topiramate

[car67]

Hi

Has anyone been on Topiremate ? Did it work, side effects ? I appreciate everyone’s different but was wandering as this is the next meds they want me to try, but they seem to have the same side effects as the meds I’m being weaned off so I’m 😕 confused ?

[Tenor000]

I was on topiramate caused dizziness and blurred vision. I've come off it now

[car67 in reply to Tenor000]

Thank you Tenor for replying

I am being weaned of a medication which cause exactly the same side effects , I find it really confusing that they are thinking about me on this one!

[Tenor000 in reply to car67]

I have now been but on zonisamide and find that much better

[car67 in reply to Tenor000]

That’s really good, tbh I didn’t take well to Zonisamide, it really affected my mental health. Everyone different though.

I hope all works well for you and once again thanx for your responses.👍🏽

[yogastrength in reply to Tenor000]

Hi there, yes I am on Topiramate, I hate it, my weight is down to 128 lbs, my appetite has gone. I am so tired and listless, no energy and just don't feel like me. I know it depersonalises me as I have been on them before and it's why I previously stopped taking them, but have had to go back on them because of seizures returning with a vengeance. I am on 400mgs daily but am having a seizure night a month (when there is a full moon, weirdo Cherry or Lunatic ha ha) It is getting me down but am told by the Neurologist that I am a prime candidate for a brain operation. The thought of being Medication free is tempting me and I am researching it as we speak. I have tried Lacosamide and Lamotrogine which did nothing hence Topiramate again. I have the auras just before a seizure and have been told I have Focal seizures although I have had a Grand Mal seizure before. I actually end up losing 3 days a month as I am useless for 3 days after the seizures (severe headache, sleeping 2 days, lack of taste and appetite due to seizure) so losing a over a month a year.

Good luck, Cherry x

[car67 in reply to yogastrength]

Thank you Cherry for taking the time to reply, wow if I was to write about me on my current medication it’s identical to yours , also I’m a good candidate for the op but I don’t want it , tbh I am relooking at it as this will be my 11th med change and I don’t think my body can cope n e more. I understand you going back on topirimate coz your seizures have returned like a vengeance but where does it stop. Can I ask if you have noticed hair loss?

I already have lost a lot of hair and I read it can cause hair loss, I’m not vain but with everything else we have to cope with I can’t deal with further hair loss. It’s just a nightmare , don’t really know what to do!

[yogastrength in reply to car67]

Bless you, I am sorry to hear about hair loss on top of everything else! It never ends, I am on a medication for rheumatoid arthritis that I have recently found out is for alopecia too and I think this is why I have no hair loss. My hair is fine and has slightly thickened over the last 4 years (unless it's my age, grey hairs slipping in here and there!!!) I am fed up, recently diagnosed with ADHD too can you believe at 63 years old, hahaha.......that can run alongside epilepsy, oh joy. But, guess what? it could be worse, I am still here, I can walk, talk, function most of the time, enjoy the countryside and most of the pleasures in life and for that I am thankful.

I wish you well my friend, Cherry

[car67 in reply to yogastrength]

such a lovely message Cherry, made me smile , thank you. I need to focus on the positives as oppose to the negatives, there are so many people less of than me, so I should be great full, thank you for reminding . ADHDat 63 ☺️☺️☺️, you really are on a roller coaster , good luck friend and I hope you keep well .

[GillyA]

Hi, I started just before Christmas, no significant side effects beyond some vivid dreams. It’s to soon to know if it’s working yet as my seizures are infrequent but pretty bad.

[car67 in reply to GillyA]

Thank you for replying.

[GillyA in reply to car67]

Gosh, I flew yesterday and must have been having a bit of jet lag. My new med was lamotragine not topiremate, apologies I obviously didn’t read properly.

[car67 in reply to GillyA]

lol np

[paddie2]

My daughter now 34 has been on it for a while now .years ..she tolerated them well with lamotragine ..she was seisure free and driving...i think as she hit 30 the hormones changed and now she is having weird twitching and pulling at her top and eyes glazed ..only for a minute but will need to change meds as these happen generally just before or after periods ..she has CLOBIZAM as a rescue if she feels strange she has a fraction of a clobizam not even half or quarter ,they do have a strong effect

[car67]

Hi Paddie

Thank you for replying.

I was on clobizam as my rescue meds, they made me so ill to start with and I would be knocked out for days, then I became immune to them so now my rescue meds are lorizapem which have the same effects as clobizam! I hope your daughter is fine.