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Have you tried Topamax?
I've never tried Topamax and I was wondering what other peoples' experiences have been like, if they have tried it and all. I just read some information on the FMS forum that not only is it helpful for migraines, but they're finding that it helps with FMS, too. I'm more interested in the migraine help with it myself. I have an appointment with the neurologist coming up soon, so I would like to know what others think about Topamax and if it works. Is it a preventative or is it for acute migraines?
Hi tia1977,
I use it and it has helped me to a degree. Although it didn't help reduce my acute migraine headache attacks to under 15+ a month (so, they're still classified as chronic migraines), I believe that the Topamax did stop the daily chronic headache that I used to have for many years.
Just like Tracy (rudyhorse) said, it takes a while to get up to the proper dosage. According to the clinical trials for topamax use for migraine headaches, 100mg is the standard dose for preventative migraine relief (although like Tracy pointed out, different people sometimes get put on different doses depending on their own situation)... but 100mg can take a few weeks or even a few months to get up to. For me, I believe it took about a month, although I started topamax over a year ago so I have to admit... I sort of forget how long it actually took!
What I do remember is that I started at 25mg and stayed on that dose I think for either a week or a few weeks, maybe two weeks? And, worked my way up to 100mg on that same schedule... so, it took me a month at the shortest to get up to 100mg and maybe three months at the longest to get up to 100mg... I wish I could remember and tell you exactly what my titrating schedule was in my situation... but it's just too long ago now to remember.
But, all I know is that I had to first get to 100mg before I saw any improvement and it took a little while after getting to 100mg before I saw improvement. Although I can tell you that I absolutely know for sure that after awhile of taking the 100mg dose, I started to see an improvement with my daily chronic headache, not the acute attacks but my daily chronic headache improved and now I have lots of pain free moments! So, still no improvement with the amount of acute migraine attacks even after a whole year of taking the stuff, but no more daily chronic headache so that is a HUGE improvement in my life. :)
Hope that helps.
- marilee
I use it and it has helped me to a degree. Although it didn't help reduce my acute migraine headache attacks to under 15+ a month (so, they're still classified as chronic migraines), I believe that the Topamax did stop the daily chronic headache that I used to have for many years.
Just like Tracy (rudyhorse) said, it takes a while to get up to the proper dosage. According to the clinical trials for topamax use for migraine headaches, 100mg is the standard dose for preventative migraine relief (although like Tracy pointed out, different people sometimes get put on different doses depending on their own situation)... but 100mg can take a few weeks or even a few months to get up to. For me, I believe it took about a month, although I started topamax over a year ago so I have to admit... I sort of forget how long it actually took!
What I do remember is that I started at 25mg and stayed on that dose I think for either a week or a few weeks, maybe two weeks? And, worked my way up to 100mg on that same schedule... so, it took me a month at the shortest to get up to 100mg and maybe three months at the longest to get up to 100mg... I wish I could remember and tell you exactly what my titrating schedule was in my situation... but it's just too long ago now to remember.
But, all I know is that I had to first get to 100mg before I saw any improvement and it took a little while after getting to 100mg before I saw improvement. Although I can tell you that I absolutely know for sure that after awhile of taking the 100mg dose, I started to see an improvement with my daily chronic headache, not the acute attacks but my daily chronic headache improved and now I have lots of pain free moments! So, still no improvement with the amount of acute migraine attacks even after a whole year of taking the stuff, but no more daily chronic headache so that is a HUGE improvement in my life. :)
Hope that helps.
- marilee
I took it for a year or so. Not that it takes that long but if I remember it does take time to get to a dosage that would be effective for each individual. Some people can use 25mg others it takes 150mg or so. If it works for you that would be great. My friend uses it with great results.
Hope that might help a little.
Tracy
Hope that might help a little.
Tracy
Could any of you that tried it (and it actually worked for you) tell me how long you had to take it before it started to work? I'm seeing the neur again this Friday and that's at the top of my list that I want to talk about.
Yes, I tried topomax. It didn't help my migraines. It did make me shaky and nervous and my mom and supervisor at the time noticed a change in the sound my voice while I was taking it- I believe it went higher. The doctor had mentioned how losing weight was something that often could happen with that drug and many found that a nice side effect. Anyway, I went off the drug.
I love that cat, kept forgetting to tell you.
But on to Topamax, I couldn't stand the tingling and pins/needles that were in my feet, so I had to walk all the time or I went crazier than I am. LOL
Others have had good success with it. Keep us posted
Tracy
But on to Topamax, I couldn't stand the tingling and pins/needles that were in my feet, so I had to walk all the time or I went crazier than I am. LOL
Others have had good success with it. Keep us posted
Tracy
We are currently at the Michigan Head-Pain & Neurological Center, my husband has had chronic daily migraines and clusters for 9 months non-stop. We'll see what they come up with.
Thank you for responding to my question. I haven't tried Topamax yet, but I'm considering asking my neurologist about it. It would be nice if something would work to calm down the daily headaches and the intensity and rate of these migraines as well. I had to know what to expect from this medication before asking. The preventatives I'm taking right now just aren't doing it.
Ohhh yeah... the bad metallic taste... I forgot about that side-effect! I had that too but only for a few weeks when I first started and then it went away. A friend of mine who takes it also says that it "makes food taste bad"... so, not a metallic taste in her mouth, just that it makes some foods taste bad. Actually, that was more like the side-effect that I had... it made a lot of foods taste sort of metallic-y in my case, it wasn't like a metallic-y taste all the time, it was more like it made other things taste metallic, it was weird... but then that went away after a few weeks. My friend who has the same side-effect still has that side-effect though. So, I guess it's one of those side-effects that can maybe go away or maybe stick around... sort of like how the tingling can go away after a few weeks, but for some people the tingling sticks around too. I'd totally forgotten about the metallic taste thing and the food tasting weird thing because in my case the side-effect went away after a few weeks, but I guess it was still a side-effect none-the-less!! I'm glad you brought that up!!!
Be careful with Topamax. I took it sucessfully for a couple years and the side effect that I had was a bad metallic taste in my mouth. I also lost about 10 pounds, which was the good news.My husband has chronic migraines and was prescribed Topamax as a preventative. He quickly developed acute pancreatitis and was hospitalized.
The doctors said that the pacreatitis was a rare side effect but we've talked to several people that have had the same reaction.
The doctors said that the pacreatitis was a rare side effect but we've talked to several people that have had the same reaction.
Hi FurballsMom!
I take topamax! It is not for acute migraines at all, but it is a preventative!! You take it daily... I take mine once a day but sometimes people will split the dose up so that they take it a couple of times a day. I take it to prevent my migraines.
A friend of mine has really bad neuropathy and she takes topamax to prevent the neuropathy pain. I think that topamax is used to prevent a LOT of types of chronic pain so it would make sense that it would help to prevent FMS pain too! My friend who uses it to prevent her neuropathy pain... well, she would not be able to function at all without the topamax. The topamax gave her her life back. She still has pain and still needs to use strong pain medications for break-through pain but... without the topamax she would be completely disabled and would not be able to walk or use her hands at all. On the topamax she lives a very normal life! So, I think it is a very useful medication for chronic pain.
For my chronic migraines, though, it did not bring them down to under 15+ migraines a month. So, my neurologist has also put me on a Beta Blocker and did Botox shots for me as well. So, topamax alone was not the only answer for me. But, I do believe that topamax has prevented the chronic daily headache I used to have. I do not have a chronic daily headache anymore, I used to have a non-stop headache and now, on the topamax, I have many pain-free moments and I only have to deal with a LOT of acute migraines, usually at least one migraine a day still. So, I can't really say if the topamax has helped with my chronic migraines or not... but, I believe it can be a very useful medication for preventing chronic pain.
As for side-effects...
The only side-effect I have noticed is tingling in my hands, like a pins and needles feeling. This side-effect is supposed to go away after a couple weeks or sometimes a few months after treatment. All of the neurologists and all of the literature I have read all have said the same thing about this side effect... if you experience it, it is actually a good sign! It means that you have a better chance of responding to the treatment... so, if you experiencing the pins and needles in your hands (and maybe feet too) don't worry, even though it feels like a bad and annoying side-effect, it is actually a good side-effect because it means that you are one of the people who the topamax is more likely to work for. So, try to wait out the side-effect if possible, because it should wear off... if the tingling is too intrusive, obviously you will have to stop taking the medication... but if you can wait it out, that would be better.
My friend who I mentioned earlier, she got kidney stones because of the topamax. This is one of the serious side-effects that topamax can cause, but it is a rare side-effect that only happens in some people. It can be avoided by most people as long as you drink and ENTIRE glass of water with every topamax pill you take. This is extremely important... never take topamax without water!!! But, for a very small number of people topamax can still cause kidney stones, which are extremely painful. My friend stayed on the topamax because without it she would be completely disabled and no other medication works for her... the kidney stones are something she would rather deal with than be completely physically disabled, but her situation is very severe and if I got kidney stones I would personally cease the medication. Although, most people don't get kidney stones. Anyway, just drink lots of water and you should be fine.... but if you happen to have kidney disease, mention this to your neurologist because then it is possible that topamax isn't the best choice, otherwise it should be fine.
Oh, and if your eye sight goes REALLY funny at all after you first take the medication (like you go completely blind), don't take another pill and call your neurologist right away and then also call 911 right away too. This means you are having an allergic reaction to the medication, it is also extremely rare, but losing your eye sight is how you can tell if you are allergic to the medication and then you need to let your neurologist and emergency know right away. If you don't have this reaction after the first few pills, or immediately after adjusting the dose, then you are not allergic to the medication and you should never have a bad reaction to the medication in the future.
None of the bad side effects have ever happened to me and the kidney stone thing is the worst sort of side-effect that happened to anyone I know.
I take 100mg. That is the standard dose for migraines. Some people will take lower dosages than this for migraines and some people will take higher dosages then this for migraines... but most people take around 100mg. It usually takes a couple weeks to work your way up to 100mg. A neurologist will usually start a patient on 25mg of topamax at first, and since that is such a low dose you probably won't notice a difference in your migraines until you work your way up to a slightly higher dose.
Hope all that information helps. Let us know how your neurologist appointment goes! :)
I take topamax! It is not for acute migraines at all, but it is a preventative!! You take it daily... I take mine once a day but sometimes people will split the dose up so that they take it a couple of times a day. I take it to prevent my migraines.
A friend of mine has really bad neuropathy and she takes topamax to prevent the neuropathy pain. I think that topamax is used to prevent a LOT of types of chronic pain so it would make sense that it would help to prevent FMS pain too! My friend who uses it to prevent her neuropathy pain... well, she would not be able to function at all without the topamax. The topamax gave her her life back. She still has pain and still needs to use strong pain medications for break-through pain but... without the topamax she would be completely disabled and would not be able to walk or use her hands at all. On the topamax she lives a very normal life! So, I think it is a very useful medication for chronic pain.
For my chronic migraines, though, it did not bring them down to under 15+ migraines a month. So, my neurologist has also put me on a Beta Blocker and did Botox shots for me as well. So, topamax alone was not the only answer for me. But, I do believe that topamax has prevented the chronic daily headache I used to have. I do not have a chronic daily headache anymore, I used to have a non-stop headache and now, on the topamax, I have many pain-free moments and I only have to deal with a LOT of acute migraines, usually at least one migraine a day still. So, I can't really say if the topamax has helped with my chronic migraines or not... but, I believe it can be a very useful medication for preventing chronic pain.
As for side-effects...
The only side-effect I have noticed is tingling in my hands, like a pins and needles feeling. This side-effect is supposed to go away after a couple weeks or sometimes a few months after treatment. All of the neurologists and all of the literature I have read all have said the same thing about this side effect... if you experience it, it is actually a good sign! It means that you have a better chance of responding to the treatment... so, if you experiencing the pins and needles in your hands (and maybe feet too) don't worry, even though it feels like a bad and annoying side-effect, it is actually a good side-effect because it means that you are one of the people who the topamax is more likely to work for. So, try to wait out the side-effect if possible, because it should wear off... if the tingling is too intrusive, obviously you will have to stop taking the medication... but if you can wait it out, that would be better.
My friend who I mentioned earlier, she got kidney stones because of the topamax. This is one of the serious side-effects that topamax can cause, but it is a rare side-effect that only happens in some people. It can be avoided by most people as long as you drink and ENTIRE glass of water with every topamax pill you take. This is extremely important... never take topamax without water!!! But, for a very small number of people topamax can still cause kidney stones, which are extremely painful. My friend stayed on the topamax because without it she would be completely disabled and no other medication works for her... the kidney stones are something she would rather deal with than be completely physically disabled, but her situation is very severe and if I got kidney stones I would personally cease the medication. Although, most people don't get kidney stones. Anyway, just drink lots of water and you should be fine.... but if you happen to have kidney disease, mention this to your neurologist because then it is possible that topamax isn't the best choice, otherwise it should be fine.
Oh, and if your eye sight goes REALLY funny at all after you first take the medication (like you go completely blind), don't take another pill and call your neurologist right away and then also call 911 right away too. This means you are having an allergic reaction to the medication, it is also extremely rare, but losing your eye sight is how you can tell if you are allergic to the medication and then you need to let your neurologist and emergency know right away. If you don't have this reaction after the first few pills, or immediately after adjusting the dose, then you are not allergic to the medication and you should never have a bad reaction to the medication in the future.
None of the bad side effects have ever happened to me and the kidney stone thing is the worst sort of side-effect that happened to anyone I know.
I take 100mg. That is the standard dose for migraines. Some people will take lower dosages than this for migraines and some people will take higher dosages then this for migraines... but most people take around 100mg. It usually takes a couple weeks to work your way up to 100mg. A neurologist will usually start a patient on 25mg of topamax at first, and since that is such a low dose you probably won't notice a difference in your migraines until you work your way up to a slightly higher dose.
Hope all that information helps. Let us know how your neurologist appointment goes! :)
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