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.

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.:)

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

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..
:grouphug:

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?

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.

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 .

ON
 

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.. :eek: 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! :winky:

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

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/

. 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! :winky:

If the massage therapy hurt or distressed you that much, then you need to find a more competent one who is very sensitive to your condition.
Abandon any ordinary masseuse, but look for one that offers remedial massage.
Get them to work on your back and shoulders, as there are very strong muscles there that run alongside the neck and can cause awful headaches.
I was convinced that I had ON but my massage lady, as well as my new pain doctor, said my head pain was muscular in origin, and from the back, particularly the shoulder blades.
I have now almost no headaches at all. I have a remedial massage for 40 mins once a week, later it will be fortnightly, and longer if possible as I get better.
She found lots of knotted shoulder muscles, and very tight and sore neck muscles.
I also do a light stretch/ exercise routine for 30 mins a day, as prescribed by a clinical physio. All of this stemmed from my new pain doctor, and is seen as the latest way to treat chronic pain.
I wasn't diagnosed with ON, but from what I had read it seemed to be what I had.
So much chronic pain is muscular in origin, yet it gets overlooked by suspected spinal conditions.
I am so glad that I changed pain specialists as the facet injections were only some benefit, and there was no future.
Now I am reducing my pain meds by more than half, have lost my chronic headaches and shoulder pain, am back into exercising and getting things done again, and sleeping much better.
It is well worth the effort to find a good remedial massager and get your muscles sorted out.
The chronic pain will have stopped you doing much so your muscles will have deteriorated and will need to be given some TLC to recover.

Hey I am curious: DO you also happen to have MS? I am finding more poeple with MS who also have ON as a symptom. Mine has been in a relapse for 23 months and I am currently doing chemo (it's HELL-I am pretty sick) to try and get my immune system to settle down. THe ON is the worst symptom of my MS.

THere is a thread on the MS boards right now on ON that I am following. I'll report back if I learn anything new.

I am 38 and not liking this a whole lot either. In fact, it really sucks.

I've been getting massaged for more years than I've had ON and the massage hasn't helped the ON at all, for what its worth.

Sorry to hear that EEO3, would be nice if it was so easy to fix.
At least you are looking after your muscles, so that must help.