Aa
Been living with MS a loooong time
Just found this sight and was wondering - my neurologist has tried every MS drug out there for over 20 years on me. Lucky me - I have bad reactions or they don't work etc etc etc. So am trying to live with the pain, the fatigue etc.
In Feb he started me on Topomax. I have been thinking I was going into a bad relapse with major fatigue and mamory problems when I happened to stumble on a site mentioning topomax. Has anyone here been on it? Am curious if perhaps the drug is causing the symptoms rathe rthan the MS?
Thanks.
MSLady1
I'm glad you found this forum, and am looking forward into getting to know you.
I took Topamax a couple of years ago before my MS diagnosis for migraines and didn't tolerate it very well. I never even got used to the initial dosage before I was supposed to titrate up! I was falling asleep during my conference time at school and drool was dripping out of the side of mouth--I swear! I couldn't think at all, even after giving it a month shot on the lowest dosage.
When I told my present neuro about my reaction to this drug, he laughed, and said that he had already nicknamed this drug is "Stupamax."
I really don't know what's out there that's good for pain, but I do know that the Provigil I've been prescribed for fatigue is helping.
My best,
Deb
I took Topamax a couple of years ago before my MS diagnosis for migraines and didn't tolerate it very well. I never even got used to the initial dosage before I was supposed to titrate up! I was falling asleep during my conference time at school and drool was dripping out of the side of mouth--I swear! I couldn't think at all, even after giving it a month shot on the lowest dosage.
When I told my present neuro about my reaction to this drug, he laughed, and said that he had already nicknamed this drug is "Stupamax."
I really don't know what's out there that's good for pain, but I do know that the Provigil I've been prescribed for fatigue is helping.
My best,
Deb
Hey, Lady! Welcome. I'm glad you found us. Feel free to ask anything you can think of here, and I'm sure you have lots to share, having been diagnosed for so long. I hope we can make you feel comfortable.
I have been taking Topamax for a few years now at varying doses. The important thing for the doc prescribing it is to titrate up VERY gradually. My first doc increased my dose by 100 mg. each week and it was murder. I could barely think. He took me off for a while because I complained of the side effects. Then he tried it again, going up incrementally by 25 mg per week to 400 mg. That was SOOO much easier.
But, that's a lot of Topamax. My last doctor brought me down to 100 mg daily (50 mg twice a day), the same dosage that my 15 yr. old son takes for his migraines (that is the reason I take it). I am doing just fine on it.
It's sort of an odd choice I think, for MS symptoms, being that some of the side effects can be tingling (if you titrate too quickly) and cognitive deficit. But, it seems your doc has run out of options, perhaps. Have you asked your PCP about any other ideas? Do you like your neurologist? Maybe it's time to move on to someone with a fresh look.
I hope you feel well,
Momzilla*
I have been taking Topamax for a few years now at varying doses. The important thing for the doc prescribing it is to titrate up VERY gradually. My first doc increased my dose by 100 mg. each week and it was murder. I could barely think. He took me off for a while because I complained of the side effects. Then he tried it again, going up incrementally by 25 mg per week to 400 mg. That was SOOO much easier.
But, that's a lot of Topamax. My last doctor brought me down to 100 mg daily (50 mg twice a day), the same dosage that my 15 yr. old son takes for his migraines (that is the reason I take it). I am doing just fine on it.
It's sort of an odd choice I think, for MS symptoms, being that some of the side effects can be tingling (if you titrate too quickly) and cognitive deficit. But, it seems your doc has run out of options, perhaps. Have you asked your PCP about any other ideas? Do you like your neurologist? Maybe it's time to move on to someone with a fresh look.
I hope you feel well,
Momzilla*
Thanks for the advice.
Yes, have been on tegretol. Didn't take care of the pain. Just recently came off morphine. This was my last resort before going back on the morphine.
I won't be up to full dosage on the topomax until the end of April , and I will see the neurologist again at the MS clinic in early May, so another month to hang on. I can see why it is nicknamed dopamine. I will research it some more and give it some serious thought. However, to be fair to my neurologist I will stick it out until I see him in May - and then say yea or nay. He has tried so hard to find something for me - rather than narcotics. For me it has been over 20 years of trying so many different drugs that I have forgotten most of their names, some I had to be hospitalized for, as so many were experimental at the time.
So far, I would say no it is not doing much for the pain - but the Dr said to give it until I saw him again before I quit taking it. He knows me too well. I would like to quit it right now! However, his intervention saved me from brain surgery this last December so I should do as he says. The other Doctors wanted to send me away for brain surgery as they felt my largest MS lesion had enlarged and was suspicious of a brain tumour. When I contacted my MS neurologist of out sheer terror he intervened for me and put a stop to the surgery and proved to them that the MRI was not showing a brain tumour. So I'm thinking he's a pretty good Dr., and even if this drug isn't for me I should give it a shot for his sake. I can say no in May. Then go back to square one - been there done that lots of times... but thanks so much for the advice and the welcome!
As everyone here knows - this is one frustrating part of our life to deal with.
Yes, have been on tegretol. Didn't take care of the pain. Just recently came off morphine. This was my last resort before going back on the morphine.
I won't be up to full dosage on the topomax until the end of April , and I will see the neurologist again at the MS clinic in early May, so another month to hang on. I can see why it is nicknamed dopamine. I will research it some more and give it some serious thought. However, to be fair to my neurologist I will stick it out until I see him in May - and then say yea or nay. He has tried so hard to find something for me - rather than narcotics. For me it has been over 20 years of trying so many different drugs that I have forgotten most of their names, some I had to be hospitalized for, as so many were experimental at the time.
So far, I would say no it is not doing much for the pain - but the Dr said to give it until I saw him again before I quit taking it. He knows me too well. I would like to quit it right now! However, his intervention saved me from brain surgery this last December so I should do as he says. The other Doctors wanted to send me away for brain surgery as they felt my largest MS lesion had enlarged and was suspicious of a brain tumour. When I contacted my MS neurologist of out sheer terror he intervened for me and put a stop to the surgery and proved to them that the MRI was not showing a brain tumour. So I'm thinking he's a pretty good Dr., and even if this drug isn't for me I should give it a shot for his sake. I can say no in May. Then go back to square one - been there done that lots of times... but thanks so much for the advice and the welcome!
As everyone here knows - this is one frustrating part of our life to deal with.
Hi there and welcome to our forum!
I was on Topamax for pain from my Paratrigeminal Neuralgia along with Tegretol. It didn't help with the pain for me and the side effects were awful! I felt droopy and tired and couldn't function well on a daily basis.
Has your dr. tried Tegretol or Neurontin? They had less symptoms for me but I wouldn't go back on the Topamax unless it really helped with the pain. Is it helping with your pain?
I hope that they can find something to help you...I am having difficulty with pain and meds myself right now. Has your doctor tried Lyrica? Some people have wonderful results with it...unfortunately it wasn't me but it might work for you!
Best of Luck,
Rena
I was on Topamax for pain from my Paratrigeminal Neuralgia along with Tegretol. It didn't help with the pain for me and the side effects were awful! I felt droopy and tired and couldn't function well on a daily basis.
Has your dr. tried Tegretol or Neurontin? They had less symptoms for me but I wouldn't go back on the Topamax unless it really helped with the pain. Is it helping with your pain?
I hope that they can find something to help you...I am having difficulty with pain and meds myself right now. Has your doctor tried Lyrica? Some people have wonderful results with it...unfortunately it wasn't me but it might work for you!
Best of Luck,
Rena
Topamax is known for a variety of side-effects. Memory problems is one of them. In some circles the drug has the nick-name "dopamax" because it tends to slow a person down cognitively.
With regards to fatigue, the manufacturer indicates that fatigue might be a side-effect early on in the treatment. Here's a link to the company's website page that discusses the side-effects: http://www.topamax.com/topamax/how-topamax-may-help--what-to-expect.html
Perhaps a visit to your PCP or a phone call to your neurologist is in order. Normally when a doc starts you on a new Rx, a follow-up appointment is recommended a couple weeks or a month afterwards. If your doctor didn't suggest it, you should book the follow-up yourself so that you can find out if what you're experiencing is Rx or MS related.
With regards to fatigue, the manufacturer indicates that fatigue might be a side-effect early on in the treatment. Here's a link to the company's website page that discusses the side-effects: http://www.topamax.com/topamax/how-topamax-may-help--what-to-expect.html
Perhaps a visit to your PCP or a phone call to your neurologist is in order. Normally when a doc starts you on a new Rx, a follow-up appointment is recommended a couple weeks or a month afterwards. If your doctor didn't suggest it, you should book the follow-up yourself so that you can find out if what you're experiencing is Rx or MS related.
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