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Neurologists are quite limited and only work from their therapeutic books, some of which may be out of date, and are quite conservative given their high liability insurance rates.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