Has anyone had pain from the eye area radiating to the back of the head and upper neck?

1

This is the first time I have had this much pain in my head, it has always been in my face. I am having excrutiating pain from my eye area to the back of my head and upper neck. It is a stabbing pain. Heat or cold does not help, I have taken 3 percocets since 5 a.m. when 1 or only half usually takes care of everything. I have taken this along with my other meds plus Aleve and cannot get any relief. I can barely move my head, although it is some better at the moment, I could not hold my eyes open for very long because of the pain. Once before I had the stabbing pain in the back of my head, but not nearly this bad, my general practioner told me it wasn't from the TN directly, just the nerve in my the back of my head reacting to the face pain, like tension. Just wondered if anyone else has experienced this.

By the way, I am finding this site very comforting just to know I'm not in this alone and I'm not crazy when I feel the way I do at times...:)

Donna

2

The disorder that your doctor was talking about is possibly "occipital" neuralgia, an issue similar to TN but occurring with a different nerve. Has anyone evaluated you on a course of the anti-seizure meds such as Tegretol, Oxcarbamazepine, or Neurontin? All of them have a record of better effectiveness against this category of pain than the narcotic drugs such as Percocet.

And no you're not crazy. There are a lot of very caring people on this site who know exactly what you are talking about. Possibly a bit more than your general practitioner, in some cases. Occipital neuraligia can occur either at the same time as TN or alone. It is generally not regarded as a "reaction" to face pain, though it may be co-morbid (happen at the same time) in some people.

Go in Peace and Power,

Red Lawhern, Ph.D.

Master Information Miner

3

Thank you Richard for you reply. Yes I am currently seeing a neurologist who has referred me to a neurosurgeon that I have an appointment with on Thursday. I am currently taking Neurontin (after taking Tegretol and could not function), I am also taking Lamictal and Tramadol. I only take the Percocet when the pain is bad.

I love my family doctor and he does try to help, but I don't think he is familiar enough with TN and he did refer me to a neurologist within days of seeing him with the pain as he recognized it from an associate of his that had just had surgery, so I feel very lucky that I didn't have to go through alot of the things and time that some of the people I have heard about. I did go the dentist first as many have done, but he was very assuring that there was nothing wrong with my teeth, it was then I went to my family doctor, his associate had just had the surgery for TN the week before after suffering with it for several years and going through many meds and 2 surgeries, he is finally pain free.

Will keep in touch with what the neurosurgeon tells me.

The pain has let up alot, I can at least move my head now.

Thanks again

Richard A. "Red" Lawhern said:

The disorder that your doctor was talking about is possibly "occipital" neuralgia, an issue similar to TN but occurring with a different nerve. Has anyone evaluated you on a course of the anti-seizure meds such as Tegretol, Oxcarbamazepine, or Neurontin? All of them have a record of better effectiveness against this category of pain than the narcotic drugs such as Percocet.

And no you're not crazy. There are a lot of very caring people on this site who know exactly what you are talking about. Possibly a bit more than your general practitioner, in some cases. Occipital neuraligia can occur either at the same time as TN or alone. It is generally not regarded as a "reaction" to face pain, though it may be co-morbid (happen at the same time) in some people.

Go in Peace and Power,

Red Lawhern, Ph.D.

Master Information Miner

4

.

Thanks again, Red, for sharing your wisdom. I also experience the type or path of pain, almost exactly as you have described, on an almost daily basis. However, now I have what may possibly be, the clinical name for this different monster.

Yes, I have all of the same symptoms you describe, except for the stabbing pain in the back of the head. When this happens, the stabbing pain is typically behind my eyes. It does, however, radiate to the back of my head and upper neck. I also have Scoliosis of the cervical spine with one slightly bulging disc and others that they say are arthritic.

I have wondered if this is related to TN, or not. Anti-seizure meds, unfortunately, do not take much of the edge off of any of my pain, yet I take them religiously, both Neurontin and Oxycarbamazipine, also a small dose of Cymbalta to push the Neurontin (as it was explained to me). I hear many reports that these meds are of great benefit to many sufferers. One thing I have learned from conversing with individuals with head and facial pain, is that what may not work for one, may be another's miracle. It is my experience that physicians have no problem prescribing such medications. The worst side effect, for me, at least, with anti-convulsants, is that they do make me drowsy (needing a cup of coffee right now, actually, to stay awake as I type).

Agreed, this site is full of caring people, and we are all here to support one another.

I'm sorry that you're also enduring what may be "occipital" neuralgia as well as well as TN. I am wondering, though, if you also have cervical spine problems, or sensitivity to light accompanying these symptoms.

Best of luck. Take care,

Stef

5

Hi Stef,

You have me wondering about my spine as my brother has scoliosis and only found out a couple years ago, he is 45, I am 48. I have always had problems with my back, from time to time it goes out and I can't move, this usually lasts for a few days, but it's bad. I feel like I'm falling apart. Today's episode is one of the worst I've had since this all began in September. You are correct in doctors prescribing meds, I am so tired of taking medicine, it seems like every week I'm trying something else, then that doesn't work so we try something else, I can't imagine all these drugs in our system is a good thing. I hate taking the narcotics, I am so afraid I will get dependent on them. I try not to take them until I feel like I have no other choice. Not to mention the cost of them.

I do have the stabbing pain behind my eye, however today's episode was more in the back of my head and neck, but on the right side only, this is the side I have the TN, the rest of my face hurts, but not excrutiating like the back of my head, forehead and neck. It has gotten so much better tonight, I used ice, heat, massaging and not moving, not sure which one worked or if it was a combination of them, of course I was taking the meds too. I increased my neurotin tonight, I'm taking 1200 mg and working up to 2400 mg, but as I am finding out from this site, some are taking a much higher dosage than that. The neurotin does seem to be more beneficial than anything else I have taken except the tegratol, but I could not function on tegratol, the neurotin only makes me a little loopy but can't remember anything.

I'm really down about it now too because I am going back to school and starting my 5th semester next week, plus I work full time and have a teenage son and separated from my husband, I don't have time for this in my life as I'm sure everyone feels the same way about it. If I don't get some better results from the meds or good news from the surgeon I'm afraid I won't be able to start my classes next week and that is the only positive thing I have in my life right now except my son and he is almost 17, he has his own thing going on and only needs me when he needs money....I know he loves me though, just a typical teenager.

Thanks for listening and the advice....it really is nice to talk to someone who understands the pain and the side effects of the meds, I'm not sure which is worse.

Have a great evening.

Donna

Stef said:

.

Thanks again, Red, for sharing your wisdom. I also experience the type or path of pain, almost exactly as you have described, on an almost daily basis. However, now I have what may possibly be, the clinical name for this different monster.

Yes, I have all of the same symptoms you describe, except for the stabbing pain in the back of the head. When this happens, the stabbing pain is typically behind my eyes. It does, however, radiate to the back of my head and upper neck. I also have Scoliosis of the cervical spine with one slightly bulging disc and others that they say are arthritic.

I have wondered if this is related to TN, or not. Anti-seizure meds, unfortunately, do not take much of the edge off of any of my pain, yet I take them religiously, both Neurontin and Oxycarbamazipine, also a small dose of Cymbalta to push the Neurontin (as it was explained to me). I hear many reports that these meds are of great benefit to many sufferers. One thing I have learned from conversing with individuals with head and facial pain, is that what may not work for one, may be another's miracle. It is my experience that physicians have no problem prescribing such medications. The worst side effect, for me, at least, with anti-convulsants, is that they do make me drowsy (needing a cup of coffee right now, actually, to stay awake as I type).

Agreed, this site is full of caring people, and we are all here to support one another.

I'm sorry that you're also enduring what may be "occipital" neuralgia as well as well as TN. I am wondering, though, if you also have cervical spine problems, or sensitivity to light accompanying these symptoms.

Best of luck. Take care,

Stef

6

Stef,

The pain " behind your eyes" is typical of TN experienced in the middle branch of the distribution of the nerve. My wife experiences much the same. Although I've talked with a number of patients in whom trigeminal or occipital neuralgia have occurred at the same time as referred pain relating to structural issues in the cervical spine, medical literature doesn't generally associate the two, except in one rather general sense. Prolonged facial or head pain over a period of years appears to cause permanent changes in the central nervous system, which can make it hyper-sensitive to peripheral stimulus. Likewise, injury to the upper cervical spine can be associated with occipital neuralgia -- though not usually to face pain itself.

If the anti-convulsants and anti-seizure meds aren't helping you, or your pain includes a nearly constant, dull, achy, burning component, then some physicians might recommend that you be tried on a course of low-dose tricyclic antidepressants. These meds have a direct action on facial pain through a shared chemical channel that is also involved in depression. Often at doses below the range considered therapeutic for depression itself.

Go in Peace and Power

Red

Stef said:

.

Thanks again, Red, for sharing your wisdom. I also experience the type or path of pain, almost exactly as you have described, on an almost daily basis. However, now I have what may possibly be, the clinical name for this different monster.

Yes, I have all of the same symptoms you describe, except for the stabbing pain in the back of the head. When this happens, the stabbing pain is typically behind my eyes. It does, however, radiate to the back of my head and upper neck. I also have Scoliosis of the cervical spine with one slightly bulging disc and others that they say are arthritic.

I have wondered if this is related to TN, or not. Anti-seizure meds, unfortunately, do not take much of the edge off of any of my pain, yet I take them religiously, both Neurontin and Oxycarbamazipine, also a small dose of Cymbalta to push the Neurontin (as it was explained to me). I hear many reports that these meds are of great benefit to many sufferers. One thing I have learned from conversing with individuals with head and facial pain, is that what may not work for one, may be another's miracle. It is my experience that physicians have no problem prescribing such medications. The worst side effect, for me, at least, with anti-convulsants, is that they do make me drowsy (needing a cup of coffee right now, actually, to stay awake as I type).

Agreed, this site is full of caring people, and we are all here to support one another.

I'm sorry that you're also enduring what may be "occipital" neuralgia as well as well as TN. I am wondering, though, if you also have cervical spine problems, or sensitivity to light accompanying these symptoms.

Best of luck. Take care,

Stef

7

Yes I do have excrutiating Pain to going upp back and side's of musel's on neck and shooting pain presure up the back side's of my neck. Year's ago I injured my neck, also get tension headach between brow's almost every day.surgery for Thorasic Outlet Syndrome. Sometime's I would get pain going up ne side of my face. 2008 buring pain in cheek bone's in front of ear's and ear pain, also almost every day headach pain between brows. On antiseizure med's waiting on Pain Managment for Epadural on cervical spine.

8

Hi Donna,

I get that pain in the neck and back of head too. The stabs in the eyeball itself are most distressing for me, but the pain in the neck ears and back of head are more consistent than stabbing but the intensity rivals any other pain I know.

Often this pain then triggers the TN as well in the face, which is bilateral and together the two pains usually end me up in the ER.

My pain specialist said it's probably Occipital Neuralgia, but my Neurologist said it was not - so I have not been dx with anything as yet to cause that pain and for me it's been going on for years now. Very upsetting, but I'm on a waiting list for a new Neuro to get it sorted out.

My GP also has me getting x-rays of the cervical and lumbar spine to check for any abnormalities.

I am glad you find LWTN comforting, I do too - we have the best bunch of people here and I'm proud to be a member with all of you!

Best wishes for pain free day Donna!

Kerry xx

9

Met with the neurosurgeon and very disappointed as he did not do a very thorough examination and diagnosed me with vascular migraines. I have been taking migraine meds for a week now with no results whatsoever. My family dr wants to send me out of state to another neurosurgeon as he is not convinced I do not have TN. I’m at wits end, can’t deal with the pain and can’t deal with the aggravation and expense of trying to find the solution. Any ideas???

10

If you'll email me the State you're in through lawhern@hotmail.com, I'll look through my own and the TNA discussion archives and see if I can locate a well-regarded physician near enough to you for a second opinion.


Regards and best,

Red

Donna Mills said:

Met with the neurosurgeon and very disappointed as he did not do a very thorough examination and diagnosed me with vascular migraines. I have been taking migraine meds for a week now with no results whatsoever. My family dr wants to send me out of state to another neurosurgeon as he is not convinced I do not have TN. I'm at wits end, can't deal with the pain and can't deal with the aggravation and expense of trying to find the solution. Any ideas???
11

Hello everyone,

Met with Dr. Tew in Cincinnati on Monday of this week. He has confirmed that I have TN. I have another visit with him in 2 weeks and after another mri to see if MVD is possible. I feel very comfortable with what he is telling me. I am just so happy to be getting somewhere and seeing something positive happen to maybe finally get some relief. It took many channels and time to get to him which was aggravating to say the least.

Just wanted to share my hopefully good news with everyone.

I did want to ask if anyone is experiencing ear pain with their TN, he didn't have much to say when I said I have ear pain and it was one of those comments that was made as he was going out the door so I really didn't discuss it with him. I had my dr check for ear infection before and did not have have anything, he said it was due to the TN.

Hoping a pain free day for you.

Donna

12

I have ear pain with my TN. That is actually what lead to my diagnosis. I have complained of what I call "itchy ear" for years. My ENT didn't know what to do with it. I saw an ear specialist who just so happened to be married to a Neurologist. The two of them have given me new hope.

It took 6 years and 7 doctors of various fields to get a clear idea of what was going on in my head. I even had one tell me," its all in my head. " I told him he was the first doctor to even come close. Of course, I never told him I was a Psychologist. LOL

Good luck to you.



Donna Mills said:

Hello everyone,

Met with Dr. Tew in Cincinnati on Monday of this week. He has confirmed that I have TN. I have another visit with him in 2 weeks and after another mri to see if MVD is possible. I feel very comfortable with what he is telling me. I am just so happy to be getting somewhere and seeing something positive happen to maybe finally get some relief. It took many channels and time to get to him which was aggravating to say the least.

Just wanted to share my hopefully good news with everyone.

I did want to ask if anyone is experiencing ear pain with their TN, he didn't have much to say when I said I have ear pain and it was one of those comments that was made as he was going out the door so I really didn't discuss it with him. I had my dr check for ear infection before and did not have have anything, he said it was due to the TN.

Hoping a pain free day for you.

Donna

13

your pain in the eyes and in the back of the head could be occipital neuralgia. it could also be muscular spasm squeezing the occipital nerve, not necessarily a vascular compression. weird, but true. the surgeon can check it when you go in for MVD; ask him to do this.

good luck,

vesper