Dear all, I ’ ve had a tough week not because of tn pain but due to gabapentin ! I had such horrible side effects, I stopped it and suffered withdrawal symptoms. I’ve come to the conclusion that I can’t take anti convulsant. I’ve been doing some extensive googling and found this product which costs 695 pounds plus vat …I’m not sure hoe desperate I’m going to get doing opiates on an as and when basis …has anyone tried this ? 
I would message Red about this – never heard of it - could be a scam?
Hi there…not sure what if scam or not…looked okay but why wouldn’t they target a site like ours to sell. You ’ re probably right !
Get from your doctor - lidocaine patches - not a scam - prescription pain relief that goes on your face and helps for 12 hours at a time!
what kind of pain do you have tn or ATN or both? that makes a difference in the treatment. Also I took the antiseizure meds as well, gabapentin, tegretol and lyrica and had nasty side effects as well, On gabapentin I couldnt even stand up, i was so dizzy. I will say the lyrica helped with the least amount of side effects. I would discuss with your neurologist , there is always another med out there you can try , sometimes it takes time to find the right combo that works for you
Wendy
Hi Sarah, I am new to the whole TN thing, have had it three months now. I am researching alternatives to the medicines that make me feel awful. I recently purchased a painshield. Have only been using it two nights now, not sure if it’s making a difference yet. From my research it is a low intensity ultrasound that helps heal and regenerate. Ultrasound has been used for years in healing injuries, I think especially in sports injuries. I am not a medical professional and I’m sure it doesn’t work for everyone, I did a lot of googling and reading first,(which I would recommend you do) it seemed to make sense to me. I did contact other people that I found from this site who said they had good results with it before I bought it because it was over $1,000 to get it here to the U.S. I am willing to try just about anything. I
feel like if I lose hope I will go crazy. I will let everyone know if it works. I will continue to hope and pray for us all. Shawna
I saw it too wondering if it helps keep us informed Shawna I def here yah on the if I lose hope ill go crazy
Ooh…am intrigued I have tn1 and I’m not sure if I have tn2 or not as it hasn’t been diagnosed but I do have burning feeling but it comes snd goes…I’ ve been feeling awful on gabapentin and I stopped it after tapering for only 2 days which I realise was silly ( was away in Italy on a school trip and couldn’t get the internet to work on my phone to check if I should do It or not ) . The withdrawal has been awful. I am sure it does not agree with me. I’ m actually thinking I’ d sooner deal with the pain than ever spend another week lying down and trying to entertain a 4 yr old. I had to go and stay at my mum’ s, I felt so bad. Now I’m not on it, am actually much happier and tonight had a few glasses of wine which I wouldn’t have done on gabapentin. Anyway my history is that I had a few stas last Jan, thought it was teeth etc, then in May was really stressed st work then got full blown tn1 . I did the speaking exams at work and no one else could do them so despite no sleep with the 1st night’ s pain had to work for 2 days with stabs coming every 5 mins and lasting about 30 secs each. I got diagnosed by an emergency doc and then in Oct started feeling burning on face and wentg. on
The gabapentin. I reckon at the mo I’ m getting this every 3 to 4 mths and think ill have to relax a lot from mid Jan and do more cranial osteopathy and try and limit the damage but if I can’t deal with it this painshield sounds like a good idea. I will def do a lot of research before spending that much money… I wonder if there are any second hand ones on eBay ! Ha ha xxx
Strange.. when I bought mine for mum it was £690 or something including VAT not without VAT? And that came with patches. Anyway, really hope you get some pain relief too Shawna.. keep us posted on how you're finding it. Fingers crossed!
We've had a few other postings on the Nanovibronix painshield. As I noted in some of the postings, while ultrasound has produced some interesting results for general muscle pain, there really isn't any medical evidence to support its use in facial pain. And if you happen to apply the device over a trigger zone, you could cause yourself some problems with breakthrough pain. I personally see no reason in the world why this device should cost more than $100 dollars, at least not from a perspective of manufacturing cost. So I must regretfully suggest that we may be dealing here with either a scam or wishful thinking by desperate patients.
Regards, Red
Hi Red
Thanks for your reply. I thought the same about the price. If it really worked, I'm sure it would be available to hire. It is way way too expensive!
Best wishes
Sarah
Richard A. "Red" Lawhern said:
We've had a few other postings on the Nanovibronix painshield. As I noted in some of the postings, while ultrasound has produced some interesting results for general muscle pain, there really isn't any medical evidence to support its use in facial pain. And if you happen to apply the device over a trigger zone, you could cause yourself some problems with breakthrough pain. I personally see no reason in the world why this device should cost more than $100 dollars, at least not from a perspective of manufacturing cost. So I must regretfully suggest that we may be dealing here with either a scam or wishful thinking by desperate patients.
Regards, Red
I ordered it directly in Israel. € 520 with four patches included.
Walter
See my report on it. 4 weeks now. Less pain and longer sleep.
Walter
Gabapentin gave me bad sideaffects as well but please DO NOT go cold turkey on the medicine. Get into your neuro and find something else. See what your doc says before you make any big decisions! Most anticonvulsants are going to have those side affects so it seems hard to avoid.
lizloulou said:
Gabapentin gave me bad sideaffects as well but please DO NOT go cold turkey on the medicine. Get into your neuro and find something else. See what your doc says before you make any big decisions! Most anticonvulsants are going to have those side affects so it seems hard to avoid.
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Walter's answer:
For as far as medication is concerned, I have the impression that here in Europe it is very different. Just for your information I will tell you what I take here. I have no side-effects and the pain is under control.
I will mention the medication by their chemical name, not the brand-names.
To sleep (since my attacks are at night): 2mg Lormetazepam.+ Duloxetin 60 mg
For the pain: a combination of: 150mg + Pregabalin [Lyrica] + Tramadol 200 mg retard to take per attack = 3 times/night
The medications I see here on the site are available in Europe, but not used for TN.
I hope you can talk to your neurologist to ask what he thinks about these medications.
Regards,
Walter
For as far as medication is concerned, I have the impression that here in Europe it is very different. Just for your information I will tell you what I take here. I have no side-effects and the pain is under control.
I will mention the medication by their chemical name, not the brand-names.
To sleep (since my attacks are at night): 2mg Lormetazepam.+ Duloxetin 60 mg
For the pain: a combination of: 150mg + Pregabalin [Lyrica] + Tramadol 200 mg retard to take per attack = 3 times/night
The medications I see here on the site are available in Europe, but not used for TN.
I hope you can talk to your neurologist to ask what he thinks about these medications.
Regards,
Walter
What has been your experience with the device, Walter?
Red
Dear Richard,
Something went wrong with my reply, so I make it again.
First a reminder of how my situation is/was before: my pain-attacks are only at night or whenever I am in a horizontal position. (1) First I fall asleep for max. two hrs. Then I wake up and have to leave my bed to stand up. Usually I stay up for a half hour to ¾ hrs until the pain goes away. (2) Then I go back to bed with a dose of Lormetazepam+Tramadol+Prégabalin. The second sleep time was identical than before: two hrs. (3) this repeats itself for another two times. Total sleeping time is eight hrs, but in blocks of two hrs with up-times in between and another similar dose of medication. Usually I spend my up-times writing booklets for the PC-help site I am active in…
Now, after four weeks use of the device with a Patch containing a membrane that sends a signal of 90 kHz. I stick it against my cheek rather low on the right side where the pain is the most. I can say that (1) gradually my sleeping times are longer. Yesterday four hrs.! I cannot remember having this since years. Then my first pain-attack is ± similar like before, but (2) the second and the third time I feel practically no pain anymore, except a feeling of pressure.
Imagination? I do not think so. Placebo effect? I do not think so either. Nevertheless, I have to wait and see if this trend continuous. I found independent experiments (on the net) that says to wait two months before one can be sure.
In any case, my neurologist supports me since he believes that ultrasonic signals make sense. In Holland there is a study going on with a self-made device as they did not knew about the PainShield.
I hope my English is understandable.
Regards from Brussels,
Walter
I cannot find anyone who has tried the pain shield and the only tests was a trial on 17 people who were all treated with the device. In a randomised controlled trial (RCT) it is normal to have a placebo group treated with a dummy ultrasound. It's also normal to 'blind' the trial so neither the patients or the researchers know who is being treated. The reason randomised controlled trials are the standard way of testing whether a treatment works is because the placebo effect can be so strong.
I contacted treminalneuralgiatreatment.co.uk who apparently market the Pain Shield in the UK to ask for any results of a RCT and sadly they have not replied to my email. They may not have done a RCT for a reason - lack of patient recruitment for example - or they may have done one that hasn't worked and not published it.
Thanks to daughter-in-law who is a boffin on these matters and explained it all to me.