That is the same or very similar to the C cream I’m using and I’m getting fairly good results. At least no more screaming and hysterical crying.
Kaz, I don't know why your doc would tell you that CPAP didn't have a humidifier. I've think I've had mine for around 8 years or so. I could be wrong, but now there IS humidifiers. You need to get onto a CPAP machine now!! I can't stress that enough! There are so many problems associated with Apnea! The worst one is death. I would talk to my doc about getting a new sleep study, and getting on a CPAP machine.
Talk to your doctor now Kaz, please.
I have atypical TN, so I have the deep pain and the electric shocks. The deep pain is constant. I have ear involvement, like I said, but, thankfully, no tongue. That would hurt! I am guessing you mean Glossopharyngela neuralgia (GPN), then? I keep meaning to get the compound and see if my doctor will allow it to be made up, but then the pain lessens enough that I don't. Then I get hit again, and I think I should, back and forth, back and forth. Must have been terrible for you. The mouth is already a tender area, as it is. I feel the TN in my teeth and jaws, sometimes. That is bad enough, w/o adding the tongue and soft tissue.
I will bookmark the links you gave me just as soon as I figure out how to bookmark on Chrome!! Thank you for that information. I got it from the TN site because some of it was posted before, but I was on a different computer, and info was lost when it did a swan dive.
Kaz said:
I am a member of our GPN site on here. With GPN you know if you have it as the tongue becomes extremely painful, either burning, electic shocks, stabbing etc. One cannot eat, talk etc. The pain is also inside the throat and in the ear deep inside. It is different distribution to TN and feels different too as TN is external but one can feel referred pain internally. But with GPN it starts internally extending outward if that makes sense.
I spent 6 months last year unable to talk and could only communicate via email or on my ipad. Had to use local anaesthetic to deaden mouth (although pain still comes) in order to try and eat. Was only able to consume soups and other liquids.For the TN comound it was:
Capsacin 0.025%; Lidocaine 5%; and Gabepentin 6%. Applied 4 times per day.There are other compounds as well. Here is some further information.
http://thepainsource.com/topical-compounding-creams-used-in-pain-ma...
Here is another link with some general information and combinations.
https://lawrencepharmacyrx.com/compounding.php
I REALLY need to either not try to reply to posts w/o coffee, or learn to scroll up farther. Now, I see where you named the condition. Duh, me. The problem with TN, from what I understand, is that there is not just TN. There is the horrible thing you have, glossopharyngeal neuralgia, TN, bilateral TN, atypical TN, bilateral atypical TN with glossopharyngeal neuralgia, etc.... I am beginning to suspect that while some of us start with one nerve involvement. Or more. The nerves become problematic, and it can spread. I am simply talking to to many people who started out with one thing, and ended up with a posse of problems. Not to be a Debbie Downer about it. (Like the topic at hand wasn't grim enough as it is). Well, GPN sounds pretty darn awful, and that is for sure. And now, I will do the world a favor and have coffee!
Kaz said:
I get trigeminal but the neuralgia I was talking about is called glossopharyngeal neuralgia known as GPN. It affects the inside of the mouth, as in tongue, throat and ear. It is unilateral neuralgia, so generally occurs only on one side. So swallowing, eating, talking all can trigger it but not touch on the outside of the skin. It is caused from the 9th cranial nerve.
I've place a diagram below which shows the nerve pathways. Here is some further basic information on this. http://www.nlm.nih.gov/medlineplus/ency/article/001636.htm
Trigeminal is more outside but pain radiates inward too as the teeth can be affected. So touching the face, wind, cold air, movement of the jaw can all trigger TN pain. The crainal nerve affected here is the 5th. Here is a good diagram which you can see why different areas of the face in TN can be affected.
More info here: http://php.med.unsw.edu.au/medwiki/index.php?title=The_anatomy_and_...
Kaz…I agree, totally cool photos of the trigeminal nerve…AKA “el diablo”
Is there a TN for the body? I get shooting pains all through my body. It starts from the middle of no where and then "Zaps!" me at my skin level. Some times they are so bad, I end up hopping around, or I try to pound out the pain with my hand/fist. I was going to discuss this with my primary doc, but he was out sick. I see my Rheumy on Wednesday, so I guess I'll talk to him about it then. Not that I have much confidence in him.
Thank you so much! I’ll talk to my rheumy to see if he’ll refer me to a neuro.
Thanks, Kaz. I have, at times, had the same problem with zaps turning up in out of the way places. I also have a weaker right hand and some tremors from the TN/SS. At its worst, I had the myoclonic twitches/jerks. I know that SS can mimic MS, well, I know now, I did not know it when this whole fiasco started, but yours is the best explanation I've had thus far about what is going on.
Perfect nickname, Nomad. Perfect.
Nomad said:
Kaz...I agree, totally cool photos of the trigeminal nerve....AKA "el diablo"
Bookgeek…I have ATN. Hated taking pills as my stomach is already in trouble. The compounded cream basically saves my life. Just a heads up, there is an accumulating affect to it. And I felt a little nauseas the first few days. But after perhaps ten days (can’t recall exactly) I started to feel much less pain. It’s not fool proof, but it has made a world of difference. I was losing my will to live previously.
I had the tests done. From what I read, and what I was told, SS can cause the same lesions on the brain, but I am not out of the woods for MS, either. SS can cause a host of neurological problems, as well as muscle weakness/ataxia, myoclonic jerks, etc... The fact that it doesn't, usually, is great, but from what I was told, and have since read, the CNS and other brain manifestations of autoimmune diseases (not just SS, but the studies I finally looked up were about SS in particular) have been under estimated over the years. Of course, it could just be a faulty gene. Or some other weirdness. I see my doctors regularly and get whatever tests done that need to be done. In many ways I am quite healthy, but I am not the same person I was before the SS increased and my TN appeared (and wasn't that last one a complete surprise!) (Unwanted surprise, but a surprise)
Kaz said:
With TN it will not cause weakness of the hand or tremors. It is purely in the distribution of the face. The tremors and weakness are probably occurring from another area within the central nervous system. I have weakness to my arms and legs - delayed response times too. You can have this measured by nerve conduction tests, and also have your muscles tested with EMG (electromyogram). This is something you should have done if you are experiencing issues with your hand and also tremors.
Yes, MS can mimic SS, and vice versa. That is why it is important to have thorough testing when there is CNS involvement to separate the two. However, sometimes one can have both. One usually precipitates the other by a few years. Just like acquiring other autoimmune diseases, it usually is diagnosed with one, than later down the track another.
Bookgeek said:Thanks, Kaz. I have, at times, had the same problem with zaps turning up in out of the way places. I also have a weaker right hand and some tremors from the TN/SS. At its worst, I had the myoclonic twitches/jerks. I know that SS can mimic MS, well, I know now, I did not know it when this whole fiasco started, but yours is the best explanation I've had thus far about what is going on.
It makes perfect sense. I have had several tests, but don't ask me to remember what all they were. I can't. They are telling me that they think it is all just SS. Actually, that is not correct, since no one except the nurse practitioner has said that it can be a possibility. They have me come back regularly.
I use flouride trays at night. I would recommend them to anyone with dry mouth. They are molds of your teeth in which you place flouride in them at night. They were really inexpensive and done at my dentist office. I hope this helps.