I am a 23 year old college student and I have been dealing with some neurological issues for the past several weeks. It all started with episodes of right sided facial numbness, tingling, loss of hearing in right ear, blurry vision, dilated pupils that were non-reactive to light, unequally dilated pupils, difficulty with finding words, and inability to communicate despite being conscious during these episodes. I was in the ER at the veterans hospital twice within a week trying to figure out what the problem is. They did a head CT (no contrast as I am very allergic to contrast) that was normal. They also did blood work and urinalysis that all came back normal. I also consulted with my psychiatrist (I have a mental health condition that I take medication for. None of my meds have been changed within a month and a half though and the psychiatrist says that the meds that I am taking would not cause this type of reaction). I then met with my primary care provider at the VA. She put in for a referal for me to be seen again at the Neurology Clinic. I have been seen there before because I have nerve pain in my back and leg from a service connected injury and I take 300mgs of Topamax every day for it but had recently been discharged from Neuro back to Primary Care since I was on a maintenance routine. Complicated I know. So I am schedule to see Neurology on September 15th which was going to be ok I guess until last night I had something unexpected happen. I was feeling really strange before I went to bed. I couldnt' figure out if I was sick or what. I checked my blood sugar and blood pressure and pulse and temperature before I went to bed and it was all normal so I took a bucket to bed with me in case I should wake up with a stomach bug in the middle of the night and then I went to sleep. Well, around 3am I was asleep and the best way I can describe what happened is to say that my entire body like jerked or all of my muscles contracted at once and it woke me up. For a few minutes after it happened I was wide awake and very alert. Then I went to sleep and woke up for a few minutes at 9am then back to sleep and then again for a few minutes at 11am then back to sleep and didnt' actually wake up and get up until after 3pm. By the time I finally was moving enough to think of calling the VA it was too late to get through to anyone but the ER and I was not going to their ER again. I am going to call Neuro in the morning and see if they can do anything or see me sooner.
I'm just wondering if anyone can relate to any of this. I'm frustrated because so far no one seems to know what is going on and now this thing happened last night and I am really scared about what is going on. So any input anyone could share would be appreciated.
Sophia, it sounds like you have been and still are going through an upheaval of your normal life.
Involuntary muscle contractions followed by heavy sleep sounds like a seizure, but it's always difficult to tell. I can certainly relate to how it feels after a seizure. How did you feel when you woke the next day? Usually it takes a while to feel normal again.
Unfortunately, other than a general recognition of what you must be going through with a possible seizure I don't know if I can be much help to you. I know how frustrating physicians can be, especially when it doesn't seem they are helping you very much. It sounds like you are taking good care of your health, and are seeing your doctor, so all I can say is to have patience until they can determine what they need to do.
I called the Neurology Clinic at the VA this morning. They couldn't track down the Neuro Resident who I usually deal with because it wasn't his day to do clinic at the VA so instead they had the Chief Neuro Resident call me back. We talked for a while and he said that based on just talking to me on the phone and looking over my ER records from everything else that has been going on he couldn't say if I had a seizure or not. He told me to just wait and see if I have another one. I told him that I'm moving back to the dorms Monday morning (not far away or anything-- still close to the VA medical center) and that I am concerned about having a seizure at school. He said there is really no way of predicting whether it will happen again or not without doing a lot of testing.
My sister is assistant director of a camp for children and young adults with disabilities and she has a lot of experience with and training on seizures. She told me that if I am in class and I feel like I did before I went to bed the other night then I need to leave class and go sit somewhere where I will not hit my head if I fall. She thinks I should tell my professors that this may happen. I'm concerned about telling them because I go to a smallish private college and I do dorm and I am afraid that they may consider me a liability and kick me out of the dorms. Have any of you been in that type of situation?
Hi sophia I briefly read your story and know exctly how your feel in reagds to college. I used to suffer from Partial complex seizures prior to my brain surgery last year that has helped me so much. Anyways, I graduated in 2004, but I dormed all 5 yrs and everything went ok. I told all my professors about it because I would walk out or call out of class once a month so they understood. In my opinion is best if ur teachers know about the situation so they may be linient with you, and its against the law for them to throw you out of the school due to any illnesses. think about it and due whats best for you, personally it helped me to tell others about it, but that's different for everyone. Good luck
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