I'm re-posting htis from the trigeminal forum
 

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...

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Neurologists are quite limited and only work from their therapeutic books, some of which may be out of date, and are quite conservative given their high liability insurance rates.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

Trigeminal?
 

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..

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.

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.

Reply, and thank you again...
 

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.

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!)

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.....

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....;)

Potential side effects from butterbur:

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

reply
 

Reply:
The vascular issue was taken care of with surgery this past July - I just had a check up and everything is fine (pristine in fact).

This trigeninal(?) sharp shooting pains started in 2008, well before any vascular problems.
I was checked by my cardiologist in 2012, and was clear. The vascular problem
appeared in July 2013. I really don't think it is related to the shooting sharp pain that has been a problem since 2008.

Am I reading your last post accurately?

You had your bike accident, and a few months this scalp issue began. It became worse, except for one lidocaine block.
Then during a check up to clear you for back surgery, this carotid thing was noticed? It was never evaluated prior to that? It could have been there and no one looked? But now it is fixed?

Anyone explain to you how or why this happened? Are you taking statin drugs now? I would expect you would be using them. They are given after carotid surgeries.

You do have some pretty heavy stuff going on for your age.
An MRI of your head and neck might be very revealing.

Reply:
The vascular issue was taken care of with surgery this past July - I just had a check up and everything is fine (pristine in fact).

This trigeninal(?) sharp shooting pains started in 2008, well before any vascular problems.
I was checked by my cardiologist in 2012, and was clear. The vascular problem
appeared in July 2013. I really don't think it is related to the shooting sharp pain that has been a problem since 2008.

So your carotid clogged up that fast? That suggests something is seriously wrong somewhere. It will be interesting when that blood work comes back. What did your doctor say caused this problem?

Arteries can clog due to calcium deposits which come when there is an injury to the inner lining of the vessel. This can be a tiny tear, from lifting heavy things, like furniture or weights, or uncontrolled hypertension.
It can come from autoimmune damage. People with Rheumatoid arthritis can get this...same with vasculitis.
Elevated homocysteine levels damage vessels too.

Usually blocked carotids are slow to form and are found mostly in the elderly. But younger people do get them too, because of diet, lifestyle, etc.

I'm flattered by your phrase "you are too young..." I am 60 years old!
As I have outlined, the bicycle accident was in July of 2008 and the piercingly sharp pains on my scalp started in September (three months later)
For the first two years i and my dermatologist thought it a dermatological condition, and we went through all the skin tests, etc.
finally in December 0f 2010 we decided it might be neurological.
In the meantime - In November of 2012 I felt pain in my chest as I climbed stairs. I went to my allergist who thought at first it might be asthma - then decided that I needed a cardio stress test.
He was right - within a week I had two stents inserted into the arteries leading to the heart.
Since then I have been on a regimen of baby aspirin, plavix and crestor.
everything was fine - I had lowered my cholesterol levels substantially by the following summer.
I have always been active, I rode my bicycle across New York State a few summers ago along with tent, sleeping bag etc.
I continued to ride my bicycle and practice yoga up until October 2012 when back pain turned out to be spinal stenosis. I checked with three doctors, had numerous MRI's and finally came to the point where I was willing to have surgery to correct the spinal condition.
I scheduled surgery for July 22 of last summer.
I had to get a "cardio-readiness" check up due to the stent situation.
I came through with flying colors, stress test, everything until they checked the
carotid arteries. the artery on the left of my neck leading to my head was 99% clogged and the doctors were worried about a stroke or worse. I had the surgery and in two weeks was back teaching (rather gingerly) my summer drawing and painting classes.
Last week was my 4 month check up and everything is as the doctor said "pristine"
I am now on a three month check up schedule.
The doctors said in July as well as now when i asked them how this artery became as clogged as it did so quickly that my situation was "atypical" and due to genetic issues. This made some sense because my diet has been altered since the stent operation to rule out fatty food, soda etc.
I am not sure that the sharp pains which have been diagnosed as "cluster or ice pick" headaches, then as possible occipital neuralgia (I received a occipital nerve block inOctober of 2012, followed by a radio frequency block, this actually relieved the pain entirely for almost 6 months!
At this point however - this method has been tried twice with no results at all.
I have a migraine doctor who is convinced that this is best treated by Nortryptaline (sp) or one of the tri-sicyates(sp).
They make me sick, yet this doctor is convinced that if I only give the medication enough time my body will get used to it.
I also have been taking Tegretrol for about 4 years for a seemingly unrelated issue - mood control. I can't take anything apparently, Lyrica, wellbutrin, Luvox, Prozac -
When I first started taking Tegretrol it caused what my doctor called a "seratonin spike" I felt red and flushed.
I have over the last 4 years upped the daily dosage to 6 100 mg tables, two in the morning, two evening and two before bed.
I now understand that Tegretrol may be doing double duty in terms of mood stabilization and the apparent neuralgia.
I honestly don't have a clue because nothing has worked long term for over 5 years now.
You mentioned that I had a lot going on.....yes i do actually and it gets more confusing and frustrating every day.
I do thank you for all of your help............

I have an explanation of what the anti-seizure drugs to for pain.

Here:
this is a preface with some physiology before the actual drug
post...explaining neurons.

http://neurotalk.psychcentral.com/post828704-7.html

This is the drug post about the various drugs:
http://neurotalk.psychcentral.com/post829772-9.html

In general the anti-seizure drugs, often affect either calcium or sodium, and change the movement of these ions into the cell...which is the beginning of a nerve impulse transmission.
NMDA receptors use calcium as a stimulant, and magnesium as an antagonist. This is why magnesium is important for nerve pain. But there are other NMDA antagonists. Some people here use Namenda. And DM found in common cough medicines is used now in a drug called Nuedexta (this remains off label for pain still however).

One reason (and the doctors may not even know this yet), that Nortriptyline is really a good choice, is that new studies are showing it helps repair peripheral nerve damage. But it has been a pain treatment for quite a while because of the actions on serotonin, it has in the pain loop in the brain where pain is perceived and interpreted. This loop is the site where most pain is occurring....so it is technically "in your head". But the nortriptyline has the potential for fixing damage in the peripheral nerve systems that may be sending messed up signals.

In what way is nortriptyline so unpleasant for you? Usually in low dose that is all that is needed, and many tolerate it much easier than Tegretol, in fact.

So you teach painting? Is it acrylic in the class or oil paints?
Oil paints over time would defat nerves, and can be a trigger for PN. Some paint colors contain cadmium, and other heavy metals.
Have you ever had a test for heavy metals? That might be revealing.

Rode across NY state on a bike, lived on the ground in sleeping bags?

Sounds like LYME possibility to me.

There is a new test as of 2012, that a poster here has discussed.
He had terrible PN for a long time and came back positive on this test. Here is the link.

He claims NY is filled with Lyme infections.

I'd check this thread out:
http://neurotalk.psychcentral.com/thread195046.html

Reply :
decided to take nortriptyline again, 10mg once a day, anything higher than that makes me feel lousy and i snap at people, which is not a good thing if you are a teacher.
This dosage is termed "a baby dosage, and not doing a thing" by the headache neurologist I've seen.
Too bad, it's all I can do and I have tried

It takes a long time to see the benefits from the nortriptyline.
3 wks to affect the serotonin in the brain pain loop at least.

Longer than that to help stimulate nerve growth factors.
Many people take it at night, so by morning you don't have much in the way of side effects.

Give it a try, for 3 months...at that low dose of 10mg. See what happens. It is one of the more useful drugs for PNers, and not expensive or nasty. In high dose that is another animal entirely.
I don't believe you need higher doses. Maybe 25mg tops after the 3 months.

I hope your doctors monitor your blood white cells and electrolytes while you take that Tegretol. The toxicity from that drug can really sneak up on you suddenly.

I just had a blood test to check tegretro in my liver, bloodstream etc....it was way under the danger zone.
I have been taking nortriptyline for about 5 days now and haven't had a stabbing scalp pain since, it might be that there is a lot of tegretol in my system
and the Nortryptian is working faster ? (they are very similar drugs)
What ever the cause, I haven't had an attack in almost a week now.
I see my migraine specialist tomorrow, and my neurologist (back and this issue)
on tuesday.
Things feel better.....
And thank you for all of your help...

Nortriptyline mixed with an antiseizure drug, (typically it is gabapentin, however)...seems to work better than either drug alone. There have been studies on this issue.

This is good that things are improving. Keep up the good work.

and it's back......

Oh well... still it might be at a reduced frequency. Now is the time to log what you ate Sunday, or activities done, or if you washed your hair, or whatever. (PN never goes completely away, but with patients' participation, lessening symptoms, is an attainable goal.)

There was a segment on Sanjay Gupta, CNN Sunday about a plastic surgeon who does a specific nerve release surgery for
those with chronic migraine or head pain.
While it is not yet 100% effective, it did reduce frequency significantly for some patients.

I am not saying you should have this, but look at the video and
where they did this nerve release ...on the trigger areas. These may correspond similarly for you...

I am not saying this is your problem....but it is interesting to see
the video because of the placement of the surgery to release entrapped nerves. (the upper cervical neck and the forehead).

http://newday.blogs.cnn.com/2013/11/...raine-surgery/

And it's back.....

Reply - Nov. 26th
After seeing the migraine neurologist.
I was told to keep the tegretrol at 600 a day (which is good because when I pushed it to 900 I was yawning while I was teaching - 600 is a good level for me)
I got a magnesium "shot" and those are amazing, you feel warm, or hot all over - I wonder if this is an indication of it being needed ?
I was also told to take "slo mag" which you also had recommended.
and.....take 10mg nortrypilan in the evening, not at night and not in the morning - stay with it and try to increase in a few months (I've tried so many times to increase this and wound up feeling "goofy" and mean, at times my throat gets tight and it's hard to talk)
It was a good appointment.
I have had very minimal pain of my scalp for a week now, and this is after some incredible pain attacks over the past few months.
thanks for your help

It is slow going with nerve repair and reducing nerve pain.
It does require alot from you as well. So just take one day at a time.

Keep in mind that magnesium from oral sources can only go where the blood supply is open. If there are constrictive forces causing your pain (called ischemic pain) in the tiny vessels, then the magnesium can't get to where it needs to be. Using the lotion on your neck may help with those issues.

Watch for your triggers... if you can ID those, you can change things that way also.

Keep up the good work.

Neurontin buildup.....last night I flet like i was boiling from the inside.....
something is not wqorking and I really suspect that it's my body's recation to Nortryptian...

I know I'm not the only one here who has these issues with doctors and meds and pain,,,,byt this really does get a person discouraged,,,,
Thanksgiving day and i'm going back to sleep at 2:00pm

Are you taking both Neurontin and Tegretol?

Tegretol can cause a sudden loss of sodium, called hyponaturemia.
This results in confusion and other symptoms.

http://www.mayoclinic.com/health/hyp...CTION=symptoms

Mild forms of this are hard to detect, but when it happens it is usually suddenly.

If you continue to feel awful you need to contact a doctor, ER, or urgent care ASAP.

Tegretol is well known for causing this.

My mistake, I was pretty groggy when I wrote the last post.
I'm not taking neurontin. I tried Nortriptyline again and just can't take it. I really think it was ganging up with Tegretrol (they are chemically so similar)
so....what I've done is added on Tegretrol to my daily regimen.
2 in the morning, to around dinner time and three at night.
I'm also taking melatonin before bed (on the advice of my neurologist.)
I have to get the levels of Tegretrol checked in two weeks.
I feel so much better when not taking Nortriptyline.
I have also added "Slo-Mag" to the daily mix...
So far, about a week and I haven't had any major outbursts of stabbing pain in my scalp!

From Dec 19th to 23 i was in the hospital having back surgery.
up until today I have had absolutely none of the sharp pin like pain all over (random) my scalp.
Today it came back
As I have mentioned before, migraine specialists and one neurologist have either alluded to "cluster. or ice pick" headaches and prescribed nortriptyline.
my body just won't tolerate it, and I have tried over and over.
I am now on 800mg of tegretol for two uses 1. mood control and 2. hopefully addressing this scalp pain.
I'd like to know if I have a trigeminal or occipital neuralgia, or any neuralgias at all.
I have a new general practitioner who I'm going to see on Monday Jan 2oth.
I want to review that these symptoms started after a bicycle accident three months after I broke my jaw.
That for a year they were treated as dermatological, steroid shots, topical steroid solution, steroid shampoo, Nizoral 2% Shampoo.
After aboiut a year, the dermotologist recommended that I see a pain management person who in turn sent me to the migraine person

At this popint I want to know (since 2008) what I am suffering from!

I am sorry you had to have surgery. Were you off from your job
all the time you were not having your scalp pain attacks? Or were you taking medications, like flexeril or strong pain meds, which
may have blocked it?

no response...ok

I hear you when you say you just want to know what is wrong and causing all this pain. I also began with pain 2008. No accident just sudden onset of pain. Unfortunately, all the doctors I have seen, seems to search in the beginning for the cause then just give up and treat the pain. I find that a hard pill to swallow but there is only so much they can do. Hope the results from your surgery are good!

Dear Hopeful
I had surgery for my back....

the stabbing scalp pains have not been resolved - I'll try and find one of my early posts and re-post if if any of it would help ypu

amazingly, from the 19th of Dec (surgery)N until today I haven't had any of the "scalp" attacks. I've been taking percocet and flexaril - would they actually block trigeminal or occipital neuralgia?

I would vote for the flexeril... it can be useful for spasms.

It has some antidepressant actions and can be useful for pain as well.
You could try one alone at night without the Percocet to see if it would work for you stand alone.

I find it very useful for emergencies, but it is really sedative for me in the long run. One can last me over 24hrs !

If it works stand alone, you can try 1/2 of a 10mg as time passes, as that also seems to work with less side effects.

woke up at 5:00 am with what felt like a sinus headache, later it moved up to the top of my forehead, and along the back of my neck.
I took Flexeril and fell asleep...woke up and the pain was getting worse, I (out of desperation) took nortriptyline - which I have tried to adjust to for years..
overall I've slept for 18 hours.
I'm tired of going to neurologists who don't tell me anything, or ones that tell me they think this might be located in the brain stem and maybe using 5 mg of flexeril can help even though they haven't heard of it working in that manner.
I'm tired of doctors not knowing, not having the time, or subtly making this my problem because I can't tolerate the meds they "know" will work
(ie: Nortriptyline)
right now my face and forehead hurt, the air going in my right nostril actually hurts... and I feel groggy, don'[t want to get out of bed (It's 4:00 pm)
and am calling a doctor for antibiotics just in case this is a sinus infection....
it just goes on and on and on...

I certainly understand how you feel. Many of us have been thru the "medical" mill also.

I had a virus in Jan in the back of my neck and I was very dizzy and sick feeling. I used Robtussin DM to break it up (if sinus) and it worked very well. I still take it at night before I go to bed.
I also take a Zyrtec at night too, to minimize any accumulation in the sinuses. I also had quite a bit of photophobia with it...meaning bright light bothered me and hurt. Looking at the white snow everywhere still hurts some, but not like it did a month ago! ;) I didn't take antibiotics, but did some ice packs on my neck with some improvement.

It was a nasty inflammation, and I think those of us with PN get more pain when something like this comes along.

Hi Glyde
I'm sorry you feel so badly.
I was thinking about your scalp problems. Were you out of the country before it started? If so have you been tested for any type of parasites?
As for the sinus problems, I have always suffered from sinus infections. When I start to get really congested I take NyQuil before bed. It works for me.
Hope you feel better soon.
Hopeful

Just a reminder... Nortriptyline is not
A "pain" medication like aspirin and or opiates.

It works over time in the brain in pain loop
Perception area. So taking it for an acute
situation will only sedate you (it's main side effect).

People with sinus tendencies do better
With Mucinex or Robitussin products and
decongestants like phenylephrine.

There is a new therapeutic movement in
Medicine to not use antibiotics so quickly
for sinus problems. So some doctors may
be following this protocol now.

Drinking lots of water also helps with liquefying
Sinus congestion.