Occipital Neuralgia

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Knightgoddess
New Member


Date Joined Oct 2007
Total Posts : 5
   Posted 10/2/2007 11:28 AM (GMT -6)   
I was in a car accident over four years ago and suffered whiplash.  I have been going to chiropractors, which relieve the pain temporarily.  I have great instability in my cervical spine which is causing this pain.  The bummer here is that in the past, none of my CT Scans, MRI's, X-Rays showed anything was wrong with me.  This in turn had a negative affect on my law suit.  I am now on my third pain doctor and he is the first person to give me a diagnosis.  Thank God.  He said that based on my symptoms, it sounds like Occipital Neuralgia.  He wants me to have an Occipital Stimulator implanted, and I'm all for it...whatever eases the pain.  Well, my insurance company doesn't want to pay for it.  I now have a healthcare advocacy taking care of this for me. 
 
Just two weeks ago I had atlanto axial joint injections done on the right side of my neck.  I felt wonderful for a week and then a week to the day my pain returned relentlessly.  I go back this Thursday for another round of this injection.  They told me it should have a longer lasting effect this time.  Why don't I really believe it?  I've had so much false hope for over four years already. 
 
I am now at risk for losing my job because of all the absenses I have from my pain.  I'm trying to research this to see if it is legal in my state for a company to fire you because of chronic pain.  If this injection doesn't help/last, I'm afraid what will happen if/when I have to take more time off for another procedure.  I really want to have surgery to help this pain, now that I know what is wrong with me. 
 
Does anyone have any information or share the same pain?  I would appreciate any information anyone has to offer.  skull

holmesla
Regular Member


Date Joined Jan 2007
Total Posts : 196
   Posted 10/2/2007 12:11 PM (GMT -6)   

I totally feel your pain! I was in a vehicle accident back in December. My symptoms started 3-4 weeks afterward. I just started with horrible migraines. I have had multple procedures as well. cortisone injections, nerve blocks, rhizotomy (burning of the nerve endings) chiropractor care, physical therapy, massage therapy. My xray showed whiplash, loss of my cervical curve, and mild degeneration disease. My CT Scan was clean and one doctor said my MRI showed spondylosis with a tiny bone spur and mild degeneration disease. All of which he tells me is not what is causing my pain. I beg to differ.

Anywhoo, what are your symptoms of Occipital Neuralgia? For a while I thought that is one thing I had. I get this pain at the base of my skull that can best be described as someone just beat me over the back of the head with a baseball bat.

I struggled with getting a diagnosis as well but no one will give me one. I also get really bad muscle spasms in my neck and shoulders. The pain is a viscous cycle. I wore a neck brace for 3 weeks and it helped. But now I am stuck with tension headaches and the spasms.

Do you work full time? If you do then you qualify for the Family Medical Leave Act (FMLA). It allows you 12 weeks off for your own personal medical issues, or medical issues of a family member that you must care for, and your job is safe. It doesn't have to be 12 consecutive weeks, it can be intermittent. I recently signed up myself. HR gave me the paperwork, and my doctor had to fill it out.

I hope this information helps you! Positive feelings that you can get through this!


Knightgoddess
New Member


Date Joined Oct 2007
Total Posts : 5
   Posted 10/2/2007 12:27 PM (GMT -6)   
Thanks for your response.
 
I have had the rhizotomy, nerve blocks, facet joint injections and massage therapy as well.  None of the procedures worked for me.  I also had Botox injections in the back of my neck, back and head.  It worked great for almost 2 months then it wore off.  I had it done a second time and it did nothing.  The worst part was insurance doesn't cover it so I had to pay the steep price for the Botox myself.  I also had Prolotherapy and that seemed to make my pain worse.  After the second round, he just gave trigger point injections instead and referred to the pain doctor I am now seeing.  I am also on several types of pain meds that don't do anything for me.  The only one that seems to help is my migraine meds, but they make me feel like crap.  After several days of taking them I feel so tired and it was almost hard to breathe.  Sometimes they even make my joints hurt. 
 
My symptoms of Occipital Neuralgia are exteme pain at the base of my skull where it curves under.  It feels like I'm being jabbed with an ice pick.  The pain radiates into my shoulders (I've been thinking it was the other way around until I had my last injection) and into my head and behind my eye.  Sometimes I can even feel it in my molars.  Sometimes I get a dull ache from the side of my neck down into my arm and into my finger tips.  I've also suffered nausea and vomiting when the pain gets to around a 10.  My pain also switches from one side to the other without any rhyme or reason. 
 
I do work full time and I am eligible for the FMLA.  The only thing with that is you don't get paid.  I'm a single mother and cannot afford to not have any income.  I will be at my job for a year come November 27th.  After that I can go on temporary disability.  WIth that I get a portion of my check which is better than nothing.  eyes

holmesla
Regular Member


Date Joined Jan 2007
Total Posts : 196
   Posted 10/2/2007 12:44 PM (GMT -6)   

Your symptoms sound similar to mine, only I don't feel anything in my arms like you do. Just the ice pick feel. Only sometimes I feel it behind the eyes.

I am going to try the trigger point injections here pretty soon. I called the dr to get it scheduled, and have yet to hear back. I am hoping it helps with my shoulder and neck pain from the constant muscle spasms.

I hear you about the FMLA. I can't afford to lose the money as well, but it is good to know I am covered if I have to. I have used up all my vacation and sick leave so its good to know I have that.

Good luck with everything!


Knightgoddess
New Member


Date Joined Oct 2007
Total Posts : 5
   Posted 10/2/2007 1:14 PM (GMT -6)   
Good luck to you as well. 
 
Being your pain is similar to mine, you might want to inquire about the atlanto-axial joint injections.  It really helped me, even if only was for a week.  It was just a relief knowing where the pain is coming from. 
 
I have found a lot of helpful information on the web for occipital neuralgia just by googling it. 
 
I hope you find a solution to your pain because this is the most awful thing I've ever had to endure.  And I though child birth was bad.

WyoGirl
New Member


Date Joined Oct 2007
Total Posts : 6
   Posted 10/10/2007 3:35 PM (GMT -6)   

Hi! I could have written your post and all the replies with the exception being that I am already unemployed and vocational rehab. says that I am just at the rehab. stage of working with them which means I cannot work....of course SSDI/SSI turned me down 2 x and I am appealing yet again.

I have not been dx with occipital neuralgia (yet) but your description and others' sound like my problem(s)...

 

I will follow this thread.

I hope u are on the road to continuous relief and can get to a point where these migraines are a thing of the past, like all of us wish.

Good luck!!!!!!


TMarie
Regular Member


Date Joined Aug 2005
Total Posts : 190
   Posted 10/15/2007 12:25 AM (GMT -6)   

Wow, reading the posts here...finally!  I'm not alone!  I've been living with Occipital Neuralgia since February of 2005.  I woke up one morning with this excruciating pain, and since then it's been unrelenting.

I've had numerous MRI's, CT scans, X-Rays which show all of my Cervical disks to be either Herniated or bulging and causing pressure on the spine; even the Thoracic disks at T1 through T4 are herniated.  The kicker is how it happened...I have no clue!  I wasn't in an accident, didn't hurt myself either.  The only significant event prior to this was a shoulder reconstruction.  (Perhaps they had my neck/shoulder cock-eyed on the operating table?)

I've been through countless horse and pony shows, you name it, I've done it: Trigger Point injections (at least 20).  Nerve blocks, facet joint injections (more than I can count), rhizotomies, none of which have given me any continuous relief.

I was finally referred to a Neurosurgeon who told me all of the procedures I've been through WOULDN'T work for Occipital Neuralgia!  He came up behind me, placed his hands on my neck and knew exactly where it hurt, where the pain radiated; I was genuinely impressed for once.

He told me I need to get a Trial of a Nerve Stimulator (I read Knightgoddess was told she needed the same thing) where they put the electric stimulators under the scalp, connected to the appropriate nerves to stimulate them so they don't cause pain.  He told me the TRIAL is for approximately 7 days to see if patients can handle the constant feeling of it (just like the rhizotomy pulsation--not painful). 

*Prior to getting the TRIAL done you have to get a psychiatric evaluation done, because once the trial is complete they'll put the device in permanently.  Meaning they'll feed the electrode wires down along your spine *under the skin, not in your spinal column*; and they'll be attached to the main unit which will be located deep in one of your buttocks.

I'm not sure if I'll pass the Psych eval, but I'm so sick of the pain and what it's doing to my life.

My Occipital Nerve is being 'pinched'/'irritated' in an area where it triggers Migraines constantly.  So much that I've had a Migraine last for 32 days.  I'm constantly getting 'aura's which used to precede the painful part of my Migraines, thankfully I'm now on Topamax so I don't experience the pain for the most part.

The neck pain is horrendous, I also have pain that radiates up and above my ear and other symptoms too.

I'm on the Fentanyl Patch and MSIR for Breakthrough Pain.

Keep in touch fellow ON'ers!

TMarie

(Sorry if I rambled, Insomnia strikes again!)


~*~*~Tash~*~*~
 
 


bevans
New Member


Date Joined Oct 2007
Total Posts : 1
   Posted 10/15/2007 9:13 PM (GMT -6)   
I just signed up and on because I found a page while looking online of people discussing "the Migraine Cure" book by Dr. Dzugan. The posts were on 12/11/06, 12/10/06, 12/12/06 and 1/4/07 and 4/3/07. I wanted to continue and read more but cannot figure out how to find these. Please help. I've read the book three times and tried (without success) to find a Dr. to monitor the program for me. Has anyone gone through this program? Thanks!

Odessa
New Member


Date Joined Sep 2007
Total Posts : 12
   Posted 10/18/2007 1:09 AM (GMT -6)   
HI there,

I've posted a few times now about Occipital Neurolgia. My also was created by a car accident in 1992 however it was only diagnosed this August 07 Just before I'd get a full blown migraine it always started the same way. 1st my neck would tense up, then this would radiate down and along both shoulders and into my upper arms, then down along to the front of my neck to include my collar bones region. Eventually working it's way up the base of my skull by this point it would feel like someone took a baseball bat and whacked me in the back of my head. Then pain would be so intense that I would tense up even more to the point that I couldn't even move my head to the left or the right. This also created a severe migraine blow-out, my face would twitch like crazy!

I can completely empathize with what you and everyone else who goes through it. So far and with (what I deem as successful) is that my neurologist has been giving me Botox treatments for my O.N. my migraines have decreased by at least 70 - 75%. And I NOW have an idea as what it's like to live without the horrific neck/should pain that was 24/7 with never having ANY relief with all the past meds and alternative therapies that I had tried in the past. So far so good with my treatments. I go for my next round of Botox injections on Nov 19th, if you want I'll keep you posted as to how this type of treatment goes for me.

All the best,

Odessa

TMarie
Regular Member


Date Joined Aug 2005
Total Posts : 190
   Posted 10/18/2007 5:25 AM (GMT -6)   

I've just recently developed the facial twitching.  To be honest it's rather embarrassing, at first it was just one area but now it seems to be effecting other areas on my face.  When I've been at my doctor's appointments I've failed to mention the twitching to him due to the plethora of other things going on...thanks for mentioning this; what a monster Occipital Neuralgia is!

Now I definately need to make sure he knows this before I lose control of my facial muscles and turn into a facial contortion artist tongue !  (smile)

 

I'd love to hear how you progress with Botox, my Neurosurgeon told me I had two options.  The stimulator or manage the pain it causes.  I'm going for the trial of the stimulator if they can figure out how to put the referral in the computer system to get me to the doctor!

TMarie


Floyd J. Carroll
New Member


Date Joined Oct 2008
Total Posts : 2
   Posted 10/25/2008 12:37 AM (GMT -6)   
this is my first post, ever. I was kicked by a horse 3/07 upper thigh left side. It knocked me to the ground hitting my head and popping neck. May 07 I started waking up with severe pain behind my left ear. I was scared to death this was intense pain. I went to three differnt Dr. and got three differnt diagnostas. Finally I found the right one who told me I had occipital neuralgia. He said Iwas third case he'd seen in twenty years. He tried 4 nerve blocks with no help. I then searched out a pain clinic. In Jan.08 I had 4 cervical injections, lasting through March 08. Not any relief. Did I mention I had all upper mollers pulled to eliminate that possibility. Aug.08 I had stimultor trial. Then I had to wait one month for perminent implant. The pain never goes away. I also have rheamatold arth. so I really like the stimulator. It does work but the occipital pain never leaves. I take Lyrica witch helps alot but it is expensive. It has taken me awhile to realize that for the rest of my life I will have this pain but I know without the stimulator I would be in bed at a pain level of 10. Iv'd had lots of tears that just appear, that' s a ten. If you have the pain ther's no decision but to have the stimulator surgery. I don't regret it at all. But instead of being a 10 all day and night, know I'm a 5 to 8. The pain never leaves. I hope to hear from someone else and hope to learn from others and maybe I can help someone . If you have the pain 24/7 the stimulator at least gives at least 50% relief and I got none before. They keep you awake during surgery so you can tell the Dr. the wire is in the right place. If I got through it , you can too. It's kinduve funny now. My wire moved but I'm still getting couverage so as of now I'm not going through it again which is my only opion to put it back. The buzz feeling goes from fingertip to fingertip. I lke it . That's all for now , if your in the same pain I havr right behind my left ear and you can get a stimulator ,it'll help but it doesn't stop the headache. Remember for me it's 50%.

MsCH
New Member


Date Joined Jan 2012
Total Posts : 2
   Posted 1/22/2012 8:37 PM (GMT -6)   
 
I was in a car accident in 1999 in which I was hit very hard from the rear.  I got a whiplash and right at the scene of the accident I got a severe left sided headache that radiated to my left eye. It felt like an ice pick in my eye. Prior to a diagnosis I was given ice sticks, injections, you name it.  Nothing worked and I went for almost two years this way. 
Eventually I made my way to a neurologist who fixed me right up.  He gave me the diagnosis, occipital neuralgia, which nobody had done previously.  He started me on a small dose of nortriptyline once a day.  The pain totally disappeared!  But, the medication gave me dry mouth which I didn't like so I experimented and found that if I took just one pill four times a week it would completely control the pain.  It has now been almost 13 years since the accident and I virtually never have that pain any more and it is all because of the small dose of nortriptyline I take 4X/week. 
By the way, I also got a very poor settlement from the other insurance company because this injury cannot be shown on X-ray.  But I will be taking medication for this injury for the rest of my life.

carolthiessen
New Member


Date Joined Feb 2012
Total Posts : 1
   Posted 2/12/2012 10:00 PM (GMT -6)   
I've been diagnosed with Occipital Neuralgia..and I'm wondering if there is a connection between Bell's Palsy and ON.. I 've had 2 episodes of Bell's Palsy and the last time I've noticed the pain began behind my ear ... and the ON is of course at the back of my head behind my ear..
I've had nerve block injections twice now and they seem to wear off after a couple of weeks so I'm desperate for any relief..
also I've noticed a correlation between the pain of ON and when I have insomnia..when I'm tired the pain is worse.. maybe I'm just grasping at straws trying to come to some understanding..
I'm on 1800 mg of Neurontin.. the Tegretol didn't do anything for me
I'm a mess medically... I also have diabetes 2, Crohn's disease and arthritis in my neck and back..
I just have to have some relief somewhere so I'm posting here for some advice
thank you

paw71
New Member


Date Joined Jun 2012
Total Posts : 1
   Posted 6/19/2012 3:06 PM (GMT -6)   
does anyone have any advice on how to get the insurance to approve a stimulator? i have had this for numerous years, tried every med and procedure. i have missed so much work and am out of time. im so afraid of loosing my job and i cant do the family act because i need the income. any advice would be greatly appreciated. the insurance has denied our second appeal.
New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, September 23, 2017 10:44 AM (GMT -6)
There are a total of 2,872,152 posts in 315,185 threads.
View Active Threads


Who's Online
This forum has 156678 registered members. Please welcome our newest member, MAUDEDSFWE.
383 Guest(s), 10 Registered Member(s) are currently online.  Details
Pohaku53, Lapis_29, hopenchange, Pirouette, Katey, Fletch10, FlowersGal, Tim Tam, Oriol, kellyinCali


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer