I am new here..... looking for support.
 

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!:hug:

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. :)


http://i136.photobucket.com/albums/q...e/image066.jpg

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!

Occipital Neuralgia and treatments (my story)
 

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.

Occipital Neuralgia and treatments (my story)
 

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.

Draftergirl, thanks for posting about your experience. My doctor has mentioned this procedure, although no firm discussion has taken place. I appreciate hearing your thoughts on the whole process and the relief your getting. Take care and low pain wishes to you, EE

Looking for help
 

Marissa-

It sounds like I am in the same boat as you - suffering from ON and TN. I am curious is yours bilateral? Have you found the cause? Anything you've found that helps with he pain? I am trying to stay strong but gradually starting to lose hope and finding I can't cope with the increasing pain. I am thinking it would be nice to have someone else going through this to talk to.

I am starting to feel very alone since no one in my life understands why I am not up for social events anymore.

Ali in Colorado

Marissa, the trigeminal neuralgia pain is by far the worst and can be treated with tegretol or the generic carbamazapine which did stop my horrendous pain that the TN was causing me. I had a root canal during a bad cold sore, and the doctor I went to in Portland told me that my TN was atypical, caused by herpes virus (stirred up by the root canal) and that it would likely subside with time ...also that it could return at times of stress. I keep the meds in my cabinet and have been free of the TN attacks since 2004. So get a good doctor and get better. PS I still have the occipital neuralgia and I treat it with ice packs to the back of the skull and anti nausea suppositories that work to help me sleep and keep me beyond the pain. I also eat two oranges a day..one for breakfast and one an hour before bed. It keeps my blood sugar up and prevents the midnight headache! Guess I am hypoglycemic and this works for me. Good luck!:hug:

I also had the root canal before the neuralgia attack! I think more dentists should be aware of this connection! I had a chancre sore (cold sore in my gums) and did not think anything of it when I had the root canal, and I am positive that was what set of the trigeminal neuralgia.!! I went to Portland Or for help and the neurologist there put me on carbamazapine (tegratol) and that stopped the pain. After several months on that drug (nasty side effects) I eased off the pills and the pain has not come back. I still have occipital neuralgia that I control with ice packs and sleeping pills when I do have a bad attack. I eat oranges to boost my blood sugar if I feel pain starting and lie down with an ice pack and sleeping aid or anti nausea suppository. I am pretty OK now but I have been to hell and back. The TN was the worst pain I ever had and I know pain as I also get occasional kidney stones that put me in the hospital! Good luck and check out the Portland Neurology doctors..I forget the name of the Dr that helped me..started with B..........that was in 2004. good luck all

Another New Member
 

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...

hello
 

I am glad you found this site. I am new too, only a week or so. I have found support for sure. My emotions are under control for the moment. I am sorry you are suffering. There are people who indeed know about suffering and will help you to cope. I have let go my housekeeping too, it gets done alot slower too. I prefer reading a book. I am trying to do those things that help me to cope with my current problems. You will find comfort and help here with alot of good people who care about you. We are all the human family, and need each other. Ginnie:grouphug:

I can relate
 

I too am new here, but not to the same problems as others. I too have TN and ON. I was diagnosed with TN over a yr ago after 4 root canals on 3 teeth. I do not think that the root canals caused my TN. I think I has TN and everyone thought it was teeth problems, cracked tooth syndrome. I do know that dental procedures can aggravate the TN.
I have had 2 MVD surgeries to fix the TN. they did find a compression. this was after many months on different drugs, wrong MRI Images, drugs quit working. finally found a near dr that did the right MRI, found the compression, did MVD and I was pain free from TN for almost 8 weeks and then came back. I did have severe pain in back of my head similar to TN from the moment I woke up from surgery. kept telling everyone something was wrong in back of head. I had a second MVD to figure out why my TN pain was back and new neurosurgeon found that I needed more padding at the outer limits. this helped stop the TN pain again. I then had a third surgery to look at the back of my head and they found my occipital nerve was shredded. they think it probably got caught in the retractor during the first surgery by how the nerve was shredded and where my first MVD incision was.
none of the anti seizure meds have helped and I am now using fentanyl and precocet for break thru. only shaves off the worst of pain.
I am now scheduled to have a stimulator placed in 2 weeks with the final placement 2 days after trial is over, if it is successful.
I have decided to try to talk about my experience in hopes that it will help others.
Easygoing

richjobeman
 

hi,Ican feel your pain,I have oc and it gets into my face,mainly on my left side,scalp a little on my right.I do the steroid inj. every 3 weeks,I think that helps,if you do them every18 to 19 days.I have been told that tn can be fixed with certain surgeries but the oc is harder to fix.But I think the stimulater could be helpful,there a couple of new things out there that could work.I`m thinking about trying the stim.How did this happen to you?That could be factors on getting better.The pain can be soooooooooooooo bad,but maybe we will all find a way to get better!!!

Making headway
 

Maybe I can throw some hope your way.

I have been dealing with Tregeminal Neuralgia for 6 months now. Long story but the TN started while I was in massage therapy school last August while learning to repair old injuries on my self. I was getting "popped" more than 50 times per minute and some events would last 5 to 30 seconds. I saw a chiropractor to make sure my neck was where it should be (or just pull my head off if it couldn't be fixed) and he adjusted me, next I went back to school and had one of my instructors work on my neck. Two weeks later the TN was gone...for two months. It came back about five weeks ago in 15 second bursts that put me to my knees.

I am a Certified Massage Therapist now and have been treating my own TN. I have reduced the shocks to two or three pops on my first bite of food in each meal but it goes away after that and I can eat in peace...until the next meal. I would consider it weight control but I'm 6'1" and only 150 lbs and need all I can get.

Look into Trigger Points, I had hundreds of the little knots in my shoulders and neck. As I work the knots out of my neck my TN is getting better. I have enough circumstantial evidence right now to convince me that I am effecting the TN and keeping it at bay for the time being. I expect to have it gone in the next couple of months if my treatments continue to advance like they are right now.

You will need a good medical massage therapist. I have been treating my own but it is not easy, other therapists who I have consulted have been very surprised that I could effect my own trigger points and remove them. It takes relaxation of the specific muscle group and then applying pressure to the point to relieve the cramped muscle location. Its a pat your head rub your tummy type of deal and not easy to do but you can get it done.

At the moment, if I go a day without working on my neck muscles it starts getting worse by day's end, but it is mostly calm with two or three five-minute sessions a day. I believe that as I remove knots in my spinal column and shoulder I'll find the one pressing on the nerve that lights up my cheek, lip, eye, and teeth and I'll be done with this. I'm in northern California and I'd be happy to answer any questions you or others have, right here.

KBCMT

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.

Found it!
 

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 FOUND IT! The cause of my TM. It only took a total of three weeks of palpation and experimentation to find two small muscles in the back of my head that caused my TM.

I located Rectus Capitus Posterior Major and it was a little bit sore. The reason I found that area is that when I would push on that location on my head my TM would sometimes stop in its tracks. I know that if you press on a trigger point it will stop the referred pain it causes. I felt that treating that location like a trigger point was worth a try. Does your TM strike you less when you lie down?

My TM was 30% better after I worked that trigger point area, even though I could not find an actual trigger point there to start with. The next day I found that the release of that muscle had relaxed an area next to it (Oblique Capitus Superior) and I found a trigger point there as well so I worked that muscle next. That was 10am this morning and by this evening I could eat without shocks to the face, showered and washed my face, brushed my teeth, flossed, and kissed my wife good night, things I haven't done in weeks now.

Not much movement on this forum and I'm moving on to tell others what I have found. If anyone wishes to discuss this with me further I will try and look in on this forum once a month or so, or you can let me know there is a message here by sending me an email **. Don't put up with TM any longer! My discovery may not work for you but I have traceable, documented, science as to why it worked for me, and what I found, and why doctors don't always know.

For what its worth and smiling again,
KBCMT

No disrespect meant, but trigger points don't do a thing for ON. When its bad, touching the nerve sets off lightening like shocks of pain that can occur in the neck, scalp, forehead, and sometimes the temples. The pain occurs where the nerve travels and is not referred pain from trigger points. When mine is really bad, just my hair moving is painful.