Question from a member: Has anyone tried Topirimate and how did they find it?

*Never heard of it, what is it?

*no idea of what it is, never heard of it!

*what is it ?

*I just found this via google, I'd never heard of it either
Topiramate

*It's Topamax and yes I have tried it been on and off of it for several years I recently got off it cause it was making my migraines worse instead of helping plus it made me forget more stuff and I already have fibro fog

*If it is topamax, talk about brain fog! its a killer on the memory cells. I quit taking it after 3 months, did not like feeling like a zombie.

*Toprimate/Topamax is an anti-convulsant. I tried it for migraines and it worked. It can cause some unpleasant side-effects.

*I love it! I was put on it for migraines and it initially helped them, but hasn't been helping them lately. For me, it helps with so many other problems. It may be making my fog worse, but I'm not sure. I don't really have any of the negative side effects people complain about, and most of them can be managed with vitamins/supplements.

*I have had clients on that stuff, cruel, cruel, steer clear if you can. That is the reason I will not take many things, I looked after people on them and saw the day to day side effects that were seen as behavioural.

*for me, it's helped a TON with the pain!

* Many people on my group have had it for migraine. As above said it does have some VERY unpleasant S/E

*One lady I know was diagnosed Bi poplar, it was the Topomax.

*I've been on it for years for migraines - helps tremendously with nausea/vomiting, in fact, I have none really with migraines now - however, I still have migraines, just not as severe. It is *horrible* for your brain. I've gone back to half dose at times and it seems my memory does better, but then the headaches are worse over the long run.
But right now the loss of memory is so disturbing that I'm considering going off and finding another way of dealing with the migraines, since I still get them anyway.

*is it topramax or topirimate?

*no, since I knew I had fibro for years and now my doctor agrees, she wants to wean me off Effexor ad try Cymbalta. I am in a lot of stress right now and she wants me to wait to wear off Effexor

*Topomax IS Topiramate. Topomax is the brand name, topiramate is the drug name.
I don't know that I've been on topiramate for my fibro, but I have taken it for my migraines, and it worked well, other than the obnoxious tingling (neuropathy) in my fingers and feet.

*My tingling is usually better with it, it gets worse (like all the s/e for me) when the dose is increased, then goes away within a week. I've read if you're put on it and the wrong section of your brain is the problem your more likely to have s/e.

*When my doc put me on it, he told me it would help with my pain. That's what actually led me to look into fibro. It's one of the few pain conditions it's actually thought to help!

*We discuss migraine with FMS on our group. There are people there who have their own Topomax stories to tell.
Read here

*I have been on Topamax for a while for icepick headaches. I had initial numbness in feet, knees and face which lasted up to a year, but it was worth it for the relief I was getting. However the icepicks have been breaking through again so I've had the dose increased and the numbness/tingling is back with a vengeance. Can't comment on brain fog as I've had that for years anyway.

*I have bene on Topamax since 2000-0001 for migraines which it has helped. But once I was diagnosed with FMS, I was told this was also known to help with the pain for fibro. It helps me to not take pain meds.

*I take Guaifenisen to hlep with my Fibroch pains. Makes life more bearable.

*I have been on it for years - it has kept the migraines from breaking through as often. I used to get migraines pretty much weekly and now it is more like one every six weeks or so that I get one so bad I miss work - I think that is worth taking it twice a day.

*I was on it and it helped with the pain but it affected my thoughts and made my memory even worse! Some doctors call it dopomax,instead of the real name topomax!

*It was my question. my doc has suggested it for fibro (and she says it will also help with weight loss). I am scared to start something that might have bad side effects.

*My sister was put on it to help with weight gain caused by Seroxat and she had a TERRIBLE time on it. Not only did it not help weight gain or migraines particularly it made her really anxious. Well, anything that's supposed to reduce weight is going to have some sort of amphetamine-type effects.
Steer clear if you suffer with anxiety. The psychiatrist who prescribed her denied that it could cause such a problem

*I am on topiramate for my fibromyalgia constant migraines it knocks them down a notch, about 20% I have been on it about a year and a half with no side effects that I know of.
I have constant migraine with sickness, sensitivity to light, sound and smell. The migraine doesn't go away its been there constantly for almost three years.

*No sorry.

*No sorry I use Pregablin which I believe is along the same lines. Boy do I know it if I accidentally miss one tablet!

*I take topiromate for Intracranial Hypotention. I haven't noticed any side effects to it but it does not help with any fibro pain. Fibro fog does seem to vary more though as it can last longer now. Maybe that is a side effect.

*does help with pain, esp neuropathic pain in hands and feet.
I take extra when get trigeminal neuralgia flare and it makes a big difference. Some problem "losing words" but don't know if due to med or fibro fog.
It does help with headaches, FMS headaches or other, not migraine.

Do you get a lot of migraines?

*Never

*Absolutely!

*My sister does but not me I'm happy I don't.

*Yep

*Every so often, yes, and when I get one, it knocks me off my feet.

*All the time.

*Oh my goodness yes! Migraines were my first symptoms.

*Yes, not as many now my GP put me on anti epilepsy medication.

*Too many.

*Almost every day.

*I used to, but haven't had a single one since I had a hysterectomy, and I only developed Fibromyalgia after the surgery. I absolutely believe it is related to hormone levels or something.

*Two to three times a week, so too many plus daily headaches.

*Yes everyday.

*Oh yes they last for day's.

*Yes. It's gotten a lot better since I went on 100mg of Topamax daily. However I get them if I get a sinus headache and don't take care of it quickly enough, if I let me blood sugar stay low for too long and if I have an asthma attack, I'm a mess!

*Once or twice a month for a few days at a time.

*Oh yes. At one point I had a migraine constantly for over a year, numbed by strong pain relief but never gone. I am convinced mine is linked in to a dural tap I suffered during labour in 2002, infact I am convinced the Fibro is caused by this too.
For me medication would work for so long then stop.
One in particular (anti epilepsy one, sorry Fibro fog can't recall name at the moment) worked well then stopped working after 6 months and after a years break GP thought they would try it again and I reacted so badly I thought I was going to die.
Migraines are what finish me off Fibro wise. the rest although bloody hard to do I can battle through. Migraines I can't as I throw up to the point of collapse.

*Heck Yes!

*No migraines but daily headaches which are really bothering me in the evenings when I try to relax.

*Luckily, haven't gotten any recently (I knocked wood!) But before I lost my job, when I pushed my body harder then I do now, I got them almost weekly.

*Yes! They are stress related according to my neurologist. Stress = Pain, go figure!

*Remember the name now topiramite.

*Yes.

*No I don't.

*Yes take zomig for it and they really help, been ill for 10 years but migraines have started in past 2yrs. Have to avoid the sun, heat, stress and alcohol.

*Used to, I'd literally collapse and black out with them, thankfully now after changing my diet I only get them rarely and that's if I over do it too many times in a row without proper resting and eating .

*Yes, a couple of times through out the month, more around I am due a period is the worst time.

*Bloody hell more than my fair share I think.

*Every day for last 24 years.

*Constant dull headache and, yeah, migraines about once a month. Especially with extreme weather changes (gotta love living in Wisconsin).
Topiramate helps keep me from having too many and, when I do get them, Relpax usually stops them from getting too bad. Before Lyrica and Savella were helping with the Fibro symptoms, the migraines were out of control even with the medication.

*Yes I do. Sometimes it is sinus, when my throat is sore and sometimes it is muscular, when the pain goes up the back of my neck into my head. If it is sinus I take diphenhydramine.
I also take it at night when I can't sleep. (Tip: diphenhydramine is the generic name for Benadryl, which is what is in Tylenol PM, but if you buy the generic you can buy it at the dollar store) If it is muscular I take butalbitol(not sure if I spelled that right), prescribed by my Dr.

*Loads.

*Used to have them constant but thankfully not so much now just get them every so often.

*No thank goodness.

*I did a lot until I was pregnant with my first child, then they seemed to go away. I now get one every once in a while. The only thing that works for me is Excedrin Migraine.

*I got two or three a week for years - then I found out I was chemically sensitive. I was fortunate enough to be able to move away from all the pollution to the coast and within two years they had stopped.
As long as I'm not exposed to fumes eg smoke, fuel, perfumes etc. I rarely get them any more. That was such a relief as they started when I was aged about 7 in 1950.

*Sometimes several a day and a day never goes by without one.

*He'll yes. Constant daily headaches in varying degrees and Migraines from Hell that knock off my feet for a day to a week usually with a flare up.
But have found being on LYRICA has made a difference. Daily headaches a bit more bearable.

*No, but I get lots of headaches and I get the visual disturbance from migraines without the headache.

*No I can honestly say that my head is the only place that doesn't usually hurt.

*Yes never used to headaches like this have to stay in bed all day makes me feel really ill.

*All the time. they get worse when I'm having to take a lot of painkillers too.

*I get headaches on a daily basis but they're not all migraines.

*Not really, ever now and then have a bad headache but, not often, the one thing I need is relaxation and knowing how to feel that and going to sleep and feeling rested. Never have those two things.

*No I have never had one, but I do suffer with tension headaches, for the lady who couldn't remember the anti epileptic medication could it be Gabapentin?
I was put on that and I had such an extreme reaction (took my Fibro symptoms and magnified them to a point I felt I would die) that I still haven't recovered from it completely and it's been almost a year!


*Loads although less since going on the amitriptyline.

*I had 1 everyday for a week every month until my doctor gave me the depo injection don't get them now which is great.

*Yes I do.

*Daily headaches are not migraines, but can be very bad and can be caused by medication. Sinus headaches are usually migraines.
Migraines usually come with the Fibro and many FM people, especially women have them. Hormones and menopause can make them worse.

*Oh yes.

*Yes

*Yes I've even got anti- sickness tablets for them as well.

*Yes I do. I have been getting them since I was 7-8 years old.

*Yes and if I don't catch it quickly I end up really ill. gentle hugs everyone.

*Not as many since I started taking Topamax for them.

*Yes along with other headache types.

*Used to have them weekly and they lasted about four days. Since being on gaberpentin for the last three months, I have had one.
It was as bad as previous ones with the feeling that I had been hit with a cricket bat down the left side of my face and head but it only took one day of paracetamol and codeine to get it under control.

*Yes lot's of them.

*Only since my 1st Stroke which was 5 years after diagnosis.

*I sure do.

*UGH! I was diagnosed with chronic daily migraines, not fun at all! Anyone have a cure or solution?

*Thankfully no, but I do have chronic daily headaches due to my Fibro and am on Topamax, but when I get them, I get them like a typical migraine that can last me a couple of days.

*Yes. I think it has something to do with the medications I am on. They get really bad when I have any kind of change in medication.

*Loads! Usually brought on by exhaustion, stress or lights.

*Yes - have a big one now.

*Yes, I have anti sickness tablets too! Make me feel awful, get them about twice a month. Sometimes more often, have bad flare up at minute so taken meds to keep stable.

*I use to do when I was a teenager, but I do permanently have headaches, worse when I'm stressed, like all the time, with a ASD child, and Flbro (sorry about the spelling.)

*Used to, got a lot of tension headaches that went into a migraine as well, however, I don't get half as many now due to being put on propranolol (40mg 3 times daily) and fortnightly full body aromatherapy massages. Its worth a try!

*I used to get them only occasionally, but lately I've been getting them more and more often. I suspect they're actually tension headaches. My mum started getting tension headaches constantly just before her Fibro went full-blown.

*All the time! A lot of them seem to be hormone related.

*YES! I switched to no hormones added" milk, so not as many migraines as I used to. Massaging the head and scalp, along with Excedrine seems to be my only relief.

*Last year I lived with migraines almost constantly for about 7 months. I was horrible.

*Yep, right in middle of forehead.

*I go to a headache specialist who has been very helpful. They decreased when I was put on Topamx. I'm now off it after a year on it.
Hopefully they won't return as often as they did. I sometimes got them 3 or 4 times a week, and couldn't function at all.

*Too many.

*OMG Yes!

*Last weekend 72 hours. First one in about 8 months. I just sleep only thing that helps.

*Have one now.

*About 1 or 2 per week.

*But the funny thing is That was the beginning of my illness 3 and 4 a week, nothing would help except a pain shot. But now I can take 2 excedren migraine and it takes the pain away!

*Used to, but strangely, when menopause hit, the migraines decreased, and fatigue and other pains increased.

*Sure do.

*Yes. used to get so many that I would run out of medication.

*I HATE migraines, on relpax medication to get rid of them, but I get them bad enough that they trigger my asthma attacks. To the point I am totally helpless and thankful that I have never been alone when they happen (stopped breathing twice) and I almost always wake up with them if the house is too hot/stuffy.
I also found out that mozzarella cheese has a chemical in it that aggravates migraines and once I stopped eating it so much they decreased. and as long as I keep my house cool when I sleep I can be thankful when I don't wake up with one.

*Yes.

*Yes.

*Yes really bad ones.

*I do get some migraines, my biggest complaint are the tension headaches.

*Yes.

*Yes, my hearing has gone too, peace and love.

*Yes, Yes I do, severe ones last 3 days, and then the back to back ones. I feel like a pressure cooker, or a volcano, building up steam and there she blows!
Then I am all right for a while, then off we go again. does anyone else get nose bleeds after a bad migraine?

*No

*No, used to before when I was younger but no problem now.

*Anyone else suffer with their hearing. I'm not sure whether it is my hearing or the fact that I can't take in what someone has said so have to ask them to repeat it time and time again?!