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Old 07-20-2006, 07:07 AM   #1
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MarissaC8 HB User
Topamax

Have any of you been put on Topamax for pain? Thankfully this is the first time I have had to use pain meds for my MS, but since they are easing me into it...it must me a strong med. I don't want to be a veggie either. What do you know about this drug for MS pain?

 
Old 07-20-2006, 07:44 AM   #2
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farleyts HB User
Re: Topamax

Topamax is a medication to help prevent migraines, so prescribing for MS pain must be an off-label use and I couldn't find any information on using for pain. Side effects include numbness and tingling, fatigue, loss of memory and concentration, but they usually occur early in treatment and subside somewhat. The manufacturer recommends starting with a small dose and increasing gradually.

 
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Old 07-20-2006, 01:20 PM   #3
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Re: Topamax

Hi,

I also have ms. I have secondary progressive and have seizures with mine....yay!!

My doc has me on Topamax for the seizures. It doesn't help my pain at all. I've never heard of using it for that. Migraines yes, pain no. I've been on it for about 3 years and have not noticed any negative side effects. Good luck with it....I hope it helps you. My husband is also on it for his Bipolar Disorder and hasn't noticed anything negative. Let us know. I'm intrigued

 
Old 07-20-2006, 01:41 PM   #4
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Re: Topamax

Hi gottabeme777,

I have not found anything showing this will do anything for the pain. I will be on it for 10days before I even get to the dose she wants me on. Once I am there, I will be on it for another 5 days and then she wants to see how I am doing. I will let you know how it goes. Last night was the first pill, I still took 3 asprin today for the pain and one motrin last night. Not working yet.

 
Old 07-20-2006, 02:58 PM   #5
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Re: Topamax

I did a little more research and did find one reference to off label use for nerve pain. It's primary uses are for migraine prevention and as an anti-seizure medication, but off label uses include bipolar, depression, weight loss, and nerve pain. Interesting!!

 
Old 07-21-2006, 07:55 AM   #6
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MarissaC8 HB User
Re: Topamax

Very Interesting. Thanks for the help. I was beinging to think My neuro was crazy. So far, I don't notice a change at all, but this it by far the worst relapse I have ever had. I have had numbness, vision problems, and more, but never pain. I will keep you posted as the dose goes up as how it is working.

 
Old 07-22-2006, 12:16 PM   #7
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Re: Topamax

I was on Topamax for nerve pain in my right arm. It worked wonderfully! Within about 7-9 days once I was up to about half the dose the neuro wanted me on, I had no pain in my arm any longer AND no headaches - didn't realize how often I was having headaches until I didn't have them anymore. I think it also helped stabilize my mood - I was still reeling from the diagnosis when I went on it and it seemed to even things out for me. I did initially have the tingling in my hands, feet and face but that went away. I just weaned off the Topamax about 4 weeks ago because I was one of the unfortunate few who had hair loss with it. Initially the neuro blamed the Rebif but once I started tapering off the Topamax (my own experiment), the hair loss completely subsided, so now my neuro agrees it was the Topamax all along. Amazingly, the arm pain never returned, although the headaches have Hope it works well for you!

 
Old 07-24-2006, 09:17 PM   #8
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Unhappy Re: Topamax

OK, so today I bumped up to two pills. And I don't know what they are trying to do to me. But I was uncomfortable today, but wow. Now, it is after midnight and I am really uncomfortable. My whole body is feels hot from my legs to my shoulders, my lft eye is twitching, my whole body feels like it is on fire, yet cool to the touch, and I am still in extreme pain. All of this got much worse about one and a half to two hours after I took the pills. Do you think they are related? Should I call the doctor tomorrow? I don't know. This is weird I think.

 
Old 07-25-2006, 08:04 AM   #9
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NataliesMom HB User
Re: Topamax

I've been on Topamax for over a year now and I love it. I was put on it to help control the "ice pick" headaches the we MSer's tend to get. It really helps. I'm up to 100mg twice a day, morning and bedtime. I have hairloss with it, but I've got pretty thick hair so I'm just dealing with it because I don't want the headaches to return, they were horrible. Also I've lost a bit of weight too, so that was an added bonus. I had a few side effects at first, but they've dissipated over the time I've been on the Topamax.

I hope you have good results with it. It is a great drug IMO.


 
Old 07-27-2006, 09:08 PM   #10
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DogMom22 HB User
Re: Topamax

Hi - I normally read and post on the Pain Management Board but am currently undergoing the process to either rule in or out MS. I take topamax for both migraines and daily headaches and undiagnoses fairly severe pain in my lower back. Topamax was first approved as an anti-seizure med, then later the FDA approved it for migraine as a prevenative. It then has an off-label use for treating chronic pain - more specifically nerve pain. For me the side-effects are very hard to tolerate so I take a low dose - I am not even at the recommended amount for migraine but it has completely stopped my daily headaches and has my migraines down to 2 a month from 8 to 12. As for my back pain it has worked wonders. It takes several weeks to work (build up in your system and you need to tirate up to your target dose becuase of the side effects - some people have no trouble, others have great trouble. This drug is in the same class as neurontin and Lyrica (hope I spelled those correctly) - they are both anti-seizure mdes but are commonly used to treat chronic pain. Neurontin is a much older and proven medication and has a high incidence of weight gain (not every one gains weight on it), Lyrica I think might be fairly new (but I am not really sure) - it also has weight gain as a side effect (the weight gain comes from your brain chemistry changing and you crabing carbs and eating beyond behing full, not that they slow your metabolism down.) Topamax is much newer, is considered fairly safe and has a side effect of weight loss in most (but not all people who take it). The drug manufacturer of Topamax says this side effect of weight loss is a defect and not something they did on purpose. For me on topamax I have to make myself eat something every day as I rarely get hungry and when food is in front of me I ussually don't feel much like eating and I have lost quite a bit of weight as a result (which was good for me). I would recommend you go do some research on topamax (go to the Pain Management board and do a search) - see what the other side effects are, talk to your doc - I would say it is worth a try if you are in chronic debilitating pain that the docs don't think they can fix.

 
Old 07-27-2006, 10:40 PM   #11
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Re: Topamax

Hi I have been prescribed Tapamax before for back pain. They tend to prescribe it for people who have epilepse or for people who have nerve problems. The medication just made my hands shakey and tingly feeling all day. They never ended up working so I just went off of it.

 
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