Do you have Hughes syndrome and epilepsy - Hughes Syndrome A...
Do you have Hughes syndrome and epilepsy
126 Voters
I voted yes. I have a seizure disorder. I was told that it was the result of a small stroke that I had many years ago. After being on Tegretol for a year I went off it very slowly and there was no improvement I still had the seizures. So I went back on it. Tried again a few years later (anything to reduce the number of pills I take!) But no.....wrecked a vacation with seizures. So that was it... have been taking it for about 20 years now and no issues.
I was diagnosed with peti-mal epilepsy after strokes since being put on warfarin have never had any more been 14 years.
I take both Tegretol and Topamax to control my seizures. Simple partial seizures, and the meds control them quite well. Never associated them with APS before. This is very enlightening.
I have had funny turns for years that i thought seemed like focal epilepsy. Still undiagnosed officially. APS thread following up TIAs
My husband,who has sero-negative APS,has epilepsy. He takes sodium valproate. It's under control with this.
I was Dx with Epilepsy beford hughes however once i started blood thinner the sezuires stopped and i have been sezuire free for 18 mouths now. I wonder if it is epilpsey or weather it is just part of the hughes syndrome. I am going to see the neruo again in september and i am going to ask for all the anti sezuire medication to be removed as i am interested to see what happens.
I think this is an area we need to look at as a point of interest.
After early brain aneurism operation,5 years later had one /off early morning Grand Mal seizure, put onto Dilantin with virtually no checks, until 16 years later had another bleed overseas, resulting in needing speech therapy for 7 months. Still no Dilantin checks,then 9 years later I told doctors I was having another stroke, eye, reading etc. Didn't believe me,off Dilantin 2 years later. More symptoms meant own research until I found Hughes Syndrome Forum help in 2007, was an eye stroke, and reached London Bridge Hospital in 2010 with definite APS d/x. 7 year old grandson had early morning Grand Mal 18 months ago- appears Petimal also -parents told just wait. I'm now on Plavix mid-last year.
Hi I have been treated for epilepsy for years,I only get small vacant spells I think it was caused by small Tia's
I Have noticed that I get a fit after flying,also getting stressed I haven't had one for over a year now.on antidepressents as I don't get stressed about anything anymore. I also have got ill health retirement from work. I am on lamotrigine 300mgs twice a day.
Karen xx
I voted other. When I was a child I was having grand mal (tonic clonic) seizures. Deapite spending a week in the hospital doing a battery of tests they ruled out epilepsy but could not find a cause for the seizures They happened up until I was about 16 then stopped. I was never on any medication for them.
I have had seizures but doctors never understood why. I take topamax for severe migraines...not seizures! weird...
I am on Topomax for partial complex (temporal lobe) seizures. I was diag 4 yrs after my APS diagnosis.
I am on Topomax after a seizure only the 1 lasted 4.5 hours and put me in a Coma for a week, only ever had the 1 though, 3years after stroke and APS diagnosis
I am on Topamax for focal seizures specific to my right leg. Recently I have had partial seizures and my neurologist has added Keppra. 30 years ago I also had some non-specific seizures during a period of 4 years. At that time I refused to take the recommended dilantin. I know feel this is all related to APLS since I have never had epilepsy.
I don't have epilepsy but I do have a severe movement disorder that often manifests in a similar fashion to seizures, confusing many doctors and hospital staff.
A few days after my stroke, I started having seizures. I started taking dilantin and then was changed several times due to side effects. Doc said I had complex partial seizures and also seizures that didn't make sense to him. I have had seizures where I stopped breathing while in the ER. Hopefully i'll never have another since I started coumidine.
Not sure if I should vote in polls this far back? Or if anyone reads them when they have been inactive for so long. I voted no, as although I've had quite a few epeleptic fits (now just once a year)
I had lots of tests, and my then GP said they were epeleleptic episodes NOT epelepsy. I've narrowed the cause down to a combination of too much sun, too little water and too little sleep. I get about three hours notice that its going to happen and while there is nothing I can do to stop it , that's enough to find a safe place. People seeing me in this time assume I'm very drunk or on drugs, but my mind works I just can't force my body to. The first few were really bad, but now as I know to empty my bladder vomit if if just eaten and lie in a big bed its not to bad. The spasms frighten other people, so I try and hide away before they start. As I say, it only happens about once a year though and is probably not epelepsy.
Wow! Yes! My excuses for my bad english.. i have.. many years migraine and a light form of epileptic i'm sure! because my hand and arm starts shaking and than i have no feeling in my tong and mouth and than i am away for a few seconds but i don't fall on the ground.. no doctor listen to me ... But for my migraine i got a new medicin topiramat and now it's getting better with the attacks also!! i'm so glad with this poll because sometimes i feel so sad that doctors doubt on the things i tell them thank you. XXX Gitta.
