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!
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!
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.
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!
(Sorry if I rambled, Insomnia strikes again!)
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 ! (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!