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Living With Facial Pain

Occipital and Trigeminal Neuralgia

#1

I have been looking for different forums that will help me with treatment options concerning both Occipital and Trigeminal neuralgia. I can find forums on both but not together. Has anyone had both conditions?

My pain is sharp/stabbing pain when not on Gabapentin. The Gabapentin has heped a little but now I have a strong pressure from the back of my had, over my ear and into my face (eye, cheek, jaw). Any info will help!

#2

Your question is timely as I was actually now searching for migraine help for my 20 year old son. You are the first person I have ever seen pose the question, and yes I have both. Reality is the whole mess started after a catastrophic car accident. The hard part was anyone believing I could get to different head pains at same time. the occipital is in left eye and basically eliminated my career because could not open eye from pain. The secondary TN pain was far worse when it went full bore and felt like it was located further back in head. Of course proximity did not help my case. I would not be here if not for an MVD done that eliminated the major pain. I now have left facial pain that is through teeth jaw and a bit in ear.

I now have a neurostimulator that does a good job of controlling the occipital pain and rely on about 1800 mg gabba for the TN . It has been interesting as the main distinction is that the occipital responds to opiates, but not the TN. My journey started in 1998 , took my career in 2004 and over the last 3 years I have found what appears the best protocol for me. I can write a book, but should you wish to communicate my cell and email follows. I can only share my world as we are very rare birds. best regards Ron LaPine 336-■■■■■■■■ /■■■■■■■■■■■■■■■■■■■■ - contact as you choose

#3

I have never had an accident or head injury, my TN paid started suddenly when I was 19 but would come and go. The last fall it started after I bought a house, I assumed it was just from the stress but it wouldn't go away. I was out of work for nearly a month. Then the pressure on the side of my head started, I thought it was all the same thing. Little did I know that the headaches and pressure I have been feeling since I was 19 was actually Occipital Neuralgia. The 3600 mg of gabapentin are helping control the stabbing pain in my face but aren't helping with the pressure in my head. I feel like my scull is going to crack open from all the pressure.

I'm not sure that I am ready to consider surgery of any kind, it scares me. I just want it to go away!

#4

Hi brown eyed girl,

Officially I have both as well which caused a lot of confusion for everyone initially. There is a lot of overlap in both so for me it really boils down to trying to see what works.

#5

Not sure if it is the exact same, but I have had TN for almost 10 yrs and before I first developed the TN pain, I had occipital migraines, I did not have the headache following, but I had the Visual eyesight problems. About 2 years following I developed the TN pain on the right side, middle branch of the nerve, which started suddenly one morning then the visual problems disappeared. I am afraid it is beginning again on the left side of my face because every now and then I get little stings above my left lip and I have been having Occipital migraines,( no headache) problems for the pass year. I had MVD surgery 5 years ago on the right side and it has been wonderful, although i get stings from time to time and have never been free of the medication because last year I developed TN pain in my lower right jaw, so I am back taking 200mg a day of carabamazine, the generic to tegretol, it helps me more than any other medication. Linda

#6

I have both, along with other neurological conditions. I have had two MVD’s for my TN, which provided 4 and 3 years of relief respectively. The occipital neuralgia developed after the second MVD. I am currently back on a medicine regimen for the TN and also get occipital nerve block injections. I am considering a neurostimulator but I am afraid of how it might affect my TN.

Hope this helps.

David

#7

Has anyone ever gone to a chiropractor and had any relief? It sounds easier than surgery...

#8

I have had neck problems since a car accident 20 years ago. Occasionally things would get bad and I would have big muscle knots in my shoulder and neck one side. I has spells of (self-diagnosed) ON- but if I could get the muscle knots to go then the pains went too. I found out I have a disc problem in my neck which made it all worse, I had physio and gentle exercises to do on my neck, plus ibuprofen and heat to relax the muscles, and then it would go. Now I know what to do to avoid it, I've been okay. So a chiropractor might be able to help. Bad posture also doesn't help.

#9

I have, It is so strange though. Before I developed severe TN on my right side I developed occipital problems and I could tell the eyesight problem was on my right side, as to seeing the zig-zag lines in my left eye. This went on (off and on) for about 2 years then , bam , the TN developed, oddly, my occipital eye sight problems stopped. Oh, yes, I never developed a migraine headache , which the dr. told me I would. Also, the occipital eyesight problem would only last like 20 minutes then would start improving. My TN is sharp-striking pains as of electrical shock feeling would be. the only help I get is with carbamazapine. I am taking 400mg now. I had MVD surgery in 2010 and it was successful but last year TN started back up in my lower right jaw. It is trying to start above my lip on the left side now and it frightens me because the left side is where my occipital problem is and that is how it started before. Also the pain is more severe for me in the middle branch of the nerve, which is above my upper lip.

#10

I think I have both conditions, although I have been to 6 neurologists over the last few years and not one has mentioned occipital neuralgia to me. I have been told it is trigeminal neuralgia that is affecting my right eye that is closed much of the time because it's too painful to have it open. The eyelid is always red. I see an eye doctor every few months and am on steroid eye drops. He has not mentioned occipital either. The worst of my pain is on my scalp.

I never heard of occipital until seeing it here in this discussion. So I just looked on Johns Hopkins website. They say about occipital neuralgia that the "symptoms are on the scalp rather than the face. . . making washing the hair or lying on a pillow nearly impossible". Bingo! These are two of my worst problems. Johns Hopkins has occipital on a list of kinds of headaches. That would also explain why I have round the clock tight squeezing skull popping head pain.

But I also have stinging stabbing burning on my forehead. No problems with ear, jaw or teeth. Just looked on other websites and they are talking about back of head and neck pain for occipital. So here we go with more confusion for me because I don't have those symptoms.

#11

If you look up images for the 3 branches of the Trigeminal nerve, the 1st branch of the trigeminal nerve is the ophthalmic nerve and goes to the eye but over the scalp too, so perhaps you have TN but just the 1st branch affected?

http://medical-dictionary.thefreedictionary.com/Trigeminal+system

I have some burning pain over the left side of my scalp- this is often triggered by a breeze, and I have a lot of pain over my left eye too. I presume that's all caused by TN.

#12

I guess my pain must also be from TN and not from the occipital nerve. I was told about the ophthalmic branch of the trigeminal nerve when I was diagnosed. It's just that when I saw the references to not being able to lay on a pillow at all or wash my hair without staggering pain I got drawn to the other diagnosis.

I too would like to hear if anyone has gone to a chiropractor for this upper branch with eye pain and what was their result. I have not tried it, but am considering.

I

#13

I have symptoms of both. I also have neck pain, shoulder, arm and hand pain. All on the left side. I was in physio and having acupuncture for my neck earlier this year and I think it helped my face as well as I have had an amazing three months of pretty low pain. Things are ramping back up so I don't know if my relief was partially seasonal too. I just posted a discussion about NUCCA in the general board. It has a link to an article that you all should check out.

#14

So I have started a new medication and so far, so good. I am still taking 1800 mg of Gabepentin 2 times per day and now 100 mg of Zonegran 1 per day. My ON has almost completely gone! There is still pressure in the back of my head and neck but I haven't had stabbing/shocking pain in almost 2 weeks! I haven't felt this good in a long time. My Dr wants to start lowering my dosage of Gabepentin but I'm nervous that it will all come back. Grrr It's a never ending cycle!!!

#15

I have started going to a chiropractor and I am hopeful. I am still having pain as I have only been going for a few weeks, but he has explained things that my neurologist never did. I have had x-rays before and they always said that everything was fine, now I am shown my x-ray and it is clear that everything is not fine. My C1 and C2 vertebrae are completely turned sideways, I saw it myself. I'm not sure how it happened but we are hopeful that if we get them back to normal that my pain should go away. I hope this is the only problem since I am having 2 different issues. I will keep you informed.

#16

It is not unknown to have more than one head/ face pain issue at the same time, be it occipital neuralgia, migraine, neck pain, other cranial nauralgis etc, with the same cause. This being the case the neck can be a likely culprit. Whether you have chosen the right therapy/ therapist time will tell. All the best. ( self help neck measures can also be of help, as demonstrated by a small number of folk on the forums)

brown eyed girl said:

I have started going to a chiropractor and I am hopeful. I am still having pain as I have only been going for a few weeks, but he has explained things that my neurologist never did. I have had x-rays before and they always said that everything was fine, now I am shown my x-ray and it is clear that everything is not fine. My C1 and C2 vertebrae are completely turned sideways, I saw it myself. I'm not sure how it happened but we are hopeful that if we get them back to normal that my pain should go away. I hope this is the only problem since I am having 2 different issues. I will keep you informed.

#17

I was afraid of surgery until I had to have a C-section in 2000. Then gall bladder, then foot, then neck, and now more for TN, whatever kind it is ultimately labeled. Don't fear surgery -- Have faith that it will resolve the problem. Follow your gut and heart when pursuing any serious medical treatment. If it doesn't feel right with the doctor and his staff, then think twice. Get a second opinion even. Best wishes!

brown eyed girl said:

I have never had an accident or head injury, my TN paid started suddenly when I was 19 but would come and go. The last fall it started after I bought a house, I assumed it was just from the stress but it wouldn't go away. I was out of work for nearly a month. Then the pressure on the side of my head started, I thought it was all the same thing. Little did I know that the headaches and pressure I have been feeling since I was 19 was actually Occipital Neuralgia. The 3600 mg of gabapentin are helping control the stabbing pain in my face but aren't helping with the pressure in my head. I feel like my scull is going to crack open from all the pressure.

I'm not sure that I am ready to consider surgery of any kind, it scares me. I just want it to go away!

#18

I had bad neck pain and a awful headache for 11 days and sinus type pain was awful I don’t know if this Is o/n as well. Currently I have Geniculate neuralgia. I get the deep throbbing pain in the ear which can last all day and I also get the electric shock stabs in my ear, I know it’s nerve related like tn as I had tn 12 years ago and same sort of pain :frowning: I did have a successful mvd for that though

#19

Hi I had/have both TN and Occipitial Neuraliga. I had pretty much the same symptoms (pressure/burning pain in the back of my head and up over my ear and into my face. I had 4 occipital nerve blocks which first two worked well last two not so well but doc said I was becoming immune to the medication. I then opted for a Occipitial Ablation (spelling??). It worked tremendously. I have been pain free in the back of my head since July 2015. I went to Dr. Eric Helm at UPMC in Pittsburgh, PA. I am still working on the TN. :-) I had a Trigeminal nerve block at UPMC in Sept that worked for about 2 and a half months but it was pretty painful to get. Dr. Wasan did it. I am still looking at other options as my TN is from head trauma (I have a closed head injury from an assault.). anyway, best of luck to you and if you need any other infor just let me know.

#20

Chiropractors adjust bone alignment, so unless a herniated disk or spinal subluxation is causing nerve damage, they wouldn’t be able to help you. The trigeminal nerve comes directly out from the brain, not through the spine, so it wouldn’t be impacted by chiropractics at all. I know this because my step-dad is a chiropractor.