Hi My First Post

I have just been diagnosed with Hemiplegic migraines, after years of thinking i have been having mini strokes, Saw a consultant neurologist last week after ending up in hospital again for the second time in three weeks. I have had migraine since i was two years old, but not had anything as bad as this hemiplegic migraine untill i had my first stroke five years ago. The last three attacks have been just like my strokes, my right side motor function goes and the right side of my face drops i become totally confused and slur my words. I also have a couple of other medical problems I am an insulin dependant diabetic, and just also found out that i have a type of epilepsy, as i keep having absences, the consultant has started me on 25mg Topiramate Tablets which he says will help both problems, i need to visit my GP now to have the dose reviewed.

Hi there and welcome

Nice to have you on board. SOrry you have more than one illness to cope with...but it Topamax works for both of them that would be good.

Hope you find the forum useful and I know you will find a lot of support from your fellow sufferere..just shout if you have any questions.

Kind regards
Jane
xx

Hi Paul

And welcome

I am so sorry you have more than just migraine There are quite a few on here who have HM and a few who have had TIA too (including myself) so will total know where you are coming from. It is not fun at all.

Tompmax is drug which was created to treat epilepsy, and then found to help with migraine. So it sounds like a good place to start - if you can tolerate the side effects. But I do know of a lady who started on this a few months ago and she has not had a mig for 3 weeks now - so it can work

Do let us know how you get on with the GP - did they say how much you have to get up to?

tee xx

Hope the Topamax works for you. It would be so good to be able to tackle two problems with one drug.

If you do find it tough to take you can call your neurologist back and look at alternative drugs. The anti/c's can work extremely well but occasionally some can play you up.

Hi Paul
Nice to hear from you.

Sorry to hear you've been through the "mini stroke" thing, it is very scary. They thought I had epilepsey for a mo as I described the same thing as you did so did Tee I think! I would be doing something then 1 1/2 hrs later find myself in another room it was so scary when I was on my own or if people were in the house they would find me just staring at nothing when I was cooking or something, they had lots of burnt food back then, but meds have made it better.I think its part of HM.
I am on Topiramate and the wonderful flunarazine which works great for me.
Talk soon glad you joined.
Sheena

Hi Guys well went to see the GP this afternoon, she has raised the dosage of my Topiramate by another 25mg to 50mg, She said if i dont have another episode in the next week then leave it at that or otherwise put it up another 25mg per week for a maximum of 100mg. The only drawback up to now seems to be a little backache, bad wind, and feeling tired, seem to be doing alright up to now, not had a HM or a Seizure since starting taking the Topiramate

Oh sounds promising I am sooo pleased for you..when the topamax suits someone it really is a useful drug..they are upping the dose carefully, and are trying to get you to be on the minimum therapeutic dose possible....always the best strategy.

Now I just need to find a drug I can blame my awful wind on...

Trust you Jane

LMAO - Oh Jane!

But Paul - that is good news - a nice steady increase - I am so pleased this is working for you x

Do let us know how you get on at a higher level.

Right guys, now on the 50mg, going away for the weekend now, so will report back Sunday night how things are going, not had another HM since starting the Topiramate, also not woke up with a headache, sheer bliss. Hope you all have a great weekend

wooo hoooo - It sounds very promising

Have a wonderful weekend

Hi Guys well back from Blackpool, had a brilliant weekend, the hotel was really naff and i wouldnt reccomend it to anybody but the food was really good. Had a few strange moments yesterday, a few confused moments, dont know what that was all about, also felt a bit shaky today and had a couple of odd movement moments, but nothing like i was having. I also had a headache at the back of my head before i got on the train home but a couple of cocodamol soon sorted that out. Come back really sunburnt, does anybody know if this is a problem with Topiramate ??. Cheers for now Update later

I am so pleased you managed to have a good time, you were pushing yourself so bound to get the odd moment.

Topamax has a number of side effects: I had a quick look for you and these moment could be the drug ie

Unusual sensations, such as burning or tingling (paresthesias) -- in up to 51% oe people
Dizziness -- up to 32%
Confusion -- up to 14%
Difficulty with concentration or attention -- up to 14%

I have a full list if you want it?

I know I had pins and needles in my hands quite a lot and mentally I was not at all good.

Worth keeping a note though and see how often its happening.

Glad you where able to have a break.

Tee

I don't think sensitivity to sunlight is one of the issues normally with Topamax..however some of the other drugs it is...some anti depressants can make your skin more sensitive and prone to sunburn.

I'd be a lot more use if I could remember which ones wouldn't I?

Jane
x

for the past six weeks i have been having diabetic hypos, I am really annoyed that nobody told me at the hospital when i was prescribed Topiramax, that it interacted with the Metformin and insulin i take for my diabetes, after some google searching i found plenty of sites that explain that it makes the Metformin work about 30% to 40% better so you dont need as much insulin, now down from 36 units four times a day to 12 units of insulin. four times a day. Great thing is i am now starting to loose some weight. I have not got out of bed with a headache since starting Topiramax which is bliss. but some of the side effects are a pain, like feeling very tired all the time, really bad wind, bad back pain, and some burning bone pain in different bones, but its really worth it, noticed something really weird though i feel sick after i have eaten for about an hour and then i get tremmors for about an hour, happens every meal, but only since starting Topiramate, anyway enough whinging, i hope everybody else is coping alright, and just want you to know i do think about you

oh Paul so sorry you had to find out the hard way, but a reduction in insulin is good in the long run

I had the sickness feeling on Tompamax, although I never threw up, I just felt sick after each meal. I also remember the shakes and pins and needles in my hands, but I am not sure mine where linked to meal times, they just came and went. If you can handle the side effects your doing well and no wake up headache sounds fantastic

Hi Paul
Thats Drs for you......... but at least you'v worked it out, the side affects of the topiramate wear off after a while or at least they did for me all bar the tingling in my hands and feet, but then that could be due to aura i'm not sure on that one as i'ts not all the time now.
I had put on a lot of weight with some of the other drugs I had taken but it all came off with the topiramate and quite fast as well.
I know a lot of people dont get on with it but I'm fine on it and been on 400mg for over a year now with 10mg of flunarazine as well and I am doing ok on them.
Its good youve not had a bad head since starting on them, shows they work for you, if you can get over the sickness stage they may be worth staying on.
Sheena x

Hi paul, just wondering how you wwere doing, are you still on the topamax and have the side effects settled?