[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Neurologists are quite limited and only work from their therapeutic books, some of which may be out of date, and are quite conservative given their high liability insurance rates.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.

[mrsD]

Okay, if you get blood drawn for testing, then ask also for
B12 and Vit D.

Your B12 should be at 400pg/ml or more, and not below. Labs still report low numbers as "normal".

The Vit D if low can contribute to pain states. Many of our PNers improve when Vit D is brought up to normal levels. Many people can be down in the single digits on this one...it is very common to be very low and have mysterious problems.

Here is the new B12 video with medical interviews:
http://www.youtube.com/watch?v=BvEiz...ature=youtu.be

If you are marginal or low, and suffer nerve damage, then healing cannot take place in the same way it would if you were normal or above with B12. Most doctors are not up to date on B12 treatment or needs. Here is a medical link made for those doctors from American Family Physician:
http://www.aafp.org/afp/2003/0301/p979.html
(notice it is 10 yrs old now this topic!)

[Glyde 11209]

I went to my Dermatologist yesterday and he re[affirmed that any redness of my scalp and/or hair loss (which he agrees is happening) is a result of my "clawing" during the night.
He is convinced that this is a neurological situation.
He did however, order blood work to test for the conditions you mentioned:
temporal arteritis or vasculitis.
He think's it's unlikely - and was very surprised that the neurologist(s) haven't had this blood work done.
I told him about using Lidicaine 4% on the back of my neck, he questions this because he feels that something topical kike this wold not find it's way down to a brain stem issue (trigeminal nerve).
I have started to take a magneium supplement and will ask my migraine/neurologist for a shot of magnesium (a practice she advocates for migraine relief)
I'm also taking a supplement called "Complete Omega 3.6.9."
In addition, I have started again using "Integrative Therapeutics Petadolex," which contains "extract of butterbur (Petasites hybridus)"
I have no idea if any of these things work, I have over the past 5 years since the onset of these "attacks" used butterbur and Omega 3,6,9, and periodically gone off them as well thinking that they really have no effect.
Last night I used a cold pack on my neck as I went to sleep, and opened a window to cool off the room a bit (I live in an apartment building that is radiator heated and at times gets dry and way to hot.
I'm trying -
On another but related note, the hair loss may be related to a surgery i had this summer (in July). I had scheduled surgery for spinal stenosis and had to get a "cardio clearance" before hand. My cardiologist found 99% blockage in a carotid artery,
I was told that my back might hurt, but this condition could kill me.
My dermatologist thinks that a condition known as telegin efflivium.
I do see the migraine doctor, and my neurologist next week and I think that an MRI might be in order?
And thank you for all of your help, it feels much better to be discussing this and potentially doing something about it.....

[mrsD]

This is a further explanation for your hair loss diagnosis.

http://www.webmd.com/skin-problems-a...oss/effluviums

Have you had that carotid artery fixed? This could be the source of your attacks. There is an internal and external carotid branch.

These are various images:
https://www.google.com/search?q=exte...iw=981&bih=662

This path is very close to the trigeminal nerves as well.

You are young to have a completely blocked carotid. Is this the side of your head that you hit when you had your bike accident?

If your pain is ischemic (blocked blood flow)...then using ice would not be a good idea.
I wish you had told me this in the beginning. I'd stop the ice for now....and just do the magnesium and the lidocaine.

What supplement did you buy? I hope it is not Oxide form. That does not get absorbed from the GI tract.
SlowMag would be best for and easiest for you. It is available at WalMart for a reasonable price.

This is their website:
http://www.slowmag.com/

If you read that website it will explain why some magnesium oral supplements do not get absorbed as well as others.

If you get injections IV of mag, do stop your oral versions.
The RDA for adults is around 380mg a day, elemental.

Here is my magnesium thread.... this is a very important subject and most Americans are low in this mineral.
http://neurotalk.psychcentral.com/thread1138.html

Magnesium is used for certain vascular headaches in some people. But it really needs to be a daily intake, and not pulsed with megadosing IV only. So please read my thread to learn how to provide it for yourself eventually.

And stop the ice for now... you have a vascular issue... which is irritating the nerves. That is more complex than just nerve damage.

And please do continue here so we can all see how you are doing.
It is difficult on readers of forums, when people just leave ...it is much better all around to provide some updates, because people who come to the internet tend to be helper types....

[mrsD]

Potential side effects from butterbur:

http://nccam.nih.gov/health/butterbur