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Mitchell1972

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So here I go. I hope I am in the right forum and somebody might read this and have some thoughts...

Five years ago I had open heart surgery (twice) and had a mechanical heart valve put in to repair a bicuspid aortic valve. Soon after my recovery I noticed I was having these funny spaced out feelings that would only last a few seconds and really didn't affect anything apart from feeling a bit surreal , spacey (hard to explain!)

I put these feelings down to new blood pressure tablets that I was given to protect the valve.

Anyway, eventually, these episodes became more frequent and then one morning I had a seizure, bit my tongue, convulsed and went to hospital in an an ambulance, semi-concious.

I was diagnosed with having non epileptic partial absence seizures because, by chance, I had one of these floaty feeling whilst hooked up to an EEG machine!!!

However, I have been speaking with my cardiologist and he says I should have also had a MRI and an Angiogram, which my neurologist never mentioned, he just gave me the diagnosis, prescribed me carbamezapine, and sent me on my way.

Sure enough, the tablets seemed to do the trick until the other day, I had one of these feelings again :ponder:

Any thoughts, ideas?
 
So while you had this seizure, the EEG didn't pick up any abnormal waves? I'm a little confused--you say you were diagnosed as having non-epileptic seizures but they put you on a seizure medication and it sounds like it has been overall effective?
 
Yes I hear you, I am confused too! The neurologist didn't mention abnormal waves, but said he could tell I was having a seizure. I forgot to mention that I had a CT scan and it showed a bleed which could be from an old trauma or due to the warfarin therapy because of my valve. He said it was difficult to say. But I also remember the words 'non-epileptic'. A few inconsistencies I think, maybe he put me in the too hard basket? Anyway you're right, until the other day I had not had any episodes in almost a year...
 
In either case, they gave you carbamezapine five years ago for this, and so I assume you have still been seeing a neurologist for these five years? You should mention this new breakthrough event to your neurologist and also try to get clarity on whether you had an actual seizure. Sounds like it to me but it also sounds a little unclear!
 
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Thanks and yes I will.

No I have only been on the carbamezapine since the hospitalisation and subsequent investigation a year ago. Before then I had put down these floaty feelings to BP tablets and so had ignored them!

I will post here what he has to say about the recurrence...
 
Mitchell1972 said:
So here I go. I hope I am in the right forum and somebody might read this and have some thoughts...

Five years ago I had open heart surgery (twice) and had a mechanical heart valve put in to repair a bicuspid aortic valve. Soon after my recovery I noticed I was having these funny spaced out feelings that would only last a few seconds and really didn't affect anything apart from feeling a bit surreal , spacey (hard to explain!)

I put these feelings down to new blood pressure tablets that I was given to protect the valve.

Anyway, eventually, these episodes became more frequent and then one morning I had a seizure, bit my tongue, convulsed and went to hospital in an an ambulance, semi-concious.

I was diagnosed with having non epileptic partial absence seizures because, by chance, I had one of these floaty feeling whilst hooked up to an EEG machine!!!

However, I have been speaking with my cardiologist and he says I should have also had a MRI and an Angiogram, which my neurologist never mentioned, he just gave me the diagnosis, prescribed me carbamezapine, and sent me on my way.

Sure enough, the tablets seemed to do the trick until the other day, I had one of these feelings again :ponder:

Any thoughts, ideas?
Click to expand...
Hi Mitchell and welcome to the forum,

Sorry to hear about your heart operations but I hope you feel better.

Regarding your EEG I had one not long back for just a check but they wanted me sleeping..well I thought I'd dosed off and when they woke me I'd actually gone into a partial seizure and the EEG never picked nothing up either.

If you don't mind me asking how long you been off warfarin as that can cause seizures..as I was on it myself a few years back for DVT and to help you also you should be taking asprin.
 
Hi Terry,

Thanks for your feedback. Did you mean, "How long have I been ON warfarin? Because I have been on on it since the heart operations and will be forever. My blood needs to be thin so clots don't form around my mechanical valve.

That's interesting to hear about warfarin usage causing seizures! Who told you this? Nobody has ever mentioned that to me!?

Mitchell
 
Hi Mitchell,

I do know some people who have to take it for life but they pulled me off it and gave me baby asprin 75mg to work with my seizure meds etc and to help my stomach.

It was mentioned to me by the specialist treating me plus making them worse and when it didn't work like it should they pulled me off it straight away and the asprin was then given and I have Hughes syndrome blood clotting of the blood and the asprin is working on me.

I'm adding one link which is a PDF File on warfarin and another about warfarin and seizures...but it's worth asking your specialist about to make sure your not at further risk.

http://www.ehealthme.com/ds/warfarin+sodium/seizure+disorder

http://www.facey.com/education/fastfacts/Warfarin - Coumadin & Treatment.pdf
 
:gnite: Mitchell as the times getting on here and I hope tomorrow brings you a better day :)
 
Hi Mitchell, welcome to cwe- it's awesome here :)

If you've never had an MRI, that will be worth doing. It's very strange that your neurologist didn't want that for you- but then if they were already convinced one type of treatment (carbamazepine) would sort you out, and close your case, that's quite common behaviour. They're not always the sharpest knives in the draw..

It could well be warfarin usage, but since it's been a few years since- I'd still get a full range of scans done now, and a reassessment of your condition- just in case the carbamazepine is not actually doing anything (has it's own glut of side effects) as you don't want to be taking it for nothing..

Non-epileptic seizures are very hard to diagnose, and even harder to treat. From the actions of your original neurologist, I shudder to say, but it seems like they just put you on one of the standard (first try) meds without indepth testing, to see if it worked and then left it at that.

If you've no more seizures, then to them it's case closed- just you have a life time of extra meds to take.

Seriously- get your situation re-checked. If it is the warfarin, or you do have E- fair enough, but I wouldn't be happy with that poor level of medical treatment.
 
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Thanks SlimBlue

I have been thinking the same. I don't want to take carbamezapine for nothing forever.

Regards,

Mitchell
 
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