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Cluster Headache Help and Support >> Cluster Headache Specific >> Topamax results so far http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1329929418 Message started by Bonnie lee on Feb 22nd, 2012 at 11:50am |
Title: Topamax results so far Post by Bonnie lee on Feb 22nd, 2012 at 11:50am
Well, I started topamax on February 8th after seeing the dr at john Hopkins. I am up to 50 mg and will start 75 mg tomorrow. So far I have lost 12 pounds. I have had tingling in my arms and legs but it is tolerable. Each time I up e dose I go through 2 days of just wanting to sleep and then my body adjusts and I am just fine.
The best part is that there has been no hint of a headache!!!!! No shadows!!!!! No nothing!!!!! I am kind of happy with the weight loss. I need to lose about 60 pounds so that has been a great boost to my self esteem along with the headaches being gone!!!! Oh other side effect is that sodas or anything carbonated taste nasty!!!! If I put it in my mouth it gets spit right back out!!!! That's how nasty it is. Just had to share my little bit of happiness!!!! |
Title: Re: Topamax results so far Post by Imitrex4Breakfast on Feb 23rd, 2012 at 2:25am
IMO, if 50mg is preventing your headaches, then why increase the dosage of Topomax ? The higher the dose gets, the more "Zombie-like" you'll become. Many call it "DopeyMax" and for good reason. So, "If it aint broke, why fix it?"
Glad to hear it's helping you. |
Title: Re: Topamax results so far Post by Guiseppi on Feb 23rd, 2012 at 9:24am
That's great news Bonnie, always good to hear when someone puts beasty back in his hole. ;)
Joe |
Title: Re: Topamax results so far Post by JHK07 on Feb 24th, 2012 at 11:34am
I think I am on 50mg. That tingling may go away, it did for me. The only long term side effect I have had is being "colder" in the winter, so I put on an extra sweater or vest.
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Title: Re: Topamax results so far Post by Bonnie lee on Feb 24th, 2012 at 1:29pm
DOc wanted me to get up to 200 mg. but hey i didnt think of it that way!!!! I havent had any headaches on the 50mg. i am gonna call him and ask him if i really need to keep going up!!!
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Title: Re: Topamax results so far Post by Arde on Feb 24th, 2012 at 9:01pm
Have to agree with Imitrex4Breakfast on this one.
If it aint broke, don't fix it. |
Title: Re: Topamax results so far Post by 9thNerve on Feb 25th, 2012 at 2:40pm
I was on Topomax for many months. Helped with the headaches but then the neuropathy in hands and feet became unbearable! I have been off the Topomax for 2 weeks and still have some residual tingling and sensitivity in fingers (ie touching the computer scroll bar, paper).
Stick to the lowest dose you can tolerate with the benefit of decreasing headaches. Dosing should be split ie 25mg am /25mg pm because of half life. Yes, weight loss was a boost (and you will still get that benefit on the lowest dose you need to manage the headaches). I had to get off the Topomax because when I got off the Tegretol, the high dose of Topomax I was on was enhanced (the Tegretol suppressed the efficacy of the TOpomax). When I had a headache crisis and had to go in for IV infusions, I had a drug interaction from the combination of the meds and thats when I got the really severe neuorpathy. That was in December and my fingers still aren't normal. Just a note: I began a regimen of the B vits, Butterbur with feverfew,magnesium, folic acid. I think they may be helping with the CH's. I needed to see what my headaches would do with out any of the toxic meds. My head doesn't have that underlying 24/7 "2-6"pain chronic daily headache that I had while on all the meds. Still get the humdinger headache but thanx to all the tips on this Blog, I am getting better response with my rescue meds (taken at the same time) and the O2. |
Title: Re: Topamax results so far Post by Bonnie lee on Feb 25th, 2012 at 7:09pm
yes i have noticed since i have gone up to the the 75 mg the tingling has become worse. its tolerable but worse. Have been doing 25 mg in the am and 50mg pm. i havent taken tegretol. Only veramapil and the topamax. I am having such good results with the headaches that i am more than willing to put up with the tingling. It feels so good not to be worrying if a headache is coming at any moment. i am going to keep going with this unless something drastic happens.
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Title: Re: Topamax results so far Post by Matt Miller on Feb 28th, 2012 at 4:50pm
Bonnie,
I am in the same state you are in. The topamax has stopped my headaches in their tracks for the most part. I've been on it for a month so far, and I've only got a few shadows. the tingling hasn't gotten better for me, only worse, but I'd trade it for the beast ANY day! My Neuro put me back down to 50mg after it got really bad at 75mg and I wasn't getting headaches at 50mg. As others have said, if it ain't broke... The memory thing is really getting to me though. I feel like there is a glove over my brain or something, stopping the words from getting out. Congrats on PFD, they are gifts!! |
Title: Re: Topamax results so far Post by Bonnie lee on Feb 29th, 2012 at 11:49am
I havent had any problems with memory at all. just the tingling and the soda tasting like crap. And i love me some soda. i just went up to 100mg and i am stopping there. i just changed shifts at work and i thought for sure it would trigger the beast but so far so good. I agree PFD are so wonderful!!!! I so hope it lasts!!! I am glad it is working for you too!!!!
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Title: Re: Topamax results so far Post by Kristie on Mar 2nd, 2012 at 6:09pm
Yay Bonnie! What a relief you found something that works. When I was doing Lyrica the eventual goal was to get up to 200 mg a day. But I was doing fine with the 150 and saw no need to go up unless the Beast roared. While it's a different drug, I say don't go up on the dosage until your own body tells you to do so. At best, you might develop a resistance to it so I say the lowest you can keep it at (on any drug really), the better. I send you good vibes hoping you can hold it and get through this spell.
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Title: Re: Topamax results so far Post by Mike Bernardo on Mar 5th, 2012 at 1:16pm
I was on Topamax 50mg on my first cycle worked wonders. Then second cycle, had to use 75 mg. Third cycle I was doing 50mg AM, and 50mg PM. 4th cycle I was up to 200mg. This last cycle, I was banging 400mg plus verapamil, doing a couple sumavel shots a week, cambia, taking clonazapam, aspirin to manage my migraines, Red bull, O2, running, took prednisone, and nearly drove my car off the NJ Turnpike a few times. The beast is unpredictable, but what i can tell you is, when you find something that works, use it when it works, then stop. Don't think that "this works, so more will work more", because that's not the case. If 50 is working, then stick with 50, if you need more, then do more, but only if you need to. 400mg had me walking around like a zombie, and I was STILL in pain.
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Title: Re: Topamax results so far Post by Bonnie lee on Mar 5th, 2012 at 7:25pm
Thanks Mike. Will take that into consideration. I am on 50 in am and 50 in Pm. Doing okay so far so gonna keep it that way. I know what you mean about almost driving your car off the road almost done that a couple of times. Almost into a tree on purpose once. Tha pain was so bad i thought i would be better off. But something kept me going. I made it home and about crawled into the house. My son ran for the oxygen and the sumatriptan injection.
Dont know how i made it thorough that one. But i did. |
Title: Re: Topamax results so far Post by Mike Bernardo on Mar 6th, 2012 at 12:07pm
One foot in front of the other and you will make it out of the tunnel soon enough.
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