Zonisamide

[sloan44]

Anyone taking Zonisamide experience bad reactions of weakness and shacking?

[Beansheen]

Hello, am on tegretol and Clobazam and till July was weaned off topiramate in favour of Zonisamide.

I had been on previous 3 for 3 years approx, various doses due to intractable epilepsy.

Now Zonisamide. I was determined to be positive and situation in July had been deteriorating since April. Seizures, having to use walking stick etc. Was put on 150 mg night and morning of Zonisamide. Reduced evening topiramate to Zonisamide first, then morning doses. At 150 night / morning Zonisamide I could only cope for a week before reducing a.m. dose. to 100 mg. / 150 p.m.

Weakness, fatigue, jerking had stopped but began again. Walking stick had been abandoned for a month but today, 19/9 necessary once more. Sad, nervous ( not me at all) cannot eat!! Not bothered but feel yuk too. So, had discussed previously with neurologist reducing to just 200 mg a day....can run risk for seizures, fine balance of drugs to guage etc, but in last 3 days did reduce......not great, still weak etc.....

I know it takes time to adjust as have been taking anti epilepsy drugs since 1983, but these reactions aren’t great.

How have you found Zonisamide?

[Hidden]

Hi, am currently weaning off Zonisamide an on to lamotrigine as I struggled (more mentally)taking it with Keppra plus I also take Clobazam. Take Vit B6 & B12 to give myself a boast which was ok by my neurologist. Hope this works or will be back to Zonisamide as it did work, with a couple of hiccups 🙄. All these drugs take time to settle into your body, I would allow up to 5 months. Good luck Xx

[Beansheen in reply to Hidden]

Hello, that’s interesting re B12 as my GP has put me on regular injection, also I had been wondering about B6 so will look again! Having recently started Zonisamide, meant to be taking 300 mg spread am/ pm but couldn’t cope with dose so neurologist said ok to 200 pm.....but risk of seizure. Well, guess I need to increase as have had small seizures since Saturday. Do you think it’s ok to take 250mg Zonisamide pm, rather than some am? Am taking other drugs....I will contact specialist but not easy atm!

[Hidden in reply to Beansheen]

Hi, I’m nearly off Zonisamide & on lamotrigine, still on Keppra + Clobazam.

I was taking Zonisamide both am & pm, as prescribed by my neurologist.

The same for Keppra & Lamotrigine.

Z I found made my mouth very dry. Was warned by neuro to drink lots of water - kidneys.

It was due to the Keppra side effects that I started taking B6&12 but maybe with the combination of Z & K made me feel worse! Hopefully L& K + Clobazam will work !!!

Good luck & take care of yourself.

X. SJ

[Beansheen in reply to Hidden]

Thank you, he did say drink and must keep that up! Good reminder! Yes, earlier took extra Zonisamide, rest etc this evening, but I can’t just stay in bed!! Thanks for your quick response too. Hope you’re doing well.

[Hidden in reply to Beansheen]

I was taking Z - 250mg am & pm plus Keppra 750mg am&pm. Had to make myself do exercise, did feel better after, be walking, yoga or fitness class & yoga 🧘‍♀️ 😃 The joys. 🙄🙄. Xx SJ

Ps will keep you informed x

[Beansheen in reply to Hidden]

Well done indeed!! Mmmm, I’m feeling I need to do just that! 🥴

[Hidden in reply to Beansheen]

If you lived close to me I’d drag you to yoga & fitness class or a big long walk 😱😂😂😂

[Beansheen in reply to Hidden]

Indeed!🤣

[sloan44 in reply to Hidden]

Hi. The Zonisamide didn't agree with me so now taking Aptiom. Started on 200mg daily, now at 800mg. The after effects of memory and tireness really hit, need to push myself to exercise. Still taking Dilantin, been for 50 years but neurologist wants to ween me off it. Taking B-12 and Vitamin D3 since both were way low, but those were an after effect of the Dilantin. Take care.

[Hidden in reply to sloan44]

Hi, haven’t heard of Aptiom is it a fairly new AED ? And more importantly does it work well for you? Other than the side effects !! Don’t know anything about Dilantin either !

And you take care ❤️ have you also tried B6 ? I’ll try anything 😆. Keep me posted on your new one. Xx

[sloan44 in reply to Hidden]

Aptiom came out about four years ago. Think its one of the latest for left temporal lobe seizures. Expensive but is helping (Thankful for insurance) Had a couple seizures since taking it but that's an improvement. Dilantin is one of the oldest anticonvulsants in the U.S. also know as phenytoin. I think my mom gave me B6 when I was young, not had it since the 70ds. B6 is for normal brain development, and Dilantin can mess with the brain so I may try it again!! Thanks! Take care and will keep you posted.

[sloan44 in reply to Hidden]

Hi. Hope you have been well. I'm now on Vimpat along with the Aptiom. My Doc has slowly weened me off of the Dilantin for good. Aptiom and Vimpat are very expensive drugs. Without insurance I wouldn't be able to afford them. If you're in the UK you may not have access to both of those medications. Take good care.

[Hidden in reply to sloan44]

Hi, it’s a slow job coming off a drug & starting on new ones. Hope they work for you & feel better. I’m still taking my B6 plus the same meds Keppra, lamotrigine & Clobazam. Keeping myself busy, trying to play Padel Tennis it’s addictive- great game 👍 give it a go if you haven’t. Assume you play it over there 😄 not sure where about you live- it’s a big country 😄 Take care

[sloan44 in reply to Hidden]

Yes, very slow. Had a grand mal last week coming off the dilantin. Thanks, hope the new med go's well..the medical herb helps 😜. Yes, there's a Padel tennis court 5 minutes down the road from me here in Florida. Walk my dog past it daily and It's always in use. I would love to give it a go, need to find a partner some day. Take care!

[Nishanthi]

My daughter bad reactions of weakness.