An interesting study on the new, very expensive Tomac Device for Refractory RLS.
It seems that continued use improves RLS over time, possibly due to neural plasticity.
The days per week when RLS affects patients reduced from over 5 to 3. I'm not sure I'd be happy with that but if opioids ever stop working for me, who knows?
It's expensive and still only available in limited areas of the USA but as the RLS population is so enormous, other companies may develop similar, cheaper models.
I wonder what the $75 per month for disposables is?
coo-er! Costly++ … but , as you say, if my present treatment fails…… who knows😂
I am sincerely hoping that competitors jump on the bandwagon. Give us more options.❤️🩹
And will reduce the price.
And as fast as things change in the electronics industry, a new manufacturer may either jump on the bandwagon or TOMAC will issue an update. Both will drop the price (on TOMAC's original)
Fingers 🤞
I start mine this week. I'll keep you all updated. The disposables are covers for the device's metal contact points that conduct the signals - instructions are to replace weekly. Medicare is covering 80%, my Medicare Supplement insurance picks up the rest. No co-pays or anything. My hope with it is to reduce, if not eliminate, my buprenorphine dose.
Brilliant news. Let us know how it goes.
Please let us know how the device works for you. I have been contemplating paying out of pocket. Maybe I’ll wait until I am eligible for Medicare.
Nice. I assume the buprenorphine currently helps your RLS. Have they giving you an idea on when to reduce the buprenorphine to see if the new treatment works? My concern would be about going through opiod withdrawals while testing out the new device. That would be tough for me to evaluate. Wishing you luck.
I haven't had my first training session with them yet. But I suspect that I will have to try reducing my buprenorphine dose because they only want you to turn the device on when you have symptoms. So the dose reduction will be gradual to see what effect the device has. That should make withdrawal okay.
Does Medicare pay for the cost of the device?
Yes - 80%. My Medicare supplement picks up the balance.
So happy to hear. I ordered mine this week. Can't wait to hear how it works for you. Good Luck. Please keep me posted.
Hi Joolsg, interesting but ii guess how severe your RLS is over a 7 day / night period is. I think I feel a bit like you, still suffering badly with only a few days relief I think would still drive me up the wall but if you had some good nights sleep then maybe it would give you strength to get through suffering on the remainder. As you say never say never
Regards HipHop1973
I feel guilty HipHop as I never get any RLS EVER now. The 0.4mg Buprenorphine pills gives me 24/7 cover and has done for 3.5 years.I know a few people who have had similar results.
If you're on the patch, many report it doesn't last 7 days and they get symptoms after 4 or 5 days.
Do you think it might be possible to try the pills to see if they give complete cover?
As Dr Buchfuhrer says, between 95 -98% of RLS patients will get complete relief with the RIGHT doctor and the right meds.
But if the pills ever stop working, then I would try Tomac.
Hi Joolsg. Please don’t feel guilty, you and I are some of the fortunate ones who finally managed to work free of the ignorance and intransigence of the medical profession. Countless members have been helped by you personally and RLS-UK including other members of the forum and I include myself as a recipient of that help. I will be forever grateful for joining RLS-UK and attending my first AGM on zoom and being able to tell my story at which time I was taking 6mg of Ropinirole a night and suffering what I found out to be DA augmentation and being advised by our chair to come off it.
It was also through a forum member that I was told about Doctor Christopher Murphy who had a private clinic at the Alexander Hospital in Cheadle Cheshire but also had a NHS clinic at Salford Royal Hospital in Salford Manchester. You all in various ways have given me my life and sparkle back,
Joolsg you are a trustee of RLS-UK and work tirelessly for the cause in looking into ways to spread the word on RLS and to educate young doctors and in giving hope and encouragement to members. . As I said before you have nothing to feel guilty about.
To answer your second point, my 7 day 10mg patches that discharge 10 micro grams of Buprenorphine/ night are working well. I have been using them for nearly 6 months now with no side effects apart from really good sleep, some exciting dreams 🤣 and not always wanting to get up, that’s still a novelty after years and years of not having the option with my body forcing me to get up and walk. I have only had 1 dud patch that I had to replace after only 2 nights. So far I’m extremely happy with the patches and as the hospital pharmacy sends my 3 month repeat prescription to my home by special courier it saves a 3 hour + round trip to collect. I’m hoping to join the AGM via zoom if I get back from having my Flue an Covid booster, I should make it but I don’t have log in details so if they could be emailed to me I’d be very grateful.
Regards HipHop1972
You will need to email the membership secretary at RLS-UK. She sends out the AGM link email.I'm glad to hear you are getting cover, I misread your reply.
Please don't feel even the tiniest bit guilty, just enjoy being RLS free for as long as it lasts (hopefully it's a permanent solution) and accept our thanks for your (and the other stalwarts') absolute dedication to helping those with RLS.
I've posted on this before so apologies for repeating, but various GPs tried to make me sleep past the 3.00am RLS with sedating antihistamines, melatonin, then amitriptyline (all of which made it worse of course) before settling on pramipexole. I took it once, started googling next day, found this site and started on gentle iron. I already had a prescription of co-codamol for pain which allowed me to get to sleep but once I got my ferritin up from 55 to over 100, the 3.00am wake up call was no more. When I needed help with anxiety, due to the info on here once again I was able to make a case for trazodone and the GP prescribed it. I do occasionally still wake up with RLS, however it comes with lower back pain and in the 'wrong' leg, so tends to be a one off that extra pain relief sorts out.
I was very fortunate to both find this community just when I needed it and to be one of the lucky ones who has responded so well to the first line advice given. You can also take the credit for my GP now being much better educated too!
Is there something like this for the arms?
In the UK there is a therapulse device. More affordable. And you could try it on the arms.....
Therapulse uses vibrations afaik. So it's not the same thing right?
Correct. But Tomac is over$7000 & only available in certain US states.Therapulse is about £45. Different technology but the only alternative available outside USA.
Has it been studied to have the same or similar effect as the TOMAC?
I have the $7500 Tomac bands. Luckily my insurance paid for them. They are great. However the charge lasts 30 min. Then I have to recharge them. 30 minutes is not enough. I get rls more than once a night. I understand the company is improving them to make the charge last longer. I do sleep with the bands almost every night when I need them. Sometimes they stay on all night. I wonder if anyone using these band have been able to go off their meds. Thats what I was hoping for.
I got one but it did absolutely nothing. I am hoping to find a way to get the Tomac. Maybe travel to US for it. But the cost of all that and VAT @ 23% maybe and customs duties might put an end to that hope. I have a lot of research to do. Maybe my health insurance would pay something. Also our Health Board, the HSE. They have been know to pay for treatment abroad when its not available here, but do they even recognise RLS as an illness/condition.
Hi Joolsg, thank you so much for sharing that article, I am one of those disperately needing other option aside from drugs if I can help it. hoping nidra gadget will trully works and hoping other medical companies will come up something similar but affordable and can be accessed right away no matter which country you are from.
think I’ll stick with the TENS unit Joolsg at about £35.00 it works for me and does the same thing
Hope you are well
Brilliant thanks. Zero RLS on 0.4mg Buprenorphine and recuperating from surgery.
where do you get the tens unit
I bought it on line at Amazon
Just type in tens comfytemp
Hope this helps 👍
I don't think they sell it on amazon. That must be a knock off. It does not go on the market until Oct. 15. My dr. spoke to the company and ordered me one.
Hi I just purchased a tens unit, would you tell me how to use it and what settings to use for RLS. Thanks
Hi goad you managed to get the Tens is it the comfytemp
I place the pad at the back of my leg just below the knee and set the remote as follows
Press the T button once and the F button to anything between 4 and 6 then press the +- button till you get to 08 and see how that feels on your leg if that is comfy not too harsh it will time out after 15 mins then repeat on other leg
I gradually increased the buttons to 6 and 10 respectively over a few weeks
Hope this helps
Hi. I didn’t get the comfy temp, thanks for your info, I will try the one I have, if it doesn’t work I will get comfytemp.
I wanted to t letnyou know I did get the comfy temp, I couldn't deal with the other one too many wires. I love the comfy temp I have the wireless one, its different to yours , I don't have T and F buttons, I use it 2-3 times a night, Im hoping that's ok, for about 20 minutes each time, its takes the feelings away for a little while but somehow I am able to sleep feeling the legs, I'm having the best sleep, obviously I'm up starting the unit up, small price to pay to get some sleep. Do you think its ok to leave the pads on your legs all night? Im so grateful I found you and the info you gave. Thank you.
Aww you are very welcome.
Glad you found the right comfy temp and hope it helps
As you say the 15/20 mins on each leg before bed is a small price to pay if it means you get a reasonable nights sleep
Not sure about leaving the pads attached in bed never tried it
In case you not aware I have managed to get replacement sticky pads online via Amazon prime and batteries for the remote
You notice a difference in the pulse strength when you put new pads on whee the old ones lose their adhesiveness
Good luck
Nikon
well I do it 3 times a night so I thought maybe I could leave the pads on but thinking about it probably not a good idea. Good old Amazon what would we do without them.
I have just got the Tens Unit out and bought new electrodes. Could I ask you do you put them on your legs where the TOMAC goes. Last time I used them, a few years ago, according to the instructions, stuck them on my back either side of my spine. They worked for a few hours and then I would have to do it all over again. And my skin became irritated from the glue on them.
HelloI don't normally post as it is my husband who has the restless legs. Unfortunately has to take a dopamine agonist as he also has Parkinson's disease.
His rls is really terrible now but it had got to that point even before he went on the dopamine agonist.
The reason for this post is because of the mention of the Therapulse unit. He did try that but it had no impact at all but we got a refund.
With regard to buphrenorphine even if we did manage to get it prescribed I am unclear if it can be taken with other medications.
Thanks
I’m surprised to hear there are RLS patients who have no RLS two days a week…
RLS affects everyone differently. I know some who only have RLS once a month. Others who only have it when they drink red wine.Others who don't have it at all because they're on the right treatment for them.
Sure, I understand that, and these days my own RLS is tame, comparatively speaking, and there are days it doesn’t even occur.
But the people in the study…I imagine they would have been serious RLS sufferers, or they wouldn’t participate. Back in the day when my RLS was bad I don’t think there was ever a day that it didn’t occur. Boy - it was bad. 5 days a week sounds rather tolerable.
The definition of severe RLS is more than 2 days a week. So anyone with RLS 5 days a week is classified as having very severe RLS.But I agree with you. I had RLS every single day for hours for over 5 years before finding my solution.
ninds.nih.gov/health-inform...
What was your solution, Jools?
I pushed and pushed Prof Chaudhuri for Buprenorphine. He refused initially.Then he sent an email to say 'I have no objections if your GP agrees to prescribe.' Luckily I have a young, female GP willing to learn & read research.
She gave me a 3 week trial.
Night 1 it worked.
Zero RLS.
My score went from 38/40 to 0/40..
8 hour's sleep every night & I never get RLS now.
I did have severe nausea but took medical cannabis. Then I had opioid panic attacks so added 50mg pregabalin & I get head sweats but cetirizine and pregabalin help those too.
I stopped cannabis & reduced pregabalin to 12.5mg.
3.5 years later I'm still on a low dose of 0.4mg.
Several others have also now found complete relief on Buprenorphine in the UK.
It works.
Sorry, somehow didn’t see this, before.
Didn’t know opioids cause panic attacks - note to self: never take opioids…
Tells one something that you braved the severe nausea to get RLS relief, being that severe, prolonged nausea is also horrible.
I’m delighted that you’re doing so well, and that on a truly low dose or pregabalin!
I had reached the end of the road. Literally. I had decided to end my life ( logical decision) as the nightly torture was simply unbearable.When Buprenorphine worked instantly and stopped ALL my RLS I was determined to find a solution to the nausea and the panic attacks.
I took 50mg pregabalin for only 4 weeks and then reduced down.
Opioids are highly effective for severe, refractory RLS but the side effects can be overwhelming at first.
But there are solutions.
I hate taking meds to deal with side effects from other meds.
But your body adjusts to the opioids and you can then slowly reduce the other meds and the side effects diminish.
One day they may actually use money and do detailed research to find the real causes of this insidious disease and find a way to fix it without medication.
I'm going all natural and it's been really working. I have severe rls and have tried everything! I'm sick of western medicine and I'm all natural now. I take the correct supplements and am drinking a green juice that this chemist directed me to take to we will see. I refuse to take pills and since I've been off all the pills and went natural, it's a lot better. Can't you see that the meds will just make you sicker and create more issues, dr.s keep you sick, they need ur $ guys they don't care about us. I do air compression massage cuffs for my legs feet arms and hands as that's where I have it and it takes it away(rls) and allows me to lay and get rest. It squeezes my leg when I get the rls sensation and makes it go away. I keep my vitamin and minerals at good levels and stay hydrated and that help so much. This man has helped me and actually saved me from ending my life because like many of you I'm sure have all been there due to rls and it's debilitating affects. Please check him out yahkiawakend.com and do his juice that cured him of multiple diseases. PeopleI'm telling you that pills are not the way and I'm proof. Blessings to you all and please don't give up, there is relief out there and it's the natural way. I also have severe rls so I know what I'm talking about.
I'm glad you have found your solution.Believe me- I too have tried the 'natural' route.
I've wasted far too much money on devices, supplements and very specialist diets for long periods.
Nothing worked. The iron infusion didn't work.
A year on strict, organic, paleo, carb free, sugar free diet made zero difference- except leave me way too thin.
Most people have tried to find a med free solution.
A lucky few will find their trigger/solution.
Absolutely.
And I’ve sure thought of ending my life, too. It can indeed be a perfectly logical decision.
I had no idea that the device has a life of only 3 years. Then, apparently, you have to buy a new one. Planned obsolescence.
"Cost-Effectiveness of Tonic Motor Activation (TOMAC) Therapy for Patients with Restless Legs Syndrome: An Exploratory Analysis | Neurology and Therapy" link.springer.com/article/1...
Yep. Loadsamoney for the manufacturer.
NTX100 Tonic Motor Activation (TOMAC
Fisher Wallace Stimulator device
