I'm completely lost and hoping to find answers to a condition that I've been suffering for 7 years. I'm a healthy 33 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. 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. I could not lie down and had to jump up. I thought I was having a stroke and could barely make it to the door. I screamed in pain as my entire left side shook, cramped and basically just exploded. 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. The pain disappeared after 30 seconds and I went to bed. It took me weeks to forget the pain.
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.
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*. I do have third molars, but according to the dentists, it's highly unlikely they're causing anything. Maybe they're causing my jaw pressure, possibly the strain behind my left eye. I'm planning on having the third molars removed.
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.
Overview of the symptoms:
- sudden cramp "attack/seizure" which lasts for roughly 30 seconds
- always one side of body
- main cramp/pain starts behind left eye, left jaw, left neck/base of head, down left arm peaking inside left wrist/hand
- almost always happens at evening/night (once it happened at work during the afternoon)
- pressure often felt behind left eye and jaw during the days
- malaise and panic-like symptoms before onset, heightened blood pressure, "thumping heart"
On circulatory system is fine. Doesn't look like migraine or cluster headaches. Not medication so far as managed to delay it or stop it. Paracetamol, aspirin, valium, various cluster headache treatments have no effect. Cooling the neck and face is the closest I've come.
If anyone can point me in the right direction I'd be entirely grateful. I'm slowly seeing no solution to this :((
Well, first of all, I hope you have cut waaaay back on the hours you spend in front of the computer. Next, I think you are indeed having a seizure, despite what the EEGs and MRI did not show. Looks like your doc could just give it a try and medicate you with a standard epilepsy medication, just to see how you do... if he won't do it, find a doctor who will.
If you are left-handed when you use the mouse, switch to the right hand for at least a month. Always keep your head at least an arm's length away from the computer screen. Get up every hour like clockwork and stretch and look out the window. The computer screen should not have reflections on it and there are screen covers that will prevent that. Also, have an opthalmologist and optometrist doublecheck your eyes and eyesight all over again, especially doing the glaucoma screening and checking out your retina.
You should visit an ear nose throat ENT, to make sure you don't have an earache or sinus problem. See can you get one of your MRI reports and pictures to that doc. There are nerves and blood vessels behind the eye, and he may see something the radiologist didn't see.
Lastly, could be you have wrenched your neck somehow, all those hours of sitting in front of a computer, where you may have leaned to the left for so many years, that you've torn it up, in which case you must get a new CAT scan your neck, and get both a neurologist and an orthopedist to look at that and tell you what they think.
But I have to add that it sort of sounds like your brain went nuts, but since the MRI did not show any damage, I am clueless as to what exactly that explosion you report may have been, especially since it keeps firing up like that. I hope others who post here will have more concise information as to what that sounds like to them, as a problem in the brain itself.
thank you for replying to my thread!!! Yes, I have tried to limit the amount of time I spend in front of the screen. However, since I work in IT, that's been relatively difficult. During holidays away from the screen (up to two weeks at a time) I still had the seizures even though I managed to avoid the screen for the complete duration of the holiday.
My first theories were in fact epilepsy, but I dropped that after the EEGs and MRI were negative to that theory. I'm sure there's still a slight possibility of epilepsy, possible a good chance that it's epilepsy.
When I return to the neurologists, I will ask for some generic anti-seizure meds. Possibly, if they are seizures, than at least I can carry on with everyday life until I find an answer. My hope is, that it's a swollen artery or nerve behind the eye, maybe that triggers some sort of reaction within the brain? It's all pure speculation, but somehow that's what it "feels" like. Possibly a combination of a wrenched neck, bad third molar, a swollen nerve behind the eye and too much work in front of this cursed machine.
I've made an appointment with the ENT doc, and I just returned from the dentists who told me that there's almost no connection between the wisdom teeth and the attacks.
The next step is to try and get an appointment with the orthopedist and have another MRI done. I'm not sure I understand that there's a connection with the neck and face or eye region, but at this point I'm willing to try anything.
Thank you again for taking the time to read though my posting, you're given me some food for thought and optimism!
I also hope others on this board can bring forth some information, even if it's just a small one or speculation. Possibly people with epilepsy that can maybe relate to the symptoms I'm having?
I have had similar seizures for almost 15 years now (37). They started out, maybe 1/month while sleeping but then developed. My diagnosis have been epilepsy although they can not find anything abnormal on EEG, MR, Beta tomography, etc etc (have been to many checks over the years). I have cramps on the right eye that develops to the right side of my face, sometimes also neck/right arm; lasting for about 30 seconds.
I am on medication (Lamictal) which works reasonable well, but it only works in combination with regular sleep/regular running/cycling etc. After about 5 years it became more severe, and without medication I will have a typical grand-mal epileptic fit. As I have lack of IgA (immune system) gene; doctors have evaluated this as an explanation. Missing this part of the immune system doesn't always result in any problems, but it is a potential. They haven't really come to any conclusion though. I am fed up with all the examination, testing of new medication etc so I've "given up". My life is more or less normal, can drive car + 100% work + active fysical. But as you say; when it happens in public (metro, meetings, dinners etc.) it is not very nice!
Maybe you could check for the IgA at least? Would be interesting for me also! If Lamictal is right for you I have no idea. Everybody seem to react differently on various medication.
I thought a year later I would let you know my diagnosis was Multiple Sclerosis. My PCP (primary care physician) found a Vitamin D deficiancy and thought that in conjunction with Carpel Tunnel Syndrome would cause that. In September I started having problems with my left eye, vertigo and eventually double vision.
I hope yours is treatable and I wish you the best.
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