Memory / Epilepsy/ Hughes syndrome

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daisyd

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For over 10 years, I have had

Epilepsy: vacant spells, Minor seizures approx 10 years.Controlled (almost) On lamotrigine 300mgs twice a day. Memory has been a problem, I thought was side effect from medication.

Until I had a heart attack in October. 2 weeks 2 days after my 52nd birthday, anyway a locum doctor decided to test me for Hughes Syndrome blood clotting problem ( Thick blood)

I have been told I have Hughes syndrome please check it out on the Web, as I wish I had known about years ago.
(Sometimes people suffer epilepsy symptoms.)


Karen
 
Hi Karen --

I hope you are doing well since your heart attack. Has your treatment changed as a result of your new diagnosis? Will you be going off the Lamictal?

Best,
Nakamova
 
I am still on Lamotrigine I haven't had any fits since going on clexane to thin my blood. on thursday I am starting on Warfarin. ( I use to have one a month)

Blood test need to be done frequently, as when the blood gets thick ,the symptoms start to come back.
I have yet to get my appointmennt through for the neurologist. Who will realise I am not happy. He should have known about this syndrome.
Karen.
ps:I am still a bit tired from my heart attack but otherwise brilliant ( Well worth having one)
 
Warfarin can potentially interact with Lamictal, so I recommend that you check with your regular doctor, neurologist, and/or pharmacist to make sure that's take into account.
 
Daisy,
I do have Hughes Syndrome which is generally referred to as antiphospholipid antibody syndrome anymore. My neurologist speculates that my seizure was caused by this disorder but, since I haven't had a documented blood clot, I am not on blood thinners. Instead, I take daily low-dose aspirin and plaquenil to thin my blood and control the antibodies. It seems to be working. I still take my anti-seizure medication but haven't had one since starting it and the other treatments I described. I think a lot of people still don't know about it but it is becoming a more commonly diagnosed autoimmune disorder. I hope you see a rheumatologist for your symptoms -- they tend to know the most about the syndrome.
 
Thankyou
I was on asprin but I am now going on warfarin as I have previously had a DVT, while pregnant. Low birth weight premature baby (who is now 29 and going to have his own baby soon)
My heart attack was also due to a blood clot. luckly I don't have any problems with my joints. So I am just being seen by the Neurologist, Cardiologist and Haematologist.
I really find it hard to beleive that the doctors didn't diagnose me with Hughes syndrome and also that its not well known.
It would have saved the NHS thousands of pounds. As well as saving me from all the stress and depression.
Luckly I have a wonderful Husband and children.
 
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