Topamax Users: Your Experiences Please!

[Christine]

My cousin was just given Topamax by her doctor. She suffers from chronic headaches along with very frequent migraines.

She is nervous about taking it. So, can you tell me if this medication has helped your migraines and what were your side effects.

She is starting at 25 mg at bedtime.

Thanks!

 

[luvwinnie]

I'm not on it YET (very wary of it), but that's because my neuro suggested I first try 200 mg daily of CoEnzymeQ10 and it has reduced my migraines. You might want to mention that to her.

 

[Christine]

I'm not on it YET (very wary of it), but that's because my neuro suggested I first try 200 mg daily of CoEnzymeQ10 and it has reduced my migraines. You might want to mention that to her.

Actually, her doctor told her to go out and get Magnesium, B2, and CoQ10. So she'll be doing that too.

 

[ericamanda01]

I just started taking it a few days ago for migraines based on how well it's worked for my mom and sister. It has changed their migraines in the best ways. They love it. My mom still gets them, but alot less than before and my sister has only gotten a few since starting Topomax. I am hopeful to have the same results. I have had chronic migraines for 17 years so anything that helps I am all for. As an added bonus one side effect is weight loss. And considering the last stuff I was on had a side effect of weight gain I am all for it.

 

[luvdzne]

I was given this for my migrains, and where I must say I did notice I was not getting as many, the side affects were too much for me. Topamax made me "stupid". I could not remember things nor could I comprehend simple things. I would get in the car and start out, then I wouldn't remember where I was going. I also had uncontrollable twitching, shaking, numbness. I had trouble filling out simple forms, because I wouldn't understand the questions. I stopped taking them and it all went away. To me the side effects were not worth it to me (I am super sensitive to drugs, so if there is a side effect, I usually get it ). Do a search for topamax side effects.

 

[Christine]

Do a search for topamax side effects.

Yeah, we did. It said you will feel "dumber than a box of rocks."

 

[luvdzne]

Yeah, we did. It said you will feel "dumber than a box of rocks."

Yep, that's how I felt.

 

[Christine]

Yep, that's how I felt.

There is a website called CrazyMeds and it is really funny. Gives you all the info in layman's terms, uses some off color language here and there, and is really quite comical. It also said that while taking Topamax, carbonated beverages will taste like *butt* (but they used a better word).

 

[Jennasis]

Funny, there was just a big thread a few days ago on Topamax. I'll chime in on it again though. I've been on it since October, but I'm actually going to my nuero this Thursday sicne it seems the Topamax has decided to quit working. For about two months (the end of Nov, ALL of December and most of Jan it was terrific), but now I am back to CHRONIC DAILY misery. I have Axert for "rescue", but when you wake up with a headache and have them all day every day, when exactly do you take a rescue med? It's just awful.

YES, carbonated beverages will begin to taste like "butt" on Topamax, as warned by my nuero, and I did have tingling in my toes and finers which eventually went away. And YES it made me stupid (spelling, remembering names) I feel like I have alzheimers. If the dang drug actually worked I could live with the side effects. Since it doesn't work I don't believe my headaches are migraines at all. I have had an MRI and it was clean. I will likely try a chiro and an endocrinologist next (A pain specialist told me that headaches like I describe are often hormonal.).

 

[beckmrk04]

I take 25 mg of Topamax in the AM and 25 mg before bed, and while it doesn't make me dumb to the point of not being able to function- I do feel a bit slower than my usual quick and witty self. BUT- it has helped my migraines and headaches sooo much!!! THAT is worth it to me, because having headaches all the time, I wasn't functioning very well anyway.

When I first started taking it I got a weird tingly sensation in my toes- but it has gone away. And it makes me tired- i have to drag my butt out of bed some days. Others- I'm just fine. I don't have the issue with soda that some people have. Tastes fine to me.

All in all, I don't love that it makes me feel so tired, but it's a small price to pay for me. And the "dumbness" side-effects are wearing off as I'm getting used to the medicine (some days I felt like I couldn't remember my own name; but that didn't last long)- my doc said the tiredness might take a while, but my body will get used to it too. I love being able to wake up headache free!!

 

[Tigger&Belle]

Here's my recent thread about it: http://www.disboards.com/showthread.php?t=1032599

I've only been on it about a month, so too soon to know the benefits and I'm still having the side effects. Hopefully it will help since my migraines were out of control.

 

[stm61]

I took it to rule out a form of migraine that didn't involve headaches. I had the tingling fingers side effect, but that was it. Didn't notice any different taste to soda's or acting dumber then I usually do lol. Unfortunately I also didn't get the side effect of losing weight either.

 

[Poohgirl]

I have been on it for a few years, 100mg a day. I went from several 2-3 day headaches a month to maybe 1, that lasts a day or two. Yes I got tingling fingers, (still do when its really cold out), felt dumb, very thirsty, a little dizzy, soda does taste awful, lost a taste for sugar all together which I guess isn't so bad. But after a month or so the side affects lessened and went away. I no longer feel "dumb as a box of rocks", or dizzy, etc. It is an adjustment until your body gets used to the meds though, I will say that, and it happens again every time you adjust the med up. To me its well worth it.

 

[Jennasis]

BTW Im on 100mg (50 am and 50pm). Obviously the higher up your doasge goes the bigger your side effects. Some of us refer to it as "Dope-amax". I know a littel girl on 200mg for seizures...she has lots of problems with side effects!

MY nuero had mentioned that if this didn't work then he might try something called Nuerontin (sp?) My sister is on it for neck pain. Apparently it's a drug for seizures too but works better for pain control.

 

[Christine]

Here's my recent thread about it: http://www.disboards.com/showthread.php?t=1032599

I've only been on it about a month, so too soon to know the benefits and I'm still having the side effects. Hopefully it will help since my migraines were out of control.

Thanks, I just printed that thread out for her.

 

[Christine]

BTW Im on 100mg (50 am and 50pm). Obviously the higher up your doasge goes the bigger your side effects. Some of us refer to it as "Dope-amax". I know a littel girl on 200mg for seizures...she has lots of problems with side effects!

MY nuero had mentioned that if this didn't work then he might try something called Nuerontin (sp?) My sister is on it for neck pain. Apparently it's a drug for seizures too but works better for pain control.

I've tried Neurontin for anxiety. I have heard that it works for pain but I hear it gets real mixed reviews.

 

[Tigger&Belle]

The memory and ditziness sure is annoying. And the spelling is a problem. I hope it's worth it, but so far, after a month there hasn't been a reduction in headaches. I'm still getting one a week. What I have noticed is that on the days I'm not getting a full-fledged headache, I'm less likely to have mild pain. Before the Topamax I was getting about 1 headache a week, 3 days without any pain, and 3 days with some pain, but not a full-fledged headache, so now there are more days without pain. Well, that is until this week. Don't know what I'm doing wrong this week.

I hope it works for your cousin. It is really frustrating to deal with the chronic headaches. It takes a toll for sure and those that do not deal with them or other types of chronic pain don't have a clue. Just never knowing when they will hit is very frustrating. It's very nice of you looking into this for her!

 

[Christine]

The memory and ditziness sure is annoying. And the spelling is a problem. I hope it's worth it, but so far, after a month there hasn't been a reduction in headaches. I'm still getting one a week. What I have noticed is that on the days I'm not getting a full-fledged headache, I'm less likely to have mild pain. Before the Topamax I was getting about 1 headache a week, 3 days without any pain, and 3 days with some pain, but not a full-fledged headache, so now there are more days without pain. Well, that is until this week. Don't know what I'm doing wrong this week.

I hope it works for your cousin. It is really frustrating to deal with the chronic headaches. It takes a toll for sure and those that do not deal with them or other types of chronic pain don't have a clue. Just never knowing when they will hit is very frustrating. It's very nice of you looking into this for her!

Well, she's just not net-savvy--plus I think it gives her a headache!!

She has had horrible migraines for years and has done *some* investigating into them. She already has low blood pressure, so some of the common things that were used years ago, she couldn't use. Many of hers are hormonally induced but she still gets them any old time. What brought it all to a "head" so to speak, this time, was that she had some minor surgery done last week. She showed up at the hospital with a HORRIBLE headache raging (probably from stress). The nurses could see that she was ill from it. They said "we can take care of that." They gave her a shot of something (feno-something). She said within 15 minutes she was like a new person. No headache and no other pain. She said this was the first time in years that she was pain-free. She had suffered with pain for so long, she didn't realize that she even had it chronically. So, she went to her GP today and went through it all with him.

He is giving her Lunesta for sleep.
Topamax
The vitamins
Maxalt.

 

[Tigger&Belle]

Just because she has low BP does not mean that she cannot try some of the BP meds. They are not supposed to lower the BP of someone with normal or low BP, or at least that's what my docs told me. Of course my body does just the opposite of what it's supposed to and some of them did lower mine a little too much, but that's not what they do for most people. I am also on a BP med, but it doesn't seem to be helping much and my neuro dr will be taking me off of it soon, but he only likes to change one thing at a time so we're going to see how the Topamax works first.

What is your cousin normally taking for the pain?

Iwas having rebound headaches because I was taking so much maxalt. I was having so many headaches and taking 3-4 Maxalt a week, way too many and having rebound. So I had to go on prednisone to help break the cycle of the migraines, which I think I have managed to do.

 

[Christine]

What is your cousin normally taking for the pain?

Right now--just Excedrin. She will try a Vicodin or Percocet if she can get her hands on them but she says, in the end, they don't work well at all.