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Anorfolk

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Hi everyone
I have had epilepsy since I was 14, now 45 (shhh)! I have had many grand mals in my life. The worst time was during my time at uni. I was having some days where I experienced 3 seizures and at least had one a week. I was taking 3000mg epilim and can't remember how much tegretol! Anyway, that obviously wasn't working! I started neurofeedback and low and behold, I reduced my dosage to less than a third of what I was taking and I was in control. No more overdoses! Anyway, had a baby and that went well. After that the doc changed my meds to epilim and lamictal. That was 8 years ago now. I've had hair loss though for the last 2 years at least. It's really thin now. Hoping there may be others with the same so I can fix this problem.
Cheers
Arlene
 
Hi Anorfolk, welcome to CWE!

I'm thrilled to hear that the neurofeedback made a difference for you! (I'd like to try it myself sometime). Have you continued to do neurofeedback from time to time, or was it a one-time thing? Any chance you might be able to revisit it in the hopes of reducing either or both of your meds?

I had hair loss when I first went on Lamictal. Eventually that side effect went away, quite possibly because I slowly reduced my dose from 250 to 150mg/day. I have also been taking a biotin supplement on and off. Biotin (also known as Vitamin H) is a nutrient which plays a role in healthy hair and nails, among other things. People who take anti-seizure medications long-term are more likely to be deficient in it.

Best,
Nakamova
 
Yes, I am considering more neurofeedback, purely due to the hair loss. I had around about 17-20 sessions for epilepsy and they are approximately 20 minutes each. My aunt recommended every two weeks but could be every week. So it's not something done in a short amount of time but well worth it. She doesn't believe that she could fully cure me of epilepsy due to the severity of it in the first place but she has had success with patients on lesser scale. It's not something you need to do forever but can have extra sessions if you feel the need. I haven't had any for approx 7-8 years. I have had no need to see my specialist or increase my medication. I have made an appointment though to see the neurologist so I can request a different medication. I am never worried about missing one of my doses when I run out too. You should definitely try it.
I had used the Lens method of neurofeedback and had brain maps from time to time. There are other methods available, just up to your physician to decide which one suits. Let me know how you go should you go down this path. Cheers.
 
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