I'm not sure if I have occipital or Trigeminal - I have been taking Tegretrol as a mood stabilizer which now is doing double duty in terms of my pain management dr, and dermatologist and therapist "think" is going on. I'm at the point where I don't think these electric pains that shoot across my scalp will end. I woke up last night scratching or rather clawing my scalp.
I've taken Lyrica and it drove me crazy - Nortriptilyn (sp) which made me feel horrible, at least the only side effect of the Tegretrol is sleepiness throughout the day (which actually can be a problem since I am a teacher)
I am thinking of changing my neurologist because i honestly don't think he takes this seriously.
In the NYC area there should be a center, or hospital that treats the diagnosis and treatment of neuralgia.........
it's been 5 years and is slowly wearing me down..

Dear Glyde:

Welcome to NeuroTalk...

I'd like to do some sleuthing if you don't mind...I have some questions for you.

What kind of shampoo do you use? One with selenium in it, or zinc? Or Coal tar?

Do you know what antibiotics you used? Some cause nerve damage. (neuropathy).

Do these attacks follow bicycle days? Is your helmet tight, which may be compressing nerves in the scalp?

Have you had tests for B12 and Vit D? If not get your numbers, and see if either or both are low. Don't accept "normal" from your doctor because labs still report levels below 400pg/ml as normal and they are really LOW.

There are nutrients that help nerves heal. Major ones like Omega-3s are typically low in US diets, so increasing salmon, and other foods that provide these or taking fish oil (or Krill oil) will help with nerve repair. B12, folate and B6 are the other cofactors for this.

My first impression is that something you do or are exposed to is the culprit. Keeping a log/journal with food entries, activities and matching that up with when the pain attacks come may be helpful.

Your work/hobbies? Exposure to solvents, chemicals or pesticides?

Heat also can trigger nerves, esp when they are compressed or damaged. So don't stand for long periods under the hot shower.
Use luke warm water or keep your head and neck out of the stream of water if hot. Don't lie on a heating pad either. (this is tempting, but in the long run it flares nerve firing). A wise chiropractor educated me about heat and pain.

Have you tried ice compresses at the back of your neck? Do they help or make things worse?

[QUOTE=mrsD;1029311]Dear Glyde:

Welcome to NeuroTalk...

I'd like to do some sleuthing if you don't mind...I have some questions for you.

What kind of shampoo do you use? One with selenium in it, or zinc? Or Coal tar?

Do you know what antibiotics you used? Some cause nerve damage. (neuropathy).

Do these attacks follow bicycle days? Is your helmet tight, which may be compressing nerves in the scalp?

Have you had tests for B12 and Vit D? If not get your numbers, and see if either or both are low. Don't accept "normal" from your doctor because labs still report levels below 400pg/ml as normal and they are really LOW.

There are nutrients that help nerves heal. Major ones like Omega-3s are typically low in US diets, so increasing salmon, and other foods that provide these or taking fish oil (or Krill oil) will help with nerve repair. B12, folate and B6 are the other cofactors for this.

My first impression is that something you do or are exposed to is the culprit. Keeping a log/journal with food entries, activities and matching that up with when the pain attacks come may be helpful.

Your work/hobbies? Exposure to solvents, chemicals or pesticides?

Heat also can trigger nerves, esp when they are compressed or damaged. So don't stand for long periods under the hot shower.
Use luke warm water or keep your head and neck out of the stream of water if hot. Don't lie on a heating pad either. (this is tempting, but in the long run it flares nerve firing). A wise chiropractor educated me about heat and pain.

Have you tried ice compresses at the back of your neck? Do they help or make things worse?[/QUOt

Thanks for the reply - I haven't bicycled in a long time, I have spinal stenosis and am waiting for surgery in April of 2014. I have had a occipital nerve block a year ago and the symptoms went away for about 6 months - i had another in April of this year and no luck, symptoms remained, like needles being shoved into my scalp.
The antibiotic that the dermatologists put me on was Doryx- essentially for it's anti-inflammatory properties.
I have had the same sense that you have, that this condition is due to something in my environment, but I have had patch tests to check sensitivity to cosmetics, dyes etc in shampoo.
I've used every shampoo known to man and Amazon.com - I don't use any with the ingredients you mentioned.
I am concerned about sodium laural sulfate though and try to stay away from sulfates in general. I'm wondering if it is related to my using hair gel (alcohol free and hair spray - with alcohol, even though the patch tests were supposed to show sensitivity to these as well)
Last night i woke up scratching/clawing my scalp....this time was so bad that I left red, raw marks at the top of my forehead.....
the dermatologist says it's not dermatological, and the neurologists can't figure it out except to increase the dosage of Tegretrol to 900 mg a day.
Thank you so much for your response and concern

If the occipital block worked that one time, I wonder if you have tried lidocaine on the back of your neck?

This comes in compounded and manufactured tubes, and also in patches. I had a terrible time with meralgia paresthetica...this was a compressed nerve from the spine, which goes thru the abdomen and out under a ligament at the groin thigh area. It is sensory only. It was damaged from a C-section many years ago.
It went from numbness, odd sensations to stabbing breath taking PAIN. When the lidoderm patches came out, I tried those and applied where the nerve exits at the top of the thigh and lo and behold in 2 weeks of everyday use, the pain remitted...after many years! It is still in good shape today, unless I expose it to heat, as in a hot bath, or steam room. I get warning twinges then and so I avoid all heat and things are livable for me. It seems so simple, and I guess I was lucky.

There is another thing you can try... because some stabbing nerve pain is ischemic in nature. That is to apply topical magnesium in the form of a lotion to the back of your neck once or twice a day. This is a new product and I use it for tense muscles and foot neuropathy. It even is lowering my hypertension! (the magnesium is absorbed). Magnesium is a NMDA pain receptor antagonist, and blocks pain signals. It opposes calcium at this receptor.

This is the product...very inexpensive and simple to use.
http://www.mortonsalt.com/for-your-h...-epsom-lotion/

It is not everywhere yet. WalMarts has it, and now I hear Walgreens is starting to carry it. It is also online at Amazon.
This product is rather miraculous and a worth a try for you.
Magnesium opens circulation by relaxing smooth muscle in the arteries. It will relax skeletal muscle, too and is good for cramping. But its pain relieving actions are fabulous. I have many people on NT here using it. It costs $5.98 at WalMart.

MSG in food is to be avoided by people with nerve pain. Watch the ingredients in your food. Monosodium Glutamate, stimulates that NMDA pain receptor.

Other foods that may cause burning or nerve pain, are the nightshade vegetables. The peppers, potato and tomatoes all contain an alkaloid called solanine, which can set off sensory problems. Tomatoes especially also are histamine stimulants...and histamine causes burning, tingling in many people. Check your diet for these and
do without for at least 2 weeks and see if your attacks lessen.

If you take an ACE inhibitor for blood pressure? Please tell me.
These release bradykinin which is very difficult to remove and some people have a genetic error and can not get rid of it. It will cause burning and itching and pain anywhere in the skin.
Also another drug family are the statins, for lowering cholesterol.
These drugs have recently been found to damage neurons. I have photos of this damage on the PN forum right now:
http://neurotalk.psychcentral.com/thread197080.html
Research is showing that statins are not safe in any way, and actually kill cells over time. This damage seems specific to people and differs quite a bit...but can affect any place in the body.

Your Doryx is not known for causing neuropathy, but it may cause Candida (yeast) overgrowth, as a side effect.
Have you tried Nizoral shampoo? It will take care of Candida of the scalp.

I have no idea what is going on other than the bicycle accident was in July 2008 and this "itch" these electric jolts as if someone were sticking pins into my head and not "ice pick" headaches as one of the doctors I've seen is convinced and will not budge from her diagnosis and her conviction that I should be able to take nortriptyline "if you give your body the chance it will adjust to any and every medication" I know how I feel taking nortriptyline, and I have gamely tried to increase the dosage and my body just doesn't tolerate it.....
Dermatologists say it's not skin related...and neurologists don't seem to care enough to find out just what is going on.........
I'm going back to sleep...
thanks to all of you who have expressed concern...

I am sorry you are so discouraged. Our Peripheral Neuropathy forum is very familiar with medical failure in helping nerve pain.
I am usually over at our PN forum, and we have learned many interventions that doctors will not offer to patients.

Your Tegretol is contributing to your fatigue, so it is understandable that you are fed up and tired.

If and when you feel like it, you are welcome to our PN forum and subforum, to learn what we have learned over the years.
We have learned to be our own medical detectives.

http://neurotalk.psychcentral.com/forum20.html
http://neurotalk.psychcentral.com/forum119.html

help...i lost my most recent post and can't find it!!

Try here:
http://neurotalk.psychcentral.com/post1031180-15.html

If you click on your name you will find your profile.
You can click on the name in the upper right hand corner where it says "welcome".

In your profile is a tab "statistics"... and click on that and all your
posts up to 500 will be listed.

I recently developed neuropathy in my feet and I went to a podiatrist who to my shock feels it is related to the damage done to my TN nerve likely via the dentist. More than I can cope with emotionally at this moment.

I spend my time putting out neuro "fires" these days...face and feet. I've got my B12 and D3 optimized and willing to learn more.

I'm pleased with the creams I am using: RX cream for that g a w d awful TN pain and over the counter Karasal Neurocream for my feet.

I might have that neuro stim testing... Yuck!

Vowel Lady,

Sorry to hear that you are going through such a tough time. It is surprising to hear that the neuropathy in your feet is directly related to the TN and the dentist.

Keep me updated on how you are doing