Atypical neuralgia sufferers?

General General TN & GPN (Old Site)
41

Hi Beth,

Try copying some of the articles here and on PubMed that suggest low dose Amitriptyline/Gabapentin combo for your pain. I can't believe a doctor would not prescribe this. A dentist could also give you a scrip.

Beth said:

It's so interesting to read about the meds you ask are taking. I'm on gabepentin with ibuprofen. When the pain heats up, I take a tramadol. When it's really bad, I take one or two of my mother in law's vicodin. My doctors won't prescribe vicodin. They won't prescribe amitriptyline. They won't prescribe lidocaine patches, gel, or cream. I use Anbesol in my ear. I've tried hot pepper liquid. I wear ice packs on my jaw and ear.

I don't have insurance, so I can't find a different doctor. I had to get a yearly exam, to the tune of $400, just so they'll continue to prescribe the gaba. The MRI cost nearly $3000. Tegretol made me suicidal, and Lyrica (sweet, blessed Lyrica) gave me a head to toe rash.

*Sigh* I'm clearly feeling sorry for myself, as I'm having a bad flare, and I have so little help from the medical community.

42

You’re not feeling sorry for yourself your unwell there’s a difference. Just remember the pain will pass and stick with the meds your doc prescribes you. Tramdol can damage your stomche lining and irritate it. Don’t take other people’s tablets. I’ve had MRI and nothing shows up on it so you might want to think about paying out for it.

43

Hello to all in this discussion and to all members on this site a Happy & Healthier New Year. I would like to add that my unbearable and constant tooth and gum pain on the right side of my face has tremendously decreased since I have been, for the last 2 months, on the generic for Neurontin, Gabapentin. After seeing 4 dentists and finally a neuro, I was prescribed 900mcg/day, then increased to 1200mcg and 2 weeks ago, I had my first SPG (Sphenopalatine Ganglion) procedure done by his PA; it totally decreased my debilitating headaches and facial pain and am having the 2nd one in 2 days, and every 2 thereafter until mid-March when I return for my neuro for a follow-up. I wanted to share this as it is working for me and well worth trying before going through any un-necessary and invasive surgeries. Again, Happy & Healthier New Year to you all from a happier me, after 8 months of living with excrutiating pain and not knowing what was wrong. Anyhow, take care everyone and God Bless you and yours

44

I continue to take gabapentin to hopefully keep the TN1 at bay. But trileptal (oxcarbazepine) has given me my life back. I take 600 mg twice a day.

What is this SPG of which you speak?

45

Hi I am so sorry to hear your suffering continues.I have been on carbamazepine, I take 800 mg and 400 mg of Bacalfin, I have also been referred to the pain management department for group therapy. Also, I an Effexor to aid in calming down the pain receptors in my brain. It has been tough on these meds, when things get bad, I apply a compound cream that has Nuerotin. I encourage you to continue to advocate for yourself

Blessings,

~E

46

Hi Elle,

I joined this group because I noticed your comments about your head touching your pillow triggering pain. I have been dealing with the same issue for eight years. My improvement has been slow, but I have improved. I can't look back one month and see improvement, but every year that I look back, I note how much better I am. Something that I have learned might help you. My pain syndrome has led me to be an avid researcher of TRP Channels. These are new pain channels that have been discovered -- so important that David Julius, University of California, San Francisco, was a major contender for a Nobel Prize in Medicine just this past year. Too new for most any of your doctors to be aware of and no medical treatments yet.

This is what I discovered -- Various branches of the trigeminal nerve innervate the meninges (covers the brain) and the scalp. When those nerves are sensitive, it makes sense that just touching your head to a pillow might trigger pain. This may not be news to you, but you might be unaware that you sensitivities might be exasperated by your environment. Here is where the newly discovered pain channel comes into play -- Those trigeminal nerves have terminal points in your nose, your mouth, your eyes. For example, some people know that TN can be triggered by smells. Facial pain can also be triggered by what we eat. On our trigeminal nerve cell surfaces, we have something called TRP channels. These are gated ion channels and these gates can open and close based on our exposures to things that activate them. If they stay open or closed too long, pain is triggered. If these pain channels are sensitized, we are not only sensitive to the initial irritant that triggered the sensitization, we are now sensitive to all other things that activate that same pain channel.

I most often find trigeminal pain associated with TRPA1 and TRPV1. These are just two of the 28 recently discovered TRP channels. If you are interested in knowing more, let me know. Pleae read "Chemosensory Properties of the Trigeminal System." by Felix Vianna. This is a good summary research paper. It may seem like "Greek." but if anyone is interested, I will write more about foods that I know activate TRPA1 and TRPV1. Example "CO2 (carbonation) activates TRPA1. You might expect that because of the sting of a carbonated drink, but you likely wouldn't expect that cruciferous vegetables would activate both TRPA1 and TRPV1. Brocccoli, cabbage, kale, arugula, etc. fall into the cruciferous family. What is healthy for some might not be good for people with TN or ATN.

I take 4,800 mg of gabapentin a day (most doctors stop at 3,600 mg, but up to 5,000 can be used in patients who tolerate well)

As the pain of touching my head to a pillow has decreased, I now use ambien to help me get to sleep quickly and when I wake in pain, getting out of bed usually stops the pain. Don't try the extended release ambien, it doesn't work as quickly, so you are left hurting longer once you lay down

Hope this sparks your interest to do research on TRP channels.

47


Hi TRP Sensitive,

Thanks for the great info. I'd love to hear more from you on this. Have you ever tried topical capsaicin? Upon prolonged exposure to capsaicin, TRPV1 activity decreases. Capsaicin has worked for me when my teeth had become extremely sensitive / painful due to my TN. Normally, I don't get shocks from my teeth, but like you mentioned, the afferentation / spreading of the pain sometimes activated the nerves in my teeth. When I applied a strong concentration capsaicin, the pain went away.

Actually, recently the Facial Pain Association has just funded a researcher (Wolfgang Liedtke) whose work is centered around these TRP channels, and he is working towards finding a solution for TN pain-

You can read about it here


TRP Sensitive said:

Hi Elle,

I joined this group because I noticed your comments about your head touching your pillow triggering pain. I have been dealing with the same issue for eight years. My improvement has been slow, but I have improved. I can't look back one month and see improvement, but every year that I look back, I note how much better I am. Something that I have learned might help you. My pain syndrome has led me to be an avid researcher of TRP Channels. These are new pain channels that have been discovered -- so important that David Julius, University of California, San Francisco, was a major contender for a Nobel Prize in Medicine just this past year. Too new for most any of your doctors to be aware of and no medical treatments yet.

This is what I discovered -- Various branches of the trigeminal nerve innervate the meninges (covers the brain) and the scalp. When those nerves are sensitive, it makes sense that just touching your head to a pillow might trigger pain. This may not be news to you, but you might be unaware that you sensitivities might be exasperated by your environment. Here is where the newly discovered pain channel comes into play -- Those trigeminal nerves have terminal points in your nose, your mouth, your eyes. For example, some people know that TN can be triggered by smells. Facial pain can also be triggered by what we eat. On our trigeminal nerve cell surfaces, we have something called TRP channels. These are gated ion channels and these gates can open and close based on our exposures to things that activate them. If they stay open or closed too long, pain is triggered. If these pain channels are sensitized, we are not only sensitive to the initial irritant that triggered the sensitization, we are now sensitive to all other things that activate that same pain channel.

I most often find trigeminal pain associated with TRPA1 and TRPV1. These are just two of the 28 recently discovered TRP channels. If you are interested in knowing more, let me know. Pleae read "Chemosensory Properties of the Trigeminal System." by Felix Vianna. This is a good summary research paper. It may seem like "Greek." but if anyone is interested, I will write more about foods that I know activate TRPA1 and TRPV1. Example "CO2 (carbonation) activates TRPA1. You might expect that because of the sting of a carbonated drink, but you likely wouldn't expect that cruciferous vegetables would activate both TRPA1 and TRPV1. Brocccoli, cabbage, kale, arugula, etc. fall into the cruciferous family. What is healthy for some might not be good for people with TN or ATN.

I take 4,800 mg of gabapentin a day (most doctors stop at 3,600 mg, but up to 5,000 can be used in patients who tolerate well)

As the pain of touching my head to a pillow has decreased, I now use ambien to help me get to sleep quickly and when I wake in pain, getting out of bed usually stops the pain. Don't try the extended release ambien, it doesn't work as quickly, so you are left hurting longer once you lay down

Hope this sparks your interest to do research on TRP channels.

48



knowpain said:


Hi TRP Sensitive,

Thanks for the great info. I'd love to hear more from you on this. Have you ever tried topical capsaicin? Upon prolonged exposure to capsaicin, TRPV1 activity decreases. Capsaicin has worked for me when my teeth had become extremely sensitive / painful due to my TN. Normally, I don't get shocks from my teeth, but like you mentioned, the afferentation / spreading of the pain sometimes activated the nerves in my teeth. When I applied a strong concentration capsaicin, the pain went away.

Actually, recently the Facial Pain Association has just funded a researcher (Wolfgang Liedtke) whose work is centered around these TRP channels, and he is working towards finding a solution for TN pain-

You can read about it here


TRP Sensitive said:

Hi Elle,

I joined this group because I noticed your comments about your head touching your pillow triggering pain. I have been dealing with the same issue for eight years. My improvement has been slow, but I have improved. I can't look back one month and see improvement, but every year that I look back, I note how much better I am. Something that I have learned might help you. My pain syndrome has led me to be an avid researcher of TRP Channels. These are new pain channels that have been discovered -- so important that David Julius, University of California, San Francisco, was a major contender for a Nobel Prize in Medicine just this past year. Too new for most any of your doctors to be aware of and no medical treatments yet.

This is what I discovered -- Various branches of the trigeminal nerve innervate the meninges (covers the brain) and the scalp. When those nerves are sensitive, it makes sense that just touching your head to a pillow might trigger pain. This may not be news to you, but you might be unaware that you sensitivities might be exasperated by your environment. Here is where the newly discovered pain channel comes into play -- Those trigeminal nerves have terminal points in your nose, your mouth, your eyes. For example, some people know that TN can be triggered by smells. Facial pain can also be triggered by what we eat. On our trigeminal nerve cell surfaces, we have something called TRP channels. These are gated ion channels and these gates can open and close based on our exposures to things that activate them. If they stay open or closed too long, pain is triggered. If these pain channels are sensitized, we are not only sensitive to the initial irritant that triggered the sensitization, we are now sensitive to all other things that activate that same pain channel.

I most often find trigeminal pain associated with TRPA1 and TRPV1. These are just two of the 28 recently discovered TRP channels. If you are interested in knowing more, let me know. Pleae read "Chemosensory Properties of the Trigeminal System." by Felix Vianna. This is a good summary research paper. It may seem like "Greek." but if anyone is interested, I will write more about foods that I know activate TRPA1 and TRPV1. Example "CO2 (carbonation) activates TRPA1. You might expect that because of the sting of a carbonated drink, but you likely wouldn't expect that cruciferous vegetables would activate both TRPA1 and TRPV1. Brocccoli, cabbage, kale, arugula, etc. fall into the cruciferous family. What is healthy for some might not be good for people with TN or ATN.

I take 4,800 mg of gabapentin a day (most doctors stop at 3,600 mg, but up to 5,000 can be used in patients who tolerate well)

As the pain of touching my head to a pillow has decreased, I now use ambien to help me get to sleep quickly and when I wake in pain, getting out of bed usually stops the pain. Don't try the extended release ambien, it doesn't work as quickly, so you are left hurting longer once you lay down

Hope this sparks your interest to do research on TRP channels.

49

I think your post might have been deleted by mistake



TRP Sensitive said:



knowpain said:


Hi TRP Sensitive,

Thanks for the great info. I'd love to hear more from you on this. Have you ever tried topical capsaicin? Upon prolonged exposure to capsaicin, TRPV1 activity decreases. Capsaicin has worked for me when my teeth had become extremely sensitive / painful due to my TN. Normally, I don't get shocks from my teeth, but like you mentioned, the afferentation / spreading of the pain sometimes activated the nerves in my teeth. When I applied a strong concentration capsaicin, the pain went away.

Actually, recently the Facial Pain Association has just funded a researcher (Wolfgang Liedtke) whose work is centered around these TRP channels, and he is working towards finding a solution for TN pain-

You can read about it here


TRP Sensitive said:

Hi Elle,

I joined this group because I noticed your comments about your head touching your pillow triggering pain. I have been dealing with the same issue for eight years. My improvement has been slow, but I have improved. I can't look back one month and see improvement, but every year that I look back, I note how much better I am. Something that I have learned might help you. My pain syndrome has led me to be an avid researcher of TRP Channels. These are new pain channels that have been discovered -- so important that David Julius, University of California, San Francisco, was a major contender for a Nobel Prize in Medicine just this past year. Too new for most any of your doctors to be aware of and no medical treatments yet.

This is what I discovered -- Various branches of the trigeminal nerve innervate the meninges (covers the brain) and the scalp. When those nerves are sensitive, it makes sense that just touching your head to a pillow might trigger pain. This may not be news to you, but you might be unaware that you sensitivities might be exasperated by your environment. Here is where the newly discovered pain channel comes into play -- Those trigeminal nerves have terminal points in your nose, your mouth, your eyes. For example, some people know that TN can be triggered by smells. Facial pain can also be triggered by what we eat. On our trigeminal nerve cell surfaces, we have something called TRP channels. These are gated ion channels and these gates can open and close based on our exposures to things that activate them. If they stay open or closed too long, pain is triggered. If these pain channels are sensitized, we are not only sensitive to the initial irritant that triggered the sensitization, we are now sensitive to all other things that activate that same pain channel.

I most often find trigeminal pain associated with TRPA1 and TRPV1. These are just two of the 28 recently discovered TRP channels. If you are interested in knowing more, let me know. Pleae read "Chemosensory Properties of the Trigeminal System." by Felix Vianna. This is a good summary research paper. It may seem like "Greek." but if anyone is interested, I will write more about foods that I know activate TRPA1 and TRPV1. Example "CO2 (carbonation) activates TRPA1. You might expect that because of the sting of a carbonated drink, but you likely wouldn't expect that cruciferous vegetables would activate both TRPA1 and TRPV1. Brocccoli, cabbage, kale, arugula, etc. fall into the cruciferous family. What is healthy for some might not be good for people with TN or ATN.

I take 4,800 mg of gabapentin a day (most doctors stop at 3,600 mg, but up to 5,000 can be used in patients who tolerate well)

As the pain of touching my head to a pillow has decreased, I now use ambien to help me get to sleep quickly and when I wake in pain, getting out of bed usually stops the pain. Don't try the extended release ambien, it doesn't work as quickly, so you are left hurting longer once you lay down

Hope this sparks your interest to do research on TRP channels.

50

Elle,

Good to hear from you. I did try to use topical capsaicin once on a small place on my face and the pain was so severe that I didn't try again. I also suffer from Burning Mouth Syndrome so based on what a friends doctor told her to try, I ate jalapenos several times a day for two or three days. Of course I first suffered extreme burning and then the burn would be less intense for a while. After about the third day by head and facial pain got much worse. I believe that this is also what triggered my palatal myoclonus (soft palate at back of my throat jumps all of the time). It still does, eight years later. According to a neurologist that I saw, this is thought to be a feedback loop of the trigeminal nerve. Because of my bad experience, I wouldn't recommend that.

It is good to hear that Dr. Wolfgang Liedtke has been funded to look for help for TN sufferers. A couple of years ago I went to see Dr. Liedtke because I knew that he understood TRP channel pain. He sent recommendations to my primary care physician, by my physician felt that some of the drugs were too strong and didn't want me to go that direction. Sometimes I feel that I have suffered more than I should because he has been a bit too conservative. One thing I remember that Dr. Liedtke suggested that did help -- In a pan of steaming water, add a couple of drops of mint oil and then breath the steam. Mint activates TRPM8 (a cooling receptor) and is known to counteract TRPV1 (a heat receptor) . I suffer from burning both in my chest and my face and at times I did find this helpful. Make sure that you don't add to much mint, it can get pretty strong and you don't want that..

Dr. Liedtke was a very nice man. I haven't been back to see him because by the time I paid for a hotel and airfare,it was pretty expensive. My face time with him was rushed and I was disappointed when I left his office. I did hear the nurses talk about him running behind. That being said, when I received his letter of recommendations/ideas, he had taken time to write a detailed report addressing my concerns and, as I said, had a number of recommendations for my doctor. Overall, I have a good opinion of him -- I think he was just running behind the day that I saw him.

51

The paper below reinforced my understanding that once our trigeminal nerves are sensitized, a diverse number of chemicals will now excite those nerves. Avoidance of trigeminal irritants is my focus right now. The day I ate a banana and my mouth started burning, I searched "TRPV1 Banana" and found the paper below. Sure enough, an acid in bananas can activate TRPV1. Look at what you eat and consider whether you are eating things that might activate your trigeminal nerves.

Dissecting the role of TRPV1 in detecting multiple trigeminal irritants in three behavioral assays for sensory irritation

CJ Saunders1,2, Winston Y Li1, Tulsi D Patel1, Jeffrey A Muday1, Wayne L Silver1

file:///C:/Users/Owner/AppData/Roaming/Zotero/Zotero/Profiles/qomyojy5.default/zotero/storage/8KUDSER5/v1.html

52

I’m sorry you’re suffering…I feel your pain (literally!). I was just about to post something myself. I find that an herbal heat pad works. (Not sure if it ACTUALLY works, but the heat is soothing. I’m not having luck with meds either. Maybe someone can answer my post & suggest something to help us both! Good luck!!