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Topic: What Topamax seems to be doing for me (Read 3266 times) |
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Ozark_E
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What Topamax seems to be doing for me
« on: Oct 24th, 2006, 10:50am » |
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I know most of the post regarding Topamax (perhaps all lately) have been about the side effects and have been in the negative. After a 3.5 year remission, I am in my 6th cycle since 1993. My normal reprieve was 24 to 28 months, so I got a longer break than normal. Anyway, when the cycle started, I went on 60mg of Prednisone for 10 days then tapered off by 5mg per day, and 50mg of Topamax and tapered up by 25mg per week or so. When on prednisone, CH were GONE. I didnt worry about triggers, went for a 2-mile run, ate all kinds of crappy food, etc. As soon as the prednsione dropped out, the CH came back. Imitrex is 100% effective in stopping headaches for me.
This is my 1st cycle using Topamax, and what it seems to do for me is that it keeps the headaches at or below about a kip 5-6. I have tried a few times to not medicate with imitrex, as I am concerned about the long-term effects it will have on my body. So I lay down and just chill out. The headache is present for hours, sometimes as much as 6 or 7 hours, but never unbarable. I use o2 as well, and that is helpful. In all my previous cycles, the CH would alway escalate to a 7, 8, 9... I don't know if I've experienced a 10.
A concern however is that they are persisting for so long. In the past. I've usually gotten one CH per day in the peak of my cycle. It comes on strong and fast. Lasts 1-2 hours, then goes away. Now these realtively weak CH's just persist, and eventually I give in and take imitrex so that I can cope. I cant function normally, aka work, be with my wife and daughter with a kip 5-6. Luckily, I can take an Imitrex pill and wait for its effects as opposed to injections. If that is one benefit of Topamax, it is a worthwhile one. I thought I was a bit Doppy from "Doppymax" but realized it was more the prednisone/topamax(/caffeine) combo that was doing this to me than just strait topamax. I am up to 200mg per day, and hoping it is helping. I am 5 weeks into what is norally about an 8 week cycle, and hoping my beast does not morph for the worst.
I'd appreciate any feedback you all have to offer, and THANKS for offering such a great community of support, knowledge, and experience. Hang in there.
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Ozark_E
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Re: What Topamax seems to be doing for me
« Reply #1 on: Oct 24th, 2006, 1:03pm » |
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PS,
There is a bit more information I should add. I did get an occipital nerve block near the begining of this cycle. perhaps it wore off around the same time I tapered off of the prednisone, who knows. Also something I thought worth noting. I was able to get a few PFDANs as you call them since the CHs came back by (taking Topamax? and) managing my intake of triggers. This is a major focus of my awake life right now. Staying hyper hydrated, avoiding preservatives, cheeses, eating as much fresh food as possible, avoiding sugars, trying to stay regular, avaoiding glare, and the like. I've also noticed tylinol and ibuprofan to be a possible trigger, anyone else notice that? Also, I am trying to time taking my topamax right. If I take it too early at night, I wake up early morning with CH. If I sleep in too late and take it too late in the morning I get CH in the evening. Perhaps I should take it 4 times daily instead of 2 times. I'll have to ask the neuro about that one... Anyway, I'm just thinking out loud at this point...
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HeadhurtinMama
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Re: What Topamax seems to be doing for me
« Reply #2 on: Oct 24th, 2006, 8:27pm » |
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I myself am also new to topamax. I have been on it for two months now. I can't tell if it is really making a difference for me. It could be making my ch worse or it just happens to be a really bad time for me. Sorry I couldn't be more help, but hopefully someone else can chime in with more experience.
Bridget
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Here comes the rain again
Falling from the stars
Drenched in my pain again
Becoming who we are
Wake me up when September ends
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fjgcpa
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Re: What Topamax seems to be doing for me
« Reply #3 on: Dec 2nd, 2006, 11:15am » |
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Hello I am always reading negative things about Topamax yet it is always something we are trying. I am also trying it for the first time and was wondering how you were doing on it. Unfortunately for me, i have High blood pressure and I can no longer take the Imitrex injections. Instead i carry around with with me day excedrin and midrin and rotate frova and zomex weekly since the insurance company only allows six pill per month. I am also taking topral for my high blood pressure which is a beta blocker, but it has only taken the intensity off the major ch not reduced the number or frequency. I just strarted taking the Topamax because the phamacist gave me the third degree last month when I made the mistake of refilling my prescrptions all at the same time. I had to explain to her that I was not dumb enough to take every thing at the same time. So she was pushing the Topamax.
Long story short, how are are you you doing on Topamax, is it working and what is your prescription levels
thanks
Frank
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stargirl50
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Re: What Topamax seems to be doing for me
« Reply #4 on: Dec 3rd, 2006, 7:15pm » |
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I (think) I am at the end of a ~6 week cluster. I took 4 weeks of prednisone while I tapered up on Topamax and it's worked well so far. I have taken Topamax for a long time; I know everyone on here is really down on it but it has really been a great drug for me. I tried verapamil and that didn't help me, so Topamax was the next thing I tried. I actually even took it for about 2 years straight (not that I'm advocating that, I wasn't really seeing a dr consistently at the time) but-- I didn't have a single cluster during that time and I usually get 2 clusters/year. My dose goes up and down depending but right now I'm taking 75mg in the morning and 75mg at night (that's a high dose for me). No significant side effects so far. Hope it works as well for you guys!
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ShaneM
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Re: What Topamax seems to be doing for me
« Reply #5 on: Dec 3rd, 2006, 9:09pm » |
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I had a really exhausting summer. My cycle started as usual in May but did not break with prednisone and did not end after the norm of 6 to 8 weeks. This was also the first time I was serious about taking the topamax to the letter of the Drs order. After 4 1/2 months my cycle finally ended. During the middle of the period when I was fighting the beast the hardest I talked to my Doc and tappered off. For whatever reason I decided 2 weeks after being completly off of it to give it another try. Now, it may have been that I was on my way down and didn't know it, but it (at the very least) seemed to make whatever hits I did get less intense. The amount of Topamax I had gotten up to was 200mg. I have not had the slightest twinge in, I think 3 months (?) now.  I lose track in the PF times BC I'm so freakin happy. I am due again soon after the new year. I have tappered the Topamax down to 150 and was planning to go to 100 next week. I am glad to hear that someone else is having some kind of luck with it. Please, keep us informed (all of you) of progress, there aren't that many.
Shane
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