"headache" at the back of my eye

Hi I have had a bad headache it is behind my left eye. My eye feels swollen, the pain radiates down my face. Its been like this for weeks now. I get these often they start like this then gradually I get light headedness as if I have low blood sugar. I can't relly be bothered to go to dr as I always feel I am waisting their time. At the moment don't feel like doing much at all...

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Hi Runu.

These things are always good to check out; As a Doctor told me its “old age syndrome”. Any our age can get sore an eye which means glasses could solve the problem. It may not have anything to do with NF. First steps easily checked with an eye test. It may need a follow up. Also could be a diabetic thing thats another easy test.

Good luck. gives a call sometime if you want.
Bye Tony

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I get migraines and the kind you are talkling about I get often, NF can cause migraines. I went on Relpx for migraines and it changed my life. It works great. but you have to take it at the first sign of a migraine. Ask your Dr, about migraine medicine.

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I also get pains and headaches in my left eye. Mine go back to my neck and up to the forehead. You are not wasting thier time, its thier job to make you feel better and to listen with care to what you have to say. Although I know how you feel. Docs roll thier eyes at me and make me feel guilty for coming to see them... tell me that my pains and other symptoms are not that bad. Maybe they would rather be playing golf. Sometimes I feel like thier bad carreer choice means I hafta tell my problems to a pro golfer in a white coat. Know what I mean?

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Hi everyone I get headachs just about everyday and migraines about 2 to 4 times a week my doctor has put me on some med. to help but it really don't help, about 3 months ago I had a MRI of my head and neck but nothing was found. My headaches really get in the way of everyday life it's hard to get just about anything done, sometimes I even find it hard to play with my son. I'm 22 yearsold but I feel much older.
Anyone has any ideas on how to cope with these migraines and headaches please let me know

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For me the only thing that works is painkillers. Try anti seizure stuff and lyrica, neurontin, etc. It didnt work for me but I tried.

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Yes, migraines are frequently associated with NF. So are brain tumors and other tumors of the orbit. Your symptoms could also go with glaucoma which if not caught early can result in incorrectable vision loss. Glaucoma is one of the leading causes of blindness. You should also get your BP checked. Really, please...go see a doctor.

Cindy

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Runu,
My son had the same symptoms and problems. He also has NF1. My personal opinion is that you need to go see a opthalmologist in your area. The best. They found a tumor behind my son's eye, glaucoma and a tumor on his trigeminal nerve. That nerve runs down the side of your face and causes sensations. He just recently had some surgeries due to the fact that he was in severe pain. Please go see you doc. Where are you located?

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i have that , u go a neou fib rf behind the eyes they cant see it , well a reg eye dr cant u have to go to a special eye dr that knows of nf, i probly spell it wrong but it has to do with nf mine is the right it gets swallow and hurts, even light hurts

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neurtion is bad for nf people to take i know i got it

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thats wierd, the pain goes into my face as well... maybe i should get looked at.

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Hi There ,
Thanks everyone. Still have headache, but feel no longer like an extra from the Adams Family. The head/eye ache radiates into my face, and then have light headdedness. I will go see Dr. The problem lies in that my daughter has NF too so I see the Dr for her. So I feel they see enough of me as it is. I suppose I am feeling very low at the moment so don't feel like talking to someone who dosent understand. hence I talked to you guys...thanks again.

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I would recommend you get some of the pains in the head checked out. Demand and MRI...I used to get sharp pains behind my eye that felt like a hot poker was trying to get out. Some of the pains have subsided a bit since surgery. But often they were accompanied with a warm swollen feeling and ringing in the ears. OTC pills didn't help and in fact made me sick sometimes.

I would try meditating when the pains became extreme in order to fall asleep and sometimes that didnt' work.

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In response to guilty_spork. I get those same headaches! I just came from a neurologist today and he just brushed it off as "migrane headaches". I'm sorry, but I don't see how a migrane only effects on one side of the head (for me, it's the right side) ..it starts in the back of my neck.. and expands over the back of my eye. It HURTS. I don't have sensitivity to light..or sound.. never know when I get them... they're never in any other location of the brain..but yet.. they're still migranes.. hmm

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I love how people try to tell us what symptoms we have and what they are when we live with them.

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Hi sounds like what I get. Then other times I get the migraines too which start with flashing lights from the corner of my eye. So if I don't have one I have the other. On top of that the left side of my face is paralyseddue to to something that happened (12yrs) ago when I was pregnant. Nothing was done or explanation given, I am left with permanent nerve damage and I start slurring when I get tired. When I get my eye/headache my face goes stiffer. I wear very strong glasses so have to have my eyes checked regularly, its not my eyes causing the problem this time (I think). All I can say is thank God I am not a horse ...I'd be a jar of glue.
wpcooper what was the surgery you had?

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the surgery I had was a fusion in the back of my neck...I think I have tumors in my head, but they really cannot be removed through routine surgery.

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Atypical migraines can run a huge range of symptoms and it's not all that unusual for a migraine to be one-sided, and in fact that's the typical migraine.

browneyeyes_39,

What do you mean neurontin is bad for people with NF to take? It's frequently prescribed for nerve pain.

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Yesterday I had one of those brutal monster tension headaches, felt like my neck was On Fire!! Branding Iron style!!
Pain from the middle of neck to behind eyes.
It came on about 4 pm, at 6 pm I had supper & took 3 Naproxen, went to bed @ 8:15.
Today was better, I did me normal up @ 5, worked 6:30 - 5:00.

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Hi I have these headaches often. but have never been prescribed anyhing at all or had further investigations. Never heard of lyrica, neurontin, I just take over the counter painkillers for several days then stop, as otherwise would most propably end up overdosing myself accidentally since the headaches last two weeks plus.
I had a large tumour removed from the back of my neck, which was the size of an egg, but it sort of radiated fingers into my skull that had to be pulled out.

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