Occipital Neuralgia and Chronic Pain

[CelticRain30]

I have had Greater and Lesser Occipital Neuralgia and Chronic Pain since 1998 and been looking at pretty much anything and everything about it that I can, internet, library, doctors pamplets, you name it and I have read or tried it, nerve blocks, freezing, radio frequency lesioning, medications of ALL types. Nothing has touched my pain, the most relief I got was from the radio frequency lesioning and that varies from person to person on how long it will last. For me it was only a few short weeks.
Before I lose my train of thought... I was trying to say that there really isn't anything helpful to me in everything that I have read, heard, seen, or tried.
Most everything I have read all say pretty much the same thing: Occipital Neuralgia doesn't interupt everyday life/living.
For me thats a lie. My everyday life has not been normal since this has happened to me. I resent the fact that they all say that but no one mentions that it can also be really severe along with interupting your everyday life/living.
Does anyone else feel like this? Does anyone have a good website or reading material about Occipital Neuralgia that you can suggest?

Wishing Well,
Kendrah

p.s I have also posted this under the Occipital Neuralgia forum, but thought as this forum gets more views I might post here as well with hopes to thoughts and suggestions. Thank you all for putting up with me!!!
xoxoxo

[sallyb]

I have chronic pain from T8/9 to the floor. I am sooooooo thankful that my head is not involved in that mess. Head pain is so much harder to treat, from what I understand. I feel for you.

There are a few here who suffer chronic pain in their heads. I am sure somebody will come around to give you some info.

Your friend.....sally

[cindybear]

Boy, Do I know where you are coming from. I have a inoperable aneurysm that is pulsating on the trigemenal nerve..For 6 years..The pain is horrible..The Jabs and jolts that I get, the only meds that have really helped that is topamax..but the horrible relentless pain, the morphine and methadone just dulls that to a 5..I just wanted to lrt you know, you are not alone...Hugs, Cindy

[CelticRain30]

I want to thank you for responding to my sometimes rambling posts, ( I am prone to lose my train of thought at times) and a big Thanks to you Sally, I love hearing from you because you make me feel less alone, and I only have that from a very select few, including my family.
Cindybear, I had to wait almost 3 months for my results to see if I had a aneurysm this summer, it was the scariest time of my life. I was lucky as everything came back free and clear. I am sorry to hear that yours is inoperable though, what are your drs doing for treatment and how do you handle the pain? I am sorry if I am being to nosy, but I like to know everything I can. Espeically if I hear someone else has head pain, that way I can take ideas back to my neuro and ask lots of questions to see if it can help me if it helps someone else.
Do your eyes dilate? Or just one of them? Am curious because my right eye dilated during a migraine and my drs told me after a battery of tests that that is the first sign of an aneurysm. They now think my ON is getting worse and causing my eye to dilate before, during, and after a migraine. They think I have more pressure inside my head and its releasing in my eye and by breaking blood vessels in my face. I look and sometimes feel like a battered person, all bruised and red from it. Even though they said I am free and clear I am still scared everytime it happens that I might have one and they missed it. They told me they have never seen one eye dilate without a aneurysm before.
Anyhow its late so I am off to bed, talk to you all later! And Thanks again!!!!!

Wishing Well,
Kendrah

[sallyb]

Kendrah, please send a private message to Kathi49 . She is awaiting your message. She has a few things to help you with the ON.

Hope this helps! Your friend.....sally

[CelticRain30]

Sent one to her late last night!

Wishing Well,
Kendrah

[Kathi49]

Hey Kendrah!

I got your back! Or, should I say, the back of your head. I have sent you a PM and hope you got it.

Cindybear is right...this stuff is horrible and NON STOP! Although, mine all ceased with a fusion. However, after I have read all of your posts, you guys seem to have more going on than what I had. Mine was strictly from my C3/C4 cervical spine and the facets were just crushed with osteoarthrits.

I used to read up on ON all the time and you are right...I think there was only one site that I saw that mentioned the pain is severe and debilitating. I know I was missing work right and left and was completely bedridden NUMEROUS times. I could go on and on but I don't have to because I know how you all feel...it is the worst pain known to man I think. I have read, seriously,that it is second Trigeminal neuralgia on the pain scale.

Okay, so here I sit now with a second fusion (C5/C6) and I am having that awful occipital pain and tightness. But this time, MINUS the electrical jolts and jabs! So, I think it is just muscular for now.

Anyway, IF there is anything I can do or help you with, let me know. We both live in Indy and I know of quite a few good doctors that could probably get you straightened out. Oh, I was going to ask you if you think the RF might have made things worse? Hang in there!

[sallyb]

Thanks for coming to the rescue!!!

sally

[cindybear]

Hi celtic,
Sorry it took me so long to get back to you, Had a couple of bad days,,,Bad pain days...I have a pain management doc that try to make my life bearable..I'm on 90mgs of morphine and 60-80 mg of methadone. 200 mgs of topamax and ativan 2 times a day..Every once in a while I have to get injectables..My doc gives them to me at his office..We have talked about me receiving them at home and hubby giving them to me..Thats Demerol and visterol. (150/75 mgs ) But so far, so good. My other docter that I have is my Neurosurgeon..I had brain surgery, and it didn't work (Jan 2005 ) Put a stent in and I had a stroke..A horrible day !! Then I had 4 angiograms following that year..Now I'm waiting till Jan of 2007 to have another angiogram to check on it, They check the stent placement and to see if the aneurysm has growned any..We hope it doesn't grow anymore...Thats the reason we had the surgery, cause it grew..But now I'm on so many resrictions. So this monster doesn't grow...A person can't have any fun,,I wouldn't feel like it anyway..But I have to leave the house 2 times this week. And it's really gonna be hard on me...I don't look forward to it at all. I just got my disability this year..I fought for it for over 5 years for it..I knew I could never work again..Half the times I can't even think...But I wanted to let you know, I know your pain hon,,And if there is anything I can do for you let me know,, I'm allways home..Unless they force me out of the house,,,Hugs, Cindy

[phutsach]

anyone else out there have any experience of this...following a car crash 4 years ago i have been in bot only chronic whiplash syndrome (pain in the neck!!) but the riht side of my head issort of num and yet also hurts so much and feels like i have a lobster attacking the back of my brain all day every day...is this normal? this is the first time i have used a forum...just want to know i have tried everything and am not going mad!