Occipital Neuralgia and Chronic Pain

[CelticRain30]

I have had Greater and Lesser Occipital Neuralgia and Chronic Pain since 1998 and been looking at pretty much anything and everything about it that I can, internet, library, doctors pamplets, you name it and I have read or tried it, nerve blocks, freezing, radio frequency lesioning, medications of ALL types. Nothing has touched my pain, the most relief I got was from the radio frequency lesioning and that varies from person to person on how long it will last. For me it was only a few short weeks.
Before I lose my train of thought... I was trying to say that there really isn't anything helpful to me in everything that I have read, heard, seen, or tried.
Most everything I have read all say pretty much the same thing: Occipital Neuralgia doesn't interupt everyday life/living.
For me thats a lie. My everyday life has not been normal since this has happened to me. I resent the fact that they all say that but no one mentions that it can also be really severe along with interupting your everyday life/living.
Does anyone else feel like this? Does anyone have a good website or reading material about Occipital Neuralgia that you can suggest?

Wishing Well,
Kendrah

p.s I have also posted this under the Occipital Neuralgia forum, but thought as this forum gets more views I might post here as well with hopes to thoughts and suggestions. Thank you all for putting up with me!!!
xoxoxo

[sallyb]

I have chronic pain from T8/9 to the floor. I am sooooooo thankful that my head is not involved in that mess. Head pain is so much harder to treat, from what I understand. I feel for you.

There are a few here who suffer chronic pain in their heads. I am sure somebody will come around to give you some info.

Your friend.....sally

[cindybear]

Boy, Do I know where you are coming from. I have a inoperable aneurysm that is pulsating on the trigemenal nerve..For 6 years..The pain is horrible..The Jabs and jolts that I get, the only meds that have really helped that is topamax..but the horrible relentless pain, the morphine and methadone just dulls that to a 5..I just wanted to lrt you know, you are not alone...Hugs, Cindy

[CelticRain30]

I want to thank you for responding to my sometimes rambling posts, ( I am prone to lose my train of thought at times) and a big Thanks to you Sally, I love hearing from you because you make me feel less alone, and I only have that from a very select few, including my family.
Cindybear, I had to wait almost 3 months for my results to see if I had a aneurysm this summer, it was the scariest time of my life. I was lucky as everything came back free and clear. I am sorry to hear that yours is inoperable though, what are your drs doing for treatment and how do you handle the pain? I am sorry if I am being to nosy, but I like to know everything I can. Espeically if I hear someone else has head pain, that way I can take ideas back to my neuro and ask lots of questions to see if it can help me if it helps someone else.
Do your eyes dilate? Or just one of them? Am curious because my right eye dilated during a migraine and my drs told me after a battery of tests that that is the first sign of an aneurysm. They now think my ON is getting worse and causing my eye to dilate before, during, and after a migraine. They think I have more pressure inside my head and its releasing in my eye and by breaking blood vessels in my face. I look and sometimes feel like a battered person, all bruised and red from it. Even though they said I am free and clear I am still scared everytime it happens that I might have one and they missed it. They told me they have never seen one eye dilate without a aneurysm before.
Anyhow its late so I am off to bed, talk to you all later! And Thanks again!!!!!

Wishing Well,
Kendrah

[sallyb]

Kendrah, please send a private message to Kathi49 . She is awaiting your message. She has a few things to help you with the ON.

Hope this helps! Your friend.....sally

[CelticRain30]

Sent one to her late last night!

Wishing Well,
Kendrah

[Kathi49]

Hey Kendrah!

I got your back! Or, should I say, the back of your head. :) I have sent you a PM and hope you got it.

Cindybear is right...this stuff is horrible and NON STOP! Although, mine all ceased with a fusion. However, after I have read all of your posts, you guys seem to have more going on than what I had. Mine was strictly from my C3/C4 cervical spine and the facets were just crushed with osteoarthrits.

I used to read up on ON all the time and you are right...I think there was only one site that I saw that mentioned the pain is severe and debilitating. I know I was missing work right and left and was completely bedridden NUMEROUS times. I could go on and on but I don't have to because I know how you all feel...it is the worst pain known to man I think. I have read, seriously,that it is second Trigeminal neuralgia on the pain scale.

Okay, so here I sit now with a second fusion (C5/C6) and I am having that awful occipital pain and tightness. But this time, MINUS the electrical jolts and jabs! So, I think it is just muscular for now.

Anyway, IF there is anything I can do or help you with, let me know. We both live in Indy and I know of quite a few good doctors that could probably get you straightened out. Oh, I was going to ask you if you think the RF might have made things worse? Hang in there!

[sallyb]

Thanks for coming to the rescue!!!

sally

[cindybear]

Hi celtic,
Sorry it took me so long to get back to you, Had a couple of bad days,,,Bad pain days...I have a pain management doc that try to make my life bearable..I'm on 90mgs of morphine and 60-80 mg of methadone. 200 mgs of topamax and ativan 2 times a day..Every once in a while I have to get injectables..My doc gives them to me at his office..We have talked about me receiving them at home and hubby giving them to me..Thats Demerol and visterol. (150/75 mgs ) But so far, so good. My other docter that I have is my Neurosurgeon..I had brain surgery, and it didn't work (Jan 2005 ) Put a stent in and I had a stroke..A horrible day !! Then I had 4 angiograms following that year..Now I'm waiting till Jan of 2007 to have another angiogram to check on it, They check the stent placement and to see if the aneurysm has growned any..We hope it doesn't grow anymore...Thats the reason we had the surgery, cause it grew..But now I'm on so many resrictions. So this monster doesn't grow...A person can't have any fun,,I wouldn't feel like it anyway..But I have to leave the house 2 times this week. And it's really gonna be hard on me...I don't look forward to it at all. I just got my disability this year..I fought for it for over 5 years for it..I knew I could never work again..Half the times I can't even think...But I wanted to let you know, I know your pain hon,,And if there is anything I can do for you let me know,, I'm allways home..Unless they force me out of the house,,,Hugs, Cindy :p

[phutsach]

anyone else out there have any experience of this...following a car crash 4 years ago i have been in bot only chronic whiplash syndrome (pain in the neck!!) but the riht side of my head issort of num and yet also hurts so much and feels like i have a lobster attacking the back of my brain all day every day...is this normal? this is the first time i have used a forum...just want to know i have tried everything and am not going mad!

[dkdreamer1]

Kendrah,

I too suffer incredible headaches, often requiring hospitalization. My left eye dialates and droupes badly. I was once sent for MRI at midnight because of fear of anyeurysm. They thought they saw one and was hospitalized stat. It ended up not being so. but my vessles were large and pulsating at the time. They now say that the eye is part of my migraine pattern. I too have had a stroke also.
DK

[hoops2u]

Hi Folks,

I am so sorry you must endure such pain. When the pain is in your head you just can't think. I just wish they would come up with a good anti pain med that didn't either make one tired/sleepy or unable to think straight.

When I was on a lot more med than I am now, I remember I was trying to make this little "cat house" NO REALLY ! It was for our outdoor feline you silly twits, now gitcher heads out'n the gutter, pulease......

Anyhow, when I got done, and looked at that little house the next day it was about 4'x4' square, only not square at ALL! It was all crooked and hanging every which way, and falling apart, and there were lots of snickers and that was just the cat, my so called friends laughed right out loud! ahhhhhahahaha!!

Well, I don't have the headaches much, Thank You God, but I do have earaches, face aches, neck aches and the bones above my left eye hurt and my eyesight is quite affected. I assume this is from damaged nervesw in my neck. Don't really know, I do know I have some herniation in the cervical vertebrae.

I will pray for you all with the severe head pain. Darn it all. There are a lot better ways to dialate a pupil than through pain, that's for sure...ahem...

God is Blessing you right NOW!
hoops

[Kathi49]

Yep, ON can be horrible. And I feel for Kendrah. Everything she has said (and I think that is an older post) is true. The meds didn't touch it for me either. I know she has been through heck and back trying to get it resolved. :(

So, here I sit this evening with what I will term a slight ON headache but I can feel the nerves pinging in my scalp. It just tells me that it is time for C2/C3 facet injections again. And I KNOW it is the heat and humidity that has triggered it again. It happens when the weather starts to get hot and humid. So, maybe I will slather some Biofreeze around my hairline and into my scalp tonight. :D It does help to calm some of it down.

[MarleneW]

Kendrah,
I have TN and ON. I have had 2 surgeries to try to correct the TN and also 2 to try to help the ON. They were not successful, in fact I have more pain now than I have ever had. I have described these to you on the Occipital Neuralgia forum. Besides the pain, pressure, and sharp electrical jabs up the back of my head, I now started getting cluster headaches. I get much pain around and in my eye from these, my eye also gets droopy and it waters. Just recently I had an eye doctor appointment, the pressure in my right eye(which is the affected side) was up 7 points higher than the other. The eye doctor told me that there should not be more than a 3 point difference. The pressure in my right eye is 22, anything over 21 is considered a risk for glaucoma but I have no optic nerve damage. He and I were wondering if it has anything to do with the TN, ON, or the headaches. Have you had any problems with this?

I hope you find some answers soon. I, too have been searching everywhere. My neurosurgeon would like me to consider a stimulator for the ON and Motor Cortex stimulation for the TN. With the added pain I have had after each surgery, I'm very skeptical about having more surgery.

Good luck to you..
Marlene

[sassyschoolmarm]

Greetings,
I was in a car crash 12 months ago. We were hit from behind at 40mph whilst stationary at traffic lights. My fiancee was fortunate and saw the other car in the mirror and managed to brace himself on the steering wheel. Unfortunately, I had no warning and was flung forward like a rag doll. My head then slammed back and I hit the bottom right hand side of my skull on the headrest hard enough to cause a concussion. The minute it happened, I felt a shooting pain down in to my shoulder and neck, up round the back of my ear, curling over the top of my head and in to my temple and eye. It hasn't let up since. My fiancee observed that for 2 days after the crash, my right pupil was larger than my left. I have moderate pain most of the time, most often centred in my eye cavity, temple, bottom right of skull and deep in my shoulder. All this added to whiplash, lower back trauma, rib and hip contusions from the seatbelt impacts makes me a pretty sad puppy. Sometimes, the pain gets so bad in my eye that it streams, I can't look at light and my vision goes blurry. I feel like my eye is swelling up to the size of an orange and it drives me mad. I am a teacher and I have to be on the ball as thinking is my living. I can't take heavy painkillers and am only able to get relief in the evenings when Codeine Phosphate takes the edge off the pain. Last week I needed emergency medical treatment as the pain got so bad. I have no idea what triggered it or what I can do to soothe it or reduce it. The only thing that seemed to help was using the heel of my hand to press in my eye. Does anyone have any suggestions and does this sound like occipital neuralgia? I am still waiting to see an opthalmologist.

Sylvia, UK

[tortoisegirl]

I urge you to see multiple specialists to figure out what is going on (this may be multiple issues). I hope you can get some relief soon. To rule out occipital neuralgia I think you would see a neurologist (that is who ruled it out for me; I have chronic head and neck pain that started out of the blue).

Are you saying it is mainly eye socket pain with neck and shoulder? I also recommend asking for a physical therapy referral if this is not offered to you. This should help you with the pain, recovery, etc. They have many types such as working your muscles, massage, electrodes, swimming, heat/ice, etc. I do agree an ophthalmologist is a good start besides seeing a primary doctor to get necessary referrals.

There are medications you could take to help with the pain. Anti inflammatory medications could help (otc or Rx) if you have not tried them all, but I think at this point you may want to find the cause of the pain so hopefully this can be resolved. Frequent pain medications in my opinion are not a good idea until you have ruled out treatments, have a diagnosis, and have tried other types of medications. You may also try several different types of pain killers to see if you can tolerate one for daytime use if needed; usually sometimes at least a small dose of something can be used.

You should not be in pain for this long without a diagnosis! How many and what types of doctors have you seen? Why didn't you get this resolved right away? Did it develop more over time? You say you have just received emergency treatment so this is why I ask. Typically the emergency treatment would be done same-day. I hope you can recover the medical costs and have not waited too long.

My best guess is this is not O.N. but something else that is more injury/whiplash related. I could be wrong though. I also think you may have a few things going on just due to the different areas you speak of pain.

Please start a new thread if this does not get the attention it deserves. Best wishes.

[debhun]

So sorry I have not wrote to say welcome to the board. Sorry you had to come here but it is the best place to be.

I have migraines very bad and so does my daughter and Aunts. It runs in our family.
Now my daughters has got so bad that now she had one she will not have any pain but will lose the use of her whole right side. But after the migraine goes away the use of her side come back. This just stared 6 months ago. She went to Duke and they told her nothing they could do for her. But she has a Dr here now that helped her alot.
Now my aunts One almost lost her live. She had a brain bleed.They gave her 12 hours to live if that. I said no way she can talk to us. But she is with us today 2 years later. She has what she calls a black whole in her brain the size of a baseball. When she trys to think of a word she will say it went in my black whole. But she can walk talk do any thing.Ride horses etc.. But her Dr can't believe that she is not at leases in a veg state.But Dr said she should be dead. Nice thing to said to someone. But is true.
My other aunt which is the sister to the other one. Has had bad migraines for as long as I have known her. She just found out her has a tumor behind her eye and we don't know if it has gone to the brain or not. These are my moms sisters. They are in they 60's. My mother has never had a migraine. Never took a pill in her life but for a headache from time to time and she will be 75 in July.
I didn't mean to take over you post. I was just letting you know you were not alone. I hope you do get some help with your pain.

Hugs
Deb

[cindybear]

Sylvia,
The best stuff that has helped me with all my head nerve damage is Topomax..But I caution anyone when using the stuff, use very slowing and tirate up even more slowly..Because there it has a nickname of dopamax,,It did that to me and I stopped it..it was way to much for me..But the next time I tried it..I did it , My way,,slow and easy..It no dopiness,,No forgetfullness..Slow as, not upping any doses until your body got use to what you are taking and only up it only 25 mgs, at a time,,eventually you will get where you need..Like I am plateaued at 300 mgs a day..and no dopiness or sleepiness..The only bad thing I had was weight loss, and really it wasn't all that bad..pepsi tasted kind of bad..But you should allways get your eyes checked..But my pain is SO excusiating..And it takes care of alot of the shooting stabs behind the eyes..Jabs, Electrical shots..Pain pills takes care of all the pressure and the other pain..But if I didn't have my topamax,,Pain pills would not even work at all..I have tried so many of those others..They just didn't help me..Good luck,,If there is anything I can help you with, I am here,,Hugs, cindy

[hoops2u]

Hello All,

I have just writtten to another with facial pain. As I have shared, I have some severe pain facial and ear. I have been to many various pro's. Mostly, surgery is recommended or more drugs. I have referred pain due to herniated discs in the Cervical Vert. (not to mention all the surgeries in lumbar,) SUBSEQUENT AUTO ACCIDENT AND PARALYZED WAIST DOWN, I can walk some now, Thank You God.

I picked up one of those "inversion tables" at a garage sale last summer and it has been sitting in my family room ever since. This pain has finally gotten to the point that I was neary a complete shut-in. I decided to try the table. Looks like some sort of torchure device.

Well, I climbed aboard and could immediately feel relief as the vertebrae began to pull apart. Wow, what a difference. I stayed on the table just 2 to 3 minutes and was pain free (face & ears) for severaly days. I can't believe I waited so long. The pain returned and I got right back on the table. Again, relief, straight away!

Now, I get on the table about 2 to 3 times a week for 5 to 7 minutes, sometimes less. I am a firm believer that less is better. I have been able to reduce my pain meds significantly. And I am about 1/2 inch taller (won't have to lose so much weight now), really, though, with all the back surgeries, ruptured discs, etc, I have lost over 2 inches, maybe more.

In any cae, I am so very pleased with this table. It is a very gentle therapy. As I hang upside down, I feel such relief, almost weightless at times. And when I disembark the table, I feel so light and pain free.

The person I purchased the table from did not have the manual so I must attempt to gather on on the net. Therefore, at this time I do use it with caution, but I mean to tell you, with the resutls so far, if I am able to get more agressive and the Dr.'s agree, I surely will. My goal would be to bre medication free and back at work helping others.

Good Luck and God Bless,
hoops

[sassyschoolmarm]

Thankyou everyone for your kind advice - much appreciated.

To answer Tortoisegirl, in the good old United Kingdom, we have something called the NHS. It is our free National Health Service and in principle, it is a fantastic idea - oh my goodness, free healthcare. I look at stuff about the US system and I regularly thank my lucky stars that we are not getting screwed over by health insurance companies, as do most Brits. Unfortunately though, on the downside, the NHS is understaffed, underfunded and under-resourced. So, in answer to your question about what specialists I've seen, precisely none. I have been complaining to my GP about the pain since the accident and have not yet been referred. There is a waiting list to be put on the waiting list :-(. I had 6 sessions of physio just after accident and no treatment at all since despite regular trips to doc. The other driver's insurance company is in the process of releasing funds so I can see a private opthalmologist.
The pain is mainly back of my eye and temple with occasional transfer in to my upper jaw when really bad and the pain begins deep inside my shoulder just behind my collar bone and also, another locus is on the back of my skull at the bottom where I hit my head in the accident. The orthopaedic surgeon who wrote the medico-legal report for the insurance company stated that he suspects occipital nerve problems.
The emergency treatment my GP gave me after having me crying in his office was a pack of codeine phosphate. I can't take anti-inflammatories as I have a history of upper intestine problems and indigestion.

Getting really hacked off and feel tired all the time as the pain is really beginning to wear me down.

Sylvia

PS I will look in to one of those tables.

[rodstar43]

I am a retired military Vet. My pain started in the fall of 1969. I ran into a steel beam in an aircraft hanger. Many, many doctors tried many things from then to 1984 when I retired. The chronic headaches lessened for a few years during the 90s (lessened being only 3 or 4 times a week. Then in 2002 the head aches came back with a vengeance. Since then I got full disability from the social security administration, had neck surgery, many injections in the neck top to bottom C-3 to C-7. I have seen many doctors and headache specialist. I have taken just about all the medicines they offer. I was diagnosed as having a non specific migraine type of headache. I thought it was a tension headache. The smart docs told me that the headache caused the neck pain. I had never heard of occipital neuralgia and chronic pain before today. It was never mentioned. I had what was suppose to be an occipital nerve block last year but the headaches got worse. I have been diagnosed with sleep apena now and I am also on a c-pap. The neuro doc thinks that if she can get my sleep back to normal that the headache pain will stop. No luck so far. Like one other on this site the only thing that seems to work besides heavy pain drug is biofreeze on the neck. By heavy, I have had from Oxicotton, morphine, hydrocodone, panlor on down. All I get is some temp relief. I just want to share as I have learned a lot of what does not work over the last 40 years.http://brain.hastypastry.net/forums/images/icons/icon7.gif
Only by the Grace of God that I have made it this far.