I had been taking only 25 mg of topomax at bedtime only. But recently the HA's had been burning through at about 4 pm. So I called my doctor and he said to start taking another one in the morning in addition to the one at night. Now, I had not noticed a lot of the side effects as I had been sleeping most of the off I guess, but today, I was down right stupid.

I couldn't remember what pair went where in a punch-down panel. I had trouble climbing a ladder. Mostly cognitive abilities were affected, reflexive abilities were as normal as can be. Is this a normal reaction? I got the weird tingling of the left side of the head instead of a HA at 4pm today. Should I increase dosage again? And does the taste of my beloved Dr Pepper ever come back?! It really tastes like camel dung now! WHY OMG WHY DID IT HAVE TO DO THAT!!!???

My speech is fumbling like stammering, and stuttering. Finding it hard to construct sentences. Is that a normal side effect?

This cycle is lasting oh so much longer than any other. All earlier ones had been ending in april. Here it is June and still getting HA's through a preventative. Damn, ain't that a pisser? I did have about 8PF days in a row last month though. Maybe a couple more on the way.

That's a very low dose of Topomax. When I'm in cycle, I take 150 mg a day and many other people take more. The fact that you are having such a strong reaction at a low dose, may not be a good sign. But.. the side effects you are describing are normal - although usually the tingles occur in the hands and feet. Say goodbye to carbonated drinks, they taste horrible on Topomax. I found that after time I didn't feel so stupid. The first time I was on it, I kept missing my exit on the freeway and I couldn't remember the name for asparagus. But I found that the tingles and memory/cognative issues improve with time. The taste of Dr. Pepper will not ;-(

~Kris

Unfortunetly I have never heard of anyone here who was on Dopy-max who DIDN"T have those side effects that you mentioned. I have heard people say it made them dumber than a box of rocks, it did me..and believe I don't need anything making me any more stupid than I already am. 
I guess you will to weigh the good against the bad and hope for a short cycle so you can get off the darn thing.  Yes, the taste of the soda will come back after you've stopped taking the drug...but I have to ask???

Is there any other preventative that you haven't tried that your Dr. could give you instead?


Linda

Hey there,

Your side effects are similar to the ones I had while on Topamax. I felt sluggish and my cognitive abilities were seriously hampered - I was at a conference, got in the elevator and had no idea what floor I was supposed to ride it up to - despite the fact that I had been staying in the hotel for five days! I also had tingly hands.

The kicker was that it didn't do much for the pain for me (I know it does for others, but it didn't work for me), so it wasn't worth it to go stupid and tingly AND be suffering.

Finding the balance between being pain free and happy with your medications is definitely a tricky battle. Whatever you choose to do, I wish you all the best.  

BC and Rosa - you didn't say how long you'd been on the stuff. I found that the first 10 days or so of Tope didn't really do much for me, that I was still getting Kip 8s or 9s at 12 to 2 am and again at 6 a.m. despite 50 mg x 2 per day, and needed my handy O2 tank at all times. But then it finally did kick in and the relief was sublime, if fraught with the side effects I and others (and you guys!) have described.

So no free lunch to be sure, and if it doesn't help you, certainly no reason to continue on it. But at least for me it did take some time to kick in. I hope this is of some help.

David

Well Rosa, I'm assuming all of your dosage adjustments were in consultation with your neurologist so I certainly won't question them - as I'm no doctor, just a concerned fellow CH sufferer. Although the fact that you reached a plateau and maintained a dosage of 100 mg/day for only 12 days, finding your headaches unimproved, and then began tapering down, is interesting. Again, I'll assume your neuro told you that s/he wouldn't assume you'd be helped by the Tope by then if you weren't being helped already? An interesting (and, frankly kind of depressing) finding. But one that will no doubt be informative to the group. I'm sorry it wasn't more helpful and hope there are other treatments that do indeed work for you. Oxygen, maybe?

David

Rosa, I started at 25 mg twice a day for 3 days before increasing to my current dosage of 50 mg twice a day. I've been on that for about... hmm... nearly a month now. As I said above, the first good 10 days or so were without relief from the daily acute attacks in the kip 8 or 9 range, plus the continual pressure and the days when I'd just slog through a kip 5 or 6 virtually all day.

My neuro IS experienced with these things (he's on the faculty at USC - that's the University of Southern California) and has told me that even at 50 mgs twice a day I'm on a fairly low dosage, as reports I've read here have born out. Maybe if I'd increased the dose earlier I would have had relief earlier, hard to say. I was also using Imitrex as needed, and bought myself a tank of welder's oxygen. Is that available to you in Finland? Or can you get medical oxygen? I must say, O2 is fantastic and I hope you've either tried it or have looked into it, either with your neurologist's help or on your own.  A number of great folks here on the board have helped me with invaluable advice and even offers of equipment - talk about a great bunch of people!

I wouldn't want to second guess your neuro, but my own made mention of people who are on up to 400 mgs of topamirate daily. If you can tolerate the side effects, and I know they're unpleasant (I'm a writer by trade and when I can't think of a word...), it would be worth it to see if a higher dose than your 75 might do the trick. Especially since it took a total of 100 over a 24 hour period, and that after a good 10 days, to knock my attacks down to a dull roar. Even then, every week or so, I get a kip 7 or so that I beat back with an Imitrex.

Good luck, keep us posted.

David

PS I've visited Helsinki a couple of times (during warm weather...) lovely city!

Balanchine wrote on Jun 16^th, 2008 at 7:30am:


Hmmh, that's interesting. And it did kick in then, after around two weeks? Anyways, it's great that it did help you

Balanchine wrote on Jun 16^th, 2008 at 7:30am:


That's interesting. It's a bit different than what Rozen says, but then again, times change and therapy evolves. I didn't really notice any difference concerning the CH when I was on Topiramate though, during the entire course. Now I'm off it completely, and I actually get only one hit per day instead of two that I got before. But I don't believe Topiramate was at fault for that. I got that with Deprakine too. I'd say it's because of either maintaining a regular sleeping rhythm, following a vegetarian fruit -based diet, beginning Verapamil (although I'm still at low doses)...or just pure chance.

Balanchine wrote on Jun 16^th, 2008 at 7:30am:


I have medical liquid oxygen here in my house, yeah, although the flow rate is currently only max 10l / min. I'm mostly using ice for the CH, it's easier and often also more effective than oxygen at that flow rate for me. I think I'll contact the Finnish gas company to raise the flow rate again, though. No point in having a lot of oxygen that doesn't help.

Balanchine wrote on Jun 16^th, 2008 at 7:30am:


Well, I guess I could have continued the Topiramate at 100mg or even raised it to 200mg for 20 days or so. But then again, I couldn't notice any difference with lower doses...and don't the preventatives usually at least give some clues to their effectiveness? Lowering the pain levels or such?

And heh, I know the feeling about forgetting words. Or forgetting what you're supposed to do. Or where to go. I remember someone here said that Topiramate made the brain like Swiss Cheese, which I think is quite an approximate way to describe it

Balanchine wrote on Jun 16^th, 2008 at 7:30am:


Haha, I personally like it during winter more. It's constantly dark and the city lights are great. But the best is really when the ground is covered by snow and ice and the moonlight paints everything slightly bluish. Being too warm sucks anyways, you can't get away from it. Cold you can always protect yourself from, by using more clothes

- Rosa

I have been upping my dose of Topamax over the past 4 weeks and am at 75mg at morning and 75mg at night. It has been a rough 4 weeks. The side effects have been brutal. This drug has made me stupid. My Neuro said from the beginning that The side effects would diminish, and I can start to see that happening. I hope it continues. The good news is that my CHs have gone from chronic to very managable. Shadows still visit but can't get through to do any real damage. Nothing at night at all. I think I am sleeping through whatever is there. I am going to reduce my dosage down to 50mg morning and night and see what happens. If the beast gets stronger I will increase one dose. Probably the morning dose as this stuff keeps me awake.

Hello everybody, I have been on Topomax for at least five years now. Went through a divorce recently and lost my insurance which meant I also could no longer afford my meds. I am 51 years old and have suffer with clusters since I was 14 back in 1971...can recall that day like it was yesterday. Anyways I started taking Topomax 100mg twice a day I went four years without a cluster first time ever since 1971. So now I'm back on the oxygen but  still not able to get on meds and I have to pay for my own oxygen!

David, Thanks for the welcome still in disbelief that this site exists. Yes, I do have the Falls welding 1265 but after reading some of the post about the mask I'm not so sure about my mask.This time I was given a different type than I have ever use before. It's call a C-Pap Oxy Mask south m. Has many holes.

Marilyn

Zoe,

I looked through my paperwork and found this...

Johnson+Jonson Patient Assistance Program.

1-800-652-6227

Teshayla Kennedy - Patient Assistance Specialist

Johnson+Johnson
Health Care Systems
P.O. Box 221857
Charlotte, NC 28222-1857

I do so love my little white pill Topamax;
Which takes away the clustered headache pain attacks;
Although of course the side effects,
Upon which now I do reflects...
Except I can't remember any of the damn words or the rhymes or anything else that would fit here and now I've even forgotten how to typ---xokrliykldyllx8407&6$(@;,s.??