NeuroTalk Support Groups - I'm re-posting htis from the trigeminal forum

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)

- - I'm re-posting htis from the trigeminal forum (https://www.neurotalk.org/peripheral-neuropathy/197360-im-re-posting-htis-trigeminal-forum.html)

Just wondering if you got the Cefaly device and if it's helping?

Thanks for asking, I'd forgotten that I had mentioned it.
i sent an email to a doctor friend in England who thought the results were inconclusive - I trust him and his judgement so I didn't get it.
I went to my "New" neurologist who dismissed it entirely.
He aso seems t think that these are "ice pick" headaches and have nothing to do with the bicycle accident (even though they started in September of 2008, the bike accident was July of 2008)
I've been to a lot of doctors with this and no one seems to be able to tell me exactly what is going on (the new doctor is a specialist in the area of trigeminal
issues).
He has left it with a topical medication containing Lidocaine and Prilocaine.
So far (about s month) it does absolutely nothing.
His attitude seems to be that this condition will not kill me, only cause discomfort.

Quote:

Originally Posted by Glyde 11209 (Post 1089545)

I don't think that anything is going to help....

I really don't know what to do at this point - last night I woke up in the middle of the night scrathing my head to the point to where I had skin under my nails.......I now have shooting pains in my ears (although, this has been something I've had for years and well before the bike accident in 2008) I went to a ENT who thinks this is a neuralgia and recommended a neurologist.
I've had the shooting, stabbing scalp pains since 2008 and nothing so far has done anything

Quote:

Originally Posted by mrsD (Post 1030382)

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Neurologists are quite limited and only work from their therapeutic books, some of which may be out of date, and are quite conservative given their high liability insurance rates.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

another night of clawing my scalp

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.....

I was given this by my most recent neurologist:
Lidocaine And Prilocaine topical cream.
It didn't work and when I saw the doctor again he told he that essentially he thought this condition was stress related and sent me to a accupunture doctor.
I've been going o one for years . I resented the attitude of this doctor which was this wasn't really something he should be concerned with.
The sharp shoot pains have mov ed on to my ears and the pain at times is overwhelming.

I was given a topical cream containing Lidocaine 2.5% and prilocaine 2.5%,
this worked for awhile then pretty much stopped.
I have the intense shooting pains on my scalp now coupled with similar pains in my ears - shooting stabbing pains usually at night, and/or first thing in the morning.
I'm hoping in some strange way that the pain in both ears is connected to the scalp pain and can help a doctor make a diagnosis.
This has been 8 years now - although, I do recall having pains like this in my ears from time to time at least 20 years ago. They last a few years and then go.
I've changed pillow cases, towels, everything that might cause an irritation of any sort. I did have a biopsy done recently of a bump on my scalp which indicated folliculitis. This has stopped over the past two months with the use of
a topical antibiotic, Clindamycin.
I still don't know for sure if this entire situation is or has been caused by a "neuralgia" the oft-cited but seemingly un-diagnosable condition.

Quote:

Originally Posted by icelander (Post 1151114)

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.

Quote:

Originally Posted by Lara (Post 1127972)

Just wondering if you got the Cefaly device and if it's helping?

I didn't buy the device, a doctor friend in England didn't seem to think it would actually help things..

Quote:

Originally Posted by Glyde 11209 (Post 1214162)

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:
http://www.neurotalk.org/peripheral-...hlight=magnets

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.