I’ve posted in a thread of Nabeel’s in the anti convulsants section but I’m just dropping in here for general discussion too.
I’m not having a great time of late. As well as being on my THIRD bout of the flu for the season and being medicated up the wazoo with my new crazy mast cell disease I’ve boarded the Topamax train and wondering if I should get off. For one thing I’m on so many pills, I rattle. For another, my migraine stuff right now is in the ‘annoying’ category rather than the ‘hell’ sphere. I can live with annoying.
So - the Topamax. I got up to 50 mg and that’s been OK. I had a couple of very weird days and lots of finger and soles of the feet buzzing, but otherwise alright. But since I bumped up to 75 mg this weekend things have been awful. I’m like a zombie and I’m really not exaggerating. It’s like I’m in a soupy fog. I’m clumsy, forgetful, cognitively I feel like I’m in a fog, I really feel like I’m ‘on drugs’ if you know what I mean and it’s not pleasant. I have a job, I need to be alert and functioning and I’m just not. I really don’t think this is worth knocking out some annoying vertigo.
Everything in my body and dull, foggy mind is screaming ‘drop back to 50 mg’ if not ‘drop it all together’.
Hi Victoria
Yes, Topamax is a b… to get your brain/body to accept! Am sure the soupy brain fog etc is no exageration - been there…etc Which is why I took so long to go from 12.5 to 100mg (5mths). Dr Granot sent me a slip with the titration scale which went from 25mg to 100mg in two weeks! Yeh - right! For me, it needed at least three weeks to settle on a dose and then a tiny (12.5mg) jump. If I felt too bad I’d back off and wait another week.
Seeing as your migraine is in the ‘annoying’ category perhaps backing off down to 50mg (which you felt OK on) and give your brain plenty of time to get used to Topamax could be an option. It’s a strong but GOOD med (well, for me it was certainly worth all the hassle getting to 100mg). Having been on 100mg for over 3 months I’m beginning to see/feel why other people on the forum recommend it so highly in spite of the difficult ‘entry’. I haven’t felt so 'clear-headed since Nov 2010 when MAV hit!
Thanks Barb and Nabeel for your advice and words of encouragement. Just what I needed! I have dropped back down to 50 mg, half at night and half in the morning. I still feel fairly foggy but not the drugged out zombie I was. These pills are tiny though, I don’t know how I can titrate more slowly, I’ll have to try and get my hands on a pill cutter I suppose.
Thanks Barb and Nabeel for your advice and words of encouragement. Just what I needed! I have dropped back down to 50 mg, half at night and half in the morning. I still feel fairly foggy but not the drugged out zombie I was. These pills are tiny though, I don’t know how I can titrate more slowly, I’ll have to try and get my hands on a pill cutter I suppose.
Thanks again guys, much appreciated.
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Topamax can be a rough one to get up on. It may be too late for this time, but for those who need to go up REAAAALLLY slow I believe you can still get it made into a liquid (usually used for kids who need to take it). Those pills are crappy to cut, even with a pill splitter! I remember ruining a lot of them trying to cut them. When going up my doc had me do the extra pill every OTHER day to start with. Even though the blood levels don’t stay as even in the beginning, it helped for me. Those may be some things to ask about. For some, the fogginess does go away too. Good luck!
I am now up to 50mg. I have been going properly now for 2.5 weeks and the unsteadiness is already improved quite dramatically. I do feel foggy headed however and a little bit in a low mood. I am hoping this will pass however. IT is just such a relief to not be so unbalanced for once!
I think you and I have pretty much exactly the same symptoms! so would be good to hear from you
I am now up to 50mg. I have been going properly now for 2.5 weeks and the unsteadiness is already improved quite dramatically. I do feel foggy headed however and a little bit in a low mood. I am hoping this will pass however. IT is just such a relief to not be so unbalanced for once!
I think you and I have pretty much exactly the same symptoms! so would be good to hear from you
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Hey Richy!
Great timing on your post. I am actually on my second attempt at going from 50 mg to 75 mg of Topamax. I tried on Friday night again and was WASTED again yesterday. There is no good reason for me to do this as (happy, happy, joy, joy) the 50 mg has been working GREAT for the vertigo. The only reason I wanted to increase the dose any more was for the weight loss. Pure vanity and to counteract the weight gain from all anti histamines I have to take but really, endlessly adding more pills to the mix doesn’t seem like a great idea. A few extra kilos aren’t that bad…
Glad to hear you’re doing well too with the balance Richy - just keep an eye on your mood.
@Sarah - Dr Silver wants me to move up to 100mg eventually so I was planning to move up.
I would say my unbalanced feeling is improved significantly, however my mood since a couple of days after upping the dose to 50mg has dropped and I feel really low. Its so weird. You would think that because the dizziness is improved I would feel much better but I feel really really low. I am hoping this is just a SE of the Topa which will wear off… what a bummer if not!
@Victoria: Have you stayed at 75? People have done a lot worse in the name of vanity haha… Are your symptoms currently fully in check?
I’m on 50 mg of Topamax and have been for a few weeks now. I’ve tried twice to get to 75 mg and couldn’t handle it. I was a zombie. Given that I’ve been doing really well at 50 mg I figure that there really isn’t any point forcing myself up to 75 mg let alone 100 mg. It’s controlling the vertigo really well at 50 mg. Side effects now are just buzzy tingling in my fingers and feet.
Richy be really careful with the low mood. Dr Granot told me to watch out for that with Topamax and said if that happened to know it wasn’t me, it was the drug and to dump it. Up to you how long you tough it out of course but keep an eye on it.
Thanks so much for writing that, I have been considering lowering the dose for the past few days because of my low mood and what you have written has decided it for me. I am going to drop to 25mg and see if my mood changes in any way. I am really really frustrated as it has been helping my dizziness significantly. Typical me to pick up one of the “less common” side effects arghhhhhh
If Topamax ends up not working for you, maybe ask about Zonegran. They work in similar ways, but are different enough that you may not have the same side effects.
i have a question though- what makes you more depressed- being on the topamax and feeling less dizzy- or being on nothing and feeling awful??? is this a different kind of depression i guess is my question??? i am so depressed now bc of my symptoms i dont know how it could get worse???
i have a question though- what makes you more depressed- being on the topamax and feeling less dizzy- or being on nothing and feeling awful??? is this a different kind of depression i guess is my question??? i am so depressed now bc of my symptoms i dont know how it could get worse???
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its really difficult to explain Sarah. Normally when I am not on meds I feel frustrated and down because of constantly feeling dizzy, however I can still do things like exercise which in someway is an escape from the dizziness.
However the type of low feeling I am getting lately is that I don’t want to do anything. I feel like I don’t even want to get out of bed or anything… its really hard to explain, but I hope I have a little
arghhhhhh