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.)


advertisement
Reply
 
Thread Tools Display Modes
Old 04-09-2013, 10:07 PM #1
Jwebber57 Jwebber57 is offline
New Member
 
Join Date: Apr 2013
Posts: 3
10 yr Member
Jwebber57 Jwebber57 is offline
New Member
 
Join Date: Apr 2013
Posts: 3
10 yr Member
Heart My occipital neuralgia story

It was September 15 I vividly remember because it was my grandmothers birthday. I called her to wish her happy birthday and she asked how I was doing and I said I have a headache from hell. So I went on about my day.

Throughout the day the pain got progressively worse so I left work early and went home and took a couple of ibuprophen, this would normally help but this time it didn't. The next day I couldn't get out of bed becaus the pain was so bad but I kept on taking pills to ease the pain. A couple of days later it was so bad that I went to the emergency room, in typical emergency room fashion I was quickly medicated and for the moment the pain subsided and I went home.

Less than 36 hours later I was back again. This time they were afraid that it was meningitis so they gave me a barrage of antibiotics and ordered a spinal tap. Since I'm not a fan of pain they didn't get far with the spinal tap and I was sent home and referred to my primary doctor. So I followed up with my pcp and he said oh it's a migrane and referred me to a neurologist.
The first neurologist put me on topamax. Topamax was the devil in a pill. I had so many effects that I had to go back to the hospital and they flushed it out of my system. So I went back to my neurologist and he proscribed another pill I forgot the name off hand. But that didn't work.

Ill skip the months of sleepless night and daily agonizing pain and suicidal thoughts, because they were the worse months of my life hands down.

The neurologist pretty much told me I have a migrane and I would have to live with it, so I told him go to take a long walk off a short pier and I found a new neurologist. Best decision I've ever made. My current dr actually examined me, ordered catscans, MRIs and everything. I was officially diagnosed (after 5 months) with occicpital neurolgia.
He tried me on every pill under the sun and nothing worked. He suggested a nerve block injection to ease the pain. Well that didn't work either, but I did gain a few pounds.
So as of today it's almost 7 months in daily pain. I'm at my wits end, my job is bitching at me for leaving early everyday, and I need relief.
The only drug that kinda helped was cymbalta but its not covered by my insurance so I have to fight them.


I'm 30 and in chronic daily pain, i cant sleep, i cant work out, i cant work, i gained weight. Soit's taken it's toll on me me mentally, physically and emotionally. My partner actually told me today that my depression shows even tho I try my best to hide it.

That's my Story
Jwebber57 is offline   Reply With QuoteReply With Quote

advertisement
Old 07-18-2013, 06:23 PM #2
Snailz Snailz is offline
Junior Member
 
Join Date: Apr 2013
Posts: 14
10 yr Member
Snailz Snailz is offline
Junior Member
 
Join Date: Apr 2013
Posts: 14
10 yr Member
Default

Quote:
Originally Posted by Jwebber57 View Post
It was September 15 I vividly remember because it was my grandmothers birthday. I called her to wish her happy birthday and she asked how I was doing and I said I have a headache from hell. So I went on about my day.

Throughout the day the pain got progressively worse so I left work early and went home and took a couple of ibuprophen, this would normally help but this time it didn't. The next day I couldn't get out of bed becaus the pain was so bad but I kept on taking pills to ease the pain. A couple of days later it was so bad that I went to the emergency room, in typical emergency room fashion I was quickly medicated and for the moment the pain subsided and I went home.

Less than 36 hours later I was back again. This time they were afraid that it was meningitis so they gave me a barrage of antibiotics and ordered a spinal tap. Since I'm not a fan of pain they didn't get far with the spinal tap and I was sent home and referred to my primary doctor. So I followed up with my pcp and he said oh it's a migrane and referred me to a neurologist.
The first neurologist put me on topamax. Topamax was the devil in a pill. I had so many effects that I had to go back to the hospital and they flushed it out of my system. So I went back to my neurologist and he proscribed another pill I forgot the name off hand. But that didn't work.

Ill skip the months of sleepless night and daily agonizing pain and suicidal thoughts, because they were the worse months of my life hands down.

The neurologist pretty much told me I have a migrane and I would have to live with it, so I told him go to take a long walk off a short pier and I found a new neurologist. Best decision I've ever made. My current dr actually examined me, ordered catscans, MRIs and everything. I was officially diagnosed (after 5 months) with occicpital neurolgia.
He tried me on every pill under the sun and nothing worked. He suggested a nerve block injection to ease the pain. Well that didn't work either, but I did gain a few pounds.
So as of today it's almost 7 months in daily pain. I'm at my wits end, my job is bitching at me for leaving early everyday, and I need relief.
The only drug that kinda helped was cymbalta but its not covered by my insurance so I have to fight them.


I'm 30 and in chronic daily pain, i cant sleep, i cant work out, i cant work, i gained weight. Soit's taken it's toll on me me mentally, physically and emotionally. My partner actually told me today that my depression shows even tho I try my best to hide it.

That's my Story
Hi are you still around on this board? I'm 32 and my story is very similar, my problems also started one day with a massive headache, I had some wine the night before so I figured I was hungover with only a couple of glasses. The headache lasted 2 days and following that I had these weird pains in my eye, I also went to a&e, they were not much help but did refer me to a neurologist, that's where I am at now, he's a nice guy but I feel like he doesn't take me seriously, Iv had to push for my tests, Iv had an ct and mri both came back normal, I'm now waiting for a second mri which I hope will be with contrast, he wants to try the nerve block but I'm nervous about this. My pain makes me depressed but more frustrated that I don't know what's causing it. The drugs make me tired and feel sick
Snailz is offline   Reply With QuoteReply With Quote
Old 07-18-2013, 08:40 PM #3
Jwebber57 Jwebber57 is offline
New Member
 
Join Date: Apr 2013
Posts: 3
10 yr Member
Jwebber57 Jwebber57 is offline
New Member
 
Join Date: Apr 2013
Posts: 3
10 yr Member
Default

Quote:
Originally Posted by Snailz View Post
Hi are you still around on this board? I'm 32 and my story is very similar, my problems also started one day with a massive headache, I had some wine the night before so I figured I was hungover with only a couple of glasses. The headache lasted 2 days and following that I had these weird pains in my eye, I also went to a&e, they were not much help but did refer me to a neurologist, that's where I am at now, he's a nice guy but I feel like he doesn't take me seriously, Iv had to push for my tests, Iv had an ct and mri both came back normal, I'm now waiting for a second mri which I hope will be with contrast, he wants to try the nerve block but I'm nervous about this. My pain makes me depressed but more frustrated that I don't know what's causing it. The drugs make me tired and feel sick

Yup I'm still here my friend.
My neurologist threw his hands up in the air and was about to put me on pain pills but he decided to refer me to the mayo clinic instead... My first visit is August 1st ill keep ya posted about it.
But in regards to work I'm now on light duty because I can't work a full shift without it.

And I know your pain I've been hella depressed, miserable, no desire to go out or do anything. I've gained weight. I've tired the nerve block but I gained weight from it.

What meds are you taking?
Jwebber57 is offline   Reply With QuoteReply With Quote
Old 10-31-2013, 12:53 PM #4
Murfisto Murfisto is offline
Junior Member
 
Join Date: Oct 2013
Location: Central west coast of Florida
Posts: 13
10 yr Member
Murfisto Murfisto is offline
Junior Member
 
Join Date: Oct 2013
Location: Central west coast of Florida
Posts: 13
10 yr Member
Default Hi to fellow ON sufferer

Hi there, Luckily, it only took perhaps 12 different doctors to finally figure out that my main problem was ON and my pain manager began aggressive therapies to help manage my condition. Yes, he tries lots of injections that gave me no relief. finally he recommended RFA's (radio frequency ablation-look that up if you are interested). His first try was on my right side greater- and lesser-occipital nerves in my neck. No anesthesia, only locals. The whole process, using borrowed equipment (which came with a knowledgeable technician), took 6 minutes (plus the time to locate the nerves and set me up). Relief came instantly and lasted just short of 3 months. Succeeding procedures gave relief but for shorter and shorter intervals until it no longer worked and, in fact, gave its own pain source from irritating those wonderful occipital nerves, so, we stopped them. the pain continued and, in fact, became more intense, so the Dr. went to the next step and tried RFA'ing at the C2 spinal nerve. big mistake. 3 months of very intense radiating occipital pain followed which my Dr. could not and still doesn't understand. so right now, we are back to point 0, where i was almost 6 years ago!
PS: I am so glad to have found this site but so sorry to have found so many other sufferers.
Murfisto is offline   Reply With QuoteReply With Quote
Old 11-26-2013, 02:04 PM #5
Johnsn123 Johnsn123 is offline
Newly Joined
 
Join Date: Nov 2013
Posts: 1
10 yr Member
Johnsn123 Johnsn123 is offline
Newly Joined
 
Join Date: Nov 2013
Posts: 1
10 yr Member
Cool Medtronic neurostimulator

Quote:
Originally Posted by Jwebber57 View Post
It was September 15 I vividly remember because it was my grandmothers birthday. I called her to wish her happy birthday and she asked how I was doing and I said I have a headache from hell. So I went on about my day.

Throughout the day the pain got progressively worse so I left work early and went home and took a couple of ibuprophen, this would normally help but this time it didn't. The next day I couldn't get out of bed becaus the pain was so bad but I kept on taking pills to ease the pain. A couple of days later it was so bad that I went to the emergency room, in typical emergency room fashion I was quickly medicated and for the moment the pain subsided and I went home.

Less than 36 hours later I was back again. This time they were afraid that it was meningitis so they gave me a barrage of antibiotics and ordered a spinal tap. Since I'm not a fan of pain they didn't get far with the spinal tap and I was sent home and referred to my primary doctor. So I followed up with my pcp and he said oh it's a migrane and referred me to a neurologist.
The first neurologist put me on topamax. Topamax was the devil in a pill. I had so many effects that I had to go back to the hospital and they flushed it out of my system. So I went back to my neurologist and he proscribed another pill I forgot the name off hand. But that didn't work.

Ill skip the months of sleepless night and daily agonizing pain and suicidal thoughts, because they were the worse months of my life hands down.

The neurologist pretty much told me I have a migrane and I would have to live with it, so I told him go to take a long walk off a short pier and I found a new neurologist. Best decision I've ever made. My current dr actually examined me, ordered catscans, MRIs and everything. I was officially diagnosed (after 5 months) with occicpital neurolgia.
He tried me on every pill under the sun and nothing worked. He suggested a nerve block injection to ease the pain. Well that didn't work either, but I did gain a few pounds.
So as of today it's almost 7 months in daily pain. I'm at my wits end, my job is bitching at me for leaving early everyday, and I need relief.
The only drug that kinda helped was cymbalta but its not covered by my insurance so I have to fight them.


I'm 30 and in chronic daily pain, i cant sleep, i cant work out, i cant work, i gained weight. Soit's taken it's toll on me me mentally, physically and emotionally. My partner actually told me today that my depression shows even tho I try my best to hide it.

That's my Story

Hi, I am Janelle, a retired interior designer with occipital nerve damage. I was 52 when I got my first stimulator installed; I was one of 25,000 in the US to have this device. It took two years of blocks, injections, NSDs, anti-inflammatory pills to finally be approved for the stimulator. Medtronic has been a lifesaver for me. I trying to get approval for my 4th unit. I recharge once a week. Neurosurgeons detemined that since I was born breech, the damage was there; just showed up late in life. Hope this info is of use to you.
Johnsn123 is offline   Reply With QuoteReply With Quote
Old 09-18-2014, 08:37 AM #6
Vowel Lady's Avatar
Vowel Lady Vowel Lady is offline
Senior Member
 
Join Date: Aug 2006
Posts: 1,190
15 yr Member
Vowel Lady Vowel Lady is offline
Senior Member
Vowel Lady's Avatar
 
Join Date: Aug 2006
Posts: 1,190
15 yr Member
Default

I'm super new to ON. I have facial nerve damage and pain, migraines and now ON.

My neuro just put me on a tiny dosage of Baclofen twice a day for the ON. I'm also using a heating pad all night. I feel a little better. I'm keeping my fingers crossed.
Vowel Lady is offline   Reply With QuoteReply With Quote
Old 11-23-2014, 08:55 PM #7
Dinkster J. Dinkster J. is offline
Newly Joined
 
Join Date: Nov 2014
Posts: 2
8 yr Member
Dinkster J. Dinkster J. is offline
Newly Joined
 
Join Date: Nov 2014
Posts: 2
8 yr Member
Default Nice? to find others with same issues.

My story begins with a massive headache that put me down for 2 day. After several of these for the next 6months I went to a Neurologist who diaged me with Migraine headaches. I couldnt stand the services there so I found another, and another Neurologist. After my 4th Neurologists i finally found one i like that listens. It took a couple trips to the Pain Clinic and nerve blocks to realize that I actally had O.N. causing Migraines. Several nerve blocks and Rhyotomies later im realizing that this will be a life long issue with lots of meds and bouts of irritibility, loss of concentration, slow thought process, and actually loss of a 20 profession. New here and hoping to find new thought procsses n pain relief, and ways to keep the depression at bay.

Smile, tomorrow may be pain free.
Dinkster J. is offline   Reply With QuoteReply With Quote
Old 12-16-2014, 11:41 PM #8
kdrdudek kdrdudek is offline
New Member
 
Join Date: Dec 2014
Posts: 2
8 yr Member
kdrdudek kdrdudek is offline
New Member
 
Join Date: Dec 2014
Posts: 2
8 yr Member
Default

Dont give up. There is a huge difference in how doctors do nerve blocks. My husband developed migraines from a concussion and went to a doctor that did nerve blocks and no help. Went to another pain management specialist and he did nerve block and his headache was immediately gone for a couple of months with occasional flare ups. Three months we had another nerve block done and he rarely has headaches any more. Find a pain management anesthesiologist rather than a neurologist. They are special trained in nerve blocks and radio frequency and have greater success rates. There is an amazing doctor in Fresno ca for those that live in this area.
kdrdudek is offline   Reply With QuoteReply With Quote
Old 04-16-2015, 11:46 AM #9
bkeli bkeli is offline
Newly Joined
 
Join Date: Apr 2015
Posts: 1
8 yr Member
bkeli bkeli is offline
Newly Joined
 
Join Date: Apr 2015
Posts: 1
8 yr Member
Smirk neuralgia interchange and take part for food Inc

O c c I t I p a l neuralgia is more annoying over other neuralgia. I have trigeminal nerve damage causing central intractable neuropathy. Mine is worse than yours, I just know it but not as bad as intermittent sickle cell anemia. I was given the immunization g a r d I s I l. I don't know if they wanted to test it, but it was already proven that this only works for children with parental consent under age seventeen. I personally would definitely have my female only child get this. What does anyone think? It killed me. I was writing today because I felt like it, not because I'm in a particular mood. My husband says I'm an experiment no matter where I am and I want a divorce. When you are first diagnosed, paperwork is a nightmare and docs, well they stress you out, not themselves like desensitization models. O c c I t I p a l, I heard can lead to traumatic brain injury, so what do you do...no b a c l o p h e n, I think. Are people in pain getting narcotics nowadays? My doctors wanted to try All the drugs I already tried again, so I decided to live without pain medication. The ridicule becomes not worth it. Doctors have malpractice insurance through a physician's insurance company. They pay a dues and they should not worry, instead beginning selfish and lying to themselves discriminatory. Once per month prescriptions are simply not that difficult. Celebs get them any time all the time. I hate it. How do celebs give back? Do they have too? It's usually the pharmacy that is the main issue because they know the patient is coming but do not order enough for one month product. I usually just go along with what my doctors say, knowing full well they know what they are prescribing is not for me. Is that the sacrifice I made for coming here. I just do not understand the word sacrifice and I mean this. So, I wanted to write to say this....all the time when the physical pain is exacerbated I yell in my head to the sky and say, I understand basically why all this happened in my life, but this pain speaks for me. Please don't try to take what I say up there in the sky like I m some kind of evil. I can't deal with it, please let this pain go.you know so if I say something bad to spirit. I don't want him to count my pain attitude. Pain takes a l o t of planning. Of course, mentality can only exacerbate pain. Nothing to say on implant surgery the time. Bye....Bridget

Quote:
Originally Posted by Jwebber57 View Post
It was September 15 I vividly remember because it was my grandmothers birthday. I called her to wish her happy birthday and she asked how I was doing and I said I have a headache from hell. So I went on about my day.

Throughout the day the pain got progressively worse so I left work early and went home and took a couple of ibuprophen, this would normally help but this time it didn't. The next day I couldn't get out of bed becaus the pain was so bad but I kept on taking pills to ease the pain. A couple of days later it was so bad that I went to the emergency room, in typical emergency room fashion I was quickly medicated and for the moment the pain subsided and I went home.

Less than 36 hours later I was back again. This time they were afraid that it was meningitis so they gave me a barrage of antibiotics and ordered a spinal tap. Since I'm not a fan of pain they didn't get far with the spinal tap and I was sent home and referred to my primary doctor. So I followed up with my pcp and he said oh it's a migrane and referred me to a neurologist.
The first neurologist put me on topamax. Topamax was the devil in a pill. I had so many effects that I had to go back to the hospital and they flushed it out of my system. So I went back to my neurologist and he proscribed another pill I forgot the name off hand. But that didn't work.

Ill skip the months of sleepless night and daily agonizing pain and suicidal thoughts, because they were the worse months of my life hands down.

The neurologist pretty much told me I have a migrane and I would have to live with it, so I told him go to take a long walk off a short pier and I found a new neurologist. Best decision I've ever made. My current dr actually examined me, ordered catscans, MRIs and everything. I was officially diagnosed (after 5 months) with occicpital neurolgia.
He tried me on every pill under the sun and nothing worked. He suggested a nerve block injection to ease the pain. Well that didn't work either, but I did gain a few pounds.
So as of today it's almost 7 months in daily pain. I'm at my wits end, my job is bitching at me for leaving early everyday, and I need relief.
The only drug that kinda helped was cymbalta but its not covered by my insurance so I have to fight them.


I'm 30 and in chronic daily pain, i cant sleep, i cant work out, i cant work, i gained weight. Soit's taken it's toll on me me mentally, physically and emotionally. My partner actually told me today that my depression shows even tho I try my best to hide it.

That's my Story
bkeli is offline   Reply With QuoteReply With Quote
Old 10-20-2015, 05:23 PM #10
Murfisto Murfisto is offline
Junior Member
 
Join Date: Oct 2013
Location: Central west coast of Florida
Posts: 13
10 yr Member
Murfisto Murfisto is offline
Junior Member
 
Join Date: Oct 2013
Location: Central west coast of Florida
Posts: 13
10 yr Member
Default Greetings All:

Hi again, i'm giving you an update from my earlier entry regarding ON (occipital neuralgia). Like all other sufferers, it took a lot of time and a lot of medical expertise to finally give me a diagnosis. My ON is bi-lateral and no therapy/treatment has done anything. Yes, i am on opioids and have been on pain meds for around 12 years, mostly due to degeneration of my spine. I no longer worry about it. There seems nothing that can be done about my neck/head pain, it is always there so i just manage. i know i have changed and not for the better. the drugs affect my joy of life, there is none. just acceptance. without the antidepressants, i would no longer be here. just in time i was placed on drugs that, after a couple of weeks, the plans, the ideation of suicide just went away. my DW told me i was very selfish to think of killing myself. oh well. anyway, if anyone monitors this site and would like information on this disease/condition, i am willing to answer. contact me on mu33706 at yahoo dot com.
Murfisto is offline   Reply With QuoteReply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
occipital neuralgia 4blackbears New Member Introductions 4 02-09-2012 09:52 PM
RA and occipital neuralgia galbraith. New Member Introductions 3 06-19-2010 12:44 PM
occipital neuralgia alices New Member Introductions 17 01-29-2010 12:12 AM
All about Occipital Neuralgia! bozena115 Trigeminal Neuralgia 0 12-16-2009 04:18 AM
Occipital Neuralgia alices Trigeminal Neuralgia 8 05-15-2008 01:57 AM


All times are GMT -5. The time now is 11:43 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.