Occipital Neuralgia and other Cranial Neuralgias For discussion of Occipital Neuralgia, Glossopharyngeal Neuralgia, Nervus Intermedius (or Geniculate Neuralgia), and Vegal and Superior Laryngeal Neuralgia. (Trigeminal Neuralgia has its forum below.)


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Old 01-30-2009, 11:23 AM #1
UCC NU 4EVER UCC NU 4EVER is offline
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Default New member ON Tried Everything

Hi everyone

New to site. Glad I found it. I have had UN for the last 5 years plus. I have been to every major hospital on the East Coast including Hopkins, Georgetown and Jefferson.

I have tried just about every treatment out there including major surgery. Still nothing. You name it, I have tried it...at least that is what I am told. I look forward to reviewing the forum to see if there is anything new to the field of research.

Right now I manage day to day by grinning my teeth and taking Hydro, morphine or hydromorphone.

Life sucks with UN. But I am glad there are others to share with.
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Old 01-30-2009, 01:05 PM #2
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What does the U stand for, I tried to search for it, but not finding anything.

I'm sure the N is for neuralgia of some type.
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Old 01-30-2009, 02:49 PM #3
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My mistake

I meant ON. I have been working on some govt papers and have the UN on my mind.

I have Occipital Neuralgia.

My fault. Please forgive me. I am having pain today that started last night. Not much sleep which is why I make simple mistakes.

Look forward to chatting on this site. I am close to losing hope and to hear from others has lifted my spirits.

Thank you
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Old 01-30-2009, 04:05 PM #4
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I can fix the title for you.

hang in there..
You can read the stickys { http://neurotalk.psychcentral.com/thread45497.html }and threads of others til you get more replies here..
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Old 01-30-2009, 05:58 PM #5
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Welcome UCC, but sorry you're here. I can relate to your pain all to well and the lack of sleep. ON has made me really appreciate what it used to be like to sleep well. What treatments have you tried?
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Old 02-01-2009, 11:53 PM #6
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Welcome to the club and so sorry to have you have to join. I have ON too and I am on hydromprphine-both the 12 hour one and the 4 hour one right now. I am having horrible insomnia from it and no appetite. Does it bother you at all? I take sleeping pills but they mostly don't help.

I see a pain specialist and had one surgery in Nov and am having another in 3 weeks.
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Old 02-02-2009, 12:22 PM #7
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Unhappy

Thanks everyone

I am just happy to know that I am not losing it. Thank God I have a family that understands and a wife that supports me. I go to see Dr. Duchek at Georgetown Hospital on Tuesday. We will be discussing a second surgery. He is a wonderful doctor and is on the cutting edge. To bad I am one of the 10 percent that do not see change.

My primary changed my meds (added morphine) which has helped. Still not sleeping. Sad things is, when I do sleep I can go out for 24-36 hours ESAY. Anyone else go through this?

I will list me treatments and help out anyway I can. As far as the East Coast of the US goes, I think I have seen all of the major doctors. I am at work so I cant do it now.

Thanks again...just when I hit rock bottom I sank even further. I really hate my life right now and I am only 43.

Ill report on my visit .
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Old 02-16-2009, 03:16 PM #8
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Default ON

Quote:
Originally Posted by UCC NU 4EVER View Post
Thanks everyone

I am just happy to know that I am not losing it. Thank God I have a family that understands and a wife that supports me. I go to see Dr. Duchek at Georgetown Hospital on Tuesday. We will be discussing a second surgery. He is a wonderful doctor and is on the cutting edge. To bad I am one of the 10 percent that do not see change.

My primary changed my meds (added morphine) which has helped. Still not sleeping. Sad things is, when I do sleep I can go out for 24-36 hours ESAY. Anyone else go through this?

I will list me treatments and help out anyway I can. As far as the East Coast of the US goes, I think I have seen all of the major doctors. I am at work so I cant do it now.

Thanks again...just when I hit rock bottom I sank even further. I really hate my life right now and I am only 43.

Ill report on my visit .
yes, i relate ON for 14 mos. am 41 not liking this
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Old 03-21-2009, 05:31 AM #9
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Quote:
Originally Posted by occ14mos View Post
yes, i relate ON for 14 mos. am 41 not liking this
Hi. I am going onto 2 years of this and am about out of my mind. This past week I may have slept 10 hrs.. I have been advised against surgery by 2 Neuro Surgeons. I have had shots and several other treatments that just irritated my head even worse. Message therapy is out of the question as well as physio therapy, by the end of a few sessions of these kind of treatments I was about to bite the therapist!

The only local pain specialist in this area that made any sense retired 6 weeks after I found her. She worked so hard on trying to get me some relief.

Am on a couple meds that have made some difference in how I manage each day but I am a million miles from the answer to this pain that has turned my life upside down.

Godspeed to all who are in search of relief of whatever ails you.

Chloe

Last edited by just_chloe; 03-21-2009 at 06:44 PM.
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Old 03-21-2009, 10:39 PM #10
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Quote:
Originally Posted by UCC NU 4EVER View Post
My mistake

I meant ON. I have been working on some govt papers and have the UN on my mind.

I have Occipital Neuralgia.

My fault. Please forgive me. I am having pain today that started last night. Not much sleep which is why I make simple mistakes.

Look forward to chatting on this site. I am close to losing hope and to hear from others has lifted my spirits.

Thank you
If you are in the DC area consider contacting:
Robert D. Gerwin, MD, private practice pain management.

Pain and Rehabilitation Medicine, 7830 Old Georgetown Drive, Suite C15, Bethesda, MD 20814-2432;

T: 1-301-656-0220
F: 1-301-654-0333
Website: http://www.painpoints.com/
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