2 quick questions for anyone who has used Topirimate. First is, is the effectiveness cumulative, meaning, if I stop it today, will it still be effective? Or is it effective at the point I take it? I notice I have the rumblings of my CH in the evening; I get home and take the Topamax, and by the time i go to bed, no more HA. 2nd question is regarding side effects. It's not listed, but any side effects on anything affecting taste? Everything tastes flat and weird to me, but it may not be the medication, not sure. soda tastes flat, many foods have  no taste, etc.
Thanks, again, all.
Mike

It definitely causes certain things to loose taste, especially sodas and/or other carbonated beverages. I'm not to sure about other foods, though i do seem to use a good bit more salt while I am taking it. I am a regular Mt. Dew drinker and cannot even drink it right now as it does not even taste like the same drink to me. Some soda such as Dr. Pepper and Cherry Coke, etc. are tolerable and I have started drinking them when I have to have a soda.

Pfunk

Topamax, like many other prevents, needs to be tapered up and down. When I took it (though it didnt do much for me), I was instructed to taper down 25 mg every 5-7 days until down to zero. Simply stopping cold is not something I would recommend.

In the process of tapering down it will certainly remain effective up to a point, depending on your dosage, but I would think that dosages below 50-75 mg will loose their effectiveness.

My side effects included loss / change of taste, particularly with any carbonated beverages, pins and needles in my limbs and occasional distorted vision at night.

May I suggest that you try a simple energy drink for your evening rumblings (probably shadows) and see whether they are not as effective. You may find that the relief you are getting is not related to Topamax, for it does not have any abortive quality I am aware of.

Neuropath, that was the second answer I was looking for. Perhaps, then, I am just coming to the end of the cycle (finally, after 4 1/2 months) and I'm just getting some pangs in the evening and morning like I did back in December and january). I do drink a Monster or Red Bull around 3 or 4PM and it does work while not keeping me awake. Amazing stuff, actually. I've moved away from the O2, as my 2AM psychosis has stopped, since about 2 or 3 weeks ago. I'm almost afraid to "feel well", and when my head twinges a little, I feel the "comfort" of that pain, as if to say "there it is, now I can relax that I'm still alive". sounds weird, I guess.

Hi,

regarding topamax/topiramate...
I am taking it for quite a while now.

Question 1. If you stop taking it now, the effects will wear off pretty fast but your body will have some trouble adjusting to it (depending on the dose). This means it's a pretty heavy drug. You need to build it up and tune it down for your system to slowly adjust to it, at least that's what my neurologist said. In my experience, if the dose is over 50Mg the effects of topamax should last at least strong enough over the next 24 - 48 hours when you stop taking it.
He said this is actually a drug that's also given to people who suffer from epilepsy. The way I understand it is that CH patients get this medication because this medication seems to somehow couteract the widening of the bloodvessel walls. (sorry for the strange sentence construction.... I don't know the correct technical words in English... but I'm sure I'll learn about that here  :) )

When I started taking it first, I had to start with 25Mg for a week, then 50Mg... After a whil we figured out that didn't work so I have to take 75 continuously. 100Mg during a cycle. My neurologist says this is actually still a pretty low dose since some people get a 300Mg dose or so.

AS FOR the side effects.
I have noticed some change in taste, but I couldn't place it before. It wasn't until after I read your post that I started thinking and linked it back to when I started taking topamax.
I don't know exactly when it happened anymore, but maybe this has something to do with it...

However, there are some other side effects:
1.
topamax lowers your kalium levels.
I notice this a lot so eating banana's alone doesn't help for me. I need to take extra kalium.
2.
Topamax can make you loose wheight. Apparantly for me that's the case. I'm already pretty thin but well.. I eat a lot so now I can keep eating. At least there is at least 1 good thing about this all  ::)

Because of the kalium thing though, I decided to stop taking topamax during my last remission though. I couldn't take the fact that my fingers, lips and toes started to buzz when I had to walk fast to catch a train, and I can't help but think that it makes me constantly feel light headed, unconcentrated and misoriented.
I wonder if stopping the topamax intake caused me to get a cycle about 3 weeks ago. Normally I only get a cycle around Christmas.

Thanks for the reply. The funny side effect is that after I ride my bike, my ears, my actual earlobes and ears are buzzing for hours (not inside, but the fleshy part), and my fingers and toes, as well. Also my cheeks and nose. Food has lost some of its taste, and I need a lot more things with flavor, like salt and oregano. Also, splenda tastes disgusting now. I'm up to 100mg at night, and I'm taking melatonin to help me sleep, and it's working quite well. I'm still getting "shadows" and some mild headaches in the heat. I'm able to control the headaches with oxygen, mostly from exercise though. cycling (bike riding, I mean) had been a life saver, as it keeps me fit and get the O2 flowing.

Ok, the buzzing feeling you get is definately due to the kalium loss. You need to get extra kalium I think.

I have a bottle of which I need to put juice in water, mix it and drink it. I suggest you go to a pharmacist and explain you take a high dosage of topamax. I found that taking a normal dose of kalium after I already felt the buzzing feeling didn't help... Normal dose of kalium only worked when starting at the SAME time as the topamax preventive.

I suggest you consider taking kalium and start out with a higher dose. But maybe consider talking about your doctor about this. I HATED the buzzing feeling in my lips, fingers and toes but the kalium really helped me there. I always got that feeling after walking.

Either way, LOADS of bananas can help as well. Banana milkshake is nice. However I ate a lot of bananas and I didn't feel like it did anything for me.

I really hope that this information is helpful to you.
I know how annoying this buzzing feeling can be!

Take care!

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Edit:
My apologies.. In Dutch we say "Kalium". My wife corrected me tonight and explained the word in English is "potassium".
Hope this makes it a little more understandable.
Good thing my wife studied to be an English-Bio teacher  ;D