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I just performed an ill advised act of rebellion and dumped topomax


#1

I was on 25mg. A week of titration to 50mg provided me with an experience that several years from now will be painfully funny. Not yet. Not by a lot. So, dropping down wasn’t really an issue except for the obvious - less migraines and less vestibular issues being paid for with side effects out of all proportion with the dose or the effects. A month in on a low dose, I can’t feel my hands, can’t think, can’t stay out of the bathroom and carrying a low grade fever. I mean, seriously?!


Can't do it anymore
SITE IDEA: category for drug & other treatment testamonials with star rating
#2

Not good, poor you … be sure to type that up when the ratings category goes live ! :open_mouth:


#3

I think I said this somewhere else on this forum, but I have an acquaintance whose wife is experiencing memory loss after taking Topomax for migraine prevention. She’s not on the drug any more (I don’t know how long she’s been off it) and is still having the memory issues.

Also, I have a friend who is a PhD scientist who has done pharmaceutical research. I was talking to her one day about vestibular migraine and told her about some of the different drugs that are used as migraine preventatives. I mentioned nortriptyline and amitriptyline, Topomax, and calcium channel blockers. She said, “Stay away from the Topomax. It can cause all sorts of problems.”


#4

Youch, should probably stick this in its own thread … done


#5

Again don’t let Topomax color your opinion on the other drugs. There are other fish in the sea and not all of them are sharks ! Amitriptyline could be a walk in the park for you.


#6

That’s where my neurologist wants to go next. Except weight gain is a common side effect. I already have a metabolic disorder (PCOS). The last thing I need is more fat. I qualify for gastric bypass right now, despite regular exercise and a keto diet.


#7

I’m on nortriptyline, which is a similar med. I asked the doc about weight gain and he said his patients hadn’t reported that. He said they mostly had dry mouth as a side effect (I’m having it but it’s not bad). I’ve only been on it about six weeks.


#8

I’ve had weight gain on Ami and not yet got rid of it despite coming off. That is nothing though compared to the annoying constipation. But even that was worth it for the relief.


#9

Thank you both.


#10

It’s been 4 days and so far I feel better than I have in months, not that we’re talking cured here, just not destroyed all the time. As my hands still go numb and there’s still a lightning storm going on behind my eyes, I’m thinking it will be at least another week before the topomax effects are out of my system and I can see where I’m actually at. 29 days on. 14 days to clear. This stuff is a neurotoxin. I never thought I’d miss unmedicated MAV.

Perhaps we can add diet/lifestyle modifications to the Big Med Poll? You all know mine is a hard road, but it’s treating me better and is easier to deal with than topomax. But then again, I don’t know where baseline actually is yet. I know where it used to be in the good days last year and the crap days this year. We’ll see where it falls.


#11

Hi Emily,

Does the Keto diet work even if you are not in Ketosis? Like changing your diet to cutting carbs and eating more fat and protein.


#12

Eek, thanks for the reminder. We were going to have a supplements poll. Give me some time …

In meantime please review and add any suggestions here:


#13

Yes, I mostly maintain a pretty low level of ketosis, as measured by blood tests. The thing is, you really do need to replace carbs (grains, sugars, alcohols, starchy stuff, fruits) with modest amounts of proteins and added healthy fats. Just add fats and that what you end up with - more fat on you but not much else. The idea is to get down to the threshold where your body is using ketones regularly as its main fuel source rather than glucose. Take a look at ketodietapp.com’s macro calculator and then healthfulpursuit.com’s take on it. She recommends a keto light approach that’s easier than full keto.

If you’re just starting, go paleo for several months. The transition is easier and you don’t have to worry about med interactions. Though honestly, I can’t figure out what those mean anyway. The keto diet doesn’t put you anywhere near the Diabetes Type 1 ketoacidosis levels. And if the worry is kidney stones, well, as migraneurs we’re supposed to be overly hydrated anyway. Personally, I was paleo for years first and have done keto in fits and starts, each time for a little longer. I’m hoping it sticks this time because I’d much rather treat my hyperactive brain nutritionally than dumb it down with medications and suffer the consequences in every other system. We’ll see. I’ve been on a first named basis with my pharmacist for years. I don’t see Martin getting lonely for my company any time soon.


#14

Will do, James. Thanks!


#15

Lol…I wish you see less of Martin in the future…paleo or Keto either ways means less carbs…paleo is easier because of more protein…I need to lose some weight and curb the cravings my meds make me have.


#16

Try paleo. Pay attention to your bloodwork. I was shocked at how much mine improved. The scale isn’t the whole story.


#17

I started topamax 25mg at night and woke up terribly dizzy (not my usual dizzy or vertigo), but enough that I had to stay in bed most of the day. Has any one else experienced dizziness with it?


#18

I did, for the first couple of weeks. That’s been true of every med I’ve trialed.


#19

I started 25 mg Tmax 2x daily (very good ab bedtime, not great ab morning) one week ago. Upon prescribing, I asked (dickhead truly) neurologist ab side effects: soda would taste funny, fingertips would tingle, risk of kidney stones. Drowsiness I asked? No.

4 days later I notice I can’t calculate simple 20% tips, text w accuracy, have to reread sentences. By day 6 I am bedridden with numerous Google searches for suicide prevention. I’m not prone to exaggeration. When I struggled again to get up today I did research and well. Bye Topamax.

These are MY results and may not be true for everyone.


#20

Topomax is easily the worst thing I’ve ever done to myself. Move on. There are other drugs. One or a combination will work for you.