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.

I had exactly the same experiences with Topamax  :-X

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

Pere, I'm a recent Topamax user and, despite the bad side effects, consider myself a convert. I second much of what Kris added. I call it the "Larry" drug, as in that middle member of The Three Stooges. You're not irredeemable, you're not Curly... but you're far from that genius Moe. Put another way, Topomax, in the first 2 weeks or so, made me feel like half the Seven Dwarves - sleepy, stupid, drowsy, dopey.

I found however that gradually the effects wore off. But more importantly, the drug takes away the pain. And that is this holy grail. So I'd say if you can possibly see your way through the weirdness and the zombie days, tough it out. Sounds to me as if your side effects were worse than mine, so it's easy for me to say. I also was getting the major attacks for those couple of weeks, at 2 a.m. and again at 6 a.m. even with my friend Larry onboard at 50 mgs twice a day. But eventually he kicks in... and it's heaven.

Oh and I lost 10 pounds in the first 10 days. Not that I was particularly overweight, but it never hurts!

PFDANs, friend. We're all with you here!
David

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.  :D
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

i am taking 2 a day and have the same problem ,but I think it helps to to cut the one in half that you take during the day and take the halves about 4 hrs apart ...hope this helps
                                             john

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.  

For me, Topomax at a dose of 100mg, raised at a rate of 25mg / 3 days, made me -really- stupid too. I had various problems, e.g. one saleswoman asked me if I want to carry the DVD-box by hand or if I want a pouch and I completely froze and just stared at her. However, after about three weeks all the side effects disappeared. Unfortunately I also did not get any noticeable benefits either.

- Rosa

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

I began Topiramate on 20.5.2008 at a dosage of 25mg, raised 25mg per three days. Dosage of 75mg / day reached on 26.5.2008 and 100mg / day reached on 29.5.2008. The side effects started to get better

There were no changes in CH on 10.6.2008, so at that date I started cutting it off again, at the same rate. The side effects of Topiramate began to disappear in the beginning days of June.

- Rosa

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

David, do you have any statistics about how fast it did help you and how fast you did increase the dosage? I'd find them quite interesting :)

My neuro is quite new to this, so we're planning the treatment for CH together, mostly using the two articles by Rozen and EFNS Task Force. I just figured out that since there were really no change in CH attacks at all and I had the Topiramate at a dosage of 75mg for a total of 15 days without change, it was time to call it quits. Rozen reports that the mean average dose used was 76mg and the mean average time to complete remission was 14 days in the open label study. He also says that CH patients generally need lesser dosage than that of migraine patients.

A finnish information page of Topiramate reports ( START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE ) that when treating migraine, higher doses than 100mg didn't help the patients. That's why I didn't start raising the dosage either. However, of course I could be wrong, or they could be wrong...do you know anyone whom the higher doses have helped?

- Rosa

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!

I take 100 each morning and night, and found that I didn't get pain relief until I got to that level - also, I found that once you got past the initial side effects, that you may be able to avoid future side effects by titratting more slowly - adding one 25mg morn/eve per week - the carbonated beverage taste thing never goes away, tho --- however, you may have an episode burn thru the Tmax like I did last Dec --

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

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.

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:

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.

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 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 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:

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.

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 :P


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

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

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 :D

- Rosa

As far as oxygen goes, though I'm a neophyte in its use I think everyone here will tell you that 10 lpm is simply too low to really do the job. 15 seems to be the lowest effective threshold - you really need to be breathing deep to get the best results - and 25 and higher is ideal. So if you can adjust your equipment that would be good. I found that 15 minutes at those higher flow rates did the trick for me.

I'm glad you're experimenting with different meds, sleeping patterns and diets. I have no doubt the latter all play a part. Stress is also important, I'm convinced. After 4 years without any headaches I'm more and more sure that my own current cycle was brought about partially by my brother's recent heart surgery (though I'd never tell him so - and he's fine now). Aye, 'tis a strange beastie indeed we wrestle with!

As far as preventives giving clues.... no clue. All this is too new for me. maybe someone else can weigh in?

Finally, I'll stick to LA or my hometown of Miami, thank you very much. Snow.... brrr.....

David

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.

Abaris, your experience sounds not uncommon. It would seem everyone gets very strong side effects from this stuff but that most people, at least anecdotally, seem to derive some benefit. I'm so sorry to read that our friend Rosa from Finland didn't seem to, and it would also seem that Pere who started the thread had more of the bad than the good.

For the record, I find that the side effects are diminishing after a month at 50 mg twice a day. My appetite is returning and I don't feel quite so stupid. Maybe others will have the same reaction. Certainly your neurologist has said this will happen, and seems to be right.

PFDANs to you and everyone.

David

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!

Zoe, welcome from another relative newoldcomer. I'm very sorry to hear about your insurance problem. I will resist the urge to go off on a rant.

Shall I assume you haven't tried the far less costly welder's oxygen route? (or is that what you're using?) If the former, a number of people here are very experienced in its use and guided me a couple of months back. I would be glad to give you the benefit of my limited experience, you can PM me, or the ones who know a great deal more would, I'm sure, be glad to help.

David

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 am in the same boat. Divorce. Loss of insurance. My Neuro set me up with a program offered by Johnson+Johnson (who produce Topamax) and they have picked up the tab 100%. They have sent me a card that I use at the pharmacy. This is for the Topamax only. I am still working on the Imitrex and Trexemet.

Brad

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

Brad, thanks so much I will check that out right a way!

Again Thanks

Marilyn

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.??

Some of my favorite Topamax stupid moments...

Taking a wrong turn going to to supermarket... 2 blocks from home.  

Forgeting the lyrics to the Beatles' "In My Life".  Better yet, remembering the lyrics but not being able to sing in key to save my soul... even though I KNOW I have and I can.

Getting lost in the shower (at least in my routine). I ALWAYS start with my head. I wash my face and then my neck and hair. Somehow I got all done and hadn't done my head.

Giving a prior address as "140wood Rd"  (read as "fourteen o wood road") when I was trying to say 1401 Skyridge Dr.

More to come, I'm sure.

Brad

Brad, I kept meaning to respond to this, but I forgot.