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Supraocular and supratrochlear nerves to the left eye & scalp are fried. Formerly an EEG Tech, I read every neuro article out there about PHN - the "coincidence" of increased rosacea near or at the site, the biopsies of affected PHN sites showing 100x the # of nerve cells than non affected sites, & so on. Slogging thru suicidal thoughts, despair, strained relationships, and the "but you look fine" replies have left me / us no alternative but to find the answers ourselves.
And I need your help. Each paragraph has a topic title - if you can include the topic in your reply title, that will help organize the replies.
MYELIN SHEATH - do the supraorbital & supraocular nerves have myelin sheaths? Some nerves have this outer sheath covering the twisted bundle of nerve fibers, but none of the five specialists I was seeing simultaneously could answer this question, nor can I find the answer. Are all PHN sufferers dealing with nerves that have myelin sheaths?
R ALPHA LIPOIC ACID - This OTC mail order capsule came from Geronova Research in California, and despite its $ 120 monthly cost, it may have helped. My pain is far worse now than it was a year ago when I could afford it for a few months. This acid may aid in nerve regeneration in adults. There was a large body of medical research done by Germans in the mid 30's on nerve regrowth, and the surnames of some of the principals in Geronova Research appear to be German Does this California company have connections to nerve research done eighty years ago?
FRUCTIS HAIR CONDITIONER - Because I can only wash my hair by slowly dipping my head backwards in water and shampooing the happy part of my head, my eyes are closed during this ordeal. A few weeks ago, my hand, cupped with Fructis hair conditioner, accidentally hit my affected eye and scalp. Instead of screaming with pain, I had immediate, cool, soothing relief from the 24/7 burning itch and no pain from touching the fried area. I repeated this three times over the next week, all with the same instant relief. The instant relief continues each time I apply Fructis conditioner. My beautician confirmed my thought that conditioner closes the hair shaft. Could the conditioner be "closing" these open nerve endings? She gave me two different Fructis conditioners and another brand of conditioner that is a different type of product. I am comparing each kind and noting the common chemicals in the most effective two conditioners.
CHEMIST NEEDED - Once the common chemicals are determined in the hair conditioner, does anyone know of a chemist or chemical researcher outside the US who would be interested in helping us determine if a hair follicle closing chemical is also closing nerve receptors?
BODY ELECTRICITY - The body is full of electricity, and in the first three months of PHN, I suffered mini seizures or "neurological events" from the mass at my brain stem and too much electricity firing from the damaged nerves. Although the mass subsided, a few times a month the events start to form, always in the same spot and always starting with the jagged, white light in my brain. However, I can hold my palms together over my eye, concentrate, float my body above the clouds, and within seconds the white light and pain go away. My theory is that my hand electricity is negating the overactive electricity in my brain. Is there any way to prove this?
SUICIDE - I need help. Despite my better days, there are still too many of the bad days, and if too many of the bad days happen back to back, I want to check out. Don't tell me to call the hot line. I want to talk to someone who understands PHN and doesn't tell me that it's selfish for me to want to check out because I have headaches.
Thank you, & may all the gods we believe in bless us.
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