My Story

Hello all! 

Welcome to the forum! I can't say that I share the same pain as you. My pain was caused by a car accident back in December. The origin we have yet to figure out. I suffer from migraine headaches, tension headaches, occipital nerve pain, neck pain, shoulder pain, and muscle spasms, everyday for the last 7 1/2 months. I am Topamax, cymbalta, Relpax, Vicaden, Zanaflex, and Lidoderm patch. I have had two occipital nerve blocks (one on each side), two epidural cortisone injections, and they burned my nerve endings. I have been to the chiropractor and physical therapy. They tried multiple types of therapy, inlcuding massage therapy, and nothing has worked. I had x-rays, CT scan, and an MRI and nothing showed up other than I have whiplash. All this treatment and I am still in pain.

I'm sorry that you have so many issues that cause you pain.  They can't determine the origin of my neck injury or migraine...it's really horrible but it's nice that there are people to talk to about it.  I think that I will have a follow up scan sometime in the near future.  I understand how you feel...neck injuries never seem to get better and they cause a lot of other issues that can be discouraging.

Hopefully the neurosurgeon will be helpfull

Hang in there!

 

 

I've been suffering from occipital neuralgia since Nov., and I started taking Cymbalta and Flexeril (muscle relaxer) in March. I still have constant pain, but the medication has made it bearable. I tried physical therapy before we knew what was wrong, and that made it much worse. I tried a massage therapist at AquaTherapies, and that really helped (I went twice). But my insurance wouldn't cover it, so I haven't been back. (Now my husband gives me a massage every day, and that helps some) I saw a neurologist and a neurosurgeon before I figured out what was wrong with me - neither of them had a clue what was wrong! I'm thankful that the medication helps me to be able to live a normal life most of the time, but I don't want to just ease the pain - I want to fix what's wrong! So my next step will be to either go back to the neurologist and say "Here's my problem - how do we fix it?" or go to a chiropractor.

I agree - it's wonderful to be able to talk about this with other people who understand what we're going through! Even my neurosurgeon thought I was either depressed or crazy!!

I hope you get the help you need!

Bob-o, I think I spoke to you before about the occipital neuralgia and you didn't think that was what I had because I didn't have any tingling or numbing. Maybe it wasn't you, I don't recall. I am still in pain as you can see.

I feel I have a few issues going on causing the pain but I can't help but wonder if I do have a bit of ON. I do still have pain in the occipital nerve area as well as from one temple across my forehead to the other temple. Sometimes even between the eyes. It is the worse tension type headache I have ever experienced. Gosh, even if I put my hair in a pony tail it hurts.  I can't imagine what else could cause my occipital nerve to hurt.

I am seeing a neuro surgeon in two weeks and I am hoping to get more answers. I feel I have a bulging disc or something on top of ON. then again, I am not a doctor.

I know that posture has a lot to do with my pain. Looking down causes pain. I have noticed in my sleep I sleep in the fetal position, with my head facing down. That is why I wake up in the worst pain. Scrapbooking causes such pain, because I am looking down, so I can no longer do the things I enjoy.

I totally hear you, I don't want to be on meds, I want to be fixed!  It is so good to have this site and be able to hear that you are not alone. I mean it sucks that we all have to suffer, but at least we have support. Our spouses are a good support, but do they truly understand what we are going though? Unless they have gone through it, I don't think anyone can possibly understand.

holmesla, that may have been me, but if it was, I think I'd like to change my mind - you do sound like you have some ON problems! "Looking down causes pain" was a big giveaway - Before I got my medication I went to see the dr. and - in tears- held my hands in front of me and said, "I can't even look at my hands!!!" I'll be really anxious to hear from you after your visit with the neurosurgeon!

Its been a long road trying to figure out what is wrong with me.  For me, looking down doesn't necessarily cause immediate pain, but in a couple hours, or even the next day is when I get the pain. The pain i feel in the ON area is like I have been beaten with a baseball bat. Also the typical tension type headache, only the worse tension headache I have ever had. I have found that I sleep in the fetal position, with my head facing downward, which is why I wake up with pain. I am going to purchase a neckbrace to sleep in so that hopefully it helps. I am going to bring up the possibility of ON and/or bulging disk to my appointment with the neuro surgeon next week.