Undiagnosed but in CONSTANT pain!
 

My name is Lisa and I am new to your message board. I am 34 and in good general health. I hope that someone who has been through what I am going through can shed some light on what's going on.

I am currently undiagnosed but in constant pain. This has been going on for about a year now. The pain originates from the left side of the back of my neck, which actually is tolerable. What I cannot tolerate are the headaches that come as a result. The headaches are so bad that everything is blurry and sometimes I even pass out or vomit. I have had to cut my hours at work in half because I just can't deal with the pain. I have no insurance either, so all of this is becoming extremely expensive.

My CT scans came back normal and my X-rays were normal as well. I am currently waiting for results from my MRI test.

I have been on multiple migraine medications, pain relievers and muscle relaxers. I have had many different steroid injections (and other injections too, I believe, I just can't remember what they were). I saw a chiropractor for a few months and have also tried massage therapy. I find very little relief from any of it.

Can anyone tell me if Occipital Neuralgia can be diagnosed from an MRI? If not, how is it diagnosed? Does anyone have any ideas on what else could be causing me so much pain?

Just some additional information:
- I have been in 2 car accidents, the 1st time I was rear-ended about 5 years ago and experienced no real pain following the accident. It doesn't seem like that could be the root of the pain, but who knows? The 2nd time I lost control of my car on the ice and ended up in a ditch. This accident was 4 years ago and again, I experienced no real pain afterward.
- I do have some family members who have had issues with their backs/necks. My dad just had to have surgery on his neck last year for a nerve problem. My mom developed neck pain following a car accident and her pain disappeared with help from a chiropractor. Both my brother and my sister have had back problems and so have I (mine was due to a lifting injury when I was 17).

I just read somewhere that family history can play a big part in degenerative disc disease, but I'm not sure if that is where my problem lies.

I have done my research and I truly believe that Occipital Neuralgia may be the right diagnosis, but can anyone tell me how it is diagnosed and has anyone found relief with any non-surgical treatments?

Thank you for bearing with my VERY LOOOOOONG post!!!

Any help you could give me would be sincerely appreciated!

Lisa

I can relate to your pain
 

Hello Lisa,

My name is Constance and I can relate to your pain. I have had similar issues (two car accidents like yours). I have had a "headache" for four years now. I cannot work any longer and doing daily functioning activities is minimal. I just saw a Dr. Jho in Pittsburgh who thinks I have occipital Neuralgia and he says it cannot be seen on an x-ray or MRI. He says it is confirmed by having a C2 nerve block. If relief is obtained within a day or two (and it will be short lived) then his noninvasive c2 decompression surgery is appropriate. I am having the c2 nerve block on Jan 3, 2012 in Pittsburgh (I live four hours away). He is the first Doctor I have found that understands my problem and has a real solution. I'll keep you in my prayers.

Constance

sounds like O N
 

Hi Lisa, it sure sounds like a possibility. DO u have sensitivity or pain to the back of your head,"occipital area"? There are so many different symptoms and they seem to vary drastically from person to person.
I have every possible symptom of it that there is, and my Neurologist still wont give me the official diagnosis. Im not sure why they are so hesitant when its so apparant. But i will say be prepared for a long road of trying differnt meds, treatments etc,,until you find what works for you.
Ive been suffering daily for 6 months,,only have had a couple good days,,which werent really good, but they just werent horrible. Have been on several different meds, and had a couple occipital nerve blocks,,,the blocks gave me some relief for a week or so.
Its a frustrating condition becasue no one can see it,,,so its almost like we feel like we have to Prove the way we feel. I think people including the Drs think alot of is is either made up or is a result of depression of anxiety. However, my life was perfectly normal unitl June 9th at 6am when i fell down a flight of stairs and hit my head. My whole life has changed since that day. My Dr had the nerve to say to me,," its possible your problems could be casued from your fall'...its POSSIBLE?? that was crazy,,,of course it was casued from my fall. Anyways, be prepared to have to fight for yourself and be strong , its not easy. I also just found this site last week and it is very helpful reading other peoples stories becasue they have so many similarities!
Find a good neurologist! Thats the best place to start.
Wish you all the best!!


I am currently undiagnosed but in constant pain. This has been going on for about a year now. The pain originates from the left side of the back of my neck, which actually is tolerable. What I cannot tolerate are the headaches that come as a result. The headaches are so bad that everything is blurry and sometimes I even pass out or vomit. I have had to cut my hours at work in half because I just can't deal with the pain. I have no insurance either, so all of this is becoming extremely expensive.

My CT scans came back normal and my X-rays were normal as well. I am currently waiting for results from my MRI test.

I have been on multiple migraine medications, pain relievers and muscle relaxers. I have had many different steroid injections (and other injections too, I believe, I just can't remember what they were). I saw a chiropractor for a few months and have also tried massage therapy. I find very little relief from any of it.

Can anyone tell me if Occipital Neuralgia can be diagnosed from an MRI? If not, how is it diagnosed? Does anyone have any ideas on what else could be causing me so much pain?

Just some additional information:
- I have been in 2 car accidents, the 1st time I was rear-ended about 5 years ago and experienced no real pain following the accident. It doesn't seem like that could be the root of the pain, but who knows? The 2nd time I lost control of my car on the ice and ended up in a ditch. This accident was 4 years ago and again, I experienced no real pain afterward.
- I do have some family members who have had issues with their backs/necks. My dad just had to have surgery on his neck last year for a nerve problem. My mom developed neck pain following a car accident and her pain disappeared with help from a chiropractor. Both my brother and my sister have had back problems and so have I (mine was due to a lifting injury when I was 17).

I just read somewhere that family history can play a big part in degenerative disc disease, but I'm not sure if that is where my problem lies.

I have done my research and I truly believe that Occipital Neuralgia may be the right diagnosis, but can anyone tell me how it is diagnosed and has anyone found relief with any non-surgical treatments?

Thank you for bearing with my VERY LOOOOOONG post!!!

Any help you could give me would be sincerely appreciated!

Lisa[/QUOTE]

I suffer occipital headaches and neck pain, issues with c3 - c4. I also have been dx with TOS (Thoracic Outlet Syndrome). You may find some interesting info on this site, lots of us have probs in this area.
Best wishes to you......... headache's are the worse!!!!!:(

Thank you!
 

Thanks for everyone's quick responses! Thank you all for your advice and your wisdom. :)

I actually only have sensitivity to the back of my head just at the base of my skull, usually only on the left side, although it does occasionally spread to the right side.

I know exactly what you mean about the doctors. I felt for awhile like my doctor believed that I was drug seeking or imagining the pain. He was confused that I was not reacting to him touching the "trigger points". But when he touched the trigger points it actually felt good, I actually felt a small amount of relief.

[QUOTE=looksRDCving;832299]Hi Lisa, it sure sounds like a possibility. DO u have sensitivity or pain to the back of your head,"occipital area"? There are so many different symptoms and they seem to vary drastically from person to person.