[Glyde 11209]

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" (how can this be true?) 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...

[mrsD]

I am relieved that you have decided to post here too.

I am going to link to your thread, so others here can see my suggestions and responses.

Glyde's posts begin at post count #7.

http://neurotalk.psychcentral.com/thread194501.html

All of us here have slowly learned to become our own detectives.
Neurologists are quite limited and only work from their therapeutic books, some of which may be out of date, and are quite conservative given their high liability insurance rates.

Another option for you if you really want a DOCTOR ...would be a sports physician, preferrably one who helps with bicycle injuries.

Here is a link to diagrams of the nerves in the head.
http://www.netterimages.com/image/7274.htm
First off it would be helpful if you can point to exactly where you
get these spells of stabbing/itching/burning pain.

I've been thinking about you quite a bit, over the past few days.
I really think you had some compressive injury involving your helmet when you had your accident.
If some nerves were crushed, they wouldn't start immediately to fire erratically until they started to regrow back. Peripheral nerves do grow back and often send mixed up or useless signals as a result.

So I think you should keep a journal, with when these happen.
For example, only at night? when you wear hats or caps? Only after certain foods? Only after you shampoo? Only after you apply hair gels/creams?

I'd really stop the gels for now that you mentioned as they are high in alcohol, and alcohol irritates nerve endings big time.

There are dietary interventions we use here to quiet nerves. Supplements, and other things that may provide some comfort for you. Ice treatments do quiet firing quite a bit, whereas heat can stimulate pain firing. If your pain events are at night, with you applying pressure to your head on the pillows, then that would suggest, compression problems. There are cold caps that chemo patients wear to cool the head during chemotherapy. Some are less expensive than others. A simple gel ice pack may work as an
experiment.

If you are low in magnesium, like the 70% rest of the U.S., you can provide it orally or in a lotion topically to help antagonize the pain receptors. (they are called NMDA receptors). MSG in foods stimulate these pain receptors, so avoiding it is important.

Chronic application of steroids to the skin, change the composition of the skin and thin it, and may have accidentally iritated your nerve endings more.
The scalp is highly vascular and with lots of nerves in order to
nourish the hair follicles.

I myself use magnets for pain, at night, often. And if necessary I can guide you to inexpensive strong magnets to try. Magnets applied carefully block the flow of ions into nerve cells, much like lidocaine does. So then the pain signals are blocked off. I usually leave this for last, as other things often work most of the time for people. (I have a thread here on magnets).

[Glyde 11209]

Originally Posted by mrsD

I am relieved that you have decided to post here too.

I am going to link to your thread, so others here can see my suggestions and responses.

Glyde's posts begin at post count #7.



All of us here have slowly learned to become our own detectives.
Neurologists are quite limited and only work from their therapeutic books, some of which may be out of date, and are quite conservative given their high liability insurance rates.

Another option for you if you really want a DOCTOR ...would be a sports physician, preferrably one who helps with bicycle injuries.

Here is a link to diagrams of the nerves in the head.

First off it would be helpful if you can point to exactly where you
get these spells of stabbing/itching/burning pain.

I've been thinking about you quite a bit, over the past few days.
I really think you had some compressive injury involving your helmet when you had your accident.
If some nerves were crushed, they wouldn't start immediately to fire erratically until they started to regrow back. Peripheral nerves do grow back and often send mixed up or useless signals as a result.

So I think you should keep a journal, with when these happen.
For example, only at night? when you wear hats or caps? Only after certain foods? Only after you shampoo? Only after you apply hair gels/creams?

I'd really stop the gels for now that you mentioned as they are high in alcohol, and alcohol irritates nerve endings big time.

There are dietary interventions we use here to quiet nerves. Supplements, and other things that may provide some comfort for you. Ice treatments do quiet firing quite a bit, whereas heat can stimulate pain firing. If your pain events are at night, with you applying pressure to your head on the pillows, then that would suggest, compression problems. There are cold caps that chemo patients wear to cool the head during chemotherapy. Some are less expensive than others. A simple gel ice pack may work as an
experiment.

If you are low in magnesium, like the 70% rest of the U.S., you can provide it orally or in a lotion topically to help antagonize the pain receptors. (they are called NMDA receptors). MSG in foods stimulate these pain receptors, so avoiding it is important.

Chronic application of steroids to the skin, change the composition of the skin and thin it, and may have accidentally iritated your nerve endings more.
The scalp is highly vascular and with lots of nerves in order to
nourish the hair follicles.

I myself use magnets for pain, at night, often. And if necessary I can guide you to inexpensive strong magnets to try. Magnets applied carefully block the flow of ions into nerve cells, much like lidocaine does. So then the pain signals are blocked off. I usually leave this for last, as other things often work most of the time for people. (I have a thread here on magnets).

Reply:
Thank you so much for your response, I am using ANECREAM (lidocaine 4%) cream on my neck as you suggested, but it's to early to tell.
I am aware of the steroids potentially harming the skin and try not to use even the topical solution the doctors gave me, but t times I have to use then to "put the fire out".
I have been given shots of magnesium by my migraine specialist (the one who is convinced that these are "ice pick" headaches) and haven't really noticed any change.
The one thing that has actually effected a change was an occipital nerve block one year ago, and as i mentioned, the relief lasted until April (roughly 6 months)
I have cut back on the Tegretrol from 900 mg to 600 mg per day because i was yawning while I was teaching.
I woke up again recently during a "clawing attack" , it seems that something is setting off these attacks while i sleep, other times are seemingly random, the
wind when i walk outside, going from a warm room to the cold outdoors,
one situation that seems to be a constant is after shampooing and brushing my hair (which is thinning out considerably since the onset of this entire situation in 2008)
Strangely enough when i have been in London for two weeks I had relief from all of this (August 2009, 2010), this leads me to almost think that this is all psychosomatic......but it's not.
I'm wondering what to ask my neurologist the next time I see him - he is convinced that it's origins are in the lower brain stem, and are probably due to trigeminal neuralgia - but I'm not sure because he never really gives me a diagnosis.
I am planning to ask him to have me get an MRI - but then again I don't want to play Doctor and have no idea if an MRI will turn anything up....
I've really had it with all the medications, creams, lotions, topical solutions etc

Thank you for responding with all of the information you have already, it's so much more than any Doctor has given me, and with more concern and empathy.
Thank you again..

[mrsD]

Different food....I betcha in London. Food can be a real trigger.
Think back to what was different there. Did you eat more fish there? Fish provides Omega-3's which heal nerves. Most Americans don't eat enough Omega-3's on a daily basis and have many problems as a result. Fewer tomatoes in London?

The nightshade family (tomatoes, potatoes, peppers including hot sauces etc, eggplant) especially can really cause problems! I have that. I think I mentioned those.

Picture your scalp as a thin tissue with nerves running all thru it.
Then WHAM you hit your head in the bicycle accident. What are the nerves to do, being crushed against the helmet straps and the bones in the head? The back of the neck can be really a source for many headache symptoms and pain. You could have a form of whiplash there. That is why the lidocaine worked.

Look at the difference between a football helmet and your bike helmet. They are very different.

At night you are lying down and putting pressure on your head. Even with a pillow. Then that part of the head heats up, temp wise and as it heats up then the nerves may wake up and start to fire. Also at night in your body, your circadian rhythm of cortisol production falls as 4 am approaches. This is the lowest time of the 24 hr day. So any inflammatory thing going on with you (and many PNers have worse pain at night), starts up.
Have you tried an ice treatment on the back of the neck and head before bedtime? Every day, say for a week. If this works, it would tell you something. If it doesn't, then you move on to another experiment.

One experiment many of us do is the AlkaSeltzer trial.
If you can use aspirin, try taking one dose (2 tablets in a pack), before bed. AlkaSeltzer original formula with aspirin, blocks both histamine receptors (the bicarb blast) and the aspirin will provide some anti-inflammatory action which is very very fast. The aspirin in Alka Seltzer is very quickly absorbed once your swallow it--it is in solution, and blasts into your blood stream and blocks burning, stabbing pain better than tablets of aspirin. It is somehow because of the effervescent delivery. It is easy and worth a try, if there is no contraindication for you about aspirin.
This works for some of us, and not others. I've found it very good for "attack" type pain. But some people here don't get the same effects. I use the WalMart version of AlkaSeltzer and it is very inexpensive! And I don't use it every day either.
If you are game, try it at bedtime, followed with some more water, to protect your stomach, each night for 7 days, and see if the attacks lessen or stop then. That will tell you about histamine effects and inflammation's roles.

Your medication, Tegretol, is good over the short haul, but carries substantial toxicity over time. Most people end up not using it anymore. It is the first line drug doctors use for trigeminal neuralgia or stabbing intermittent pain. So while it may work now, you might not last long on it over time. And it is very sedating too. This is why gabapentin is pushed more often, as it is less toxic over time.

But I think you can find a way to lessen your attacks with some attention paid to lifestyle, food, and some supplements. We'll get to those later.

[mrsD]

When you were in London, you were NOT at work.

Are you exposed to some organic solvents like mineral spirits, or
xylol, or acetone (cleaners) at work? Or some kind of "dust" from working with tools?

Have you tried to cut back on washing your hair?
Do you blow dry afterwards? Try changing your routine. Say, drop the brushing (this pulls on the hair follicles). There are combs with very wide teeth out there to reduce pulling the hair.
https://www.google.com/search?q=wide...iw=981&bih=662

I looked up severe scalp pain, and found one medical answer that is temporal arteritis or vasculitis. This is an autoimmune disease where the blood vessels supplying the scalp become inflamed.
Hemoglobin may be low, serum alkaline phosphatase is increased, sedimentation rate and C reactive protein are raised in this illness. Were you ever evaluated with tests for this?
Most Dermatologists and neurologists don't deal with this type of problem. Your regular doctor can test you for this possibility.

Also a fungus can be a culprit. Long term use of steroids can result in a scalp fungus. Nizoral typically is used for that, in a shampoo. Excessive washing of the hair and blow drying will enhance fungus if it is there.
This link explains severe scalp fungus may cause pain:
http://www.mayoclinic.com/health/rin...=complications

This is a general article on the topic of scalp pain.
http://www.wisegeek.com/what-are-the...scalp-pain.htm

I do not believe your issues are psychosomatic. So don't worry about that.

I'll give you this little story...to illustrate how a small thing can cause massive pain!. Long ago when nitroglycerin was only used in bombs, and dynamite, the factory workers who made it developed a mysterious illness. They would work M-F, and be off Sat and Sun. The next Monday they would return to work and within a short period of time would develop blindingly severe headaches. After much investigation, it was found that their hats they wore absorbed the nitro, into the bands. Then the workers would absorb from the hatbands, the nitro into their bodies. They would develop a tolerance to this during the week, (nitroglycerin causes a rapid tolerance and that is why it is not used much anymore as a chronic medicine for the heart). Over the weekend their bodies removed the drug, and Monday it would start all over again. This led to nitro being used as a cardiac and vasodilator for many decades. Today is is mostly used for angina attacks and daily use is much less common because of the tolerance factor. But this story illustrates how an invisible factor in the environment can work to cause tremendous pain and grief.
Nitroglycerine can cause severe headaches, but they go away as the tolerance develops.

So I do believe there is something in your environment triggering your symptoms. You just have to be patient to find that answer.

[Glyde 11209]

When you were in London, you were NOT at work.

Are you exposed to some organic solvents like mineral spirits, or
xylol, or acetone (cleaners) at work? Or some kind of "dust" from working with tools?

Have you tried to cut back on washing your hair?
Do you blow dry afterwards? Try changing your routine. Say, drop the brushing (this pulls on the hair follicles). There are combs with very wide teeth out there to reduce pulling the hair.


I looked up severe scalp pain, and found one medical answer that is temporal arteritis or vasculitis. This is an autoimmune disease where the blood vessels supplying the scalp become inflamed.
Hemoglobin may be low, serum alkaline phosphatase is increased, sedimentation rate and C reactive protein are raised in this illness. Were you ever evaluated with tests for this?
Most Dermatologists and neurologists don't deal with this type of problem. Your regular doctor can test you for this possibility.

Also a fungus can be a culprit. Long term use of steroids can result in a scalp fungus. Nizoral typically is used for that, in a shampoo. Excessive washing of the hair and blow drying will enhance fungus if it is there.
This link explains severe scalp fungus may cause pain:


This is a general article on the topic of scalp pain.


I do not believe your issues are psychosomatic. So don't worry about that.

I'll give you this little story...to illustrate how a small thing can cause massive pain!. Long ago when nitroglycerin was only used in bombs, and dynamite, the factory workers who made it developed a mysterious illness. They would work M-F, and be off Sat and Sun. The next Monday they would return to work and within a short period of time would develop blindingly severe headaches. After much investigation, it was found that their hats they wore absorbed the nitro, into the bands. Then the workers would absorb from the hatbands, the nitro into their bodies. They would develop a tolerance to this during the week, (nitroglycerin causes a rapid tolerance and that is why it is not used much anymore as a chronic medicine for the heart). Over the weekend their bodies removed the drug, and Monday it would start all over again. This led to nitro being used as a cardiac and vasodilator for many decades. Today is is mostly used for angina attacks and daily use is much less common because of the tolerance factor. But this story illustrates how an invisible factor in the environment can work to cause tremendous pain and grief.
Nitroglycerine can cause severe headaches, but they go away as the tolerance develops.

So I do believe there is something in your environment triggering your symptoms. You just have to be patient to find that answer.[/QUOTE]



Thank you so much for your suggestions. I am a teacher and have worked in this building with more or less the same environmental conditions since 2007 - I had the bicycle accident in July of 2008 and the sharp burning pains started in September, This makes sense of what you said about the pain starting as the effected nerves grow back.
I am going to my dermatologist today to have my skin checked ( I have had two basil melanoma's since 2006.
I want to go over the information you have provided with him, especially blood tests for temporal arteritis or vasculitis.
I have been using Nizoral 2% shampoo since the scalp issue began in 2008.
It is one of many different topical creams, lotions, shampoos that I have tried over these past 5 years.
I can't quite pinpoint any environmental factors that might be contributing to all of this. I do know that I was pain free and my hair and scalp were not issues in London (which leads me to think that the lack of normal everyday stress as a teacher may be the key). Having said this, I keep going back to the timing - this started right after I had the accident, broke my jaw, had it wired shut, and started extensive dental work, ie: root canal and crown work.
there ust seems to be so many possibilities - and the longer this persists the more I go into a shell.

[icelander]

Originally Posted by mrsD

I am relieved that you have decided to post here too.

I am going to link to your thread, so others here can see my suggestions and responses.

Glyde's posts begin at post count #7.

http://neurotalk.psychcentral.com/thread194501.html

All of us here have slowly learned to become our own detectives.
Neurologists are quite limited and only work from their therapeutic books, some of which may be out of date, and are quite conservative given their high liability insurance rates.

Another option for you if you really want a DOCTOR ...would be a sports physician, preferrably one who helps with bicycle injuries.

Here is a link to diagrams of the nerves in the head.
http://www.netterimages.com/image/7274.htm
First off it would be helpful if you can point to exactly where you
get these spells of stabbing/itching/burning pain.

I've been thinking about you quite a bit, over the past few days.
I really think you had some compressive injury involving your helmet when you had your accident.
If some nerves were crushed, they wouldn't start immediately to fire erratically until they started to regrow back. Peripheral nerves do grow back and often send mixed up or useless signals as a result.

So I think you should keep a journal, with when these happen.
For example, only at night? when you wear hats or caps? Only after certain foods? Only after you shampoo? Only after you apply hair gels/creams?

I'd really stop the gels for now that you mentioned as they are high in alcohol, and alcohol irritates nerve endings big time.

There are dietary interventions we use here to quiet nerves. Supplements, and other things that may provide some comfort for you. Ice treatments do quiet firing quite a bit, whereas heat can stimulate pain firing. If your pain events are at night, with you applying pressure to your head on the pillows, then that would suggest, compression problems. There are cold caps that chemo patients wear to cool the head during chemotherapy. Some are less expensive than others. A simple gel ice pack may work as an
experiment.

If you are low in magnesium, like the 70% rest of the U.S., you can provide it orally or in a lotion topically to help antagonize the pain receptors. (they are called NMDA receptors). MSG in foods stimulate these pain receptors, so avoiding it is important.

Chronic application of steroids to the skin, change the composition of the skin and thin it, and may have accidentally iritated your nerve endings more.
The scalp is highly vascular and with lots of nerves in order to
nourish the hair follicles.

I myself use magnets for pain, at night, often. And if necessary I can guide you to inexpensive strong magnets to try. Magnets applied carefully block the flow of ions into nerve cells, much like lidocaine does. So then the pain signals are blocked off. I usually leave this for last, as other things often work most of the time for people. (I have a thread here on magnets).

Thanks for the reminder on the magnets. I just ordered them. They are so inexpensive. That's a plus.

[Glyde 11209]

Originally Posted by icelander

Thanks for the reminder on the magnets. I just ordered them. They are so inexpensive. That's a plus.

I would like to get some information about magnets - you have mentioned them a few times and I have been to enough doctors.

[mrsD]

Originally Posted by Glyde 11209

I would like to get some information about magnets - you have mentioned them a few times and I have been to enough doctors.

I have posted my magnet information for years here. They are very useful, but require some care in their use. Some people are tempermentally not suited to using them safely.

But if you feel you could follow the warnings, and store them safely away from children and pets, they can be very helpful.
I use my two pads, that I made myself every night. I find I only need them for 20minutes or so...because I used very high gauss neodymium types--one inch in diameter.

This is my thread:
Using Magnets for Pain

Amazon sells plastic coated ones now, and those are helpful for
spot applications. They may be best for your purposes.

Right now Amazon seems to not have the coated ones...but Ebay has these:
1 Pieces of 1x1 8 inch Grade N42 RARE Earth Neodymium Disc Magnet Epoxy Coated | eBay

I also have these at home:
3 4"x 1 8" Disc Red Green Plastic Coated Neodymium RARE Earth | eBay

What the magnets do is change the flux of ions across the nerve membranes that carry pain signals. Much the same way that lidocaine does. (without the numbing).

You would use plastic medical tape (like NexCare) to apply the magnet to the skin. You don't have to wear it/them all day and night, as they are very strong and seem to block pain signals for a while when you take them off.

You need to study an anatomical diagram of where the nerves are that go up the back of your scalp. Sometimes you have to move a magnet around to find the "sweet spot" where it works best for your specific need. They have 2 poles, S and N, and if one pole does not help or increases sensations, you just flip to the other for the calming of sensations. The red and green ones are handy for remembering the poles. I have some little ones with dots on them, which I use to mark new magnets when I get them. The dot is designed to go towards the skin.

If you buy raw metal versions of the one inch neos, you have to cover the side the metal goes towards the skin, because you may get a "magnet burn" otherwise. I just put the tape on both sides. I made my pads from knitting needle covers, and sewed them in tightly because they are so strong they will not lie flat.
(I put heavy nylon stays in with them so they are bendable but do not snick together by themselves.

All this sounds like a lot of work, but once you get the hang of them, they can be truly very helpful. Another poster here, Brian uses them too. But he doesn't post here that much anymore.

I am always here if you have further questions, etc.
Be aware that some of the links on my old thread may be inactive.
The two Ebay offers I have on this post are active today.

[Glyde 11209]

I woke up clawing my scalp again last night - I wonder if this has anything to do with the airconditioner that I've been using for about the same number of days...
I often get jolts of pain from differences in temperature, and from wind ........

I wonder if it's time to go to a different neuroogist, this last one gave me Baclofen, then a lidocaine topical creme - and a appointment for September.
I can't wait until September with this (It's been since 2008)
the shooting, stabbing pains in my ears are starting up as well, which just leads to overall discomfort(?)
His view on this is that I have ice pick headaches, although he has referred to this as a neuralgia as well.
"It won't kill you, and will only be painful from time to time.
then a story about how a patint of his in Poland was hit in the head during a mine accident and had major neurological problems as a result, while another man right next o him merely suffered a temporary headache.
the point I think being - it's a mystery how these things happen and often times almost impossible to track down and treat.....
I get it, but do not like the cavalier attitude.....