New and not sure

[Marsha Cash]

Hi. I am not sure where to look for answers. It all started about 5 yrs ago when i started haveing medical problems. First i lost some of my skin sensation all over my body. It was really depressing. i went to Mayo for them to tell me it was small fiber neuropathy. Then 2 yrs ago i started falling down. I would just out of no where lose all muscle control and crumble down. I would not be able to move or talk. I couldn't even tell if i was breathing. I have no body awarness. When i fall it feels like i am not in my body. i feel no pain when i hit the floor. i can hear and see where my eyes are pointed. it lasts about 30sec up to 2 min. i slowly get my self back together when in about 5 min after the fall. I get so scared that i won't come back from that state. Like a locked in feeling. I have had several tests and all are negative. I have seen heart doctors, sleep doctors, and now neuro. I have had MRI's, EEG's, etc. I can fall as many as 5-8 times a day or go 6 months without one then have one. my neuro had started me on Topmax that didn't work and then Triliptal that worked for a whole year but made my salt levels go crazy. so she took me off that to see if i would have more falls. I did. She decided from what other people who see me fall that i have simple partial seizures. now i am on Keppra 1000mg 2x a day. just started that so i don't know if it's going to work or not. So far i have had 8 falls.

I have been working during this whole time but lately i can't seem to keep it together and focused. My employer has been very good to me but i feel it is unfair for them to have to wonder if i am focused enough to work. They need a person there FULL time. I live so far away from my job and now can't drive. I am not sure what to do with all the information i find. So far i have not found anyone with the same type of seizures that i have and i am beginning to wonder if that is what i am having.

I know i am rambling on but i feel so lost lately. Maybe it's the meds. If anyone can help me find out if there is someone that has similar seizures or advise i could sure use it.

 

[Nakamova]

Hi Marsha, welcome to CWE. It's a great place for getting and sharing information and support. Don't worry about rambling -- you're not!

Your symptoms sound like Myoclonic-Astatic Epilepsy, or drop seizures. One reason that they might not have shown up on EEGs is that they originate very deep in the brain, in the areas that control muscle tone. MAE doesn't respond as well to AED meds as some other kinds of seizure disorders, so it may take a few tries to find the right combination of meds. In children it's sometimes treated with steroids -- I don't know if that's an option with adults, but you might want to ask your doctor.

I hope the Keppra works out for you. If your mood starts to be affected (it's called Kepprage), then I recommend that you take a B6 supplement, which can help. In general the B vitamins are good for brain health, so you might want to consider adding them to your diet. Magnesium, calcium and D are also helpful, along with foods rich in Omega 3s.

Best,
Nakamova

 

[Marsha Cash]

Mae

I thank you for your quick response. I feel so alone. What is strange is that i am an older person with this type of seizure. Doesn't it usually happen to young children? And why out of no where at my age would this occur. The only thing i can think of that might, i use it lighly, might have something to do with this is i had gotten hit hard in the forehead with the full force of someone coming through a door. i had a goose egg. I didn't fall down or lose conciousness when it happened and i never gave it another thought. That happened several years ago.

This has just changed my life so much. I am such an independent person and now i feel trapped and afraid. If i keep falling i will end up hurt. I am so dependent on people where i never have been before. I don't know if i can keep my job and keep taking days off. I am just confused. Thanks for any information.

If there is someone out there who has similar seizures i would love to hear from them. I will keep surfing the web looking for answers.

 

[Nakamova]

Marsha --

Adults also get atonic (drop) seizures. Although there isn't always a clear cause, they are frequently associated with facial and neck injuries, so your head bump may well be related to the onset of the seizures.

 

[Nakamova]

You may have gotten this from your doctor, but here's some of the current info about treating atonic seizures:

Newer medicines like Lamictal and Topomax have reduced the frequency of atonic seizures in some patients. Valproic acid used in conjunction with Lamictal is considered the "treatment of choice" for atonic seizures. A surgical procedure known as a callosotomy is an alternative for patients who are unresponsive to medication. Patients with tonic and atonic seizures experienced an 80% decrease in frequency of seizures post-callosotomy.

 

[Marsha Cash]

thank you for the info

I have tried Topamax and it didn't work. It was the first drug they put me on. I will take the information to my doctor. My doctor here is just an GP but i am seeing a neuro at Vanderbilt. I just hope the Keppra does work.

You know so much about all of this. Thank you. I feel so over whelmed sometimes.

It's hard to find support groups here. In fact i don't think there is one.

 

[colba]

hope, you don;t have the epilepsy...anyway, i've read a lot about topamax and i'm interested in you testimonials...

 

[Bernard]

Hi Marsha, welcome to the forum. :hello:

... Then 2 yrs ago i started falling down. I would just out of no where lose all muscle control and crumble down. ...

That sounds like atonic seizures. My wife went through a period of time when she was experiencing them quite frequently. Her seizure patterns have changed numerous times over the years though and (fortunately) she hasn't had one of those in a long time.

... If anyone can help me find out if there is someone that has similar seizures or advise i could sure use it.

Try reading these threads:

http://www.coping-with-epilepsy.com/forums/f23/epilepsy-101-part-faq-part-tips-advice-1255/

http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

HTH!

 

[Ruth]

Hi Marsha, welcome to CWE. Bernard made the forum out of love for his wife Stacy. That love permeates through all of CWE. Be sure and read all of the blogs, Bernard writes. I do. It is about his wife Stacy.

I have the same type of seizures you do. I also take Keppra, that has helped a great deal. I also take Mysoline for it. It is called atonic seizures. I was put on Lamictal at first for it, but it has not helped me. Keppra and Mysoline have stopped mine.

Do not quit your job. It is hard to find someone who is that understanding. Your seizures will get better under control.

 

[RobinN]

Welcome Marsha - I hope that you find the support here at CWE to help make your situation a bit easier to deal with.

I am going to through out something that we don't hear from conventional doctors and that is how nutrition effects brain function. The health of your GI system overtime can be the cause of many neurological disorder and other illness as well. This might be why you are seeing it later in life.

 

[Ruth]

Hi Marsha, Bernard is giving us a diary about him, Stacy and Epilepsy. It is his blog. Be sure to click on it to get the latest information. The ones that you have missed you can still look up. You come in, and go through all of the topics, threads at the below them is Bernard's blog.

Robin's blog is important as well. Press on the one's that are in blue at the bottom. You can learn as much or as little as you want. Believe me there is a lot to learn.