Hi there, been a while...

I'm taking 600mg of Tegretol and 400mg of Neurontin they were doing ok but now they seem to have stopped working well. I'm having photosensitive seizures, complex partial, simple partial (mostly simple partial), and myoclonic.

At night I am apparently having severe myoclonic (poor hubby), and am having physical problems and pain because of it.

I've just had another MRI done and am going to the Dr on Saturday to discuss it. I have so many symptoms that don't fit into the epilepsy mould, so I'm hoping she can help me to work out what is happening. Any help here?

TY
Rhian

Hi Rhian,

What your need to do is have a special e.e.g. done where they will flash different color strobe lights one at a time to see what colors are triggering your sz. this is what they did with me a few yrs. ago and they found out what colors were causing the sz.
Just like you I have complex partial, simple partial absence and at one time I was having myoclonic sz. That's when I found out that it was the neurontin triggering the sz. once I got off the neurontin my myoclonic sz. stopped.

If I may ask have you had a sleep study done? You might have sleep apnea and that can lead to sz. Start taking vitamin B12 and 3 times a day put a cold washcloth on your face and neck this calms down the neurons in your brain so they don't fire up and trigger sz. I was in a sleep study when they did this and it worked great.
Here's wishing you only the best and May God Bless You!

Sue

Hi, If you are not under the are of a board certified Epileptologist at a Comprehensive Epilepsy Center, getting to one soon is the best advice I can give and where your care should be directed. You may know this, but it is true. I am not sure why you are taking neurontin for partial seizures. IT didn;t do a thing for me. There are newer and more effective meds as well as other treatments that have a better chance of stopping your seizjust a general neurologist. Has more training and education in epilepsy) that can offer you that. Please get your PCP to do the referral to a Comprehensve Eilepsy Center. It was the best decision I have made. I have not lost consciousness in 12 years! Tattoo

Hi Rhian,

I agree with Tatoo all the way I've seen many different neurologists over the yrs. and they never helped me as much as my Epileptologist who works at an Epilepsy Center. Thanks to my Epi. (epileptologist) I've had 2 brain surgeries to help reduce my sz. and I take a lot less AED's (sz. meds)

One thing I forgot to tell you is that you should ask your Dr. to do a DNA test on you. By doing this the Dr. will be able to find out what AED's will help you the most with the least side effects. It was through DNA testing that I found out I was drug resistant. Also while taking tegretol stay away from grapefruit or grapefruit juice because the enzymes in the fruit will mess up the tegretol and will trigger sz. Also stay away from nutra sweet because it has been proven to trigger sz. also it causes more electrical activity in a persons brain and fires up the neurons leading to sz. I found that out the hard way when I used to buy diet soda and drink it then the sz. started up.
Here's wishing You the best and May God Bless You!

Sue

I'm taking Neurontin for nerve pain and I was having TC earlier in the piece. I had the dosage reduced from 1200mg a day to 400mg a day and Tegretol reduced from 1200 a day to 800 a day. this hasn't affected how the myoclonus has been. I know I'm photosensitive epileptic and bright white sets me off.

I'll talk to the doc on Saturday about new meds anyway. I have bilateral myoclonus but I had it for 2 years before I took the Neurontin.

I am happy to get off it though especially if it doesn't help...

Thanks everyone for your advice and support I appreciate it )O(