Thursday, January 6, 2011

SEIZURES SUCK! But part of my life! "UPDATED"

Around the time I was diagnosed with Multiple Sclerosis I started having seizures in my sleep.
These were a different type of seizure. I was aware of them. Most of them would happen when I was drifting off to sleep.

The best way that I can explain it is a feeling of falling. During this feeling of falling I am a bit aware of my surrounding but I have no control of what happens. I have hallucinations but there can also be things going on around me that is also very real.
Many times I recall reaching out for Jack for him to pull me out of this and my arm or hand would feel like it weighed a thousand pounds. I could feel myself jerking or feel my dogs licking my face and not be able to do anything about it..It is really scary.
As soon as I am able to bring myself out of it if I I don't sit up immediately I will drift right back into it and this can be hard since I am really groggy when I come out of one.

It has been a while since I had my last one maybe 6-8 months..
I was recently put on a new medication called Topamax. This medication SHOULD help with these..
Well this morning..I had another one..This was one the most scary ones I think I have EVER had!

They are kinda like dreams..Once you have them and times passes you tend to forget about them. jack says that the one I had 6 months ago was pretty bad as well but of course I don't remember it as he does.

I woke up with someone YOUNG calling my name but it was my nickname(naynay) over and over and I felt like they were giving me a shot in the neck. But it did not hurt. It was just a sense of knowing that they were doing it. So clearly this was the dreamy/hallucinate end of it. The worst part is...I was SUFFOCATTING!!!! I could not breathe.This time was short. I manged to come to pretty fast. But went back in really fast. I was laying on my back with one foot planted on the bed. Same thing my name was called out and I was being suffocated. I was swinging my leg back and forth trying to keep myself from falling..That is what I call it..Since that is how it feels. The strangest thing. The dogs were around me. I could see Bella and she was barking but I could not hear her. At one point she even crawled on my chest. I was panicking..I could not breath!! When I finally came to which seemed like forever I sat up really fast. My throat was really dry and hurt. My arms and hands were numb. My lips were numb and dry. My mouth was dry. 30 minutes later my hands are still tingly..THAT WAS SCARY!!!!! I feel like I could have died in my sleep!

I had wrote a lot of this same thing to my husband and he is coming home..Just in case I fall a sleep..I questioned if I should have emailed him. 10 minutes later he texted me that he was on his way home!
I clearly need to get back into see a new doc or get back into see my now neurologist and find out if I need to switch my meds. Jack is gonna call when he gets home!

It was a scary morning to say the least!

Like I have said in he past THIS IS MY JOURNAL...By writing this down it gives me the opportunity to remember it! To me these are like dreams.As time passes..I forget them. Jack says the one six months ago was really bad as well but I don't remember. If I don't remember them then how do I explain them to my docs??? This is a great way!!!
Yesterdays calories 1553..I did good till I had toast in the middle of the night..Still a good day though!


  1. I would definitely see a new doctor; I don't know the purpose for the seizures but those don't sound like normal ones to me at all. When I was working at Wal-Mart about 10 years ago a very heavily loaded pallet fell on my head, I put my head down to protect my face and it hit on the back of my head and neck displacing the first disc in my spine by a half-inch. I thought I was okay but the seizures started about two or three weeks later. At first I didn't know what they were because I never convulsed like you see when someone is having a seizure on TV. My body would go rigid, I would start breathing very heavy and loudly, the breathing would dry out my throat and lead to coughing or gagging and sometimes I would lose consciousness but most of the time I would not.

    Originally I thought they were panic attacks but I'd never had panic attacks before and then they started to come accompanied by blinding, debilitating headaches. When I face planted on the carpet in front of my roomies while walking out of the bathroom they decided to take me to a doctor. They carried me to the truck and took me to the one roomie's dad because he is a chiropractor. I didn't have insurance and Wal-Mart had long-since fired me because I kept having to take time off due to the headaches so he worked with another Dr. in town and x-rayed my head and neck, which is how we found the damage to my spine.

    He started doing regular adjustments and the seizures started to reduce in frequency from one or two a week to maybe once per month. Now they're down to maybe once a year and last year I didn't have one at all.

    However, that said, last night's panic attack triggered a seizure. I do have panic attacks now also, because of perimenopause (the medical condition unrelated to my weight that I mentioned in my Articles of Faith post) but they're nowhere near as severe as the seizures. Panic attacks, for me, are usually excessive crying until I start gasping for air and trembling from head to toe like I'm shivering but I'm not cold and a racing heart. But last night when the heavy breathing became gasping, coughing, choking, and gagging, and when my body went completely rigid so that "Temptation" couldn't roll me on to my back, I knew that a standard panic attack had gotten out of control and triggered a seizure.

    At the risk of having no idea what I'm talking about, because I know your seizures and the reason for them is different from mine, I am assuming you published this post for moral support so here it is. I've never come out of a seizure to fall back into another one, I've never hallucinated during one either. I have the groggy disoriented feelings that you describe, but not the visions or audio. Sometimes I realize they're happening, just like you do, sometimes I lose consciousness early enough that I think I've just fallen asleep and, were it not for others around me at the time, I wouldn't have even known I'd seized.

    At any rate ... yes, please see a new doctor and be sure you give him or her as much detail as you've added to this post. I'm sorry you have to go through that, I can't even imagine what it is like because my experiences pale in comparison.

  2. seizures are not fun at all!! I hope you get ahold of your doctor and can find a solution to this problem soon! They may just want to up your topamax. Since you are on it for another reason, they may actually look into putting you on another medication to control the seizures. There are so many out there. I just hope they get this solved sooner than later for you!

    and REST! Sometimes seizures can be triggered by stress... heat... cold... (I know it sucks because MS flares are triggered by the same things, but just take it easy today!!!!) REST REST REST!!

  3. Ohhh Honey, how terrifying.. I am sorry you had to go through that. Please, please, please see a Doctor ASAP... (((huggggggsssssss))) to you....

  4. OMG! How scary! I'm SO sorry you went through that. Please let us know what you found out from the Doctor as soon as you can, okay? Thinking about you and sending prayers. *GIANT HUGS*

  5. This is SO SCARY! *HUGS* Definitely get into the Doctor.

  6. How scary! I hope they can figure out a way to get them under control!


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