posted
I am wondering what experiences people have had with Topamax. It can be prescribed for neuropathic pain and migranes, and I have both. My insurance company will not approve Lyrica, and Neurontin was not a good fit for me.
If you've taken it, please let me know the good, bad and ugly regarding this med.
-------------------- Mountaingirl
"What lies behind us and what lies before us are tiny matters compared to what lies within us." ~ Ralph Waldo Emerson Posts: 138 | From West Virginia | Registered: Sep 2007
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posted
My daughter has tried most of the antisiezure meds for haedache--she has an intractible headache.
Topamax did not work for her. Lyrica and Neurontin did not work for her headache either. Neurontin helps some with her anxiety issues. Cymbalta seemed to work for her headache, but she got drug induced hepatitis because she was also on diflucan and xanex, so her psychiatrist thinks she shouldn't take it any more.
She currently wears a duragesic patch and takes zanaflex for her headache.
Topamax does seem to work for some. This is just a report of our experience and not a recommendation.
Can your doctor give you some samples to try? We had samples of Lyrica and she had a bad reaction so we didn't need to buy a perscription of it.
Posts: 177 | From God's Grace | Registered: Apr 2007
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
My daughter used it for about a year before she was diagnosed.
It seemed to work pretty well during that time, but as her disease got worse, it lost it's effectiveness.
It's worth a try. It's one you have to work up to.
Posts: 2903 | From AZ | Registered: Feb 2006
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I'm in a unique situation--I have severe unrelenting Headaches, Neuropathy pain (diagnosed as Chronic Inflammatory Demeylinating Polyneuropathy), and I also have Grand Mal and Partial seizures.
Many of the medications I am prescribed for each of those conditions can be used for all of those conditions.
In the beginning I found that Topamax did help decrease my headaches. Rated on a pain scale (1-10, 10 being the worst) I rated my headaches at 10-10+ before the use of Topamax. Once I began Topamax, I had some days where the headaches were between 5-7. Which, if you have unrelenting headaches, you know that is a huge deal.
Unfortunately it didn't last. I am now up to 600mg of Topamax!! (Started at around 100 or 200?) My Neurologist continues to increase it, hoping I will have the results I did last time, but I don't.
It also causes a bit of weight loss, and is hard on the kidneys (causes kidney stones)---So, I am going to stop it soon, since for me (now) the risks are outweighing the benefits.
I have also tried Lyrica and Neurontin--they were not helpful for me. Lyrica gave me a terrible allergic reaction and Neurontin didn't work.
Maybe look away from the anti-seizure medications? What about Methadone? Or the Fentanyl patches? Both have been very helpful for my headaches recently.
I hope you find a solution. Take care!
Posts: 371 | From CT | Registered: Jun 2008
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posted
Thanks for the feed back. I know this medicine has bad side effects, but it can be a life saver.
-------------------- Mountaingirl
"What lies behind us and what lies before us are tiny matters compared to what lies within us." ~ Ralph Waldo Emerson Posts: 138 | From West Virginia | Registered: Sep 2007
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Dawnee
Unregistered
posted
Okay...I was on Topamax for 2 months just before being diagnosed with Lyme.
The good news...I wasn't hungry, lost a little weight (well that was good news for ME anyways)
The bad news... I lost the ability to sweat, it caused a severe tremor in my right hand (not sure if it was the Topamax or if it just brought out worse Lyme symptoms).
It also made my eye start jerking by itself to where I literally saw two different things at the exact same time...like a camelion. Freaked me the heck out..but only lasted a few seconds and didn't happen again.
It got to where I could not talk sometimes without my hand feeling like it was a huuuuge balloon hand and if I was holding anything in that hand it felt teeny tiny. My hand LOOKED fine, but I felt like it was gigantic and not real. And my head would feel "high" and disconnected. That would last for several minutes, a couple times a week. A little scary. I got very violent tingling in my whole body that was way worse when I was laying down. Then the muscle twitches started. BTW..when I told my neuro about all of this..I was told Topamax can not cause these symptoms (it absolutely can..even says so on the Topamax info) and I was told to see a shrink.
I think it actually helped bring out my worst Lyme and Co symptoms (that and the stress of the first neuro I saw...grr) But I can't tell you exactly what was caused by Lyme and what was caused by the Topamax. I think the eye diploplia, huge hand feeling and violent tingling were def. caused by the Topamax because it hasn't happened since I stopped taking it.
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posted
I've been on Topamax since April and got up to 75 mgs. My experience with it is that unless you take care of the underlying Lyme, it is not going to help. It did seem to help me, but then I had a Lyme flare up and it did no good at all. Now I am on antibiotics and my headaches have improved and I am tapering down and am at 25 mgs and will go off of it completely. No hurt in trying it, it does help some but make sure you address the REAL problem, or it won't do the trick.
Posts: 144 | From Connecticut | Registered: Sep 2006
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"What lies behind us and what lies before us are tiny matters compared to what lies within us." ~ Ralph Waldo Emerson Posts: 138 | From West Virginia | Registered: Sep 2007
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posted
MTGirl - Also wanted to mention that as far as side effects, they are definitely something you need to outweigh as far as benefits. I had a severe worsening of PMS symptoms (anger, outrageous outbursts etc... to the point where my husband tried to hide my pills) and my neuro had to give me a sedative to counteract the mood swings. I know others who complain of the same thing with this drug so be prepared. The fogginess pretty much went away after two weeks of starting any new dosage and the mood swings also improved. It's the initial period of starting any new dose that's bad. I had NO symptoms until I went up past 25 mg's and tirated up by a half pill at a time (12.5) once a week or sometimes longer, whenever I felt ready. Good luck to you.
Posts: 144 | From Connecticut | Registered: Sep 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
I take 200mg a day for migraine preventative, for the past couple of years.
Started working a lot better after treating babesia duncani, which I was a year into treatment before discovering. (Duh.) Still, I get a lot more headaches without it.
I haven't had any dramatic weight loss on it, but didn't need to lose any, either.
I would ask for 25mg pills and ramp up only very slowly to minimize any side effects.
You may find it increases word-finding difficulties and "lyme-brain." Personally, I prefer that to migraines. :-) The effect seems to decrease over time, so hang with it and give yourself time to adjust to it.
It's pricy as all get-out so I'm glad insurance is kicking in!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
I have been getting treated for Lyme and Coinfections for 8 years now, I am 22.
I started topamax about 3 years ago and it's worked better than anything else for headaches and partial complex seizures. I tried neurontin and had some scary stuff go through my head, and the other drugs didn't work. I'm on 100mg at night, and can't do more or less w/o symptoms or side effects occurring. But since I started it I slept better, barely have headaches anymore (except for sudden flare in the last two weeks or so) and got much quicker in processing and motor skills. That was just my experience, definitely talk to your doctor about your own situation and possible side effects, etc, before you decide if you want to take it.
-------------------- ~~~Lishka~~~ Posts: 18 | From Pacific NW | Registered: Aug 2008
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posted
I'm on topamax, and I've been losing weight. It does help with my pain a little bit. I'm on other pain aids too, so it's hard to tell how much it helps.
I hope I don't get kidney stones! What should we do to prevent that? I do drink a lot of water.
Another question I have: I'm getting well, and was normally thin before getting lyme disease. So, when I get well, and the topamax is stopped, will I gain weight again? Or stay with my original weight? What does past experience show about this?
Believe me, I'm starting pilates as quickly as possible. In my condition, that is a slow undertaking. I'm very deconditioned.
It's a challenge to dress nice when my size changes constantly. I had to give all my big clothes away--I was swimming in them.(I've lost 40 pounds since treatment started.)
I'm trying to buy stretchy things that will fit at least a couple of sizes. I know this sounds like a frivolous subject to bring up, but clothes can be expensive, and I need to wear something!
Guess I added more questions than answers, didn't I? Posts: 563 | From New Mexico, USA | Registered: May 2007
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Yes! Wordfinding difficulties! I forgot about that.
It's hard to say if it was Topomax or the undiagnosed bartonella, but I remember my daughter stopping the medication due to the verbal issue.
They said she would lose weight, but she didn't.
In fact, due to the bartonella, she gained 90lbs in four months.
She has since lost over 80 of that.
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
I was on Topamax for a couple of months for worsening migraines. It worked so well for me---I was thrilled.
Now for the bad news (and scary)...when my new llmd heard I was on Topamax she told me she has recently been telling all her patients to be aware that it can cause sudden blindness.
I weaned myself off after she told me that---I'm waiting to see my pcp to find an alternative.
I searched online to find more info on this side effect and found warnings that said "headache is usually the first sign of potential blindness when on Topamax and you should see a doctor immediately."
How is a patient supposed to separate the headaches they are taking this med for from the headaches that precede blindness???
So sorry to scare everyone, but felt I had to pass this along.
Posts: 345 | From East Coast | Registered: Apr 2008
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posted
I took it awhile back when I was suffering from daily headaches. It didn't work though
Posts: 370 | From NJ | Registered: Dec 2007
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posted
Whoa! Sudden blindness. That's the last thing I need.
-------------------- Mountaingirl
"What lies behind us and what lies before us are tiny matters compared to what lies within us." ~ Ralph Waldo Emerson Posts: 138 | From West Virginia | Registered: Sep 2007
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