No Description
I think this is like biofeedback training to reduce stress and reduce pain. I did something like this a long time ago for neck pain, hands warmed up, blood pressure reduces but my pain persisted. All I could find googling this was a lot of advertisement and a book to buy from a phycologist. I do believe our pain signals persist from the brain but I don't really know exactly how this works or what this is. Meditation? Sharon
Hey there,
I am currently being treated with Neurofeedback for TN/ON. I have been going for almost a year and a half and look forward to it every week! Though it cannot do anything physically for our nerves (not truly) it can do wonders for our nerves (emotionally). The more nervous I am, whether I am aware of it or not, the more my muscles tense and cause a chain reaction with my TN/ON. It has helped me quit focusing so hard, every minute of the day, on my pain and function more in the world and not simply sustain through life in my home. It is rather costly and is not covered by insurance through my provider but I would put aside most anything in order to pay for it. Am happy to answer any specifics if I can.
Coqi, I think it is good therapy exactly to get your mind to figure out how to disconnect emotionally from your pain. I did have a lot of extremity pain with my neck pain and my hands were like ice. During the session I was able to raise my body temperature and my hands warmed up and it did reduce that pain but not the pain I was having at the base of my neck and between my shoulder blades. I can't remember exactly what I was doing but I did have leads on me and I viewed a program on a monitor and had to use my mind to control where a white line was supposed to stay at. That was a decade or more ago. I think today I do this simply by meditating, changing my environment, doing something I enjoy like painting and continue to use other modalities like heat and cold along with some pain medication to control pain. I have found that on mild to moderate days of this ATN, spending time with my grandchildren takes my mind completely off this pain.
I don't know if anyone would appreciate this opinion. When I go to PT I can vent my pain and they understand and with hard work and commitment I did improve chronic neck spasm I was also having with ATN. I got anxious when my insurance ran out and continued paying out of pocket. What I realized was I was going more for the emotional ordeal of dealing with chronic pain and had to stop or go broke. There was also a hands on therapy and nothing feels better than someone touching your pain doing massage. I do a home program for this, stretching, swim, heat and cold and have maintained my improvement.
I have never tried biofeedback or neurofeedback for ATN. This is a stubborn pain syndrome. Have you been offered a home program to do for this type of therapy or is it a program on a monitor like I did? This was before home computers, just wondering if it is something you can purchase and use at home.
I am always open to alternative treatment. I just bought this device from amazon that does acupressure stimulation. Started yesterday, found the sites for TN to use it on and I am going to see what happens. I can't afford to get acupuncture. This device is used by acupuncturists. I paid $145 for it. I have been getting a lot of emails of new things to try lately from this site. I am very interested in PNS, peripheral nerve stimulation for TN and ATN. Sharon
Sharon,
Yes, the Neurofeedback I participate in has the EEG leads (similar to what are used in a sleep study). I tried to games but found I tried too hard hard so my Psychologist has me watch movies instead. As I watch the movie, my brain relaxes and the EEG waves are turned into musical notes. The music, my brains own waves, are then fed back to my brain in a more healthy pattern so I can it can kind of "reboot" and get out of its exhaustive anxiety loop. My Psychologist works hand in hand with my Neurologist and, after finally adjusting well to medication, I was recommended to her. In September I had to enter the hospital unexpectedly for an unrelated issue. I was horrified my neurological issues would be unbearable. But medication plus what I've learned through Neurofeedback was really fruitful. I got through it all quite well.
And yes! The end goal is to be able to take what it learned and be able to function independent of the sessions. Much like physical therapy is to an injured leg, or neck, this is just PT for the brain in a sense. Depending who you work with, meditation, acupuncture and counseling can also be offered. I also go for PTSD related issues. Once I get past some things in February I am going to look at some possible physical therapy on my neck. I am scared of it though.
Another thing I've learned in Neurofeedback is tapping. Ever heard of it? What is this device you purchased? I've never heard of such a thing.
I dont know where you live but if you are close to Chicago try to see Dr Joshua Rosenow at Northwestern memorial Hospital! He is the best. We drive five hours one way to see him because he is the one who came up with a good and continuing treatment plan. This is a teaching hospital they have way more treatments at hand than any where else. I had a Motor Cortex Stimulator (interrupts pain signal to brain) implanted seven yrs ago for left sided ATN. for pain management. it works great. still have some minimal issues but very controlled with 2/3rds less meds and have more function and less pain!
Also i have been getting botox injections for periphial neuro pain after having Ramseys Hunt Syndrome on right side of face. this is bells and shingles at same time. such an ugly virus but the injections also help with some of this pain.
Blessings for pain free days and answers for pain relief for you keep us posted!
The device I am using is called a Pointer Excel II which I bought on amazon.com. Ben has been sending a lot of email notifications of alternative treatment for TN. I paid $145 for it and am just starting my 3rd day. I have no directions on how to use it so I am winging it. Three times a day to start. It does acupressure stimulation at trigger points for chronic pain. I looked up the areas that acupuncture is done for TN and I am doing those sites for 10 seconds and also trigger points for tmj and neck pain. I also do 3 seconds all over my face. It stings but the stimulation feels good at some of the trigger points. The 3 areas for TN I think are after researching... the eyebrow, the lower jaw bone just behind the ear and where the lower nostril meets the cheek. Acupuncturists and chiropractors use these devices. I need to do more research but I am in a trial phase right now and I am guessing on how many times a day to use it, it does say no more than 10 seconds at a site.
I went to a teaching hospital in Tampa, USF and was referred to another doctor there that might be doing this PNS or even the Motor Cortex Stimulator but they are not. I have not completed a search in my area. But I see you are getting alternative treatment that reduces the need for meds and avoids surgery. I may have to go to Orlando for this or even the east coast of Florida. This neurosurgeon I saw at USF was recommended from this site. He does surgery for TN and only if you have the stabbing electric-shock like pain, never atypical. His words to me were, "I don't want to make you worse." My neuro thought I might benefit from RF but nothing invasive for atypical TN is done at this teaching hospital.
My neuro is doing botox injections for neck spasm and occipital pain. He does not know how to do TN. Where exactly are you getting these injections for Ramsey Hunt Syndrome and shingles? I have ATN and atypical GN, that is the one with the ear pain and it is sometimes brought on by shingles.
I think you are where I want to be with alternative treatment but I don't live anywhere near Chicago. I think once you have the tools that control the physical side of it then the brain needs to re-educated. My feeling about this is I am sending the wrong signals from these cranial nerves because I have had a 20 plus year remission. I don't really know if I have a compression, my MRI's are negative but this is sometimes not seen until a neurosurgeon gets in to the area. Most surgeons will not operate on TN with a negative MRI and never operate on ATN. In the beginning of this coming back I wanted someone to go in and fix it. That is called a "cut for a cure". But now I am avoiding surgery unless I present with the stabbing electric-shock pain. I have read too many stories on this site of getting worse after surgery for true TN.
I should know better, I have had 13 plus surgeries for all areas of my spine, a few were elective, extremity pain goes away but down the road and as you age scarring and bony growth (arthritis) mimic the same pain again. A bone spur can feel like a herniated disc.
Some have done well after surgery for TN and other invasive procedures. I can't say for sure I wouldn't try it if I had true TN and was offered surgery. The healing time is long.
I also have a symptom that only one other sufferer of TN pain has also who went through MVD and now has AD. It is a cold-icy sensation on my face that is constant and intensifies. I dislike AC, cold winds and ceiling fans which is true for most TN and ATN sufferers. I like to wrap a heating pad around my face when it gets real bad but have found covering my face only makes it more difficult for me to handle normal room temps. I had this before tmj surgery and thought it would go away but it did not, however 5 years later it went into remission. Only once in awhile I would feel cold cheek pain if I was directly under an AC vent or a ceiling fan. Maybe I have nerve injury with it being constant 24/7.
My history is riddled with ill effects from products implanted and after effects of surgery. Now I need a decompression done for the scarring and bony growth, bone spurs that compress the nerves. My last one for the lumbar was in '09 and I am due again as I am presenting with severe sciatica pain. I have been either very unlucky or among thousands who suffer from choosing surgery and are told nothing can be done further for you after post op ill effects begin to present. I will eventually get too old to go through a decompression and then be wheel chair bound.
I have watched MVD on youtube, a teflon pad here and there that can move, and for GN they sometimes cut a nerve. Small blood vessels that the surgeon thinks are causing some of the pain are eliminated. And while they are in there doing all of this there is no promise you will improve, nerve injury or even death can occur. There is a small paragraph that tells you "medicine is not an exact science". You have to sign permission without any guarantee. The doctor has to protect himself from being sued. I do not believe in suing doctors for elective surgery. I think this is a pink paper you sign.
I am wide open to alternative treatments for this ATN. So, I will let you know how this goes for me with this little acupressure device. It may get stuffed in a drawer and never used as I don't think it is easy to return in 30 days. Sharon
his neurosurgeon recommended from this site simply told me he did not want to make me worse by trying anything invasive because I am atypical.
I am not sure but someone who has AD, that is anethesia dolorosa, nerve injury from MVD has a symptom I have which is a cold ice sensation on the face, kind of drives you batty and nothing in meds has helped that, just wrapping myself in a heating pad but then it makes it harder for me to adjust to the tempature around me. Dislike AC, cold winds and ceiling fans just like all TN sufferers. I had TMJ surgery in '86, it was joint surgery, I was rubbing bone to bone but my meniscus or cartilage was torn forward of the joint and was repaired. The worst symptom is deep screwdriver like ear pain, that went away, however I continued to have facial pain. The tmj joint is 1 mm away from the TN nerve, this I was told by a very nice ENT after having everything checked by him. He said in his opinion all pain forward of the ear is TN pain. He did not know anything about GN. That is another surgery to cut a nerve and I am not getting a nerve cut. I have read so many responses from sufferers who have gone through surgery or other invasive treatments and they are sometimes better at first, the healing time is long and leaves you with numbness, but then it comes back as AD which is pain like TN but much worse.
I need to answer your question. Ben's friends or it just says Ben has been sending email alerts for everything and anything that others are trying for this type of pain. I bought a device from amazon called a Pointer Excel II for $145.00, shipping was only $3.50. It does acupressure stimulation and is used by acupuncturists. I found a site that shows the areas I think are the correct areas to use this on. It does sting but I get some stimulation, maybe like a tens unit but more precise. I have been using it behind my ear at the lower base of my jaw bone, at the arch area of my eyebrow and where the lower end of the nostril meets the cheek. I keep it there for 10 seconds, 3x a day and even do my entire face at 3 second intervals. I have only had it for 2 days. I don't know yet if it is helping. When I find the right spot on my jaw bone I get stimulation all the way to my mouth and lips, that feels good even if the site stings some. I am also doing tmj and cervical neck trigger points too. There are no directions on how to use this and where to use it and how often to use it. I am in a trial phase. There were a lot of reviews 4 out of 5 stars for neck and back pain. Someone did send hers back because she did not like the uncomfortable stinging. I need to research this more but for $145 I thought it was worth a try.
I have AD also, it was from my Gamma Knife, but afterward I had to have MVD. The MVD stopped the lightening bolts in the face, but the AD from the GK was still there, and I describe the jaw lock as a Charlie Horse Cramp in my jaw then when it happens my jaw locks, and the pain fades away after about an hour, and I have muscle soreness for a few more hours. The AD was a little aggravated by the MVD, but it was from the original GK, sometimes I feel like a cold cement block on that side of my face. I have a great Neurologist, we sort of figured out what makes me comfortable, Gabapentin, Zanaflex and Clonazepham at night . Sure relaxation helps, I try to stay as stress free as possible, because when I get stressed, it gets worse..when the barometric pressure drops, I know I will feel terrible. I rest as much as possible. But biofeedback just helps control stress, the root, the AD is still there and needs to be dealt with. If biofeedback was a cure wouldn't every Neurosurgeon be out of business...my Gamma Knife was a big mistake that will be with me the rest of my life. I wish I would have just had the MVD immediately, but finding the right surgeon took lots of research. I certainly was appalled when the initial GK Neurosurgeon was jumping to do my MVD.. I went to Houston to the same Neurosurgeon who helped take care of Gabby Giffords, and it is ironic that I found your question today. I am from Arizona and traveled to Texas. What a wonderful doctor and a great surgeon. A 2 1/2 hour surgery took over 6 hours because he didn't want to rush. I don't know that I would have received the delicate care he put into my surgery anywhere else. There will be lots of people pushing lots of "cures", but they only let your pain linger on and on, and make the outcome worse. Try the Gabapentin and meds WITH the biofeedback.. Maybe find a Neurologist who will know how to medicate the nerve causing the AD pain. Just my experience talking. Good Luck. PS I too had Bells Palsy 25 years ago.
I agree with your opinion. We can teach ourselves how to meditate and relax to avoid stress which does cause flare ups and more pain. I for one am exhausted from spending money searching for a cure. Biofeedback is relaxing therapy but from my experience my pain was not reduced, this was not for ATN or TN, this was neck and arm pain. The only things that happened was reduced blood pressure and I was able to warm my hands which were cold. It is not a cure, just an aid if you choose to spend that kind of money to reduce stress. Sharon
I forgot to add that we discovered that sleep is very important, if you don't get enough sleep, when you yawn, that cramping, lockjaw happens..it is terrible. I also know that if I miss a dose of gabapentin, immediately I have the frozen face pain, you can feel it coming on. Also my Neurologist discovered that my eye was lacking a corneal response, that means that if anything such as dust or dirt during windy conditions outside, an eyelash, whatever could get into your eye, would not be felt and could cause permanent damage to the eye.I still blink, open and close as normal, but don't have that pain response. They sent me to an Eye doctor (MD) to verify, he gave me eye patches, etc. especially for night time. But I use an eye mask to sleep, so that was not necessary and I don't go out when it is windy..so I really don't use them. But I keep them in my purse just in case ! Another side effect of too much Gamma Knife is drooling, I really have to concentrate to not drool, but it happens, and the eye watering, I have to keep eye drops handy..Still I try to be glamorous, as I used to be, just a little more weight (side effect of gabapentin),.
I don't look like I am in constant pain and that I am trying to control what others see..so, it is like so many other conditions, invisible, even my family at times expects everything to be normal, because I look normal. All this courtesy of the still not perfected GAMMA KNIFE.
I was using this device frequently for 2 weeks but so far no change. I contacted the seller for more info on using this device on the face, it does sting a lot. So waiting for a reply, also can't seem to find out how long to use it, 5 or 10 seconds, even recommends 5 or 10 seconds, stop, and continue up to a minute. I found a site that shows the acupressure points for TN, along the lower jaw, next to the lower nostril of the nose and cheek and the curve of the eyebrow. I don't like it near my nose, it makes my teeth hurt. I am thinking I will return it. Has anyone used this device recommended by "Ben"? Sharon
Granny said:
The device I am using is called a Pointer Excel II which I bought on amazon.com. Ben has been sending a lot of email notifications of alternative treatment for TN. I paid $145 for it and am just starting my 3rd day. I have no directions on how to use it so I am winging it. Three times a day to start. It does acupressure stimulation at trigger points for chronic pain. I looked up the areas that acupuncture is done for TN and I am doing those sites for 10 seconds and also trigger points for tmj and neck pain. I also do 3 seconds all over my face. It stings but the stimulation feels good at some of the trigger points. The 3 areas for TN I think are after researching... the eyebrow, the lower jaw bone just behind the ear and where the lower nostril meets the cheek. Acupuncturists and chiropractors use these devices. I need to do more research but I am in a trial phase right now and I am guessing on how many times a day to use it, it does say no more than 10 seconds at a site.
I went to a teaching hospital in Tampa, USF and was referred to another doctor there that might be doing this PNS or even the Motor Cortex Stimulator but they are not. I have not completed a search in my area. But I see you are getting alternative treatment that reduces the need for meds and avoids surgery. I may have to go to Orlando for this or even the east coast of Florida. This neurosurgeon I saw at USF was recommended from this site. He does surgery for TN and only if you have the stabbing electric-shock like pain, never atypical. His words to me were, "I don't want to make you worse." My neuro thought I might benefit from RF but nothing invasive for atypical TN is done at this teaching hospital.
My neuro is doing botox injections for neck spasm and occipital pain. He does not know how to do TN. Where exactly are you getting these injections for Ramsey Hunt Syndrome and shingles? I have ATN and atypical GN, that is the one with the ear pain and it is sometimes brought on by shingles.
I think you are where I want to be with alternative treatment but I don't live anywhere near Chicago. I think once you have the tools that control the physical side of it then the brain needs to re-educated. My feeling about this is I am sending the wrong signals from these cranial nerves because I have had a 20 plus year remission. I don't really know if I have a compression, my MRI's are negative but this is sometimes not seen until a neurosurgeon gets in to the area. Most surgeons will not operate on TN with a negative MRI and never operate on ATN. In the beginning of this coming back I wanted someone to go in and fix it. That is called a "cut for a cure". But now I am avoiding surgery unless I present with the stabbing electric-shock pain. I have read too many stories on this site of getting worse after surgery for true TN.
I should know better, I have had 13 plus surgeries for all areas of my spine, a few were elective, extremity pain goes away but down the road and as you age scarring and bony growth (arthritis) mimic the same pain again. A bone spur can feel like a herniated disc.
Some have done well after surgery for TN and other invasive procedures. I can't say for sure I wouldn't try it if I had true TN and was offered surgery. The healing time is long.
I also have a symptom that only one other sufferer of TN pain has also who went through MVD and now has AD. It is a cold-icy sensation on my face that is constant and intensifies. I dislike AC, cold winds and ceiling fans which is true for most TN and ATN sufferers. I like to wrap a heating pad around my face when it gets real bad but have found covering my face only makes it more difficult for me to handle normal room temps. I had this before tmj surgery and thought it would go away but it did not, however 5 years later it went into remission. Only once in awhile I would feel cold cheek pain if I was directly under an AC vent or a ceiling fan. Maybe I have nerve injury with it being constant 24/7.
My history is riddled with ill effects from products implanted and after effects of surgery. Now I need a decompression done for the scarring and bony growth, bone spurs that compress the nerves. My last one for the lumbar was in '09 and I am due again as I am presenting with severe sciatica pain. I have been either very unlucky or among thousands who suffer from choosing surgery and are told nothing can be done further for you after post op ill effects begin to present. I will eventually get too old to go through a decompression and then be wheel chair bound.
I have watched MVD on youtube, a teflon pad here and there that can move, and for GN they sometimes cut a nerve. Small blood vessels that the surgeon thinks are causing some of the pain are eliminated. And while they are in there doing all of this there is no promise you will improve, nerve injury or even death can occur. There is a small paragraph that tells you "medicine is not an exact science". You have to sign permission without any guarantee. The doctor has to protect himself from being sued. I do not believe in suing doctors for elective surgery. I think this is a pink paper you sign.
I am wide open to alternative treatments for this ATN. So, I will let you know how this goes for me with this little acupressure device. It may get stuffed in a drawer and never used as I don't think it is easy to return in 30 days. Sharon
his neurosurgeon recommended from this site simply told me he did not want to make me worse by trying anything invasive because I am atypical.
I am not sure but someone who has AD, that is anethesia dolorosa, nerve injury from MVD has a symptom I have which is a cold ice sensation on the face, kind of drives you batty and nothing in meds has helped that, just wrapping myself in a heating pad but then it makes it harder for me to adjust to the tempature around me. Dislike AC, cold winds and ceiling fans just like all TN sufferers. I had TMJ surgery in '86, it was joint surgery, I was rubbing bone to bone but my meniscus or cartilage was torn forward of the joint and was repaired. The worst symptom is deep screwdriver like ear pain, that went away, however I continued to have facial pain. The tmj joint is 1 mm away from the TN nerve, this I was told by a very nice ENT after having everything checked by him. He said in his opinion all pain forward of the ear is TN pain. He did not know anything about GN. That is another surgery to cut a nerve and I am not getting a nerve cut. I have read so many responses from sufferers who have gone through surgery or other invasive treatments and they are sometimes better at first, the healing time is long and leaves you with numbness, but then it comes back as AD which is pain like TN but much worse.
I need to answer your question. Ben's friends or it just says Ben has been sending email alerts for everything and anything that others are trying for this type of pain. I bought a device from amazon called a Pointer Excel II for $145.00, shipping was only $3.50. It does acupressure stimulation and is used by acupuncturists. I found a site that shows the areas I think are the correct areas to use this on. It does sting but I get some stimulation, maybe like a tens unit but more precise. I have been using it behind my ear at the lower base of my jaw bone, at the arch area of my eyebrow and where the lower end of the nostril meets the cheek. I keep it there for 10 seconds, 3x a day and even do my entire face at 3 second intervals. I have only had it for 2 days. I don't know yet if it is helping. When I find the right spot on my jaw bone I get stimulation all the way to my mouth and lips, that feels good even if the site stings some. I am also doing tmj and cervical neck trigger points too. There are no directions on how to use this and where to use it and how often to use it. I am in a trial phase. There were a lot of reviews 4 out of 5 stars for neck and back pain. Someone did send hers back because she did not like the uncomfortable stinging. I need to research this more but for $145 I thought it was worth a try.