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Henrithree

Topamax?

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I was prescribed topamax my doctor and I have mixed feelings.  I don't want to take any form of anti depression meds.  Anybody have any experience with this?  Episodic cluster headaches. 

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Henri,

Your feelings are correct... Many of us who have tried Topamax refer to it as Dopeymax as it leaves you in goofy state and doesn't do much to prevent CH.

Take care and please keep us posted.

V/R, Batch

 

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I tried topamax my last cycle in 2015. It did nothing to help.. it just made life worse because like batch said it leaves you dopey all day.. I've also tried lithium same feeling same result.  Most of us hear have been on just about everything our doctors can Google up.. at least that's my experience with most. True cluster headache drs or headache clinics are better then average nueroligist who may only have 1 or 2 cluster patients.. does oxygen and cafeen work for you? 

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Hi Henrithree,

Topomax is a tough one. (We call it Topiramate here in the UK, so you may catch me using that name, same drug though).

My clusters where pretty bad when my doc started me on it. It was the 'last resort' after a long list of other things that didn't work. I was told about 50% of people that try it can tolerate it, and tolerate is the right word. No one enjoys it.

I was, apparently, one of those 50%, but it still took me 3 months to adjust to the side affects. Some good, some bad.

Here's what I remember...

  • Every time I altered my dose, I felt like I was on a roller coaster for about 24 hours. I once remember being afraid to stand up at my desk at work because I felt like I was on a non-stop roller coaster for 45 minutes, and knew if I stood up I'd fall over.
  • Coke tasted like saw dust. Literally.
  • I couldn't stand the taste of McDonalds, or most fast foods (not a particularly bad thing)
  • I'd get about 1/3 of the way through a meal, and just get bored with food and stop eating. ( l lost a bit of unneeded weight, which eventually was the main reason I stayed on it so long)
  • When I was tired, I'd get REALLY bad double vision. Have you ever dragged a window across your computer screen when the memory couldn't handle it, and it creates a dozen echos of the window, or image, on the screen? That's what this double vision was like with any vertical straight line and lights. If I turned my head, all the doors in the room would echo, and where 1 door was, I'd see 10. It was worse driving at night. Car lights, tail lights, street signs and trees would all echo like that.
  • Then there was the general grogginess and just being out of it, numb emotions, tired a lot.

And what did I get for all this?

I was getting hit 3-5 times a week before starting on Topiramate, when I finally came off it, I was getting 2-5 severe attacks a day every 2-3 days, each lasting 2-4 hours. My clusters increased 10 fold. That's when I put a date in my calendar on which I was going to exit planet Earth. That's also when I created an account on this forum. That was 8 years ago. The methods you'll find on this forum actually work and won't screw with your head. 

Just my personal experience with it all. 

I'm a chronic cluster head, have had clusters since 2007, all year round. But my clusters now last 30 seconds to a few minutes, might hit a KIP3, or a KIP 5 if it's a bad one, and I get 1-4 a month. To be honest, I don't really notice them. 

MG

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Hi Henri,

 

im in the same boat as you. This is what my neuro has recommended but I don’t have the luxury of feeling dopey at work. 

Peoples experiences on topiramate scare me even more. 

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It’s a nasty drug and 3rd line treatment. I have a medical background and my doc won’t even recommend the stuff. Side effects are nasty. The sad thing is we will try almost anything to get the headaches to stop. I myself rely on psychedelics. Have you considered busting?  It’s less dangerous than any of the pharma

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7 hours ago, Freud said:

It’s a nasty drug and 3rd line treatment. I have a medical background and my doc won’t even recommend the stuff. Side effects are nasty. The sad thing is we will try almost anything to get the headaches to stop. I myself rely on psychedelics. Have you considered busting?  It’s less dangerous than any of the pharma

Sorry for the dumb question but what is busting? 

Im a little desperate as I’m not allowed to take verapamil or sumatriptans (no more than 1-2 per week) and I refuse to take topiramate...

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Type busting in the search bar. Or if one of the mods can move the thread we can discuss it further. 

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9 minutes ago, Freud said:

Type busting in the search bar. Or if one of the mods can move the thread we can discuss it further. 

Ahhhh. Ok thank you. Interesting thank you but definitely not for me. 

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  I must be the only one on earth whos had a positive result with this medicine without any of the nasty side effects.  Before I even had it prescribed to me I researched down a list of meds a came up with three which lead me to this one.  I was having 4-6 a day up to 45 mins at a time. ( someone else always had to time them. the pain had me losing all sense of time).  The medicine did cut down the frequency and severity of headaches 1 to 2 a day and can be any where from ten to 20 minutes.  The best I've done off of it was down to maybe 9 headaches in a months time....I'm taking 300mg a day of Topiramate.  But after reading the guys post about coming off of it and his returning 10 fold....that really freaks me out because I'm considering the shroom technique because I've heard of it's ability to rid of headaches completely up to three months at a time.  Also, to that I thought there was a specific a way to do it as in I thought I to stop taking the meds before I dosed the shrooms....But I did wanted to say that I didn't have all that badness from the Topirimate that most experienced...I guess I got lucky on that one huh,

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After 6 months of having (what I now know to be) cluster headaches (after MANY mis-diagnosis’s) I have been prescribed Topiramate after being unable to take the pain anymore. Currently awaiting the results of an MRI scan to see if there’s anything going on up there and then pending visit to a neurologist! 

I have been on the good ol’ Topiramate for just over a week now and the feelings of confusion, constant tiredness, exhaustion and vacancy seem to have subsided - it was intense for the first few days and I questioned whether I could remain on the tablets however I feel my body could be getting used to them now. Until my doctor ultimately ups the dosage from 25mg... all to be desired for!

I was also given a nasal spray (Imigran) to be taken when an attack comes on. I tried it for the first time at the weekend and to say it makes you feel ‘sleepy’ has got to be THE biggest understatement of the century, after 20 minutes of using it followed by gagging and trying not to throw up as this horrible taste lingered I passed out into some deep, long, Imigran induced coma for about 3 and a half hours. DEFINITELY won’t be using this at work! Maybe using this causes a disagreement with the aforementioned Topiramate? 

Has anyone else had an MRI scan for CH? And if so, what were the findings and subsequent advice given? 

Its good to see I’m not alone with a condition which is so wildly ‘not fully understood’! 

Thanks folks!

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I have had chronic, in the clinical sense (no full month free periods) but 4-5 years ago they were once a day tops or as low as 2-3 a week. Still high level ones, so I was tried on Topiramate (Canadian name use) my pharmacist said and I quote "Ahh, the California drug" I was like huh? She said it is kind of an inside joke, because it makes you skinny and stupid. Took several months for the fuzzy brain, no taste, and other side effects mentioned above to really dissipate, but it cut them to about 1-2 a week, nearing the end of summer...4-5 years ago, ended up with a kidney stone. In hindsight part of the problem was topiramate and I see now, I had one of the rare "heartburn" side effects but since heartburn was semi common to me, it never registered. So eating antacids like candy may have attributed to a calcium build up and to a stone.

So, to wrap up, I collected said painful, yet less painful than most of the beasts, specimen and next time I saw my primary Dr, she sent it out, took me off topiramate not long after as it was a stone consistent in makeup of those that can be a side effect of topiramate. 

Now, this is where things went to hell in a handbasket, not long, maybe...2 weeks? They started...5-6 a day, every 1.5 hours, lasting give or take 2.5 hours and rarely anything below a 6. every 5 days or so I would have a skip day, but that faded. I ended at a refractory chronic ch with even a return to topiramate doing nothing (Decided I would rather pass a few kidney stones a month than have the beast) but it did nothing. As of right now 4 years later am sitting at  funnily enough a new change, (might be related to dhe) of every hour for the last couple days.  So, use with caution, while anecdotal it surprised the hell out of me to read above someone else who had their frequency go out of control once they went off.

Final sum up, it worked, worked well, once passed the most annoying of the side effects and if you have a few pounds to lose.....But kidney stones and for me, they went insane once I was off.

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