Girl, you've just got to get those neurons under control! I'm sorry you are having a yucky episode!!! I'll bet the lack of sleep and stress thing are really contributing to everything... If I was there I would give you a giant hug! ((((((HUG)))))) I know sometimes when I have the feeling it's going to "happen", my vision starts to blur and suddenly time and space seem to move really fast- like warp drive. It's all I can do to sit down really fast. Afterwards, my brain is scrambled ! I can really relate. Hang in there, Sheena!!!!
Gelastic Seizures, wow,...I'll bet that kind of seizure is often misunderstood as emotional outbursts and temper tantrums. Can't imagine how many people go undiagnosed or treated for other conditions.
Speaking of symtoms...when I get simple partial seizures I feel like my hands are really large- like the size of the "Hulk". I call it my "Hulk Hands". I also feel like I'm holding the world's largest beach ball at the same time. My mouth and teeth have the same large sensation. Sometimes I can't talk very well when it's happening and I feel panicky. Do any of you have this large sensation in your body feeling? Wondering what you are experiencing with yours. ...
Sheena- Aren't you going to the neuro Monday? Hope you have a successful visit . Glenda
Hi Goodwitch and c. michele--sorry it took me so long to reply--I have been having wicked migraines/seizures lol!! Gelastic seizures eh? I will mention that to me neuro next time....get this one.....here is how my visit went: I took my mother in law with me for moral support as I usually get emotional and nervous when I go....so she was so helpful and wonderful! He says that I am a mystery to him.....he does not know why I am having so many different types of seizures....if it is me the E the meds.....that are giving the symptoms.....he does know that it is scar tissue on the temporal lobes on both sides of my brain that is causing the E and the CP seizures.....so that is the cause....surgery when I was 5 yrs old (craniotomy). So he said that I can stop Keppra now and start new med with the tegretol and topomax...or keep on Keppra for 2 more weeks and see how I do and if still feeling crappy then we start new med.....problem is we are running out of meds to use and the next option for me is SURGERY>
so......I am on 1 yr waiting list to see if I am suitable canditate for surgery. My MIL liked him....but she said that she thinks he does not know why I am having so many seizures and what is going on at night time......so I am a mystery????? Good news...my IBS has settled down finally.....bad news....I had huge seizure in car after neuro appt with MIL (CP) and then last night in bed I had huge migraine and fell asleep..woke up and my legs were kicking up and down rythymically and my eyes were opening and closing the same.....really freaked me out.....I called for my hubby that I was haing a seizure but I dont know what it was for sure??? Have you guys ever had anything like that before? I also got my period yesterday which leads me to wonder if my seizures are also triggered by hormones but my neuro says that they are triggered by scar tissue so why is everything setting them off??????????
I am so sorry to ramble/freak out/go off/I am just weirded out!!
whover asked if anyone felt like their hands ever got huge before a seizure.....yes!!! I get that! and my mouth gets all weird sometimes too. LOL! Guess i am a reall mystery woman!! LOL but I will never lose my sense of HA HA!! How are you guys doing? Hope you are feeling well and seizure free! take care and sorry to go on....... (((Sheena)))
Hi, you guys are so funny! You make me laugh out loud! So, Sheena, from now on I will think of you as "The Mystery Woman". Hey, maybe your seizure episodes are triggered by the darkness? or horizontal position? I'm sure stress has something to do with it. I know that hormones are DEFINITELY a trigger for many women. Maybe you should try to meditate or do yoga or something? I was thinking of trying that. I've heard that helps with stress. I don't know if it helps with seizures at all, but if it helps with stress I think I am going to try it.
I've had two more of those simple partial seizures where my hands were feeling really large again. And I noticed that both times it happened I was squinting into the sun!! I was waiting at the bus stop with my son and the sun was coming up at such a sharp angle that I had to squint the whole time we waited. So now I know what one of my triggers are!!! Hurray! Now I know something to avoid! I'm going out to buy me some dark sunglasses! Glenda
Pam and Randy-
I feel better knowing I'm not the only one that has the larger than life feeling. I only experienced this recently since I had a medication change. My neuro said he thought that it was simple partials since my complex partials were suppressed lately.
I do have the out of body feeling however and I feel really scared when it happens. I am somewhat aware of what is happening and I can't help the feeling of coming out of my body and being pulled out of the top of my head. It's all I can do to grip on to whatever I can to prevent myself from floating off and never coming back - like a helium balloon.
I, too, was scared to tell anyone for a long time due to the reason I thought I was going to be thought crazy and thrown in the nut house.
To this day, I don't like heights or looking over balconies.
Hey! I've had that feeling a lot... like I just knew I was going to have a seizure all day. I never thought of it like that before...when you feel a sneeze coming but you don't. I'll have to remember that one.
I'm suddenly aware that I've had the same conversation before or maybe several times or even a hundred times before. In fact, the feeling is so intense, that I can even sense what is going to be said before it is said.
I'm watching a tv show and even though it's a show I've never seen before I know what they are going to say and do before it happens.
Even myself... as strange as this may sound... I can predict my every move... I reach down to scratch my knee or tie my shoe... I know I have sat in this chair and done this exact thing before and I can predict exactly what I will do next. Noone around me seems alarmed by the repetition of the events. But I am.
I've done it so many times before...
Anyone else care to share?
Oh yes....I knew I was forgetting some....
I should get a hot line where people can call and I tell them what is going to happen....lol
I never get lottery numbers....darn
Brain is a complex organ....so many odd seizures
So many odd feelings
When family ask "how ya feeling" ?...I just say...great
they dont want to hear about the "dog barking"...lol
My thoughts are with you all.
It's been awhile since I've been able to visit. Much of what you have said sounds so closely related to migraines. I've had migraines since I was 26 and the first one I ever had truthfully I thought was a stroke. I was in the shower and reached down to pick up the soap when I went completely blind in my left eye. I had them periodically over the years, but it wasn't until I was in my 30's that I started to have them like clockwork right before my period (almost everyday for a week). I never really mentioned again to any Dr. since the ER Dr. seemed to think it was a minor thing that Tylenol would help. Until one day I mentioned it to a female Nurse Pract. and she said let's put you on Fiorcet and see if this doesn't help when you feel one coming on. Well, it does help and when I get the first sign of pain I take it. But, lately I feel like I'm living on it. Between the frequent seizures and migraines it's been the only thing that helps relieve the pain. You see after I have a seizure I have a splitting headache and I can certainly relate to the freezing cold feeling. It happens to me alot as well. So, you could say I'm a cave dweller too...no light, no sound, not hungry. I was so embarrased when my cleaning lady came this month and I had blankets hanging on the windows in our bedroom. My son forgot to tell me she was coming that day and I went off to work leaving the room like a cave. She left me a note saying I hope all is well. She does know I suffer from seizures and can generally tell if I haven't been able to clean as well as I normally like to throughout the month. Off the subject.... I can tell you that hiring a cleaning lady once a month was the best thing I ever did for myself. $50/mo. is a small price to pay for the peace of mind she gives me. Due to my illness I can do all light cleaning but anything that requires chemicals I need to stay away from, it's not worth the price my body pays. I've found that one of the things I had to come to terms with in my illness is that I'm not going to be able to be the person I was, close to it but never the same. I've had to deal with the fact that my energy level is no longer the same and the things that I seemed to be able to breeze thru take a little more time. Only those of you on the website would know how difficult it is to make it thru a full work week without total exhaustion by Friday. I never told anyone that until just recently I shared that with my husband. Sometimes I think we are in denial about certain aspects of our lives until they go on for so long that we are forced to deal with them. When I was controlled I never even gave this a thought, but recently my feelings have changed. We've decided that everyday that I don't have a seizure or migraine is a day to celebrate. I'm back to baby steps....but not forever.
So well put. Baby steps.
Several years ago, My doc thought Migraines, so we tried different meds....nothing.
I have found with Keppra, I lost my appetite, and can go all day not knowing if I ate or not.
Now I write it in my journal, along with everything else.