[music-in-me]

This is my first post on this site. I have a mild TBI from a car accident, and have been diagnosed with "spells" last July after a 1 hour and an 8 hour EEG were performed at my Neuro. M.D.'s office.

I began Neuro Rehab in December of last year as an outpatient 3 times a week. These "spells" were occurring 1 to 2 times a week during rehab with just a small tremor in my hands and a fixed stare for 5-10 minutes staff told me. Sometimes tears and a runny nose happen, but I am not upset. I was always aware of what they were saying and tried to respond verbally or physically, but unable to do so. They would resolve and I could continue.

Last week, these "spells" were occurring back-to-back at 5-20 minute durations each. The staff told me they recorded 7 or 8 episodes in less than an hour and a half. I was sent to the ER in an ambulance, where again the EEG was negative. Now I am scheduled to do an ambulatory EEG for 72 hours while in rehab to elicit the episode.

I do have similar smaller episodes at home, but usually like the ones in rehab with a quick resolution. Neuro Rehab tends to elicit these with longer duration more frequently. Have any of you experienced anything like this? They tend to happen with any type of activity, in group settings or 1-on-1 with therapist. I feel like I get slower and slower until I am no longer able to respond or communicate until it passes. I fight it the whole time, trying to say words or move a hand/ finger to acknowledge I can still hear them talking to me.

If any of you have any responses, I sure would appreciate them. Thank you in advance. M-i-m

[Darlene]

M-i-m,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

My advice to you is have your family Dr. refer you to see a Epileptologist (Dr. specializing in Epilepsy) and go to a Epilepsy Center. These places are found at large hospitals or university hospitals. These Drs. will do a series of tests on you and this will help the them fine exactly what's going on with your situtation. One other thing to do is taking vitamin B12 1000 mcg. once a day for adult. Afford being around strong flashing lights like at theater, you could wear sunglasses. Also at the theater just make sure you turn your head and shut your eyes during flashing back grounds.

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

[Porkette]

Hi M-i-m,

Welcome to the forum! It sounds like you may be having simple partial also knowns as aura sz. I was in a auto accident a few yrs. ago and I ended up with a concussion which in turn triggered more sz. for me and this could be what is happening with you.
Darlene gave you some great advice and I would stick to her words I saw many neuros but when I started seeing an Epileptologist my life changed I was able to have surgery and my sz. reduced greatly.
What concerns me is when you are having sz. back to back for 20 min. that is also known as status sz. which are not good and you need to get your family Dr. to get you in to see a Epileptologist a.s.a.p
Stress and lack of sleep are the 2 main things that can trigger a sz. for a person and it could be that when you are in therapy you feel the stress and in turn it triggers the sz. or if you notice a certain sound or bright lights around you and then have a sz. you could be audio and photosensitive meaning certain sounds and colors are triggering your sz.
Get a calendar and write down each time you have a sz. be sure to write down what time it is along with a description by doing this the Dr. may be able to see a pattern in your sz. I found that hormonal changes each month is what caused me to have sz. along with a low pressure in the weather. I wish you the best of luck and May God Bless You!

Sue

[music-in-me]

Hi Porkette,

Thank you for yours and Darlene's quick responses! I don't know if I'll get the referral to the Epileptologist. We're all waiting on the results of the 72-hour EEG coinciding with rehab. I know the staff is determined to get a definitive diagnosis, too. The episodes that happened last week, which d=sent me to the ER weren't anything I had ever experienced before. The staff told me they have documented every time experience these, and this definitely was the most severe.

Thank you for your advice on keeping a calender for myself when I am not in rehab. I hope they can find a pattern to help figure this out. Darlene also gave good advice. I am currently taking a multi-vitamin as suggested by the Neuro. who did the previous 2 EEG studies, but I didn't know about the B12 vitamin specifically.

I will keep you posted on the results. Thank you again for the advice. M-i-m

[Porkette]

Hi M-i-m.

I hope the neuro finds out what's causing the sz. and is able to pinpoint the exact area of your brain that's triggering the sz. I do know that people that are into music are using the right temporal lobe of their brain. I'm a music lover myself. I used to play the organ when I was a kid but I gave it up and I could kick myself for not playing anymore. I do have family that has worked with professional singers Trace Adkins, Garth Brooks, Collin Raye, the Dixie Chics and a few other professional singers. They worked as an audio engineer which isn't easy and you have to have good listening skills as I'm sure you know. I sent you a private message in case you didn't see it at the top corner of you screen on the right side check it out and they may give you more info. about your sz. Here's wishing you only the best of luck and May God Bless You!

Sue