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Old 10-03-2019, 02:08 PM
Location: Sheffield, England
1,780 posts, read 333,986 times
Reputation: 1026


I'm a 32 year old man who's dealing with some horrid neurological symptoms for a few years now.

Background: I have always been severely underweight (6'4" and 130lbs for example) and also have celiac disease (diagnosed 2010).

The nerve symptoms I'm about to describe start up whenever I try to gain weight (which includes weight training, minimal fat gain and healthy eating). I am almost up to a healthy weight and don't want to get any thinner again.

Basically after meal times I get awful excruciating stabbing pains in the orbital area basically like being stabbed in the eye. It is bilateral (though not necessarily at the same time) and quite spontaneous with no pain at all in between attacks. It has become steadily worse over the last year to where it has "sensitised" such that it happens every day and many times, specially after eating almost anything.

I finally saw a doctor about it last month and they said the closest thing it sounds like is Trigeminal Neuralgia. The doctor has put me on Carbamazepine and I am working up the dose each day. I am up to 400mg daily and tomorrow will be 500mg. I have not noticed any substantial decrease in symptoms yet.

It doesn't seem like typical TN to me. From research I've done, typical TN is unilateral, rarely affects the ophthalmic nerve (which is entirely what mine is affecting) and has trigger spots which when touched caused symptoms (not the case with me).

I am of the view that it's some form of ocular neuropathy.

Also, I've had blood sugar analysis, and have perfect blood sugar numbers. Even on 4,000 calories a day I never once had a reading over 106mg/dl. My blood pressure has never been over 120/70.
So we can rule out most serious metabolic factors.

Someone with a lot of knowledge about medical issues on a body building website keeps telling me I need to see an endocrinologist about it. I'm really not sure.

But I know this CANNOT go on. I am SICK of it. It is getting worse, but I can't go back to being malnourished like I was before and maintaining a healthier weight it seems to be very intense and causing a lot of distress.

I hope someone really will be able to help.

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Old 10-03-2019, 05:52 PM
4,412 posts, read 1,914,342 times
Reputation: 8940
There is something called ice pick headaches. That sounds like what you are getting as it does not sound like these last long enough to be considered migraines (which can also happen on both sides).

I agree that an endocrinologist is probably your best bet as a starting point. Something is happening when you eat that is clearly causing these headaches. You seem to have either some food allergy or sensitivity that needs to be addressed. People with Celiac disease are at a higher risk of developing other autoimmune illnesses. If you see someone for your celiac disease, you could also start there.
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Old 10-03-2019, 06:06 PM
2,745 posts, read 1,635,599 times
Reputation: 3370
Was the doctor you saw a neurologist? If not I would try that and/or a headache specialist because it does sound like ice pick headaches maybe? I have a rare nerve pain disorder so I totally understand how awful it is. I would pursue answers because it may be something you can fix rather than live with. Or treat to make way more tolerable. I hope you can get answers soon.
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Old 10-03-2019, 07:19 PM
Location: Sheffield, England
1,780 posts, read 333,986 times
Reputation: 1026
Thanks for responding, I've only spoken to a GP so far, who is going to contact me in a few days (probably to check if I need a repeat prescription for the medication and see how it's going), so I'll mention about referral to a neurologist and/or endocrinologist.
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Old 10-04-2019, 09:12 PM
Location: Brawndo-Thirst-Mutilator-Nation
16,851 posts, read 17,005,238 times
Reputation: 13064
It sounds like you have some significantly damaged cranial-nerves.....and they get aggravated by certain things you eat.

I think the most logical next step would be, working with a neurologist who can do EMG/NCV testing of the nerves in question.
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Old Today, 07:29 PM
Location: The Driftless Area, WI
3,056 posts, read 1,174,350 times
Reputation: 6700
The severity of the pain sure sounds like direct nerve irritation. Trigeminal neuralgia is almost always unilateral and doesn't change sides.. Herpes zoster (shingles) could be considered, but again, usually one side only and usually the tell-tale rash appears within a week or so (but not always).

..If it occurs with eating or with gritting your teeth when exercising, it may be a form of TMJ..

..Tumors etc affecting cranial nerves are usually localized to one side only-- what's the chance you have two tumors each in exactly the same location on each side?

You need a CT &/or MRI just to make sure. Try wearing a boxing/football type mouth guard when exercising. Maybe consult a dentist to evaluate your dental occlusion. (There's a reason they call your upper canines the "eye teeth")

Meds like Dilantin, carbamazepine etc can be tried on a trial & error basis sometimes they work, sometimes they don't

Oh, BTW- make sure you take the swizzle stick out of your scotch-on-the-rocks glass when drinking. I always forget and that gives me a sharp pain the eye every time.
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