Has anyone, here been diagnosed with Hughes syndrome ?
I developed Epilepsy and only in the last few years it was discovered that I had Hughes syndrome ( sticky blood)
It maybe worth taking a look on the site on here I still have epilepsy but my memory fog has gone, long term memory is still bad thought.
Good luck
Karen
I've just read your post about Hughes syndrome and looked at the info on the net regarding it as I suffer from severe memory loss in conjunction with my epilepsy. Thank you for the suggestion of looking at it. From quite a few of the "signs and symptoms" etc that they list, I am pretty sure that it does not apply to my particular problem but it is very interesting nevertheless. Do you think your LONG term memory loss is connected to your epilepsy itself? How long have you been epileptic? What kind of medication are you on?
Hi I do think my memory loss is connected to epilepsy, but I feel my epilepsy was caused by the brain damage I had due to the blood clotting problems.
It is horrid I think just like a jigsaw but with pieces missing. I find it hard when I am told something that I should remember but don't it makes me wonder what else there is
I am on lamotrigine 300mgs twice a day
Along with several others I have found betahistine has really helped with dizzy spells
Karen
Sorry DaisyD, I have just seen your post. I understand 100% what you are talking about in terms of the "jigsaw" - that is a very good way to describe it - I don't think anyone who doesn't have this problem can really have any idea of HOW dreadful it is. Like you, every time I am told about something that I have no memory of happening, I realise that there is a horrifically long list of things I don't know that have forgotten - things just come to light a wee bit at a time.
I think I may have said in another thread that my feeling is that I don't really know who I actually am anymore - if that makes sense - there are such huge chunks of my past that are missing.
I am on 200mg of Lamotrigine twice a day.
Margaret
Hi. My son,age 36. has memoryproblems. Has got worse since operation at Neurological Hospital, London, He had the part of brain removed that was the cause. That was 2 yrs ago, and since then has been seizure free. Titanium plate wasput in 1yr later. His quality of life has improved, and can enjoy family again, as he has a daughter of 5yrs old.He has had since he was 18yrs old. My father, myself, my 43 yr old niece and he suffer with it. Good luck to all who might go down this path,as life is transformed his life
