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Old 04-18-2012, 08:06 AM   #1
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Question C.F and Epilepsy

I am on the brink of a major C.F relapse after managing the condition for twenty years. First time around I was bed ridden and unable to sustain a normal life style and/or work for eighteen months. then with the help of B12 and a very understanding work place I slowly got back on my feet (so to speak). I now feel myself going backwards and downhill for the past two years. I have see my doctor who is understanding but not offering me anything in the way of med's. I have asked for B12 but this has been turned down, not sure why? could it be the Epilepsy med's. I am on making me tired? does any one have both these conditions together as well as me. I am very anxious to not get as ill as last time. Currently I am at the stage of only working four hours a day then needing a two/three hour nap. I struggle to go out socially in the evenings and have to pay someone to exercise my dogs!! Has ANYONE got any advice to keep me going

 
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Old 04-18-2012, 08:55 AM   #2
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Re: C.F and Epilepsy

I'm sorry you are seeming to slide down a slippery slope! I self-treat with sublingual "No Shot" B12. Not all sub-lingual B12 works. I get the kind called Methylcobalamin. I recommend not taking supplements at the same time as any medication. Read the medication warnings and interactions.

Anticonvulsants reduce B12 levels. There are as many possibilities for Chronic Fatigue as there are people.

Is there a very clear reason you are on Epilepsy meds? I'm not at all saying to go off the med, esp. since it must be slowly tapered off. I am saying maybe it needs to be re-evaluated by a second or third opinion.

It seems to me that anything that does no harm should be continued or tried. I think doctors become lazy, or don't want to take responsibility. They are just human, so they can become judgemental that we are malingerers, or allow themselves to be pressured by insurance companies to cut costs. I find that we must be our own best advocate and researcher.

Unless you have a very clear diagnosis with very clear test results you can fall through the cracks as far as treatment goes. So if you can get new doctors that really take interest in your case, getting proper testing, I hope you do that. Just acting like they care isn't good enough. IMO, the B12 should not have been stopped without clear reasons based on test results. Let us know how this goes.

Last edited by jillian4; 04-18-2012 at 10:03 AM.

 
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Old 04-18-2012, 11:20 AM   #3
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Re: C.F and Epilepsy

Thanks for your reply, I am on epilepsy drugs as I was having grand mal and petite mal seizures, loads of them, just after my recovery from the first C.F episode. however there has never been any clear indication as to the reason why! as all brain scans ect. proved negative, so I was started on anti convolsant drugs to help. this was fifteen years ago ish. I have tried to reduce dosage at several points throughout this time but have ended up feeling unwell. about four years ago my dosage was increased due to slight petite mal seizures reoccurring and now they are at max. allowed.

I think B12 may have stopped being given at same time of epilepsy treatment started.

trying to get back on it now because I feel like I have new episode of C.F

thanks for your info. will go back to doctor for more advice.

 
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Old 05-30-2012, 06:02 AM   #4
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Re: C.F and Epilepsy

Did you ever get back on B12? I am amazed how many docs use it with good results then just stop giving it. I don't understand that reasoning.

How are you doing?

 
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Old 05-30-2012, 10:37 AM   #5
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Re: C.F and Epilepsy

thanks Holymolly, I am still not on B12, I am really just living day to day, I am feeling a bit better, not sure why? and seem to have platoed. so at least I now can manage my days a bit better.

 
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Old 05-30-2012, 02:42 PM   #6
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Re: C.F and Epilepsy

That's good! Keep on keeping on!

 
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