Topomax and headaches

[crwstar]

Hi

I would love to hear from anyone who has taken Topamax (sp) for headaches. My doctor has suggested it as an option for my 10 month long headache. She described pretty well what happens when the body gets into a headache cycle lasting this long. How have any of you responded to Topamax? Were you able to stop taking it once the headache cycle was broken? I don't usually like to take medication but will consider it if I can be without a headache.
I do have a small aneurysm behind my left eye and a pituitary microadenoma of which I am told is not the cause of my headache. Any info would be appreciated.

[alonna17]

Hi. I just wanted to say that EVERYONE responds different to topamax. There are a lot of stories good and bad.. I just wanted to tell you one thing... START OUT LOW and take your time to build up your dose!!!  good luck :)
alonna17

[jkgirl221]

Hello!  Hope things are working out for you.  Topamax either works for you or does not.  I have had migraines (5 a week) for 13 years and I have been on Topamax for over six months now.  I can honestly say it has some great points and some bad points.  In the beginning, I had the side effects such as the "pins and needles", numbness, memory loss, etc.  That of course was when I was gradually going through the stages of increasing my dosage keep in mind.  Few people remember that your body has to adjust to the medicine.  Once I hit my required dosage (75mgs) and had time to adjust (two weeks really), the side effects went away.  I still get the occassional headache/migraine due to the extreme weather/pressure change but I can manage.  Weight loss is a big thing I am battling with though.  I HAVE lost 30+ pounds because of Topamax.  Very irritating when you are trying to fit into a wedding dress.  I probably need to increase my dosage for the migraines but I am afraid because I do not need to lose anymore weight.  I am still averaging at least 1-2lbs a week.  Hope this helps, good luck with Topamax.

[crwstar]

I should say I have most of the syptoms already that are side effects of this medication rather than all of them ;-) that's a bit of a stretch.

Hi Lilylelani,

Thank you for your input - All of this compiled really helps me go in really well informed and able to ask some good questions of my doctor or even a pharmacist. I'll be honest though I am starting to lean towards not taking this. But will sit down wy my doc before making the final decision.

[Lilylelani]

I took Tomamax for about a year. It worked for migraine, but my legs got numb and tingling and also some in my hands.  Lastly, I started to get a metallic taste.  I also developed red splotches all over my legs.  I lost weight. I was told by my  neuro doc that there needs to be a liver check frequently when on Topamax due to a toxic buildup.  

[crwstar]

Thank you for your response and I am really sorry to hear how you came to be taking topamax. My father retired from the military, I won't venture to say I understand what you've gone thru but I can empathize with it.

Thankfully, the pain I am in while consistent is not as bad as what you are experiencing. It can spike to a 10 and above but mostly its about a 4 or 5 and below unless I over extend myself.



Wildfire22,

reading what you wrote does offer more good information - it took time for you to adjust to the meds and has been worth it as Greenne has said. Thank you for your input.

And Mommalmt,

Thank you for your input as well. My neurologist mentioned two other options for meds that I don't remember. I will be going over all of them with my primary care doctor thoroughly but I like the language you used regarding long term use of Topamax. Something I really need to be clear on as you got it right I don't like taking medication cause it effects me pretty bad. I already have all the symptoms of the side affects so it seems to me like taking this would just increase these symptoms.

Thank you all for your help on this I appreciate all of your experience.

Crwstar

[mommalmt]

Hello,
Hope you have also discussed short term options with your Neurologist such as a steroid (only taken for a week; or it can be injected 1-3 times I believe) to stop the current migraine cycle. . .

I am on Topa currently, but it's not a short term fix. If you don't take medications easily, I would really encourage you to talk to your neuro about another option. I have experienced all the side effects everyone posted before me and have been on Topa since before it was the "Greatest thing for migraines . . ." back in 2002. Long term effects are it DOES effect your memory, your speech pattern, foggy head, tingling sensations in extremities. . . BUT for me; who needs a memories? speech? or a foggy head when all I wanted to do was die from chronic acute pain?

I had cluster headaches and migraines that lasted weeks/months that were successfully treated - not for a long term - with cocktails of steroids, muscle relaxers, migraine (triptan) meds, and pain meds. If you don't suffer from chronic pain, I suggest you get a second opinion on the long term use of Topamax.

Just my opinion, I hope you find this somewhat helpful in your search. Good luck and God Bless!!

[wildfire22]

Hi,
I have been on Topamax for years.  The first few months were the worst, getting the levels adjusted, it affects my memory something awful. No the weight loss thing didn't happen for me saddly enough!!ha ha !  Those first few months my emotions where all over the place. It must not affect everyone that way.  I toughed it out. My migraines are so severe it had to try to stay on something.  If you try it i hope it works out real well for you!

wildfire22

[greenne]

Hi,

I've been taking Topamax for a month now to try to control post TBI migraine headaches; courtesy of a terrorist explosion(rocket attack) in Iraq--April 2008. I get awful headaches....at first 1-3 migraines per day (mine would only last an hour or two), but they would be really bad sometimes. If I was lucky, I would pass out from the pain...but mostly I'd just get nauseus, dizzy and left praying to God I'd die (I know that just sounds completely awful now!!)

Anyways, tried Norttriptyline first...mixed effects...helped but had side effects. Now I'm on Topamax, just stepped up to 50mg and 25mg(low dose) Nortriptyline. I'm feeling much better...not great....but headed in the right direction. No big side effects from the Topamax other than weight loss and some cognitive effects....but I'm kinda already "lost" from the TBI (can't remember things, foggy headed, can't think of the right "word"...lots of times I can't say what I want toi say). So, I don't know if these are side effectys of the Topamax or not.

For me...it's been worth it. The pain was so bad. Can't even describe. Down to 1-3 migraines per week...even those seem to be slightly less severe I think.

Just MHO.

Nate

[crwstar]

Hi thank you both for your response - I appreciate the honesty with the side affects and recognize medication effects people differently. My concern is of course side affects although it would be nice to put off some weight I've gained this past year - I know not a good enough reason to take a medication ;-) It won't be until late November that I seriously consider it as I am on a supplement regimine right now, I'll see how that goes and discuss the medication options in my next primary care doc appt which should be next month. I thank you both for taking the time to write and let me know your experience.  It really sounds like what someone else mentioned - you must stay in contact with your doc while on this like most meds.

many thanks

Crwstar

[mle134]

I took Topamax for awhile trying to stop a "non-stop" headache.  The side effects were bad enough for me that it was discontinued.  The lack of balance and eye pain I had were what my neurologist decided were reasons to discontinue.  The headache pain was as bad on Topamax as it was off Topamax, so it just wasn't the drug for me....

I have a friend that has used Topamax for quite awhile and it has stopped her "unstoppable" migraine, and I was disappointed that I did not react to it in the same way.

Here's hoping you find the right solution!!!

[HR_PuffnStuff]

You will find varying opinions on Topamax. Some people think it's absolute poision. There are side effects which can include the numbness/tingling, weight loss (not such a bad one LOL), and some say they experience a "foggy" brain. For me, the side effects weren't bothersome enough to quit. The Topa did seem to help in the beginning (I was taking it for chronic migraine) but after about 2 years, I felt like it wasn't quite doing the job so I recently got off. I would be willing to try it if I were you because it has helped many people with migraines but of course you can get off of it if it doesn't work after a few months. I, too was a bit hesitant to take it but at that point I was basically willing to try anything....funny what migraine pain will make you do. I know that this medicine is also prescribed for weight loss and other things (can't think of them right now). And of course it's original purpose is for Epilepsy. I do wish you the best in finding relief. I hate what migraines have done to my life and I would not wish that on anyone. God Bless You.

[crwstar]

Hi, thank you for your response - that doesn't sound like fun. I'm in the consideration stage at the moment so hopefully won't have to go that route. But I like to have my ducks in row and be as informed as possible on these things. I don't know all the reasons someone would take this medication - are you taking it for headaches? and if so are you finding relief?

[cat9841]

I am on topamax now and some side effects are hard to deal with. my dr is decreasing my dosage. my side effects are that my arms and legs are numb and tingling like pins and needles and I am very tired I have diahreea alot. you have to stay in contact with your doc while on the medication.
cat

[DrNoopurMD]

Hi,

How are you?
Topamax is an anti-epileptic medication which has shown some good activity against cluster and migraine headaches as a preventive medication.
One important thing to remember about Topamax is that its dose is gradually tapered up to a therapeutic dose level over a period of many weeks.
Similarly it should not be abruptly discontinued.
It is a great preventive medication but needs to be taken correctly. One should notify the doctor immediately if visual symptoms occur.
Hope this information is helpful.