Thought I might find a support group but found this forum first. I am a 30 somehting female recently diagnosed with the trigem and occipitol neuralgia among other things I may have going on. The pain began at the same time I had tooth pain and root canal procedure in mid august. I have am exhausted with the pain. I had nerve blockers last week to no avail. I am consumed with the chiro, PT, Medications x-rays etc etc etc. I am a wimp ! I am so thankful not to have a termial illness of any sort but @ the same token i am losing my mind to this pain and emotional tole I am going through. Everytime I do get som pain killers that work I have to play catch up on my home.... dishes family, laundry, housework etc. ( iam a homemaker husband ... 2 kids ... dog and hamster) I am used to a busy lifestyle.... going, doing , participating, LIVING ! I ahve no real quality of life much anymore. I am also only @ the six month marker and I know that i have quite a way to go fom here.
Hopefully this forum will give me the outlet to vent to people who understand and a place for me to share in the experinces of others.

Hi and welcome to NT!

I'm so sorry for your suffering, but I know that you will find helpful advice and unwavering support here. The link to our Occipital Neuralgia forum is:
http://neurotalk.psychcentral.com/forum105.html

While folks here have many different health issues, we all know how illness changes lives. Many of us were super busy, super dependable, super Moms. It can take time for us and the people around us to realize that we have to change how we live our lives to improve the quality of those lives.

In my household, everybody was used to me doing everything. That can't happen anymore. The truth of the matter is, that if folks don't pitch in and help, a lot of things just aren't going to get done. While it has taken time, I am starting to accept that this is okay. My energy is precious and limited and I've decided I'd rather read a book to my daughter than mop the floor. While I will still admit to cringing if guests arrived unannounced, I've had to decide what's important. The house can survive being untidy better than I can survive cleaning it.

Take Care of Yourself!

Hi Marissa and Welcome to NT. Glad you found us. I'm sorry that you are going through so much pain. I too deal with pain on a daily basis.

There is alot of information and a huge group of wonderful supportive people Who are great listeners so vent away. Just join in anywhere you feel comfortable.

If you need anything just ask.

I hear ya. I am about to be 39 and I have MS and as a result of that, ON. I've had it for almost 2 years (the ON) and it's HELL. I've been through alot of treatment too, so I totallyunderstand how exhausting it is and how demoralizing it is to have to go from living your life to just trying to survive. It's not what we planned for, is it? I don't remember signing up for this!

WHile this board can be kinda quiet, there are folks here who will respond. Sometimes it just takes us awhile cause we're also dealing with health stuff.

All I can offer, is that I found it hugely helpful to fund a good support group. You may be able to get connected through a pain clinic or your GP. If you aren't being seen at a pain clinic, it may be a good time to ask for a referral. This is not something that just magically goes away or gets better on its own. It's a serious condition that needs managing.

Hang in there!

I too am new here. I was in an auto accident in 2003 and have since had a lumbar fusion, cervical fusion and been through everything from chiropractors to accupuncture, phy therapy to injections and meds from pain management. The pain has still lingered.

I have had chronic back, shoulder, neck and headache pain since the fusions. Don't get me wrong, the fusions helped, but my quality of life still has been robbed-the pain just has not been intense enough to cry daily. It is now the type that makes me feel miserable and not want to do anything. The idea of cooking dinner, or even a drive to town is just exhausting to think about doing...doing it is by far worse.

My pain mgmt doctor ordered yet another mri. Again, slight changes in my neck (which has been my biggest complaint since the fusions along with the headache from O.N) were obvious, but didn't require another fusion. The doctors told me my last resort was a cervical spinal cord stimulator.

I had my trial, which I wore for a week and on New Years Eve the permanant one was put in. I instantly noticed the pain from the O.N gone. For the first time in six years I don't have a headache. Obviously the incision sites hurt, and I have to wear a neck brace for 2 mos to avoid moving the implanted leads, so it's a little difficult to know yet if the neck pain is gone-but for the first time...I have hope.
Has your doctor suggested such a thing?
Good luck and I will keep you posted on my progress
Draftergirl

Yes, my pain specialist did and it's taken me almost 2 years to get to see the Neuro surgeon who will tell me if this is an option for me. I see him before the end of the month.

Glad to hear you could instantly feel a difference. I don't remember what it's like to NOT have pain.

THanks for sharing!

I wish you the best of luck. I am still healing- and it looks like it's a slow process, but my incision sites and the lead locations are where my pain is right now. My doctor requires me to wear my neck brace for two months. The real yucky part of the experience is... You can't shower for the time the trial is in, or the first week the permanent one is in. Sponge baths are all you can do. It's worth it though...assuming the trial works for you.
Keep me posted.

OMG!!!! MarissaLB,
I was diagnosed with Trigeminal and Occipital Neuralgia 2 years ago while I had an infected tooth and a root canal procedure done!!!

Oh my goodness!!! My neurologist said there is no way that a tooth nerve could've caused Occipital Neuralgia! But that is when all of my pain started!!

I had a headache for 52 days straight!! I was put on numerous pain killers and nerve medications and nothing worked. The only thing that works is muscle relaxers. My doctor said I have so much tension in my neck, that the tight muscles are squeezing the Occipital Nerve and making it angry.

I also follow these strict rules from my Neurologist to not upset the Occipital Nerve: don't wear any hats or headbands, don't lay flat on your head (turn your head sideways when you are laying down), don't put any pressure on the base of your skull and don't wear heavy clothing on the base of your neck (like a heavy courdouroy blazer or a heavy coat).

When my head starts hurting I take a muscle relaxer, I wear a magnet necklace, go for a walk, put ice packs or heat packs on the base of my skull. Putting the ice or heat packs on your neck relaxes the muscles that are surrounding the Occipital Nerve.

I'm sad for your pain, I am a mother of two also and this has changed my life drastically! I hope you feel relief soon.

Hello and welcome to NT

Glad you all have found each other for support and understanding.

It's always good to know you're not alone and you're not crazy with your symptoms.

I hope you two find some relief soon.

Well, here I am...about 5 weeks out from the surgery. I am still on medical leave from work and though the healing process is slow, it does seem to be helping. I still feel pain in some areas, though they are considerably better than before the surgery.
It is a little awkward getting used to the change of feeling from the stimulator as I move a certain way. I think at this point, my biggest concern is the few times I have tried to go an hour or two without the neck brace, my neck felt absolutely exhausted. I presume having this brace has somewhat weakened the muscles in my neck (along with the incision) and it will take some time to build them up again. My head feels heavy and when wearing this brace-I keep this feeling of wanting to "crack my neck". No, I am not going to do it, it just feels like it could use a good crack.
I go back to work about the same time I am to stop using the brace-should be a real sore first few weeks back.