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8 year nightmare

Ive had this health issue since 2006. The way it started is very odd. While I can't remember which came first, back in July of that year I had what was possibly the worst migraine of my life. Bad enough to think I was gonna die but I only had the strength to crawl into bed and sleep it off.

Before or after that, I remember going up the stairs to my room and when I stopped in the middle of my room, my body started shaking and before I knew it I was on the ground twitching. Im certain my eyes were open and I was still conscious, but I couldnt see anything. I remember hearing a really loud and intelligible sound going off in my head. When my vision slowly returned so did the feeling to my arms and legs, which were numb and twitching during the episode. Nothing quite that bad happened again but a week or two later something interesting developed. When I would sit up or stand up or move my position at all an odd euphoric feeling would wash over me, making me feel fairly happy and relaxed while my body felt numb and shaky. I could glance over my fingers and see them twitching and moving on their own despite the fact I couldnt feel them. After a week or two that feeling went away and was replaced with feelings of stress and anxiety, head and sweat flashes, constantly going into deep concentration without meaning to, and memory issues like forgetting what I was doing or even temporarily forgetting concepts like math, constant light headaches like my head was under pressure while my vision constantly drifted in and out of tunnel sight. From then on it seemed to happen no matter what I did at a constant and fixed rate, only seeming to worsen when I was upset or when I got up. And Im not quite certain, but it seems to happen longer when my arms are above my head (I have noticed I seem to zone out and lock up longer after grabbing something from a cupboard above me). People who have seen me during the episode say it looks like Im about to fall asleep and that I kind of teeter about while fighting to keep my knees from giving out. When walking it feels like I go on autopilot and my mind wanders against my will. I lose track of whats happening around me to the point that when it first started happened I was nearly killed twice in one day (nearly hit by a bus walking both times). All the doctors I went to always say its anxiety or stress despite the fact it happens even as I talk to them and I have to fight to recall what they say to me because if they talk for a minute straight I will only hear half of it and have to try and recall the other half. The antianxieties and antidepressants meds they put me on never do anything but make me feel "okay" with my situation despite the fact nothing has fixed it.

All these years it happened and I couldnt do a thing about it because I didn't have the money to see a doctor often, it hindered me from getting any job more high paying than entry level jobs like cashier and stocker, I couldnt even drive because I feared an episode would happen while driving and I would have an accident before the fact I had an accident even registered in my wandering mind. And now that I finally have been able to see more doctors Im still having a hard time explaining it to them. It does not help that the closest doctor I am able to find has extremely poor attitude and bedside manner. The only thing theyve been able to determine so far is through a sleep study diagnose that I have sleep apnea and am awaiting the arrival of a CPAP machine of some kind.

The only thing I have found for certain throughout this entire horrid experience is that it worsens based on movement such as standing up, that it happens no matter how I feel or how I sit, and hasnt changed since all those years ago. Whether or not the orthostasis is a symptom or the actual problem, I still have yet to determine. The doctors are not making it any easier.

I can't be the only one this happens to. Has anything like this happened to anyone else? Please I need help diagnosing this, I'm at the end of my rope and Im not sure how much longer I can put up with it knowing the answer is out there somewhere.
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1415174 tn?1453243103
You have some symptoms of migraine and some of seizure and maybe also something in the brain? I would see a neurologist and see if you can get a CT scan of the brain to rule out any problems there and then also a electroencephalogram to rule out a seizure. It is typical to get the euphoria you felt after the shaking after a seizure. So, I would start there and see if they can figure that out. Maybe see a specialist in migraine/seizures if you have a choice. I don't think this is anxiety or anything like that. It took me 8 years to get diagnosed with a migraine variant because I didn't have the usual symptoms of a migraine so I hope this helps.
Helpful - 0
Avatar universal
I should have mentioned before, I have had some tests done that turned up negative. Ive had a CT Scan and an MRI of my head, plus some bloodwork for any issues with the thyroid. Ive also had an ECG and Im still waiting on the results of my EKG and Im hoping to hear soon for the blood test I had done to determine if its Pheochromocytoma. I only had one really really bad migraine back before it started happening and never really had head pain as bad as that ever again.
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1415174 tn?1453243103
That is good about the CT scan. THe ECG is different from the EEG it measures brain activity for a seizure.
mkh9
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Avatar universal
whichever version is where they glue those nodes to your head and flash lights at you with your eyes closed. Thats the version I had and am awaiting results on. Personally, I dont think it will turn up anything. The episodes happen too constantly at too much of a precise rate to feel like epilepsy.
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1415174 tn?1453243103
Yes that is the one I was talking about. Let me know how it goes.
mkh9
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Avatar universal
got results back, both the blood test for the Pheo  and the EEG turned up negative.

I really hate doctors.
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1415174 tn?1453243103
I'm so sorry. I really thought the EEG would be positive. I don't want you to give up. I was there too. I was throwing up only at night, with the shakes and cold and stomach pain. No one could diagnose me. I went to so many doctors and spent so many times in the ER. They thought I was a drug addict because I asked for pain meds. I finally went to a psychiatrist because I thought I was crazy. He was the one that diagnosed me with the migraine variant. Now these days it is not so hard to diagnose but back then it was because I had no headaches and no auras. I wish I could help. It almost sounds like you are sleep walking in some cases. Narcolepsy and a sleep disorder come to mind (not apnea even though you have it). Maybe there is a brain chemical imbalance. I don't know but I wish they could at least treat you for it even if they can't diagnose.
take care,
mkh9
Helpful - 0
1415174 tn?1453243103
See this article about narcolepsy:

http://www.ninds.nih.gov/disorders/narcolepsy/detail_narcolepsy.htm#261173201

I wonder if some of the things that are going on are you falling asleep or waking in the state they are talking about cataplexy.
Something to think about.
mkh9
Helpful - 0
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