Another very interesting article on neuromodulation for RLS.
It does point out the difficulties in using this therapy, as results are short lived after the treatment.
It raises some interesting reasons for RLS, including demyelination in the brain. (That would certainly explain why 30% of MS patients have RLS, as MS attacks the myelin sheath).
It highlights the dangers of dopaminergic drugs and the need to find alternative treatments.
It is promising that researchers are more aware of the dangers of dopamine agonists than the doctors treating RLS on a daily basis.
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Joolsg
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Well done Joolsg, you do manage to dig up a lot of great info. on what’s going on in world of research. I read it with great interest even though I didn’t understand most of it, apart from the Dopamine bits 🤣🤣 but it made me feel very intelligent just reading the big words 🤣🤣
I am really interested in this! I had a spinal cord stimulator inserted 2 years ago for chronic back pain, and it changed my life - it reduces pain by over 50%. They insert a couple thin wires along your spine to the mid-thoracic area and insert a device about the size of a Tic-Tac container under your skin above your waistline in the back. It's a fairly simple out-patient procedure. The device is charged every 5 days or so by just strapping a recharging belt over it for 30 minutes or so. The device is programmable so that the doctor that installs it can experiment with hundreds of different possible spots along the wires, and combinations of spots, to stimulate with imperceptable electronic pulses. I don't feel a thing, and don't even notice that it is there. I imagine the location of the wires and the type of modulation that might be used for RLS might be very different than for back pain. But the technology makes sense. If you can block nerve signals from the brain that lead to pain, being able to block RLS signals seems quite logical.
I just reached out to the company that makes my stimulator to ask them if they are also working on RLS. I'll let you know if I hear anything encouraging.
Thanks for this Jools it’s very interesting . I googled TDSC (the trans dermal stimulation via the cranium ) and it turns out that a company called flowneurosciences or FLOW offer a headset to purchase or rent that delivers this. They are promoting it as a treatment for depression, RLS wasn’t mentioned that I saw but it s food for thought. The company seem very genuine and caring.
Yes an area that has been getting some attention. I find we have a number of clinics in Australia, lots actually, offering Transcranial Magnetic stimulation (TMS) that is funded by Medicare for depression. But it is daily, 30 min+ for weeks. There is tDSC but I think it had similar drawbacks. tDSC can be done at home which may make it more viable. I think I saw a paper on ts DSC which is transcutaneous stimulation to the spinal cord with fewer sessions/wk and longer duration once it stopped. Vagal nerve stimulators may similarly be useful as a home treatment.
Yes, there is a lot of current research on vagus nerve stimulation as well. There do seem to be different delivery methods. Head pieces or devices taped to the spine.
Pretty good article and useful as reference, only a few vague points. If I didn’t misunderstand it, they are trying to stimulate the glutamate, which makes me wonder if this would promote sleeplessness.
The article keeps talking about the therapy calming the 'hyperexcitability'.
I don't know how it works, but perhaps by stimulating the pathways that normally cause an increase in GABA, they actually calm down the neuronal pathways?
It is a very complicated article and I certainly do not fully understand how the electrical stimulation can rewire/change the neuronal pathways.
Ah ok, I will really have to read it again, it doesn’t help that I have brain fog! It’s all very difficult stuff. Glutamate hyperexcitability is a thing I’ve come across a lot in articles as it seems to pertain to a lot of diseases, and I also suspect that the wakefulness I experience at night may have something to do with it. But it’s not something any ordinary doctors are going to understand and it’s difficult to find any clear explanations for how it really works.
John's Hopkins came out with some ground-breaking research on glutamate and RLS about a decade back. In the study, glutamate levels had a significant relationship with symptom severity. Another point they made and that I can relate to, is that the elevated glutamate explained why dopamine agonists tended to not help with sleep - I believe it is the main stimulatory neurotransmitter. They went on to explain that while patients with severe symptoms typically slept 5 or so hours a night, that they still functioned remarkably well, again implicating glutamate.
My understanding is that the gabapentenoid meds help with this issue. I've used both ropinirole and gabapentin. While the ropinirole makes me impressively drowsy soon after taking - that effect didn't seem to last, the gabapentin does the best for keeping me down for the count!
Yes you’re right about the research of course and I’m glad the gabapentin helps you. Hopefully you won’t augment on the Ropinirole. My impression is that gabapentin and pregabalin aren’t very good medicines and don’t help that many people. I was very sick on gabapentin when I tried it recently. Used low dose pregabalin many years ago but didn’t notice any effect on my sleep, in actual fact things may have gotten a bit better when I stopped using it. The only meds I now tolerate well are Zopiclone and Diazepam which act directly on GABA.
I’ve just finished weaning myself off ropinirole, kudos to this group for helping me make (and stick with) that decision ! While the gabapentin helps, the side effects are indeed difficult for me. Ironically when I use enough Gabapentin to get adequate relief from sensations and insomnia (around 1800mg), I am way mentally foggier than I am with 3 or 4 hours sleep and no gabapentin 🤦🏻♂️. Unfortunately these kinds of dilemmas & compromises seem all too common for folks in our situation .
Thank you for your reply , I will talk with my medical team about Zopiclone and Diazepam as it appears gaba/glutamate issues are a big factor with my RLS 🙏
Yes, I know what you mean, and I’m sure many of us have all sorts of co-morbidities that make it all much more complicated. Beware that doctors are very prejudiced against benzodiazepines and non-benzodiazepines (e.g. Zopiclone) or Z-drugs as they are also called, and may not want you to be on them. They nevertheless serve a good many conditions and I myself have been on them for over twenty years without any issues whatsoever. They still work for me, though not so well, and that’s probably more to do with disease progression than tolerance. Zopiclone makes me feel like myself very briefly. Unfortunately Buprenorphine that I’m on takes a huge toll on me in the daytime.
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