I was on Topamax for approximately 2 weeks about a year and a half ago. I’m not sure if it was my body simply getting used to the medication, but I found myself not being able to function – so I went off of it. However, I’m curious to know if what I experienced was a NORMAL side effect, to begin with.
While on the topamax, I found myself feeling ABNORMALLY dizzy. I get dizzy from my migraines, but not to the point I did on this medication. I couldn’t function, let alone talk and I found myself practically drooling all over myself because my body was SO numb. This feeling was TOTALLY scary and so I couldn’t continue with it. The crazy this is that my AUNT takes topomax and she’s as fit as a fiddle – no side effects whatsoever!
So what gives? Am I the only one who’s experienced this or are there other unfortunate souls? Help a girl out. LOL.
Hi there,
What dose were you on? I have read of others having little or no side effects, and I have heard it was terrible. I’m wondering if you started out 12.5 if that would help? Could be it just wasn’t the med for you, but supposedly you’re supposed to give it a full trial unless intolerable side effects.
This stuff blows!! SOrry you are in the boat…Yo Ho Yo Ho a Pirates life for me… :mrgreen:
Kelley
I felt the same way when I was on topamax, but I gave it up after 3 days. A friend of mine felt the same as we do. However, her doctor really wanted her to take it, so she started on 1/4 pills or something crazy like that and built up to 100 mg. She was fine doing it like that with no side effects.
Hello,
Youre not the only person here with topa probs.
I was on it for a long trial.
This med nearly put me in the luny bin.
I believe the reason I failed with this med was, I whent too high on it.
I should have stayed put at a low dose , which was where I felt it had helped me.
Instead I tried to take it to 100mg,because all of the information nad research I had done, said that 100mg was the dose for migraines.
We are all so different, a dose that someone might find works and is tollerable with side effects, will mess with another’s head and body.
Mistakes are made during med trials, I’ve made a few that have put me in hospital.
That’s what happens when the Dr’s we deal with know diddly squat about this illness and medications we take.
I’m sorry you had to go through this, I know very well how topa can mess with youre mind.
Other people on this site have had success with topa.
best of luck with it .
jen
I had a bad time with it started at 12.5 knowing myself to be med sensetive the went o 25 with a brief stop at 50 mg befor moving on… shame it did help the pain but increase in other syptoms… my neice took for several years and did well on it … nothing ventured nothing gained…
Well, I guess this is an example of my cognitive issues with Topamax. I just wrote an post and somehow lost it!
I have been on 250 mg of Topamax for about 2 years (can’t remember exactly how long :? ) It actually has helped, but I would like to talk to my doc about decreasing the number or dosage of some of my meds the next time we meet. I really hate sounding like an idiot when I am talking to people. I can usually cover things up when I am writing by using Google when I have word finding problems.
I am new to this site and topamax and have done quite a bit of reading and asking, this site is a wonder of information. I have come to the conclusion that topamax affects folks in two ways, it’s either a horror or a blessing. For me it’s a blessing. I started at 25mg and am now at 75mg after 3 months and have a nearly normal life. The side affects are 20% or less of what I suffered before the drug. When I first started I thought it would be a terrible experience, based on what I read, it simply was not so. I’m sorry to hear you were not helped. My neurologist did tell me that there were other drugs with less side affects we could try if I could not tolerate topamax. Perhaps you should talk to your neurologist.
I"m pretty new here, too. I’ve been on a fairly low dose for only a week or so but the dose was raised from 15mg. once per day, then twice per day, then 30mg. once per day, then twice per day and I’m at that dosage now. Much less dizziness, and no headaches unless I set myself off with foods. My physical therapist thinks my neck is a knotted neurological contributor so it’s really difficult to discern what’s what. I’m having a good experience overall with the meds: side effects include cold hands and feet, some word jumbling but paradoxically I’m clear thinking, decisive, and energetic. Sleeping well at night. I decided to give it three months. I used to participate on the VEDA Facebook site for balance disorders and there are discussions there on MAV… one member had a consult with Dr. Timothy Hain and he advised giving preventative meds 3 months to work, especially in helping with food triggers. Kenny - I agree, you just gotta love all the information we are getting. I’ve got some great doctors that will elaborate on things, but not all of them.
Hey there, you don’t say what dose you started on and I think starting slowly and increasing slowly is key in avoiding the really horrendous side effects of this drug. I started just over a month ago on 25mg once daily and had a pretty rough time with it for the first week. I pretty much resigned myself to having to sit it out and got out the tissues, dvd’s and blanket and sat on the sofa and largely sobbed for a week. This truly awful part did pass by about day five though! You can take this dose every other day if need be though and increase as slowly as every four weeks if need be.
I’m still not loving it i’m honest (now up to 75mg/day) but I suppose part of that is that I’m seeing no improvement in my condition, plus one persistent side effect that I’m seeing with it (which is apparently quite rare) is insomnia - not a good combination with a migrainous condition where sleep is so vital.
If you were started on anything higher than 25mg then I’d say you didn’t have a hope. If you started on 25mg and your doc wants you to try it again then you may manage if you start on something much lower.
I definitely developed the word finding problem, but lost the wobbly problem (and more importantly, the severe dizziness episode problem). So it’s the old cost benefit analysis thing.
Hi – I lasted 3 days on Topamax. By the 4th morning I had pretty bad suicidal thoughts at one point fantasising about slashing my wrists and wondering what it would be like seeing blood over the wall. As you might imagine, I chose to stop that drug immediately. Within 36 hours the horrible thoughts and feelings were gone although I was left with loose bowels for 3 weeks. It was not my cup of tea. :shock:
hi, I got up to 175mg with no side effects unfortunately it’s not helping my symptoms though so I’m currently weaning myself off it.
I think with any medication the first 2 weeks your body is adjusting to it and after that it gets use to it so my advise would be to stick with it and push through the side effects before dismissing it straight away and give it a chance to work.
ella
Yes, somehow the more I read and hear about this medication I think that Topamax is a love it/hate it or works/doesn’t work/Hell kinda drug.
Even though I would have to say that so far it’s been a life saver for me, I am having to work very hard around food triggers especially at the smaller 60mg daily dose that I am on. It simply cannot hold off heavy food triggers, though I’m not sure that any medication really can… other than rescue drugs??? Help me out here, MIgraine Veterans !!! Please weigh in, since I’m curious as well. At higher dosages can the preventative meds be successful in overriding (some) food triggers??? Maybe that is the mistake that migraine patients make in not eliminating triggers when they go on meds…??? I’m just too desperate to take that gamble any more I guess.
Gail
I think it’s very individual but considering that many doctors don’t even advocate special diets / specific food avoidance (unless there are very obvious triggers) I’d say that yes, for a lot of people, prophylactic meds can raise the trigger levels sufficiently to overcome a lot of food triggers. 60mg is still a relatively low dose, you may find that you were less sensitive if you were on a higher does
But…
Most of these drugs (topirimate definitely included) have some pretty grim side effects, there are so many current threads on here about weight gain, loss of mojo, mental slowing, low mood etc as a result of medication that I think if you have very specific known triggers that you can avoid without too much torture in order to get away with lower doses of prophylactic meds (and the accompanying side effects) then it’s maybe a sacrifice worth making. I suppose it’s what you can work the best with in your life, and that will be different for all of us.
And…
Until you’ve got full control of your symptoms with medication I think you have to help it along in every way you can, and that sadly means embracing “no fun food” (I always feel like there should be a special aisle in the supermarket!!)
Dizziblonde
That makes a lot of sense. I really don’t want to be on a higher level of meds than I have to be so I’m diligently attacking the food triggers. This is really a tough one since for me since there’s so many variables with food intolerances as well. But so far so good, and this all is so much better that it’s been for me in almost 4 years that I almost hate to complain about the challenge of rerouting my eating habits. I figure it’s all got to work out, right??? Today I was able to work on the computer, go to three stores, have a tiny decaf coffee soy latte, and eat in a restaurant, then cook when I got home. More energy than before my migrain treatment that this all makes it so worth it…
Gail
Hi Gail, Not at all, please do moan away, there’s not one part of this lousy illness that I wouldn’t willingly give away.
On the whole though, you really do sound like you’re seeing much greater positive effects with this medication in the short time you’ve been taking it than I am, so I’d take that as a positive sign. Three months generally does seem to be the time bandied around as the time it takes to tell the full effect, but if you keep on seeing these same small incremental improvements week on week then you could be fighting fit by then. Will be keeping everything crossed for you…
Thanks, Dizzi
I’m getting a bit panicky about the food situation. I have a verrry limited scope at the moment. I’ll be interested to find out what my neuro thinks about the meds level regarding food triggers versus keeping other symptoms under control. It may be that I’ll have to increase the topamax at one point.
What dose of topamax are you currently taking??? I’m not sure I saw that on your posts… if it’s there, I apologize. And how long have you been taking it??? I’m marking my calendar for the 3-month mark just in case… LOL.
I do fine much better as long as I avoid corn, tomatoes, wheat, gluten, rice, dairy, coffee/caffeine, and ofcourse the infamous MSG group. I’m also looking forward to my allergy testing and subsequent shots (I already know I have a host of environmental and a few food allergies) so hopefully that will all help in the long run.
Gail
What dose did your doc recommend going up to?. 60mg is still towards the bottom end of the scale for Topamax (100mg/day is the lowest dose recommended for headache, though doses as low as 50mg/day were found effective for dizziness in one study), but if you’re having minimal side effects/getting on well with the drug but are still symptomatic then I would have thought increasing it further would be a sensible option - though maybe wait for a while as you do seem to have got up to the dose you’re on pretty quickly (Most doctors recommend starting at 25mg once a day and increasing by 25mg/day every week to two weeks max).
I was on 75mg and had been at that dose for a few weeks. I was supposed to be increasing by 25mg every fortnight but got stuck due to side effects - constant feelings of nausea, reflux, insomnia, agitation and restless legs, not to mention the usual tingles and the heaviest/most painful menstrual periods ever!. The insomnia was a huge concern to me as I’m sure lack of sleep is one of my triggers so felt myself getting into as bit of a vicious cycle with this drug (insomnia is apparently a pretty rare side effect of Topamax). Anyway, I met with a different neurologist on Tuesday who has prescribed pregabalin for me instead so I have in fact been weaning off the topomax for the last couple of days. Finally slept for eight hours last night totally naturally without needing any kind of sleeping tablets - bliss!, which has reassured me that for me, this is the right choice.
Please don’t let my experience dishearten you though, you seem to be going well on the drug and seeing improvement so hang in there. It’s such an individual thing, you have to find the one(s) that suit you best.
Ah crap, sorry Gail, just wrote the above post and then saw your message on another thread saying it had all gone downhill. Still early days for the Topamax but do you have some kind of treatment plan drawn up with your doc? or is there enything else that could have precipitated this deterrioration - where you are in your menstrual cycle, that kind of thing. Potatoes as a food trigger sounds pretty unlikely to me.
Dizzi - not to worry. Today is much better. I spent yesterday in bed, around my house. I also am thinking that I have developed either reflux or chest/respiratory symptoms since either using the advil so much or the topamax… can’t quite tell. Need to sort that out. The cough syrup didn’t set me off last night so it had to have been food the night before. I probably will need to move up on my topamax dose most likely to 75 but I don’t meet with the neuro until next week. I’ve really only been on the topamax a few short weeks so it’s still early to tell in all this. I am also noticing a problem with SALT… when I was being treated for “meniere’s” that’s the first thing they do is restrict salt, though that’s never been a problem for me unless I eat out. I might even post that as a separate topic to see what other people notice. I saw it listed elsewhere online and a migraineur friend at work even brought that one up. Interesting. Really, I only have a problem with dizziness and neck pain, hardly ever do I get the headache until it’s a full scale meltdown. Thanks so much for listening!! Glad to hear that the pregabalin switch might work for you.
P.S. Had a hysterectomy in my late 30’s so no menstrual onset of migraines for me… : )
LOL.
(I always feel like there should be a special aisle in the supermarket!!)