Discussions By Condition: I cannot get a diagnosis.

Strange seizures/cramps...can nothing help??!

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: WeirdSeizures
  • October 30, 2009
  • 10:52 PM

Hello everyone,

After bouncing around from doc to doc to hospital, I've finally reached the point where I think I'm going crazy. :(

My name is Alex and I've have a condition that I've been suffering for 7 years with. I'm an otherwise healthy 34 year old man and I don't have any other problems, and no heredity problems of any sorts.

About 7-8 years ago I spent excessive amounts of time in front of the computer, often that's all I did. I'd suffer from headaches pretty much all the time from eye strain or too much concentration. After waking up in the morning, I'd turn on the computer and turn it off just before bed.

One day I when to bed with the usual pressure in the head from all the staring at the screen, but this time I felt there was something about to happen. It's difficult to explain, but it felt like a seizure coming on, a certain feeling of uncertainty or dizziness, malaise. I now just call it an aura. Felt like the side of my face was turning numb and it affected my left arm. My heart started racing, throbbing.

It somewhat came in waves and just before I fell asleep a MASSIVE pain erupted from behind my left eye, my neck, jaw, face, and left arm simultaneously. My head tilts towards the right hand side and I squint my left eye as the left side of my face and arm cramps. Erratic arm moments. It felt like a blood vessel exploding all the way down to my left arm. I thought I was going to die...it felt to me like a stroke!

When it happens I can not lie down and have to jump up. It feels as if I am having a stroke and can barely make it to the door or phone. I scream in pain as my entire left side shakes, cramps and basically loses control. It felt as if someone had taken a hook and hooked an artery behind my left eye and pulled it out, jerking the nerve right down to my left fingers with it. It's difficult to describe, a very very dull pain. The pain disappears after 30 seconds.

In the first year it happened once a year. Then the next year 3-4 times. The intervals got smaller and currently I'm almost at two a week, 7 years later.

I get these auras or "waves" all the time now. My girlfriend left me 12 months ago, because the seizures are controlling, making me really drawn back. The breakup was very bad for me. We lived together in a very small apartment for 6 years, as my health got worse.

Right now I just put on a mask at work, just to make it home again to sit around and worry about my seizures. I never go out anymore, something I should do to get my mind off the breakup. It feels as if I'm trapped with a broken heart and an incurable disease. I get these auras all the time now. Most often they don't lead to seizures, but at least a few times a week they do http://www.coping-with-epilepsy.com/forums/images/smilies/icon_sad.gif

Guess my 6 year relationship dissolved because I was avoiding life. Going out to the cinemas or where people gather is risky because I'm frightened of the attack "coming". It's gotten worse in the last 6 months, so I'm rarely going to sport these days, something I dearly miss.

I've been to many doctors, blood checks, neurological exams, head MRI w. contrast agents, angiologists, chiropracters, dentists, had extended EEGs done, ECGs, had my eyes checked etc. Everything is fine and I'm "chronically healthy". *sigh*.

Recently I had my third molars removed, because I thought that could be triggering my seizures. At first I thought it helped, but now they're back.

At one point the doctors thought it was epilepsy. I've had numerous EEGs but they were all normal thus far. I eventually did take 1000mg Keppra for one month but that did not affect the seizures in any way at all. Eventually I made it to an epilepsy clinic where they ruled out epilepsy completely after doing a number of tests and listening to my story (I stayed in hospital for almost 2 weeks) and did numerous EEGs and a provocation test where they stopped my Keppra medication and injected me with some liquids (Vitamin B12?). Nothing, no abnormalities.

They put me of lyrica for a while too, nothing, no change.

I tried indomethacin for a few weeks too, since a neurologist thought it might be a cluster headache. Nothing.

Right now I'm approaching depression because of this....but I sort of just carry on functioning, if you know what I mean.

Any ideas what this could be or how I could go about finding the cause?

Could it be the following?

- pinched nerve in my neck, base of skull? (I often have a sniff neck, even in the morning on that side), would that give me a numb face?
- circulatory problems behind my left eye? Why would it run down my arm?
- SUNCT?
- TMJ?
- trigeminal neuralgia?

Burning questions are:

- why does it only happen at night? Or before bed?
- why does it only affect the left side?
- why don't I have headaches, just this exploding pain?
- why do I lose control of my left arm during an attack?
- could triptans help?
- Is this a migraine?
- Could it be a cranial nerve spasm?
- What is THIS???

In the meantime the attacks continue to worsen. I'm at wits' end. I fear there will never be a solution, currently I'm just hoping for a cause.

Any help is greatly appreciated...thank you for reading this long post!!

/Alex

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