I have not been active on the site since a while, but now I want to report to you on my findings with the PainShield device that I am using now for ten nights in a row. In my desperation to get relief and in spite of the negative advise found on this website, I decided to buy it nevertheless. I bought it directly from Nanovibronix in Israel. It was sent as registered post to my home and I paid € 525.
As I mentioned before, I am struggling since more than six years with facial pains mainly at night. In a way, it feels more like toothache. At first I went to my dentist and even to Stomatology, several clinics and doctors. Only one year ago it was finally getting a name and diagnosed as “atypical TN”. Still it remains a mystery why I only get this pain at night - or lying down in horizontal position.
I am now at the mercy of a neurologist that really cares and that I trust. I talked to him about the PainShield device and I gave him the documentation that I found on the internet. He advised me to try it, saying that the theory of ultrasound make sense.
Before that, 3 radio frequency nerve ablation 'operations' were made: with a needle going through my cheek until the lower trigeminal nerve, trying to heat it up and paralyzing it somewhat. Unfortunately it did not help. A 4th intervention is now planned to do the same but higher on the nerve close to my ear…
I have been taking, for yaers now, much medication (but only at night): a combination of Lyrica, Tramadol - and Lormetazepam to fall asleep again. After some experiences with different combinations, I had now a situation whereby my pain is severe the first time that I wake up and gradually diminishes the following wake-ups until the pain is nothing more than a sensation of pressure (the fourth time). This takes four times getting up, waiting half an hour before going to bed again. When I am up, the pain goes away and in the daytime I am not having TN-pains.
Now, to come back on the PainShield: the first night, I had to get up 3 times instead of 4. Now after 10 days the pain is not as severe and I have got 4 hours of sleep instead of lees than2. Imagination? Placebo effect? I do not know. I keep hoping that the positive trend goes on. If it does or it doesn’t I let you know in any case.
Thanks for posting. I’m looking forward to further reports.
As for the mystery of why you TN comes at night, I found a few lines in a book about that very issue, so thought I’d pas it along:
"The pain of TN is frequently positional, and the patient can often find a position that that mitigates or worsens the pain. Lying on the contra lateral side often helps. Some patients are made worse by lying down. We have seen patients who, because Of pain exacerbation s, have been unable to lie flat in a bed for years, forced instead to sleep in a lounge chair with the head elevated. In others, over time, the positional component is lost, implying possibly that the offending blood vessel has become impacted into the nerve."
Peter J. Jannetta, Trigeminal Neuralgia, 2010, Oxford University Press.
I bought that book late last fall. When I read something here that resonates with something I remember from the book, I search it out and pass on the info. This also helps me to remember what I’ve read. I also have positional issues and must take sleeping pills so I can lay my head down.
Sleeping pills? To survive the night with 3-4 times jumping out of bed to calm down the pain - particularly the 1st and the 2nd time, I end up consuming 4 x 2 = 8 mg Lormetazepam, 4 x 150 = 600 mg Lyrica and 3 x 200 = 600 mg Tramadol. Hard to believe, but these are facts. Still next day I am able to beat the traffic into Brussels with no havoc and need not to take any medication during the day. I read that some people complain about side-effects of 150 mg Lyrica per day..?
Tomorrow I am driving far into Germany. Even my house MD is surprised, not my neurologist.
Yes, zoplicone. I don’t think it is available in US. I live in Canada. Lormetazepam is not available here. I take 2x 7.5 and have been taking this for over three years. I also take 900 gabapentin before going to bed. If I can get into a deep sleep I generally stay asleep. All in all I take anywhere from 2700 - 3600 gabapentin daily. Lyrica did nothing for me. Can’t take carbamazepine or trileptal. I still drive but like to stay with well known routes.
So why is your house doctor surprised and your neurologist not?
Also, wonder if the vibration of driving makes your pain worse?
Zoplicone is a new generation, rather light sleeping pill. Lormetazepam is the chemical substance. It must exist under a Brand name. Lormetazepam is a generic name.
My house doctor is not familiar with TN. I am his only case. The Neurologist knows how painful it can be an he is prescribing it.
As I mentioned, I do not have TN-attacks during the day. Driving or not.
I am writing this in the middle of the night. It is my first wake up. My Cheek hurts. All my hopes are on the PainShield that is stacked to my face now.
Hi WaWa, nice to hear from you again!
I hope you have success with the pain shield!
Wishing you pain relief and restful sleep!
I look forward to hearing how you make out!
Best wishes, (( hugs )) Mimi
Have you ever heard about sodium oxybate? It was designed for narcolepsy but it is used for other conditions like fibromyalgia suffers to increase deep sleep and reduce alpha wave intrusion (which causes wakening).Very expensive but good evidence it is therapeutic
I am wondering this would help you from awakening with the TN attacks.
You can count on it. I'll wait a few weeks and let you (all) know!
Thanks for your interest.
Regards from Brussels.
Ww
Mimi said:
Hi WaWa, nice to hear from you again!
I hope you have success with the pain shield!
Wishing you pain relief and restful sleep!
I look forward to hearing how you make out!
Best wishes, (( hugs )) Mimi
Hey WaWa. How is it going? I also bought the painshield and initially i thought it was helping, had a few great days, but since then i have had 2 really bad days.
I've only been using it for 4 days or so, but the fact that I am having two bad days is worrying me that it might be making the situation worse.
All I can say is that I am using it for over one year now. Do not expect it to heal completely, at least it was not the case for me. But: it does reduce the pain.