Topiramate and brain scan - migraine

[SilverHairedCat]

Anyone been prescribed topiramate for migraine? I'm getting it today. I like the idea of weight loss for a change!

I'm also being sent for a brain scan after having either a basilar or hemiplegic migraine last week.

Despite this being long overdue, I'm a bit worried actually.

Any others out there who can advise? Do you get those types of migraine?

I was prescribed this for migraine a few years ago and couldn't tolerate it at all. It made me feel so unwell. Neurologist prescribed Amitriptyline which worked like a miracle for me.

Hmm, I'm hoping the side effects won't be too bad. What were your symptoms? Did they help the migraines?

I couldn't get on with amitryptiline - 25mg knocked me out for 14 hours a day, and was making me unable to wake up properly so I was late for work all the time and doped until about 2pm.

Pizotifen was good, but stopped working and gave me horrific screaming nightmares every night!

Propanalol might as well have been sugar tablets for all they were use.

I think this is the last line of defence, then I can push for a neurology visit.

I only took 10mg if Amitryptiline but I got used to the morning drowsiness- I can't describe side effects of topirimate other than feeling breathless, spaced out just generally awful. I hope it works for you.

Hi silverhairedcat, I took topirimate for just over 5 years. The low doses made me feel very drugged and cognitively slow but didn't improve migraine - I got to 400mg a day and daily migraines stopped. However, the side effects were difficult to manage- lots of word finding problems, far less articulate, slow reactions etc and I lost a lot of weight - which became a problem in itself as I had never been so thin before and became very obsessed with maintaining it.
Anyway, long story short, I slowly came off it before ttc. The daily migraines came back about 18 months later. It can be highly effective but I don't think it's a treatment for the long term

I have just stated taking topirimate and it has been so far so good for me. My dr & neurologist were both at the end of their tether as to what to try as we had been through pretty much everything (I'm 40, and started my migraines at 15!) I did have a migraine that started on Friday and lasted til Monday, but instead of being totally bedridden for four days and having to call my (amazing) mil in the look at the children, I was able to cope with some triptans and oral morphine, lovely dh was here at the weekend too of course, so sent me to bed when I needed. This was unheard of a few weeks ago. So, I'm not counting my chickens, but I'm very hopeful. Good luck.

Hi, I suffer from hemiplegic migraine and have been through the medication hoops. I like you couldn't tolerate amaltriptaline or norotriptaline. I began taking topiramate in Sept last year. 25mg, then 50mg and then 75. I stopped the migraine but I had a constant low grade headache once I upped to 75mg. I couldn't function at work, I'm a digital/it business specialist and my client meetings became increasingly difficult. I ended up not being able to string a simple sentence together. I had stomach pains which subsided after a couple weeks, I lost some weight due to stomach ache and not eating. I began losing hair t an alarming rate and my skin looked terrible. You should take a biotin type supplement if you are keen to take topiramate. I stopped taking it in January as I hated how I felt. I have been migraine free until now which may be a result of the medication? I used to have at least two per month. I'm going to try the new treatment once licence is approved if my migraine returns. Enuramab or something? Hope this helps.

Hi, I take topiramate (50mg twice a day, although previously was on 100mg twice a day) for daily cervicogenic headaches. I also didn't get on with propanolol or amitriptyline, but find the topiramate fine.

I was really spaced out at first, but the brain fog is mild now. I get pins and needles occasionally. I lost weight initially due to a decrease in appetite and increase in metabolism, but I have been able to maintain my weight quite easily (mainly due to Magnums!) Also had increased thirst. My neurologist reckons it is important to drink a lot of water on topiramate anyway to prevent kidney problems.

It is worth having a neurologist on board anyway. They have extra options like nerve blocks and botox in case the topiramate doesn't work. Most NHS ones have huge waiting lists at the moment so better to get a referral sooner. Hope you find something you get on well with anyway!

Thanks everyone! I'm having 3+ classic migraines with aura per week, with only a small number of hemiplegic or possibly basilar migraines now and again. They scare me, as I get facial paralysis and slurred speech etc.

The weight loss is an added bonus for me - I am several stone overweight so I could stand to lose a lot! What sort of rate were people noticing happening?

I'm really hoping the brain fog doesn't last long - I'm recovering from a "depressive episode" with raised anxiety levels which had been clogging up my brain, and I could do without going back to that state.

No indication of a neurology referral unfortunately - I assume the CT scan I'm being sent for will be reviewed by someone but that's as far as I've got.

My husband takes topiramate for vestibular migraines, along with betablockers.

He has increased over the last 12 months to 400mg per day and now at this stage they seen to be helping greatly. When he increases his dose he suffers badly with fatigue and I notice he isn't a clear of quick as normal but this settles down within around ten days.

Considering he was blacking out constantly last year this has been a miracle drug for our family and we have started to get out lives back.

He did lose some weight but not as much as he would have liked - mainly because he stopped vomiting daily when it started working!

Good luck- I hope it's the answer for you.