You can wear the device any time; wearing at night was only a suggestion.
One of the hypotheses behind ultrasound at this frequency is that it helps to regenerate nerves and expedite tissue healing. The Surface Acoustic Waves, unlike traditional ultrasound, when applied to a bony surface (i.e. forehead) travel the entire surface of the skull and are transmitted via the cerebrospinal fluid (CSF) with the central nervous system (CNS). You can wear the ultrasound throughout the day or anytime you have pain.
Makes sense. Alcohol (ethanol) increases GABA, an inhibitory neurotransmitter, similar to the mechanism of action of benzodiazapines.
Stevo53 said:
I had TN pretty bad on one side for 3 yrs and I took no drugs. I took Alcohol moderately when it was bad. Acupuncture made it worse. I have been in remission for 7 mths now. (3yrs + 7 mths) The Alcohol relaxes the nerves. Of course the more U drink the longer U get relief. If U are not driving anyway it is not a problem. And don't listen to the people who say Alcohol is bad for U because all these drugs that TN people take are far worse and have awful side effects. Good luck.
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.
I have been diagnosed six years ago with ‘atypical trigeminal neuropathy’. In my case it manifests itself when lying down and mainly at the right side. So sleeping is the main problem. My neurologist is also a surgeon and he tried three times to heat up the trigeminal nerve, but with no avail. He helps me with following medication. I cannot do without or my nights would be hell :
So, this is how I spend my nights: [1] Going to sleep: 1 Lormetazepam 2mg = sold under several brands) + 1 Pregabaline (= Lyrica) 150 mg + Tramadol Retard 200 mg (= Contramal). In spite of the pain, I fall asleep until 2 hrs. later. Then, I can’t stand the sudden increase of the pain anymore and have to get up. I stay up for about 2 hrs. [2] Then, I go back to sleep with: 1 Lyrica 150mg + 1 Tramadol retard 200 mg. [3] 3 hrs. later I have to get up again, although the pain is much less. This time I stay up for about 2 hrs. again. Before going to bed again, I take the same medication. [4] This time I am free of pain and can sleep for another 3 hrs. All in all, I sleep 2 + 2 + 3 = 7 to 8 hrs. During daytime I have no problems, I am totally free of side-effects, expect for what I describe here after. I have to eat a lot of fruit in order to go to the toilet normally. Otherwise it is too hard. That is the only problem I have. Driving is no problem either. I go to the swimming pool twice a week to work-out.
I believe it is important to be busy with hobbies and other activities and maintain your social contacts. Otherwise depression would surely come up. I feel it is at the horizon if I would worry all the time. I stay in the present time and do not care too much about later.
Often I wear the Israeli PainShield from Nanovibronix. http://www.nanovibronix.com This device sends a 90 MHz wave through my chin, where the pain is the most. It does not heal, but helps in reducing the pain. Usually I put it after my first sleep-session.
I thank God for Ben,each of you and the needful information given each and every day. Because of these online discussions I found out about the book entitled, "Striking Back". I learned so much and even let my neurologist browse through it. He said he was proud of me that I am researching my condition and did not know about the book. I was looking up about the Pain-shield and found this chart I have attached.
You can wear the device any time; wearing at night was only a suggestion.
One of the hypotheses behind ultrasound at this frequency is that it helps to regenerate nerves and expedite tissue healing. The Surface Acoustic Waves, unlike traditional ultrasound, when applied to a bony surface (i.e. forehead) travel the entire surface of the skull and are transmitted via the cerebrospinal fluid (CSF) with the central nervous system (CNS). You can wear the ultrasound throughout the day or anytime you have pain.
I have had bilateral ATN for about 8 yrs. It began as numbness/tingling in the left side of my face following a dental procedure from hell, then progressed to full blown pain bilaterally about 3 yrs ago. My neuro thinks that the full blown ATN was triggered after a very traumatic but wonderfully successful back surgery. I basically traded one nerve pain for another, but believe it or not, I'll take the ATN over the back and leg pain that I had suffered from tremendously for 25 yrs.
That said, I am thankful to God that presently 95% of the pain is controlled by Gabapentin.
Now, I would ask you if you have any other underlying illnesses? I have psoriasis and psoriatic arthritis and have noticed a definite correlation between flares of that and an increase of activity in my face. So, if you do have ANY other illness, make sure you are treating/managing that to the best of your ability. Both my neurologist and rheumatologist think that the increase has to do with an increase in generalized inflammation in the body.
On another note, I too would encourage you to check out the peripheral nerve stimulator, the occipital blocks and medical marijuana. (I was a nurse in a pain clinic for a number of years). All of these things were successful with some of the clients, but not with everybody. Each person responds differently to any treatment.
Since I live in a state where medical marijuana is not legal, it would have to be procured illegally...not a fun activity, but I can say personally that it did help the horrible nerve pain that I had in my back and leg prior to surgery. So, I would definitely encourage you to try that.
I am so sorry that so many of you are suffering so much. Never stop trying to find help. If one doc/treatment is unsuccessful, go to another. I went to 13 docs over 25 yrs before I found the one who fixed my spine. So, don't give up!
(Copy/pasted from above link)
“Neuropathy vs. Neuralgia”
The terms neuropathy and neuralgia sound similar but are actually quite different.
Neuropathy relates to a disturbance in function or damage to the nerves.
Neuralgia describes the actual pain in a nerve, several nerves or groups of nerves.
Often the causes and effects of both neuropathy and neuralgia can overlap. These are incredibly complex conditions and form part of the bigger neuropathic pain picture.
Trigeminal neuralgia - Pain caused by damage to the facial nerves or nerves of the head
Hi, as moderator I have chosen to post the following link and I have taken the liberty of copy/pasting a response from Red found in this link…
Please take the time to use our search function ( upper right) as this product has been discussed numerous times on LwTN.
Also, always discuss new treatment options with your doctor/specialists before hand.
I don’t want to discourage anyone from trying something new for relief, but I do want to make sure you do your research so you can make informed decisions for yourself.
MODERATORPermalink Reply by Richard A. “Red” Lawhern on October 18, 2012 at 2:02pm
Guys, over the years I’ve looked into several ultrasound devices like Pain Shield, magnetic devices, low level laser illumination and TENS. I don’t want to rain on anybody’s parade, but I just don’t see the science. Bill has the principles well in hand when he says that testimonials aren’t scientific evidence. They aren’t – and they’re too easily bought if placebo effect isn’t already enough to sell a product more sincerely.
When FDA makes a product finding, it has two parts: if a device is found unlikely to actively hurt you, it is certified safe. Only after the device is demonstrated in controlled, randomized, double-blind trials can it be evaluated for efficacy. And until that latter demo is done, Medicare won’t assign an insurance billing code and you’re on your own for payment.
In my view, a fee of $900 dollars for treatment with a device that probably costs less than a quarter of that to manufacture is not only “steep” – it’s fraudulent. You might as well believe in fairy dust, or go out and buy yourself a heat lamp.
Regards, Red
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.
The only partial relief I found following a Gamma Knife, MVD and 2 Balloon Ganglioglysis was (best to least) Trileptal, Lyrica, Lamictal, Nortiptilyne and occasional couple of Lorazapams if pains start hitting in succession. I now take this cocktail of meds with Effexor and Lipitor. There are obviously side effects that mess with blood salts, poor memory and concentration, dry mouth and sometimes poor balance. I never heard there was no total fix for it. I was hoping there was a light at the end of the tunnel. There are people in the process of doing a Genome Study that they believe will isolate the Genetic problem and have a genetic treatment within 7 years or so…our fingers are crossed here.
Sharon -
I have bilateral ATN as a result of a total wisdom tooth extraction. I have had issues with patches of paresthesia from the moment I woke up from surgery. It wasn’t until 6 months later that the pains actually started. It has been three years since I have had a pain free day.
I don’t have 14yrs + of drug experience. (Neurontin and opiods are the only things that have ever touched my pain. The only drug I ever took that I noticed a difference in the frequency of pain was Propranolol.) But, I became very good at appreciating the things that didn’t make me feel worse and the things that made me feel better. I paid attention by keeping a journal. I wrote down foods or food groups that I ate. I wrote down sleep and wake times, amount of exercise, stress, wind, temperature, and I mapped my pain and intensity. At first, I did this per the request of my neurologist. Then, I got really tired of writing all day long. So, I started writing down only what felt relevant. It helped me notice things about the days I was in less pain than others. Most of this for me centered around foods and stress. I stick to a mostly soft foods diet. Eggs from my hens, small amounts of fish, and goat cheese are my only sources of animal proteins. I ingest turmeric, ginger, and garlic daily. The pain induces a nearly constant area of swelling and inflammation in my jaw line. Those three foods in particular help me. I know that dark chocolate, wines, hot peppers, and eggplant are instant triggers. I stopped working a high stress job. Kept the people in my life who could move on with me and started making new kinds of patient and accepting friends. I took over a community garden. Gardening has been the single most effective thing I have done to manage my pain. I cannot live without it. (I’m staring at a greenhouse full of plants in my living room)
I still have daily symptoms and attacks. The severity and persistence have lessened. I don’t smile as much, but I’m happier than I’ve ever been. Pain has forced me to slow down and pay attention to my body. It’s hard to accept that sometimes medicine can’t help. It has been difficult for me to help other people understand that sometimes there aren’t options that are “mostly beneficial”. I am still hopeful and support research efforts to their fullest. There is so much we have yet to learn and benefit from. In the meantime, I make the risk vs benefit choices involving the medications I take and the treatment options I am willing to pursue. I was taking very similar medications and doses to my Grandfather who is living with Parkinson’s and RA. It was helping him and making me even less functional than when I was in pain. I know that my pain has a root cause and yours does not, but hopefully you can play around with some food and find something that alleviates the day to day inflammation that can be caused by that sort of pain. If you suffer from ocular migraine-like symptoms try “huffing” lavender essential oil.
Day to day life is still infinitely more difficult than before, but these are the only things that have made me notice a difference. I’d love to hear if you’ve maintained hobbies/activities that have helped you over the years?
I agree Othellocop…there just has to be a light at the end of the tunnel!! I too, take --trileptal, topamax, effexor, and nucynta. This keeps me pretty well painfree. Of course, if I lived somewhere warm year round, that would help tremendously!! Keep the faith. One day at a time. Thats all we can do…
For your neuro doc to say your problems may be from dental problems is a major RED FLAG. This doc dose not know about Trigeminal neurgial. Believe me I know. So run as far away from any doctor who is not educated about TN, even though all docs say they are they are not. It is very common for TN people to go to dentist fist for treatment because they feel the fist pains of TN sometimes are in the teeth. Many lose one to many teeth before they find that TN pain has to do with the Trigiminal nerve.
I have atypical TN on both sides and the constant migraine for 20 yrs. It is very bad every day. The Meds my doc has me has really helped for years.
Topomax, Atacand, Carbatrol, (Valium and Hydrocodone as needed for really bad times). I take other Meds to help me but these are the major ones.
The day I way given carbartrol after 9years of uncontrolled pain was a God-send. Within hours I was out of severe pain that I was able to see straight. This was after seeing several neuro docs who never gave me the very basic and fist med in treating TN. If your doc has not tried Carbartrol go to as many docs as need till you find one that knows what he is doing or you will suffer for longer than needed. It could be years. You are doing the right the by being on Ben’s Friends. You have to educate yourself so you can tell if the doc knows what he is doing. Good luck. P.s. I did have gamma knife for my headaches/constant ha. It help but I still could never can be off my Meds because the ha is still there it just dose not break thru as much.
Hope said:
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.
I have bilateral TN2, fibromyalgia and neck pain from an auto accident 15 years ago. My face pain started 4 years ago after losing my husband to another terrible illness. Of course Drs thought the pain was stress and grief. 5-6 years later, The pain got much worse as time went on. I have tried the usual course of drugs with no result or horrible side effects. Currently I am taking Dilantin, Lorazapam, Lamotrigine and Trazadone for sleep. I had a MVD done 2 months ago. Dr massaged the nerve during surgery and I got 2 days of relief. Then I ended up being hospitalized 3 times due to the increased pain. I realized that this is going to be permanent, my partner doesn't want to continue as things are. My daughters never visit anymore and most of my friends have vanished. I reread my life insurance police and rewrote my will. God damn this thing. Because of the fibro and neck pain, my surgeon has suggested a Prialt pain pump be surgically implanted. This drug blocked the pain from going to the brain as I understand it. I am having it done next week. With this condition, I have to work to do what works today and make plans ahead for what my next step will be. This site does give me hope for other options so thank you everyone.
I have had several procedures since 2009 and have been on Lyrica, Clonazapam and sometimes a sleeping pill to get to sleep. I have neuropathy on the right side of my face and have gone deaf in my right ear. I just had major surgery for another issue and was take off all my meds. I found that the Lyrica helps a lot. It doesn't take away all the pain but it makes it bearable. Also making sure you get enough sleep and have as little stress helps me to cope better. The pain never goes away but I have learned to cope.
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)
Brian, I've been reading and watching videos on this site. It looks as though this only diagnoses and monitors the brain. I haven't seen anything about it treating pain, like I read on www.ezultrasound.com.. Can you tell me where to find info about how it might help or heal?
This is not even an ultrasound machine! This is a doppler machine!
Brian said:
Jimmy,
I do not have a lot of experience with patients trying to get it covered. But I would definitely try. It should be covered: it has no side effects and it treats pain!
You'd have to get a script from your physician or PA or whomever you work with. The device is called Pain-shield.
The prescription would have to be faxed to the medical device company which supplies the ultrasound:
Sharon, your Dr. has the old school information, back when they called bilateral a psychosomatic condition. Get a new neurologist,try to spoon feed your Dr. info and teach him/her. Ask this Dr. if you can just try the regular TN meds. I couldn't handle those meds so I'm on pain meds and yes, it does help when mine goes bi-lateral. Most of us find that a combination of meds are the key, so don't give up. Most have a blend of anti-seizure meds, muscle relaxant and pain meds. I also have an anti-anxiety pill, not for anxiety, but because it soothes the over-active nerves. There is more information about facial pain in this site than ANY one Dr. was ever taught in medical school, and our resident researcher, Red Lawhern, got the textbooks changed from saying it is psychosomatic. HUGE feat!