EMU Round 2

By MissPuff Latest Activity July 19, 2011 at 8:55 pm Views 2,836 Replies 7 Likes 1

MissPuff

Hi Everyone. I'm on here under a new name (my husband was concerned my first member name revealed too much personal info, so I changed name and picture per his request).

Anyway, I had written before about getting an epileptologist and at that time it was believed that I had 7 types of epileptic seizures. I went into the EMU for a week and learned I had more types of seizures. I have ten types of seizures. They know I have TC's, but couldn't catch them on video the first time, and they have been getting worse, so I am in the EMU again. Hopefully we will catch it this time.

Last month was a very bad month with all the seizures, but I had 3 TC's, each of which lasted 20-25 minutes. I don't know why mine last so long, and I always hurt for days afterward. When I saw my EPI the first time, I was in the middle of a 6-day, nonstop myoclonic. He said I was status ellipticus and unfortunately nothing could be done because I was already on the maximum dose of Valium, and that if I did get an IV of valium, it would shut down my respiratory system. So I just had to wait it out.

So this stay isn't to really change any diagnosis or treatment. My doctors are 99.99% sure of the TC's - they just want the video-eeg to clinch it. And there isn't any possible change in AED's - I've tried about everything. The AED's I take now control complex partial and the 4 simple partial types pretty well, with some break-thru seizures. But I can't take anything for the other 5 types. It's frustrating, and scary since seizures are a serious matter, but what can I do? I just cope the best I can.

Well, just wanted to let others know how I'm doing since I haven't posted for a while. I hope your dealings with EP are going a little, no, a lot better than mine.
Shelia

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Replies (7 replies)

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  • Dudeina
    Dudeina March 7, 2014 at 6:53 pm   

    I realize this may be one of those, did she read this, entry's. My idea to slow down your seizures is to have the people near you prepared, with there cell phones or something like that. Have them prepared to take a video of you when you have a seizure. Then watch it with your Dr. Another thing I've learned, is that if you get an Aura, rub your Vagus nerve, you probably already know that though

  • MissPuff
    MissPuff May 14, 2014 at 11:11 pm   

    Thanks for the suggestions. Yes, I alerted everyone & was able to get some recordings of my seizures. It helped my doctor a lot.

  • riverkings
    riverkings July 26, 2011 at 9:17 am   

    Shelia, it is good to hear from you. I have been thinking about you lately and wondering how you were doing. I am so sorry that your seizures have been such a problem lately. I am glad you have a DR that is trying to at least work with you and do some testing to find out more about what is happening. I know how frustrating it is when you have tried everything available is surgery an option? Maybe they will find something. Good luck with your testing.

  • MissPuff
    MissPuff July 26, 2011 at 11:32 am   

    Hi Lani, I just got hom from the hospital yesterday afternoon. I have a wonderful doctor. I was in so much pain the last 2 days I was in the EMU - a 10 on the pain scale. I woke up at 7:00 in tears, feeling like I would throw up. My doctor was at my side in less than 30 minutes. First, he was standing at my left side & we talked about the seizures and me not having had a TC during my stay & me possibly wearing a portable unit again. Then he moved to my feet & was lightly rubbing the top of one foot while we started talking about the pain. Then he came around to my right side and was holding my hand while he asked more about what caused my pain & he told me about a clinic that was working with people that don't respond or can't take pain medication. The whole time I was crying. He finally had to go & see his other patients & gently squeezed my shoulder before going. Of course a nurse was there the entire time & there was nothing improper in his behavior. He is very sensitive & caring.

    I slept for a while, then I was unhooked from the video/eeg and went to take a nice, long shower & get all the glue out of my hair. I had just got back to my room & my left hand started shaking really bad, then my right & I told my nurse I'd better lay down, I was going into seizure. During my seizure, she called another nurse in & they both monitored me. Afterward, I of course went to sleep, then both nurses woke me & asked me if I knew where I was & if I remembered a word I was told to remember when I first started seizing & I went back to sleep. Then my doctor came back & woke me again, asked if I knew where I was & what had happened. I was a little bit awake after he & the nurse left the room & heard them talking outside , but couldn't hear what they said. Then my nurse came back in & my phone started ringing - my husband calling to let me know he had arrived & was in the parking garage & I asked my nurse to answer it. She told him I'd just had a seizure & to come up. When he got there, she told us everything that happened & said it was a TC & had lasted 20 minutes. She had to give me a shot of valium in my thigh to help my muscles relax & some tylenol because my muscles and jaws were hurting. I guess I must have been clenching my jaws pretty hard. So I don't have to wear the portable unit again. (She gave me the shot in my thigh instead of IV because I'd had 3 IV cathetors put in during the week & the vein collapsed on each after a few of days & by Sunday, every vein they tried blew immediately.)

    I'm still very out of it. When I have these TC's, my muscles will be more painful than usual for about 5-6 days, I'm very sleepy for a couple of days & a little more confused than usual. I'm glad I finally had the TC in the EMU, and so is my doctor. I'm back on my regular meds. At this point there still isn't anything that can be done to treat the TC's, myoclonics, occulonics, tonics, or atonics. My meds do pretty well at controlling the complex & simple partial's. Surgery isn't an option because of how widespread the seizures are.

    Well, that's the latest. I've got another doctor appointment this afternoon, so I need to get around. Thanks for checking in on me, Lani.

    Shelia

  • riverkings
    riverkings August 1, 2011 at 11:16 am   

    I hope all went well at your Dr appt. last week and I that you are feeling better from your big TC.

  • MissPuff
    MissPuff August 1, 2011 at 8:05 pm   

    Unfortunately I didn't get to see my doctor last week - there was a crisis situation & I'm rescheduled for this Weds. I was feeling better ecept for several headaches during the week, but I'm sure I had another seizure during the night. My headache is worse, nausea, sleepy, etc. - just plain miserable. But I'll get better again. It will just take a few days. I appreciate your concern. You are always very caring. Thank you.

    Shelia

  • MissPuff
    MissPuff July 19, 2011 at 9:07 pm   

    Well, this was supposed to be the picture for me, but for some reason the update didn't take. So I guess you still know who I am.:-)