[notsureyet]

Hi all,

I recently saw a neurologist because I've been having pains around the back of my head. Lately they've been occuring more on the right side than the left, but I've had them numerous places and of all durations. I also feel a sensativity on the top of my head as well that is uncomfortable.

My question is whether or not those diagnosed with Occipital Neuralgia all have pain that radiates from the base of the neck spreading upward. For me the pains just come out of the blue, hurt for a little while, and then go away.

All of the bad stuff has been ruled out with an MRI so my doctor doesn't know what's wrong. This is his best guess and I'm supposed to get a shot to see if that helps.

Can anyone who has been diagnosed by a doctor with Occipital Neuralgia please let me know what their symptoms are like?

Thanks!

[Peter B]

The spine, especially the cervical part, is a wonderful source of a variety of pains and troubles.
While we tend to think the worst when something unexplained starts to occur, I think you'll find that most odd pains, twinges etc are simply the result of stresses that we are applying-i.e. lifestyle- and simple remedies should be the first treatment.
How do you treat your neck? Lots of computer/ electronic device use? Lying on a couch or slumping in a chair? Think about how you might be putting your neck under strain, and see what you can do to ease off a bit.
Your pillow may not be offering good support, and the good ones are not cheap but do a wonderful job. Mine cost over $200, but you would need to spend at least half that I'd say.
General muscle tension and life stresses can be a major cause of spinal problems, and virtually everybody suffers at one time or another.
Look at your lifestyle, and perhaps see a physio for a spine checkup, and consider a remedial or sports massage to sort your muscles out.
Should do the trick.

[windrivermaiden]

Originally Posted by Peter B

The spine, especially the cervical part, is a wonderful source of a variety of pains and troubles.
While we tend to think the worst when something unexplained starts to occur, I think you'll find that most odd pains, twinges etc are simply the result of stresses that we are applying-i.e. lifestyle- and simple remedies should be the first treatment.
How do you treat your neck? Lots of computer/ electronic device use? Lying on a couch or slumping in a chair? Think about how you might be putting your neck under strain, and see what you can do to ease off a bit.
Your pillow may not be offering good support, and the good ones are not cheap but do a wonderful job. Mine cost over $200, but you would need to spend at least half that I'd say.
General muscle tension and life stresses can be a major cause of spinal problems, and virtually everybody suffers at one time or another.
Look at your lifestyle, and perhaps see a physio for a spine checkup, and consider a remedial or sports massage to sort your muscles out.
Should do the trick.

Spoken like a person who has not dealt with any of the cranial neuralgias. As if they respond to a different pillow, massage or lifestyle changes.

[Peter B]

Originally Posted by windrivermaiden

Spoken like a person who has not dealt with any of the cranial neuralgias. As if they respond to a different pillow, massage or lifestyle changes.

How about for the last 30 years or so???
Speaking from experience. I believe it helps to have a broader outlook when dealing with these tricky health issues.
So many problems have the same or similar symptoms, so you won't know what works until you try it.
I hope you are getting good treatment.

[windrivermaiden]

Originally Posted by Peter B

How about for the last 30 years or so???
Speaking from experience. I believe it helps to have a broader outlook when dealing with these tricky health issues.
So many problems have the same or similar symptoms, so you won't know what works until you try it.
I hope you are getting good treatment.

Treatment has been hit or miss.
23.5 years and counting. I think my outlook has been really broad, including but not limited to changing pillows, doing Physical therapy, accupressure, accupuncture. pills, surgery, Botox, blah, blah, blah, blah blah and the like. It is a real disservice to tell people who are facing a life time of pain that a simple pillow change is going to be salvation, that is what people are looking for when the come to the forums, salvation from pain. They want hope. Each treatment failure snatches away hope. It is better I think, to be pretty blunt about it. That treatment is hit or miss. That a person with cranial neuralgias are in for a very long hard haul. Why sugar coat it. It is what it is. Miserable. Yeah, maybe a different pillow will help. Maybe if one thinks enough good thoughts or prays hardenough, that will help, I think mostly a placebo effect.

People, if you have been diagnosed with a cranial neuralgia. IT SUCKS! Plain and simple. You are going to have to change your acceptance of pain to a new normal. and be ready to explain over and over and over that what is severe pain to the general population is just ordinary pain for you. And you'll have to explain that to the experts in the field who think that they have seen every thing.

What used to be your threshold of "10=kill me now" before your neuralgia might be a good day in your new world. Drug choices don't work for everyone equally, what works for your sister, brother, neighbor, someone you met on line who found salvation with X drug, may not even phase your pain.

I don't say that out of cruelty, but experience. This is not easy. Its not fun. There are no easy answers or quick relief. Most of the relief comes from mental adjustment to the new normal. I can't sit here and say...oh just take this pill or that one...or change this in your life and it will all be better. It probably won't.

I lead a pretty dang good life. but my pain is by no means controlled by the meds and my routine. I am willing at anytime to switch it up in search of a new hope.

[JVerive]

Originally Posted by notsureyet

Hi all,

I recently saw a neurologist because I've been having pains around the back of my head. Lately they've been occuring more on the right side than the left, but I've had them numerous places and of all durations. I also feel a sensativity on the top of my head as well that is uncomfortable.

My question is whether or not those diagnosed with Occipital Neuralgia all have pain that radiates from the base of the neck spreading upward. For me the pains just come out of the blue, hurt for a little while, and then go away.

All of the bad stuff has been ruled out with an MRI so my doctor doesn't know what's wrong. This is his best guess and I'm supposed to get a shot to see if that helps.

Can anyone who has been diagnosed by a doctor with Occipital Neuralgia please let me know what their symptoms are like?

Thanks!

My Occipital Neuralgia (ON) pain starts at the back of my head and shoots toward the top of the head, along the trajectory of the greater occipital nerve (on which I have had surgeries to remove neuromas.)

Most ON sufferers have pain just on one side of the head (unilateral,) but some experience pain on both sides (bilateral.) Nerve blocks may help, and are useful in diagnosing ON, but they usually offer just temporary relief (hours to days.) Still, some people get weeks to months of relief from these shots, and they are generally very low risk, so it is usually worth the time and effort to try them.

Best of luck!

[fedup76]

My pain is typically on the right side just behind the ear and around that area. What I experience is "knife stabbing" pain every 30 seconds to a minute. The pain is absolutely excruciating. The bout lasts anywhere from 3-10 days. It is the most awful thing to go through. As well the right side of my face is very sensitive during this time. When I was diagnosed, I was told that there are no "tests" that can diagnose this, it is diagnosed solely through symptoms. I'm not sure if things have changed now though. It's something that to my knowledge doesn't have a cure and is something I have to live with for the rest of my life. Fortunately, the bouts come randomly, about once a year, although this year I have had it twice already. I wish you luck.

[JVerive]

A positive response to a nerve block is generally considered to be diagnostic for a given neuralgia, but a negative response doesn't rule out neuralgia. In many (most?) cases of neuralgia, diagnosis is made by considering the characteristics of the pain and then ruling out known diseases/disorders. This is especially true if imaging studies (X-Ray, CT, MRI, etc.) are inconclusive.

I wish you all good luck. My occipital neuralgia is currently being "controlled" by duloxetine (Cymbalta,) which is to say that the severe stabbing attacks are very infrequent. There is a constant pain of about 3 - 4 on a pain scale from 0 (no pain) to 10 (worst pain imaginable,) with occasional pain excursions to 7 - 8 every other day or so. My pain management is not great, but it's MUCH better than the knife pain / electrical shock episodes that used to occur several times a day.

Originally Posted by fedup76

My pain is typically on the right side just behind the ear and around that area. What I experience is "knife stabbing" pain every 30 seconds to a minute. The pain is absolutely excruciating. The bout lasts anywhere from 3-10 days. It is the most awful thing to go through. As well the right side of my face is very sensitive during this time. When I was diagnosed, I was told that there are no "tests" that can diagnose this, it is diagnosed solely through symptoms. I'm not sure if things have changed now though. It's something that to my knowledge doesn't have a cure and is something I have to live with for the rest of my life. Fortunately, the bouts come randomly, about once a year, although this year I have had it twice already. I wish you luck.

[nholecek]

I have the ON on the left side of my head and have just started on Topiramate. I've tried Amitriptyline - didn't help; but was given Apap/Tramadyl for the pain. Then they tried Lyrica - that was BAD! had to stop when I started the 2nd pill. Then was put on Gapapentin. I was told to still use that but to decrease it as I increase the Topiramate. But thank God I have alot of leave as all I want to do is sleep and it all makes me feel crappy.

Back in March they injected a steroid concoction which didn't do much but maybe helped alittle. I went back in May and they tried an injection in the top of my head where I was having severe pain - by the end of the night I thought I was going to have to go to the ER the pain was so much worse - I just kept taking pain pills, took about 3 days to ease up!

I'm keeping my fingers crossed that the Topiramate will work!

[Mist8012]

I am new to the dx of occipital Neuralgia but not the pain.

Neuro put me on Amitriptyline as well at night and I woke up this morning at 4am with pain. Does this drug take a while to work? I haven't been on it a week yet.

Hope everyone is doing well