I see some disturbing visions and there are messages attached telling me to do harm to myself.is there anyone else out there who has exsperienced these types of seizures?
Ive lived with aps for 12 years now,I... - Hughes Syndrome A...
Ive lived with aps for 12 years now,Ive had a stroke in 2001,following the stroke my epilespy has got worse,the seizures are terrifying....
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popshaw21
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10 Replies
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hello,thankyou for your message and I have been seen by a neuroligist on a regular basis and have tried many different medications which sadly have not worked for me.I feel very alone with these seizures and I'am at a loss as to know how else i can cope.but thankyou for your reply to my message.
regards
dennis x
My son had seizures after meningitis. He is on Tegretol and has not had any while on that. What are you on? My heartfelt sympathy. Keep well.
Seizures are indeed frightening. My son used to make terrible choking sounds and once he choked up about a plateful of mucous (sorry about this bit) .
Hi I am sorry to hear about what you are experiencing 
What does your neuroligist say about these types of seizures?
I havn't heard about them before..........but they need to get to the bottom of them & whats causing them as it is obviously a scary experience for you, you need to tell your gp everything & see what they can offer in help as this cant keep happening, they need to refer you to someone that knows more about Hughes for example too, do they not think it may be a reaction to any medication you may be taking?
I hope you get some help with this, keep in touch & keep us updated.
MaryFAdministrator
Yes a referral to St Thomas' would be a good idea, and welcome by the way. I hope you can get some sort of reassurance about this and guidance, please let us know how you get on. Mary F x
Did you know you had Hughes' when you had your stroke? Or was it after you had stroke, you had found out re. Hughes'?
I have the same thing e.g. stroke then seizures. I don't have any visions.
popshaw21 in reply to
hi there,I had know idea I had hughes syndrome untill i had my stroke,I knew something was'nt right as i was suffering a lot of migrianes and double vision.I also was exsperiencing deja vu which at the time the doctor said it was due to the migraines.since having the stroke the seizures got worse and then i was admitted to a specialist hospital in bath for rhuematic diseases who found i had hughes syndrome.I'am now under the care of a rheumatologist at my local hospital who has given me 2 infusions of a new immunosurpresent called "rituximab"which will take sometime to get into my system.Also recently I have lost the sight in my left eye due to a condition called "Anterior optic neuropathy"and now my right eye is starting to go the same way.the only treatment for this condition is steriods which will hopefully stop my right eye getting worse.thankyou for your message and keep fighting.
in reply to popshaw21
Hi Thanks for your reply to my questions.
Yes, I know rituximab. I'm surprised you weren't put on steroid for clearing autoimmune flare up. I have a similar eye problem as well.
Thanks for sharing your experience. I feel like I'm not alone battling with this all.
Best, xx
Hi. I had a stroke 2 yrs ago and then was diagnosed with seizures. I was tried on about 10 dif neuro meds and they seemed to work for awhile and then make my seizures worse. So I stopped taking them. Just recently I was diagnosed with SLE and APS. I talked my neuro into referring me to a hematologist where I finally began accurate treatment: Coumedin. My migraines, tics and seizures are gone. See if you can find a blood disorder doctor s to help resolve your issue. Best of luck to you. PS- I'm his only patient with APS so I referred him to this site.
hi,I'm happy to hear you have managed to find a way to clear yourself from the seizures and migraines.when I had my stroke back in 2001 I was treated in the "royal national hospital for rheumatic diseases" in bath who where brilliant and had a good understanding about "hughes syndrome".After spending 2 weeks there and had been treated with all the appropriate medication,alot of my symptons had improved except for the seizure's for whom I too have tried every anti-convulsant medication and none have worked,there are some new medications that ive not tried yet.I'am currently seeing a rhuematologist at my local hospital,and have just completed an infusion of a more potent immunosupressant called "rutuxamab"its early days to notice any improvement but it will take sometime before it kicks in.so for now I will carrying on coping with these disturbing seizures using my many strategies.Thankyou for your message,and keep up the fight.
regards
dennis
Hello i have only experienced this once. I was petrified of these hallucinations, i was not on any medication at the time that could have induced this.
On a recent visit to the optician my eye sight had gone down plus i had red sore gritty eyes so now awaiting a hospital appointment in June.
The more i read the more i am learning from others. I am an older lady with two children, one Grandaughter & two small Great Grandsons, how nice to hear you spent some quality time with your son & grandson over xmas.
Have you ever heard of a micro array test ? This is something that i heard of a couple of weeks ago so still looking into it at the moment, i shall let others know if i feel it is beneficial.
I had a 'very bad turn in 2011' I have gone downhill rapidly ever since.
I started my investigations at St Thomas & St Marys in London but now attend the Churchill in Oxford.
It is wonderful with all that you have been through that you can still laugh. Bless you
