So neuropathy is nerve damage and neuralgia is nerve pain. All I know is I have nerve pain. I don't know the cause. The neurologist says probably dental procedures. I haven't been on here in a while. I went through a few months at the beginning of the year where my pain was better. I weaned off all the medication and went 2 weeks with nothing. I had a few jabs and and pokes to remind me TN Was there. Unfortunately my pain free days didn't last. Every few days I've had to add more meds. I'm now up to my max. Oxcarbazapine, lyrica and gabapentine. I'm still in so much pain I can't stand it. Both sides. It was only in my left side for 10 years. The last year Year and a half in both. Now, my right side has caught up with my left side on a level of pain. So no, I've not found anything that works. I'm going to keep trying though. TN is not going to take my life away.
I saw a radiation oncologist who does the Gamma Knife procedure. She wasn't sure if it's for me and I don't know either. I'm getting desperate. I'm going to see dr Graff-Radford in Los Angeles.
Well I am so glad alcohol damaged my nerves because I am pain free for 7 mths after 3 yrs of torture. How come y'all don't talk/warn about the extremely dangerous side effects and long term damage from all these powerful drugs U are taking. And taking multiple drugs is even worse. Alcohol has been around for thousands of yrs. These synthetic drugs have not. Need I remind u that Viox was approved by FDA and after 100 were killed it was banned. Comp made 80 Billion profit after 10B development and 10B in lawsuits. Don't trust the FDA. They are owned by the big Pharma.
Have any of you tried putting a warm damp cloth on your face. That gives relief. A shower helped a bit also after the initial pain zap from the water touch.
Lynn said:
I have had TN2 for about a year. I take gabapentin which helps but continue to have daily pain. Please be aware that alcohol is well known to be toxic to nerves. I have worked with many alcohol abusers (not to say anyone here is an abuser) and many end up with peripheral neuropathy which can also be very painful. I'm not necessarily saying you will end up with peripheral neuropathy but be aware that alcohol damages nerves.
LOL. That's good Stevo. A good laugh is always good for us. If its working for you good for you. I wonder though if it just went away on its on regardless of the alcohol. Who knows? TN has a mind of its on. Shows up unwanted, leaves when it wishes - usually staying to long before departure. It is one weird, unwanted, dreaded disorder.
I have had two medical people say they wondered if the actual cause was possibly a virus that is not yet known. One person on this site, long ago, said his dr. was treating it as if it was virus related. Never heard back from that guy after a couple of attempts to check up on him. One of the med pros I know is a anesthesiologist, the other an internist. They both know what a weird thing it is and not enough is known about the causes. The comments to me were just that, comments. Not professional opinions. Still, I wonder. Sometimes surgery finds the typical blood vessel compression. Sometimes the surgery works, sometimes it doesn't. Sometimes it comes back later after the surgery. As in my case, the MRI showed no compression, so they don't know what caused it. And the story goes on and on ....... *smile*. In your case you say the alcohol works. If it does, I say, so be it. I'd be drinking more beer if I thought that would help.
Stevo53 said:
Well I am so glad alcohol damaged my nerves because I am pain free for 7 mths after 3 yrs of torture. How come y'all don't talk/warn about the extremely dangerous side effects and long term damage from all these powerful drugs U are taking. And taking multiple drugs is even worse. Alcohol has been around for thousands of yrs. These synthetic drugs have not. Need I remind u that Viox was approved by FDA and after 100 were killed it was banned. Comp made 80 Billion profit after 10B development and 10B in lawsuits. Don't trust the FDA. They are owned by the big Pharma.
Have any of you tried putting a warm damp cloth on your face. That gives relief. A shower helped a bit also after the initial pain zap from the water touch.
Lynn said:
I have had TN2 for about a year. I take gabapentin which helps but continue to have daily pain. Please be aware that alcohol is well known to be toxic to nerves. I have worked with many alcohol abusers (not to say anyone here is an abuser) and many end up with peripheral neuropathy which can also be very painful. I'm not necessarily saying you will end up with peripheral neuropathy but be aware that alcohol damages nerves.
I too have Atypical TN with basically no help from the meds. I have also had several procedures to relieve the pain. Still no relief. I would be very interested in trying this to see if it would help. My TN is so bad I have even had MRIs done to check for aneurysms behind my eyes because the nerves are so affected and I can not read for more than 7 or 8 words at a time. I even have to have help to read this and type this.
Anyone who has tried it please email me with the info. I have neuro appt tomorrow (Wednesday) this would be nice info to take with me.
My husband has ATN on his left side only, more than 5 years now. We believe it is the result of damage to the nerve after sinus surgery. He located a Doctor in Cincinnati Oh (we live 3 hours north of Cinci) whose website indicated she had treated patients with ATN and we saw her first in May of 2012. After she examined him and looked at his list of meds that were tried (long long list) she said that there were two things she could try. The first was physical therapy that had no effect. The second thing was an electrical stimulator. After 6 months of working to get approval we spent a week in Cincinnati and he had two surgeries. The first on Monday was to implant the electrodes. They go underneath the skull but outside the brain. A wire was placed running through the skin, hanging loose. Later that day the doctor and the Medtronics rep came in and hooked up a temporary battery, programmed it and gave him a remote. We left the hospital the next day and were told to act as normally as possible. Easier said than done, we were in a hotel and his head was wrapped in gauze. He didn't really want to be out in public too much plus he was worn down from the pain, the pain meds and the surgery but we got out and walked some and I kept him from sleeping during the day. They wanted to see if the stimulator was working on the pain. We went back in Friday for the second surgery. They said if it wasn't effective on controlling the pain they would remove the electrodes. If it was helpful and relieved enough of the pain they would implant a permanent battery pack and he could go home with it. It was so effective that he immediately gave up the delauded (sp?) he had previously been living on and as able to resume near normal activities. Three years ago he had to go on disability because he couldn't work. Before the surgery he spent his days in the recliner all doped up. Now, its not great but he can function. He'll probably never be able to have a "real job" again but he can function. For the first few months he thought he had 70-80% pain relief. Then it dropped and he started taking vicodin again and has recently started taking gabapentin again and this time it seems to be helping. Today he did quite a bit of yard work and by late afternoon it was getting bad but it's still much better than before surgery. His doctor told us that this device was not FDA approved for this use but is approved for other things so she was willing to try it since he had done everything else that was available. It's been a real godsend to us. We feel like we got our lives back, maybe not quite like we want things but so much better than before. The battery pack is in his upper chest and it looks like a pacemaker except it's on the wrong side. He will eventually need the battery replaced but average life of those batteries is 9 years. He has to charge it every few weeks but its easily done while watching tv or could be done in the car. The doctor's name is Ellen Air (or is is Ayr? can't remember now) but she has moved her practice to Michigan, Detroit I think. Good luck to all. I understand and feel your pain- maybe not physically but hang in there.
I'm not sure about the device you linked. It is 1Mhz, which is one million revolutions per second vs. 90,000 (90 Khz) on the Pain-shield, meaning it is a higher intensity and frequency. It is also not something that you can leave on and it requires gel etc. Maybe someone else has tried it that has advice. If a device works and is costly, yet has no side effects, in the long run it is a bargain compared to the side effects that pharmaceuticals may have.
Brian
Sheila W. said:
Having pain only after a short while of being awake is normal in all types of TN. I have always wanted to try an ultrasound machine, but wanted to try it at a Physical therapists' or pain control doctor's office before I put out the cash. I was looking at this one that is less than $100. www.ezultrasound.com I read that they have a money back guarantee, but I wonder if that's only if the machine is broken, or also if it doesn't work for me. I have had it bilaterally now and then, but not constantly.
djb said:
Brian :
would you equally recommend when sleep time is the only time when the pain is not active (and maybe the first 30 mins after waking)
Thanks for the info! I am familiar with the pain shield, which IS an ultrasound product, but on the site you mentioned, I didn't see the pain shield anywhere. Just a doppler monitor for brain injuries and illnesses. Can you please help me find the link about the pain shield on the site you suggested?
There are 2 types of ultrasound. One used for imaging and diagnosis, one used for deep tissue healing. Pain Shield was the first device I ever heard of for TN more than 5 years ago. I think it originated by TN researchers in Israel. But I can't see any info about it on http://www.multigon.com. Maybe is it offered by a different company? It sure would be nice to try it before buying it.
Thanks!
Brian said:
Hi Sheila,
I'm not sure about the device you linked. It is 1Mhz, which is one million revolutions per second vs. 90,000 (90 Khz) on the Pain-shield, meaning it is a higher intensity and frequency. It is also not something that you can leave on and it requires gel etc. Maybe someone else has tried it that has advice. If a device works and is costly, yet has no side effects, in the long run it is a bargain compared to the side effects that pharmaceuticals may have.
I LOVE my glass of wine in the evening. Unfortunately I believe it does make my pain worse. So , when my pain is reeling out of control I do not imbibe.
I'm in Canada and I haven't heard of this. I am currently involved with the Chronic Pain Center in my city, Calgary Alberta.
Is it similar to the TENS machine?
The medications are a concern for me. I have been on Gabapentin now for around 5 years. I have been working on cutting down the amount and had some terrible sleep problems. It's settled now and I have 200 mg to go. I also take T3's and T4's and Flexeril. I am thinking of trying Tramadol for emergencies and I know I have to have the Flexeril out of my system first. I'm kind of a light weight with the drugs and I get really messed up on them.
Thanks for the info.
Cheryl
Brian said:
Would either of you consider trying a portable ultrasound device? It works like a slow release medication; low intensity low frequency ultrasound which has a patch that you would wear on your face to sleep at night. Once you turn it on it works in 30 minute cycles. It is FDA approved though not covered by insurance. There are studies done on the effectiveness it has had on patients with TN. I do not have TN; I'm a physician assistant working in general surgery and prevention. I have a patient who became addicted to narcotics while trying to treat chronic pain; he tried this ultrasound machine and it worked for him, though it may not for everyone. If you'd like more information I'd be happy to give it to you.
I do not have personal experience with the TENS machine but I do know some physical therapists that
prefer low intensity, low frequency (LILF) ultrasound. I would recommend trying any alternative device to medication that may work for you.
If you're taking T3 and T4 it's important to monitor your TSH to have the right dosing.
Brian
Cheryl said:
Hi Brian.
I'm in Canada and I haven't heard of this. I am currently involved with the Chronic Pain Center in my city, Calgary Alberta.
Is it similar to the TENS machine?
The medications are a concern for me. I have been on Gabapentin now for around 5 years. I have been working on cutting down the amount and had some terrible sleep problems. It's settled now and I have 200 mg to go. I also take T3's and T4's and Flexeril. I am thinking of trying Tramadol for emergencies and I know I have to have the Flexeril out of my system first. I'm kind of a light weight with the drugs and I get really messed up on them.
Thanks for the info.
Cheryl
Brian said:
Would either of you consider trying a portable ultrasound device? It works like a slow release medication; low intensity low frequency ultrasound which has a patch that you would wear on your face to sleep at night. Once you turn it on it works in 30 minute cycles. It is FDA approved though not covered by insurance. There are studies done on the effectiveness it has had on patients with TN. I do not have TN; I'm a physician assistant working in general surgery and prevention. I have a patient who became addicted to narcotics while trying to treat chronic pain; he tried this ultrasound machine and it worked for him, though it may not for everyone. If you'd like more information I'd be happy to give it to you.
Just for your information: I ordered it directly in Israel about one year ago and they sent it to me overnight with DHL. No hassle, no tax, no prescription, no customs or any other problem. The packed size was half a shoebox. I payed € 500 = ± $ 650. I've got 10 raplacement patches and I only needed to replace it twice. The wires to the 'speaker' are very thin and can brake. I stick it to my chin with 3M medical tape. I my case, it did not heal, but it reduces the pain. Nevertheless, I still need to take my medications, but less.
Do you need more information? Do not hesitate to ask.
Thanks for all the info Walter. There is also a US location for people in N. America for Pain Shield. It's here.
That seems like a HUGE amount of money for a product that breaks easily. Good to know. I might go back to the idea of the less than $100 ultrasound product.
WaWa said:
Hello Sheila,
re: PainShield
Just for your information: I ordered it directly in Israel about one year ago and they sent it to me overnight with DHL. No hassle, no tax, no prescription, no customs or any other problem. The packed size was half a shoebox. I payed € 500 = ± $ 650. I've got 10 raplacement patches and I only needed to replace it twice. The wires to the 'speaker' are very thin and can brake. I stick it to my chin with 3M medical tape. I my case, it did not heal, but it reduces the pain. Nevertheless, I still need to take my medications, but less.
Do you need more information? Do not hesitate to ask.
Alcohol: I had one pain specialist tell me that alcohol did help some pain patients. it did not help me unfortunately
PainShield: we’re all desperate for relief; just make sure you do your homework as Mimi suggested, & know that some things work for some people, & not for others. we have a poorly understood disorder.
I tried everything initially, & some treatments that were lifesavers for other people on this site didn’t help me at all. other things that had no impact for some others did help me (e.g. acupuncture).
I tried a product at a medical conference (I’m a nurse), & surprisingly it did help reduce the pain for me. it is essentially “pulsed acupuncture” & is geared to override the sensory pain response with an almost imperceptible electric pulse. it is still very new (called the P-Stim) & costs about $300. some insurers in the US cover it (United HC), but many don’t. it is FDA-approved for pain control. but again, some things work for some people & not for others.
The product does not break, just the wires in the patch. Only two patch replacements in one year seems very reasoable to me. With 10 included in the pack, you have for five years..!
Expensive? The price of an iPhone to reduce your pain is not HUGE... It is all relative. Check also if the $ 100 device has the correct wavelenght and power. I had full support from my neurologist and was also confirmed by a university lab in Holland making experiments with UltraSound devices.
That is all I can say on this subject with the practical experience I have.
I also had some success with a friends home made magnetic pulser. It used a camera electronic flash unit to store and release the impulses and it used a magnet with a specific number of copper wire windings. Yes there is a $300 version of this.
Have any of you read all the info on the site of the hospital in Manitoba that specializes in TN. They have graphics tutorial for Doctors. I diagnosed myself from an article on web that then linked me to the Manitoba place. I had to diagnose myself because the Docs and local neuro were worthless, as was the Acupuncturist.
So when I knew what it was called I told my cousin in Aust who runs a big Hospital. He emailed me their complete data base on TN. This is what Docs go to for info. It even gives all the Meds, strengths, side effects and data on all treatments and operations. So I spent a week studying it all. I was not prepared to take any of the meds or have any of the procedures as it also had data on the results of the treatments. Like how many die from ops and how many get meningitis from brain surgery. Somewhere I still have all that info from the hospital. Not sure how I can share it with you all or if I legally can even.
So I set about to try and cure myself. It took me 3 yrs. What I found was that the more I could diminish the pain the sooner I would go into a remission. As I proceeded with this the pain periods diminished from mths to weeks and the remission periods increased from weeks to mths. I believe what I was doing was taking away the memory of it from the brain gradually.
Re the cause of TN. At the time I studied all the causes and I believe I know the exact cause of mine. The Data says the biggest percentage are caused by an artery getting a larger bend in it and pressing on the main nerve stem in the side of ones neck just behind and below the ear. So, I was in Bali in the tropics for a wedding and made the mistake of getting in a pool and at the time remembered thinking there was not much chlorine in the water but it was so hot and humid I needed to cool off. I got an infected hair follicle right in the spot where the literature says the nerve gets pressed against against the artery. I flew back to Aust , then to USA and 3 days later got the stabbing pain in temple, just once a day initially but within a week had all the face pain in the 3 nerve branches. Second week the trigger point was in one of my teeth for 4 days and I could only take liquid with a straw. Fortunately I had read the article by then that said do not go to dentist for this. The search I did to find the article that got me started was "EYE TOOTH NERVE PAIN" So began my education and 3 yrs of treating myself without Docs.
I had 4 sessions of Acupuncture. 1 was kind of euphoric, 2 hurt a little. Doc said it was my Gall Bladder.I knew that was bunk. 3 hurt a lot and the 3 days before the next treatment were the worst of my life. I was in such continual pain and weak from the pain that I could not walk up the flight of stairs to her office. I crawled on my hands and knees. 4. When she was about half way putting all the needles in one of them she was putting in my leg caused my leg to fly up in the air almost knocking her over and me nearly hitting the ceiling. I screamed at her. No More and get out. I should have just jerked them all out myself but it hurt to much to move to reach them so I laid there paralyzed for 20 mins till she ventured in to remove needles. She knew I was done with her. It took me a week to recover from that torture. Could not do much more than lay on the bed most of the time. Unfortunately it was a few mths before I discovered that alcohol would help. Lucky I am a tough ole coote. 53 when it started. Steve.
mrl said:
Alcohol: I had one pain specialist tell me that alcohol did help some pain patients. it did not help me unfortunately PainShield: we're all desperate for relief; just make sure you do your homework as Mimi suggested, & know that some things work for some people, & not for others. we have a poorly understood disorder.
I tried everything initially, & some treatments that were lifesavers for other people on this site didn't help me at all. other things that had no impact for some others did help me (e.g. acupuncture).
I tried a product at a medical conference (I'm a nurse), & surprisingly it did help reduce the pain for me. it is essentially "pulsed acupuncture" & is geared to override the sensory pain response with an almost imperceptible electric pulse. it is still very new (called the P-Stim) & costs about $300. some insurers in the US cover it (United HC), but many don't. it is FDA-approved for pain control. but again, some things work for some people & not for others.
I do have this condition. Is this device called a P-stim. I would love to learn more, and what the cost would be. Thanks!
Brian said:
Would either of you consider trying a portable ultrasound device? It works like a slow release medication; low intensity low frequency ultrasound which has a patch that you would wear on your face to sleep at night. Once you turn it on it works in 30 minute cycles. It is FDA approved though not covered by insurance. There are studies done on the effectiveness it has had on patients with TN. I do not have TN; I'm a physician assistant working in general surgery and prevention. I have a patient who became addicted to narcotics while trying to treat chronic pain; he tried this ultrasound machine and it worked for him, though it may not for everyone. If you'd like more information I'd be happy to give it to you.
I’m on vacation and the wifi service is spotty at best. I tried to post a reply ( it took me hours) and I don’t see it. Am I doing something wrong? I’m having a hard time learning the ins and outs of this site.
Sharon
