Cyclic headaches, neck tension, unilateral seizures

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MrFun
New Member


Date Joined Apr 2010
Total Posts : 2
   Posted 4/18/2010 10:09 AM (GMT -6)   
Hello everyone,

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 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 chronic pressure in the head, especially behind my left ear 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, nervousness or dizziness, malaise. I now just call it an aura.

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.

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. I scream in pain as my entire left side shakes, cramps and basically just explodes. It felt as if someone had takes 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 call it "pain", because while it definitely hurts, it's just that it's too extreme to describe. 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. The intervals were often so precise, that I could plan my day around them, e.g. "Next Tuesday I'll get one between 9pm and 10pm"!

I get these auras all the time now and is making me really drawn back. Very difficult to concentrate at work and my private life is rotting away because of the anxiety and panic associated with not knowing what these attacks are and how to cure them.

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 hardly go out anymore, something I should do. Most often they don't lead to seizures, but at least a few times a week they do

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*.

Last year I went to hospital at an epilepsy clinic where they ruled out epilepsy, even though it does look like epilepsy. I didn't react to any AED (took Keppra for one month), I took 10mg diazepam and still had them, I took lyrica, still had them. I took indomethacin, still had them. They could be psychogenic seizures, but they're just not sure...nothing stops these attacks :(

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.

If anyone has heard of anything similar or has any idea what it could be or how anything can help, I'd love to hear from you. Thank you so much for getting this far :)

All the best,
Alex

SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 4/20/2010 4:58 AM (GMT -6)   
Keep going to doctors a teaching hospital is known for not giving up on patients
 
Smurfy Shadow/Desirèe 
DX: Wegener's Disease, Migraines, Diabetese Type II, PCOS, Lactose Intolerant, Benign Heart Murmer, Depression, Asthma, Asperger's Syndrome, Necrotizing Gramultous Inflamation in eye, A.D.D., Acid Reflux, Tumor Behind the Eye, Carpal Tunnel, Fibromyolgia, Clasterphobic, Arthritis
Medications:  Tri Nessa, Percocet, Metformin, Prilosec, Protonix, Zantac, Advair, Cingulair, Albuterol, Calcium + Vitamin D, Pro-Air, Pepcid, Rolaids, Zofran, Compuzeen, Refresh Plus Eye Drops  PRN: Epi-Pen, Albuterol Nebulizer, Benedryl
Undergoing Radiation Taking Lorazepam (Ativan) on Radiation Days


MrFun
New Member


Date Joined Apr 2010
Total Posts : 2
   Posted 4/21/2010 1:01 PM (GMT -6)   
Thank you for responding, Smurfy! :)

A teaching hospital might be a very good idea, because the "veteran" doctors have all given up and are suggesting hypnosis, acupuncture and the like. I just keep on keeping on somehow. I just wish there was something, anything, that will stop the seizures. :(

*desperate*

SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 4/22/2010 11:38 PM (GMT -6)   
Accu beads is better than accupuncture. hehe they are like lil balls on tape that u tape in ur ear and when you hurt u press the bead. your ears have mroe nerves than you can immagine. I do accu pressure and accu beads on my ears.
 
Smurfy Shadow/Desirèe 
DX: Wegener's Disease, Migraines, Diabetese Type II, PCOS, Lactose Intolerant, Benign Heart Murmer, Depression, Asthma, Asperger's Syndrome, Necrotizing Gramultous Inflamation in eye, A.D.D., Acid Reflux, Tumor Behind the Eye, Carpal Tunnel, Fibromyolgia, Clasterphobic, Arthritis
Medications:  Tri Nessa, Percocet, Metformin, Prilosec, Protonix, Zantac, Advair, Cingulair, Albuterol, Calcium + Vitamin D, Pro-Air, Pepcid, Rolaids, Zofran, Compuzeen, Refresh Plus Eye Drops  PRN: Epi-Pen, Albuterol Nebulizer, Benedryl
Undergoing Radiation Taking Lorazepam (Ativan) on Radiation Days


LauraSue
New Member


Date Joined Nov 2010
Total Posts : 1
   Posted 11/8/2010 7:32 AM (GMT -6)   
Look into Aronold Chiari. It is a birth defect that is a narrowing passage in the base of your skull, applying pressure on brain stem and spinal canal, and give symptoms that you are describing. By chance if you would be tested for this make sure you have an MRI with spinal fluid flow (CINE)

marker
New Member


Date Joined Oct 2010
Total Posts : 2
   Posted 11/8/2010 10:02 PM (GMT -6)   
Mr. Fun,
   My daughter has similar symptoms - though not completely parallel with yours.  Also there is a post on HealingWell by jlauer whose wife suffered similarly.  Just this week we took jlauer advice and have done testing with Neuro-Science Labs.  They are MD's and research scientists.  We will have the results in a week or so. 
   They check lots of things that might cause seizures like neuro-transmitting amino acid levels, cortisol levels etc.
    Hope this helps.  I will definitely post again if my daughter gets the help she needs from neurorelief.com.
 
 
 
 
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