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.

I'm also a new member to this forum and have both occipital neuralgia, cervical dystonia, mtbi, chronic daily headaches, post-traumatic migraines, post-traumatic stress disorder. All resulting from Oct 2008 car accident.

I have found, like many of you, ways to cope -- and try to take it one day at a time. I too was an extremely active person, at the pinnacle of a great career and at a good point in my marriage after 29 years.

I have tried everything suggested to me -- accupuncture, aggressive physical therapy, certain medications, Botox injection therapy. I'm curious about the fusions -- did you have damaged or herniated discs? I'm glad you have had some relief from them, but have learned that one "cure" can be to the detriment of other affected areas. I'm also curious about the cervical spinal cord stimulator -- how that works. It cured your ON. I hope your neck pain will also diminish as well.

The reality is that however we were injured, whatever our medical diagnoses are, we personally have to deal with it. Friends/family are compassionate, want to take the pain away -- but I have found it difficult for them to really understand. It's easy to see the pain someone may have with a broken limb in a cast -- but is difficult to see the pain we have in our heads. It's difficult to describe the pain -- mine changes depending on Botox schedule (every 3 months), on how much I push and then am exhausted. My brain tells me when it's power is about to turn off. I literally feel like the Energizer Bunny that drums across the floor and just stops. That happens to me. I almost collapse sometimes. Sleep is one of the best ways to heal my head -- even at times when it's extremely difficult to lay it down. I have spent many nights propped up so that my occipitals aren't pushing on the pillow. I think crying can be a good thing -- as is talking with others that understand. I keep a daily diary and that helps. Some times I write "same as yesterday -- same old story".

We all have to make new lives, and I think I have concluded after almost 2 years that, I won't be returning to my former life. It's just how it is. I have to retrain my brain in many areas, but the hardest retraining is for others around us. They need to understand and ACCEPT our limitations.

I do housework if and when I can; luckily have a daughter still at home helping with groceries, the dog, other daily tasks.

I have a consulation with a doctor next week who is a cervical chiropractor. She said I sound like a prime candidate. We'll see. Would love to avoid any surgery on my neck.

Thanks for listening...

SURGERY?! Someone better have a very good reason and a lot of proof before I'd go there.

I am now a massage therapist trained in medical massage therapy, I did this to treat myself and where this goes from here... I'm not real focused on that right now.

I am not a doctor (nor have I played on on TV). I cannot diagnose or prescribe any drugs or methods or tell you that this will work for you. This is all my OPINION and should be taken as such. DO YOUR OWN HOMEWORK.

I have an update on my TN since my last post. I have found the cervical vertebra (C-7) that seems to be causing my TN. As I have been relieving the knots (trigger points, look it up!) in my neck my TN has been shifting in severity and location. I see that as a good sign.

There is an extremely tender spot on the left side of C-7 that causes a pressure feeling in my neck, behind my left eye, and at the bottom of my left Scapula when I push on it (this is a classic trigger point). This has taken 6 months to locate and I'm still not 100% sure I have it.

This morning I got hit again and as my face lit up I poked into the C-7 location a few times and as I got the angle just right and pushed in the TN stopped. I have stopped the TN three times today just by pushing on that same spot when I get it. One of the indications that you have a trigger point is that when you push directly on the amorphous point, the pain in other areas of the body (side of my face) will stop. This has worked with many tender spots on me and ii recognize the relief when it happens.

I believe most people have one or more of these trigger points that is causing the TN. I have been going to school since last April to learn about Myofacial release of trigger points. My TM symptoms fit right in with the symptoms that trigger points cause in other areas of the body and now I have found even more reasons to be hopeful of trigger points causing my TM, and hundreds of other people as well.

I started the schooling to be a medical massage therapist because I have been trying to find relief for shoulder, neck, and hip pains, that no one can explain (until now) and Worker's Comp (started as a workplace injury) kicked me out and gave me a few bucks and told me to find my own way to relief (in so many words). So, I did.

I have stopped all my hip pain, most of my shoulder pain (although I still get up several nights a week to take a hot shower and calm down the trigger points that wake me up with a fire like pain) which is about one fifth of the pain I was in one year ago.

Here is a list of what I've been learning and is printed on the back of my business card. I'm not really in business yet because of the TM but I do have insurance, a business lic., I have been helping other with severe pains at no charge and have had spectacular results according to the friends I have helped.

Medical massage addresses
many problems including:
Frozen Shoulder - Knee Pain
Neck and Back Pain
Tendonitis
Trigger Finger
Auto/Work/Sports Injuries
Whiplash
Scar Tissue
Mastectomy
Pain Associated with Arthritis
Sciatica
Heel Spur
Problems walking or climbing stairs
Carpal Tunnel
Improved Athletic Performance
Fibromyalgia
Trigger Points

And Trigiminal Neuralgia

I have worked on and had varying success with all of these conditions except Fibromyalgia, and that's because no one has come forward yet for me to attempt relief.

I worked on my neck/TM for several hours today and the TM is a little touchy right now so I'm not going to taunt it much more for today.

The first thing I would look for to see if my TM was caused by knots in my body would be to have someone look at me standing upright and see if I have a head-forward posture (which I do). Besides that Whiplash can start TM if it has gone on for a long time. These "knots" can and do last in your body for many years. I have removed and had removed, spots that date back to 1972 when I spent a Thanksgiving night, all night, loading four-turkey pans into ovens at one of my first jobs. That Sciatica pain lasted for 24 years until I had the trigger point removed from my spine last year. That's why my hip no longer has any pain.

Anyway, watch out for doctors who want to cut. Most doctors who can't find an answer to problems always wnnt to cut for exploratory reasons or want to give pain pills to shut me up. I think I have a better way and I'm just trying to spread the information so everyone can look at a different method of solving a problem.

For what its worth,
KBCMT

Here's a nice triggerpoint chart for the upper body that might be of help for some of you -
http://www.pressurepointer.com/pain_reference_chart.htm

Many use a tennis ball or other ball sizes against a wall or laying on them on the floor to find the triggerpoints and apply the pressure.