Seizures due to lack of oxygen to my brain

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countrygirl617

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When I was 2 1/2 I got the rotavirus, it caused lack of oxygen to my brain. I was misdiagnosed from a DR. and it took too long to get me to a diff. hospital. Now I am epileptic, curvature of the spine, corticlal vision impairment, oh yeah, severe brain damage. I can't speak, walk, but can use my right arm a little. I am on phenobarb 60 mil. trileptol 750 mil. twice a day, keppra 500 mil. twice a day, neuronton 100 mil. 3 times a day, topamax 50 mil. twice a day. I still have seizures daily. Will somebody plz help me! I am 18 years old now by the way. I would like to talk with others who have a similar situation.
 
Hello and welcome countrygirl617,

There's a lot of info and support on this site, plus places to vent and chat. Your situation sounds especially difficult, to say the least. All those meds, and still plagued by seizures. Some folks on this site have had success with neurofeedback in reducing their seizures -- maybe that's something that work for you too.

Best,
Nakamova
 
I don't understand the amount of medication and still having seizures. I would rather be med free if they did not do anything to control the episodes. So many other med issues can be caused by the drugs that in the long run you would be better off trying some alternatives.
IMO
 
Hi Countrygirl617,
Welcome to the site. I am new here myself. I don't have many educated ideas for you but I certainly empathize!!

It does sound that potentially your medication mix maybe needs to be re-evaluated. I'm not a Dr and I certainly don't know your case but it sounds almost like they keep throwing meds at you and just adding on top of what you already have. Has anyone ever tried to take you off some of them? I have read that sometimes people need more than one medication to control things but it seems it might be counter productive to be on more than two anti-seizure meds at the same time. I have read some medical journal articles that say monotherapy (one anti-seizure drug) is really the best if at all possible--especially for women.

I hope you get some answers and some relief. I can only imagine how tough your situation is.
 
Welcome CountryGirl617 !
I was also very sick as a little kid (18 months) and a lack of oxygen did me in, too. However, I am left handed, so your right handedness would be a challenge for me. That's one up on me.

Your 18 years old, too? Can we please trade ages? Do you take any college on line courses? Personally, I am better off when I'm active both physically and mentally. And, I have an 'unofficial' therapy dog who's totally devoted to me. My dog came from the pound, in fact, but she's worth her weight in gold (she gets a lot of treats, too!).

That sounds like quite a cocktail of meds there. What drugs are not on the list? How about Mysoline or Lamictal to name a few. There is also a brand new drug out there that some people on this forum are taking now.

Anyway, maybe we can locate a few more methods to help you maximize your quality of life. I do stress management by keeping as busy as possible, hanging out with my dog (devoted and clingy as a barnacle), and drawing. Music is a great method to help my stress level. I have a few HUNDRED CDs of all types of music with a 6 CD player.

Do you have any interests like music, art or something else? I've seen some incredible talent in people who are forced to live a different lifestyle. At your age, I was not driving, and that forced me to study my school work and play piano.
 
My twin sister and I are deafblind and have complex partial seizures. We also have CVI Cortical vision impairment. We were born three months too early and died several times which of course reduced oxygen to our brains. I take Keppra 3000mg and Tegretol XR 600mg a day and am 26 years old. If you are having seizures even though you are on three or four meds, your neurologist should consider some other treatments or possible surgery. I feel bad that you are still having troubles.
Please take care or PM me if you wish.
 
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