs? Zilch. blessings. lance

I took it for almost a year. It did nothing for my CH's. It made me dumb and numb. I was a walking zombie. It also caused me to have kidney stones, twice.

At my doc's recommendation, I started taking it back in 2006. Athe onset, I did have some bad issues(the forementioned kidney stones). But I have kept taking it as I did seem to have a pretty great deal of relief from the beast while on it. One of the other issues is that at first it made me dopey or 'dumb'(like I needed any more help with that). As time progressed, that seemed to wear off a bit. Now I am taking it 600mg a day along with my lithium at 1800 mg with no major problems.

Pfunk 8-)

Works for me 50mg a day.   I have gained weight.   My upper body seems to get a little cold, I have heard that could be a side effect.

I still get some clusters (very few), especially during change of seasons; but my quality of life has improved LOTS.   good luck

The side effects range from tingling in the fingers and toes and that usually goes away within a month of being on topamax. To memory loss and slowed speech and confusion. You can find all the data you want on it from the FDA testing. I have been taking it for over two years as a CCH, at 300mg a day. The side efects that I get from it are a trade off for sleep and to be PF.

Hi Anthony,
Only one way to find out, as you know. I did not tolerate it well at all. Others have found relief.

Roll of the dice my friend. I've rolled the dice many times over the years, sometimes ya' win... other times, not so much.... ;)

I personally won't go there again.  :-X

Best of luck in whatever you decide. Please keep us posted.

Baer

Topomax is doing good for me i am 23 Year old Female Chronic CH. I have gone from 15-20 CH days a month Between pain levels 7-10 to 4-8 CH days a month pain levels between 4-6. might not seem like a huge difference to some but to me it is a life change ! Not where i want to be but it also help you quit smoking/ cut back on caffeine if your addicted to soda or carbonated drinks (tasted like metal) / and lose weight. It does make you not feel to well for a little over a month / hands tingle/ vision disturbances/ feeling out of it (dopamax LOL). I just saw my Neuro yeasterday and he put me on lithium now to so hopefully that will help me get more PF days to. At first i was about to stop taking the topamax because of the side effects give it some time you will get use to it. what would you rather. Your feet and hands tingle/ a little restlessness ( sure if you have CH you already have that ) / weight lose / and no carbonated drinks. Or the BEAST????? lol

Anybody experience shortness of breah (dyspnea) while taking Topamax?

I'll say first, my experience with Topamax was at the extreme end for most people.  But I did experience severe weight loss--lost over 60lbs in less than two months.  It seems that most folks experience a much more moderate loss.

The most important thing when taking Topamax is to make sure you increase your fluid intake.  Many of the symptoms, including parasthesias (tingling/numbness in toes or fingers), memory loss, inability to find the correct word, increased chance of kidney stones, weird-tasting soda, visual disturbances--these tend to abate after 1-2 months with adequate fluid intake.

I take 100 mg twice a day and still have three headaches a day. They are manageble and are not as intense but are still bad and last 20 to 45 minutes. side effects are trouble sleeping skin feels funny I think I smell bad when I don't ireregular stool tinglinging in my hands and carbonated drinks taste funny like sprite and coke overall it is better than nothing at all and I use it in combinatione with different dosage of ibuprofen. The only thing that has only ever worked for me has been toradol shots but can't take them out here in the real world. Wish you the best of luck hang in there. Hope they go away soon.

Hey, all,

I suppose the majority of us have had Topomax/generic suggested.  Willing to try anything the professional suggested, I did use it for about 8 months.  Many, many issues, but it did seem to allow me some relief...but I may just have been between clusters.  Began a cluster while on the stuff, then decided to taper off.  Over a year before I felt 'detoxed'.  It has permanently (it appears) impacted sexual function.  Thank God for the CH site and the O2 suggestions.  It's done more than anything else to give some relief.

in the first 3 weeks i lost 22lbs on Topomax. No denying it is not a very plesent drug at all lol. but better then CH a K10.