Occipital Neuralgia Online Support Group

I'm so tired of hurting and feeling I'm in a fog from all these meds. Everytime I think we have found the right dose it last for couple days and then pain is back. I don't know what to try next. My dr just keeps pushing pills down me. More blockers,migraine pills,happy pills, and arthritis meds. I just want to be able to be a Mom n wife without feeling like a ball of pain every second of the day!!! grrrr

hang in there I know its hard when your in it but dont give up.Have u considered the surgery?

Definitely, hang in there! You said your doc just keeps throwing pills at the problem. Are you seeing a neurologist or some other type of doctor? Have you tried anything non-medication (i.e. biofeedback, meditation, chiropractor, massage, etc)?

My Dr. said surgery would be pointless due to the fact that the nerve would start hurting somewhere else. I'm starting to wonder if he knows what he's talking about. Yeah it is a Neuro but I just think he doesn't know enough. I haven't tried anything else yet. I was thinking about acupuncture. Thank you ladies!!

Jumping in here -- hope you are having a better time with your pain today, alopezkdz! It may be worthwhile to speak with a specialist familiar with nerve decompression surgery. Perhaps your dr was thinking of the "burning the nerve" route, which is totally different. Folks on this forum have named several neurologists and surgeons - might be a good resource for you. It never hurts to get a 2nd, 3rd, or 4th opinion. No one doctor knows everything and we can't give up searching for relief!

Also, nomorepain made some good suggestions of other avenues of treatment. My daughter got a little relief with cranio-sacral physical therapy. It is very gentle.

Best of luck to you, and keep us posted!

alopezkdz > well I went to 17 drs and i can tell you I tried to educate them and not 1 wanted to hear about the surgery. They said online quacks are online. I couldn't figure out why I live in Chicago and we have the BEST teaching hospitals here, I went to all of them and not 1 knew about the surgery, they wouldn't even accept the paperwork that I printed out about the procedure, so I get what ur saying. That is when I totally lost faith in all the Drs around here and decided I need to check this site for the Drs names who do the procedure. They all wrote me scripts and said let me know in 6 weeks what I was dying in pain daily this went on for 5 years my whole life changed ,I took some control back and did the research and am very happy I did.

I can understand exactly what you are going through. I'm a Cedars Sinai patient, one of the best neurosurgery hosp in the country. They laughed at me when I first brought up nerve decompression surgery. "that doesn't happen, nobody does that kind of surgery. Are u sure you know what you're talking about?" uhhhhhhhhh... Yeah all I have is time to do research and talk to other patients who have had this surgery. After a few months and meeting different neuros and anesthesia, they finally researched it and were amazed this is happening. They are now considering a type of spinal surgery to decompress my C2 root ganglion...which they have done rarely and my case would be something never done before. They know I'm a nurse and I've educated them on new practice. Not all doctors are going to support this. It's only cause they know nothing about it. That doesn't mean it doesn't exist and definitely doesn't mean it won't work just because they are not informed of this new revolutionary surgery. I've had to stray away from a large team at Cedars to do what's best for me and that's the surgery. I went out on my own, gathered my records and finally met some surgeons who believe I'm one of the best candidates they've ever seen. So...you can't give up. I made a decision that I will not live like this anymore and went out on my own contacting these surgeons. Another alternative that was offered to me was a spinal cord stimulator. It has worked for a lot of people. You get to trial it for seven days and if you hate it, they take it out. Have you brought this up to your docs? I've learned throughout this process that because occipital neuralgia is so rare, most of the fixing is going to have to come from ourselves...our research, our demands, and getting knowledge and support on here. Dont accept anything less. You know your body more than any doctor can and you know when things aren't working. So, stand up for yourself and keep on going until you get the answer. And when you do..you'll know its the right decision and you'll have peace in that

Take care!

-nskoog24

nskoog24's experience sounds a lot like ours! When we found out about nerve decompression surgery on our own, our neurologist said it was "too soon" to even discuss it. Too soon, when our teenage daughter had been in constant, terrible pain for well over a year. We also went out on our own to research the surgery and speak with surgeons and are glad we did so.

To be fair, I have to give credit to our local pain management doctor. He had not heard of the surgery but read our info and also researched it himself. In the end, he wrote a letter to our insurance company supporting the surgery! He has been fantastic, and maybe by bringing this to one doctor, some other ON patient down the road will get help a little faster.

Best wishes to everyone for relief and healing. Keep trying!