What On Earth Is Going On?

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Regular Member

Date Joined Dec 2004
Total Posts : 93
   Posted 5/4/2008 11:35 AM (GMT -7)   
I try not to use this site to unburden all my problems. But events over the past few months have become baffling, basically, and any advice would be appreciated.
I've had epilepsy for about 8 years. Currently I'm on Tegretol, which has converted my grande mal seizures into partial complex ones, and Keppra. The Keppra seems to do nothing whatsoever, but the consultants like it so they keep upping the levels. Which is fine, I guess. Except that a few months ago I started having periods of extreme fatigue and some heart palpitations. These happened to begin just before a routine consultation with the neuro nurse, so I asked her if my medication might be responsible. She said, no way, not on your life.
My GP arranged blood tests, which showed my iron levels to be ridiculously low. (And something to do with folic acid which I still don't understand). So I was put on more medicine and for a time this seemed to work. The fatigue then returned, however, and keeps coming and going. The last time I saw her, my GP suggested one thing messing up my blood might be... my epilepsy medication! And now I've received a letter from the hospital recommending I be put on another type of medication. So there seems to be 2 sets of doctors pulling in 2 different directions. To make it more confusing, my GP seems competent but is essentially an amateur when it comes to epilepsy; whereas the neuro dept. are on their home turf but have proven themselves, time after time, to be a bunch of jokers.
Furthermore, my GP says my alcohol consumption is worstening my seizures. I drink a little more than I should but not to an absurd extent. And I don't binge drink, if only because I don't get invites to the right parties. Regardless, my GP says I should abstain completely. I guess I could, but it's not something I especially want to do; especially when everything I've read suggests sensible drinking is OK for epileptics. The neuro department said it is as well, so that's another way in which they disagree with my GP.
As said, any advice on alcohol, medication or Who To Trust would be appreciated. It's getting so that I'm leaving each medical appointment with an entirely new set of instructions.

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Date Joined Mar 2003
Total Posts : 10405
   Posted 5/4/2008 12:10 PM (GMT -7)   
Andrew, I don't have epilepsy, but have been close to a number of people who do. Try starting by reading the information at this link, then I'd suggest following some of the links for more detailed information. Good luck.

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Date Joined Jan 2006
Total Posts : 2408
   Posted 5/4/2008 2:00 PM (GMT -7)   

Hi there,

I can understand why the GP is asking you to abstain but in my opinion that is a little extreme. Any medications that you take get broken down (either completely or partially) by your liver. If your liver is breaking down tegretol and keppra already, having to break down alcohol as well will place a strain on your liver which you really dont need. That said, 2-4 UK units (1-2 pints of standard beer/lager, 2-4 single measures of spirits or 2 glasses of wine) once a week will not do much harm. Thats an unprofessional non-medical opinion based on what I know of myself and what I have learned from other medical professionals.

RE: Who to trust... generally I go with the one who is more specialised. Normally in the UK, that is a neurologist although I am aware that in the US (and maybe in other countries!) you can get epileptologists. If you think that you are being led in a circle, it might be worth getting a second opinion.

Hope that helps a little


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Regular Member

Date Joined Dec 2004
Total Posts : 93
   Posted 5/8/2008 1:56 PM (GMT -7)   
Thanks for the replies. Cutting down on the booze seems a sensible idea at least. Got another blood test next week. So I'll see what the results are, what my GP says and try to make some sort of sense of it all.

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