Seizures

[edgewater100]

I would like to know what medicine you take and side effects please

Thanks

[MaryF Administrator]

Hi there, I am on Aspirin, and other medication to control my mix of autoimmune disease, others on here will be on anticoagulants, a wide range. It is vital that your anticoagulation is the right one for you, as if not that might indicate problems with seizures? What are you taking currently and are you under one of our recommended Hughes Syndrome/APS specialists? MaryF

[edgewater100 in reply to MaryF]

I am in the US, I have been diagnosed with Lupus and APS and am on Plaqunil a baby aspirin and Warafin. I try to keep my INR 3.5 to 4 I self check weekly, the Lupus has been in remission for several months but the APS is still a problem, mainly feeling un balance,crossed vision,de javu,migraines.

I have a neurologist, hematologist, rheumatologist and cardiologist.

I had an episode recently where both eyes vision crossed and my eyes moved back and fourth very rapidly at this time my INR has dropped under 2. It took 2 days to get over. I am so sensitive to drugs and so am very reluctant to use anything for the seizures that can give me more problems with the side effects such as SSRI drugs

Any suggestions would be appreciated

[daisyd]

Hi I am on lamotrigine 300mgs x2 a day for epilepsy along with Warfarin and many others, thought the lamotrigine was causing memory problems as I had a useless Neurologist at my local hospital I didn't get treated with Warfarin like I should have been.

The Lamotrigine make me sleepy and not all there but that could also be my sticky blood

[KellyInTexas Administrator]

I have temporal lobe epilepsy with my APS. ( discovered in spring 2012.

I take topirimate . 300 mg daily. 150 in the morning, 150 at night.

Started on lamictal but developed Stevens Johnson’s. Then went to Dilantin. Then to vimpat.

Then the aps diagnosis came. The topimax was used because it’s best for migraines as well as seizures. I don’t know what it does to INR because I was on it when I started the warfarin.

Have you gave your eyes checked for optic nerve neuropathy? ( optic neuropathy?)

I’m really struggling with this.

As far as other medications : do you mean for seizures? Methscolopmine bromide. It’s a “ booster “ anticonvulsant and helps with dysautonomia.

I’m on plaquinil as tolerated - trying to titration up. About 17.75 mg warfarin per day, INR target of 4.0 , magnesium, methylated folic acid 1 mg, pravastatin 20mg, xr niacin 250mg, co q 10,

Bridge with enoxaparin/ Lovenox when sub therapeutic.

[Lind8]

Hi I have APS & temporal lobe epilepsy I take carbamazepine 400mg x 2 daily & wafarin, I have taken them for about 30 years, it does make my Wafarin harder to control but it has stopped my epilepsy. I do not seem to get other side effects from my carbamazepine.

I have had a lot of problems with double vision, balance, migraines but eye hospital say this is due to my APS.

I have self testing INR machine so can test my INR at home as it is never stable. Machine has really helped. Really hope you find something that works for you .

[justlymostly]

I have been on carbamazepine(tegretol) since I had 3 grand mal seizures in 1990. At the time my dentist said it had the least side effects but I don't remember whether it was ever discussed with my rheumatologist at the time. I still have an "electrical flare" according to my last scan so stay on 100 mg twice daily. Best wishes.