Last night before bedtime i took my first dose of Topamax. The strength is 25 mg…and i admit i was nervous about trying it because i am very sensitive with new medication. The following morning i felt slightly sluggish plus a little bit more motion than normal but they both wore off real fast…so thank goodness their were no intense side effects. Topamax was very easy for me in comparison to SSRIs. Anyway…i will continue at 25 mg per night for 7 days then up it to 50 mg for another 7 days. The doc wants me to get to 100 mg…but i am not sure i want to go that high. I will take it one day at a time and see where it all takes me.
Just in case it blows you out of the water, don’t despair. I know Richard started at 6.25 mg and titrated up ultra slowly. Every increase sent him off the edge with dizziness and increased symptoms. I started at about 8 mg and couldn’t hack it, probably because of the SJW I am also on. But if I revisit Topamax I’ll probably have to start at a lower dose. Richard is sitting at around 90% now at 50 mg … it all came good after 4 months. I’m very tempted and will be really interested to see how things pan out for you.
If it helps at all, I have taken Topomax twice. If memory serves me right it was one tablet (25 mg?) a day for two week then another pill everyother week. From the Dr Haines directions that I have been posted and my own experience, I would go his route if I were to try it again.
For me, my balance improved significantly within the first few days as the frequency I fell noticibaly decreased within a few days. It took longer for the dizzies to go away. Actually I can’t remember if the dizzies started to fade as I ran into a nasty side effect that interferred with all aspects of life: temper. I have never heard of other people having a problem with temper caused by Topomax, so I figure I am just a little weird. If it wasn’t for that issue, I would probably still be on it.
That’s fantastic Joe,
it might just be the med for you.
Some people have good results at just 25mg joe.
my neuro said even some poeple with chronic temporal lobe epilepsy, only need 50mg to stop their siezures.
it’s strong be carefull.
awsome! :mrgreen:
I woke up this morning and the sluggishness (side affect) is barely noticable so i’m thankful. As you know i have just started on this medication and i’m not getting my hopes up real high…i’m staying right in the middle but keeping cautiously optomistic for improvement.
I have been taking it for three years now. It has stopped my migraines completely. Nothing else even touched them, and believe me, I tried everything imaginable. I did have luck with a beta blocker but I was like a zombie and could not function so I had to discontinue that. It did not help my vertigo for the first two years, but that has also improved immensely as of this year, too. The only problem I am having ith it now and that started gradually during the endof the first year, is dry eye. It can be a real problem for you if you wear contact lenses.
My neurologist did say that the Topamax is the reason why I have such dry eyes, and problems with dry sinus passageways dring the winter months here in New York.
Once you adjust to the Topamax and reach the correct dosage for your particular system, you may find that your migraines will be under control. Good luck
Karen, Have you figured out any ‘cure’ for those dry sinuses? Please don’t suggest a neti pot 'cause I just can’t get the hang of that! : ) I was hoping a simple nose spray would do the trick, but not sure that’s gonna be enough. My next plan is to set up the vaporizer/humidifier.
And the others have referred to me as a Topa-Sis, so Joe, I guess that makes you a Topa-Bro … some how that doesn’t sound as cool … sounds more like something you’d use in the kitchen :mrgreen:
I have tried the neti-pot and that is good for allergies, but I do not think it helps dry nasal passages. I bought a portable humidifier this weekend since the one that is part of our heating system does not seem to be much help. I will let you know if it is useful. The only other suggestion I have is to ask a pharmacist. They are usually very helpful with those questions.
I was so dry a few weeks ago my eye doctor said if I didn’t do something quick there would be damage to my eyes. I looked at the little gadget i have next to the bed and sure enough the humidity in the house was down in the low 30’s. I brought out the humidifier and it’s up in the high 40’s which is about as good as you can get around here in the winter and it has made all the difference to the way my eyes feel. I’ve also been able to slow down on the eye drops. And when I do use the drops, they don’t burn anymore.
It had to have been the Topa, I’ve never had this problem with my eyes before and last winter I was on Zoloft, which also dries you out.
Glad to hear that the humidifier is working for you. I used mine for the first time last night, and so far, so good. Did you switch from Zoloft to Topamax, and if so why? I am curious because I have been taking Topamax for atleast 4 years now and had to start taking Zoloft too in June of this year because I have neurocardiogenic syncope. I am certain that has only added to my dry eye problem. It would be better if I could only take one or the other but every time I even attempt to reduce my Topamax dosage slightly, I get a large headache the next day.
I’m glad the humidifier AND the Topamax AND the Zoloft are all working for you.
I went off the Zoloft because it did nothing for my dizziness. It helped with my energy and took down quite a bit of my aura, including my light and sound sensitivities, and my visual aura. I had visual snow so bad I could barely see. But I had to go off of it to go on Pristiq which was quite effective in bringing down some portion of the dizziness - more effective than Topamax. But, as always, only to an extent. I really got very little mileage out of any of the preventatives, and always at the very beginnings of treatment. It was only by piling one on top of another that i got as well as i did, but they still kept me virtually housebound. The only thing I could do out of the house was walking. Thankfully, now I can drive, my life is finally normal again.
Thank you for thinking of me. Yeah…the side effects only lasted about 2-3 days which mostly were slightly sluggishness and my motion was a little more intense. The sluggishness is gone and the motion is back to the way it is normaly everyday. I’m glad that it went relatively smoothy because i know other folks didn’t have it so easy. Tomorrow (Saturday) will make a week and i have found no improvement…but i need to give it a little more time…plus i’ve decided not to increase to 50 mg until one more week.
Good to hear that’s it’s going well. I don’t think I’d be expecting any miracles until maybe 2 months passes and you hit around 50 mg too. Be great if it shows some efficacy immediately though. Also gives me some hope hearing that you’re fine if I decide to give it another go.
You know, I wonder if Topamax is a bit like an SSRI in that it calms down a particular part of the nervous system? And by keeping it calm long enough, sort of resets things back to normal. Maybe this is why some people can come off the meds after about 12 months and be OK – as they can after antidepressant treatment.
At the moment I’m getting back into lots of cariovascular exercise. It’s killing me physically but that’s because I’m so out of shape. Just back from a 14 km ride (about 9 miles) and not feeling dizzy which is great. If this keeps up I may be able to increase my threshold and keep anxiety/and or depression away too. I’m off SJW completely now (day 3) and feeling ok. I think the 5HTP is keeping me sorted out. Good because it’s a supplement really and not messing around with serotonin uptake etc. Have had enough of that junk.
This just came to my mind, as you were musing about how ACs work. I grabbed this off another forum. The poster’s neurologist gave her this explanation. Interestingly, the same site claims that the reason Topamax is so tricky is because too little dosage can cause you as much trouble as too much dosage. I thought of you when I read that.
*Your brain waves move along like waves in a swimming pool. They have a particular rhythm. Even if that rhythm is considered “off” from normal (different epilepsies, depression, mania, etc.), it is your rhythm. Your brain is accustomed to that rhythm.
The introduction of an anti-convulsant (of any type) disrupts that rhythm. If the dose given is out of sync enough with what actually was needed, the disruption can be great enough to “slosh water out of the pool” (so to speak) and actually lead to greater instability.
Conversely, even if the dose is “dead on”, the “shock” of the AC may only put the wave “right” for a brief time before inertia pulls it back to its original pattern.
Ideally, the AC will “shock” the wave into “normal”, and then a titration upward of said AC will keep that wave in place.
It is this concept that forms the basis for what is called forced normalization in epileptics.
*
This is a really interesting thread as I am considering a re-trial of topiramate …but at a much lower and slower rate. I was prescribed it last December starting at 25mg for a week and then up to 50mg. However, after just a week I began to feel very very ill - viral, flu-y, fatigued, useless…and after 3 weeks was advised to come off it because I was so depressed - crying all the time, black and frightening thoughts. I was then tried on lamotrigine. Had some good days over an 8 month period, but generally constant MAV symptoms and a lot of nausea and - again - the odd week here and there of feeling viral and run-down. I was recently diagnosed with basilar type migraine at a London clinic (having been also diagnosed with MAV by a neurotology clinic last year) and was prescribed either propanalol or a re-try of topiramate starting at 12.5mg. My GP expressed some concern at the suggestion of a topiramate re-trial because of how ill I was last year, and suggested that if I do go down that route that I start at 6.25 ie quarter of a 25mg tablet. I’m not keen on the beta blocker because of the exercise intolerance/fatigue/weight side effects that seem so high with this particularly medication. Has anybody else had experieence of topiramate re-trial and low dose being successful?
I started Topamax the first and only time at 6.25 mg and it went very smoothly for me. I had no problems at all and much improvement. Sorry, i can’t give you the re-trial info you’re looking for.
