RLS OPIOID REGISTRY UPDATE

[Joolsg]

The Massachussetts RLS Opioid Registry, with over 500 participants, shows that suicidal ideation is still quite high amongst those on opioid treatment. It is interesting that it's lowest among methadone users, as methadone gives the best cover and the best sleep. There are quite a few members of this forum taking part in this Study and Dr. Winkelman's assistant has confirmed I may share the information.

massgeneral.org/assets/mgh/...

[Typicallygaslit]

Sadly I had to quit Buprenorphine as it made me extremely depressed, and over time the situation got so bad I was crying non stop (while also so tired I couldn’t get out of bed). So that was that. The fact that I don’t tolerate medication adds salt to the injury.

[Joolsg in reply to Typicallygaslit]

I have heard this from many others. I developed panic attacks and severe anxiety on buprenorphine but Dr. Buchfuhrer suggested I add a small dose of pregabalin. In my case, it completely resolved that feeling of dread. Others have switched to oxycodone and the depression lifted. What are you taking now?

[Typicallygaslit in reply to Joolsg]

Yes, you suggested the pregabalin. I had some gabapentin at home from a previous trial, and just felt very sick on it, so don’t feel like carrying on. It all got a bit hectic just before Xmas so I asked my doctor for ‘anything’ and suggested that morphine might be better than codeine. He gave me oramorph which I don’t like much because of the sugar. Not least since sugar can trigger RLS. However, it has helped in the past so I thought it’d be ok. I tried to switch but it didn’t go smoothly. The RLS came back with a vengeance, the morphine didn’t seem to do anything at all, and I’ve had to taper off gradually, meanwhile experiencing severe fibromyalgia symptoms (so worse than usual in other words). I’ve used small doses of both in the meantime, gradually cutting down on the Bup. Also had some old codeine at home which perhaps is better. I might be better off on oxycodon if my doctor is still willing to help. I worry that he’ll find my situation so messy that he won’t want to carry on trying things out. However, it would seem to be the only solution.

I also worry that the codeine might increase the insomnia. I’m having to take some sleeping tablets on top to manage the sleep, and obviously have to be careful. However, at the moment there’s just no straightforward solution. I obviously can’t take something that makes me so tired and depressed I can’t function at all, not to mention driving to appointments. I also had severe nausea/anorexia and a horrible sensation of hotness.

Buprenorphine is different from other opioids as it’s a Kappa receptor antagonist, and I think this is where the problem lies for me. I don’t seem to tolerate anything that fights depression in other people.

[Joolsg in reply to Typicallygaslit]

The only other thing I can suggest is medical cannabis. It works really well for fibromyalgia & sleep.I do hope you find a combination that works.

[Typicallygaslit in reply to Joolsg]

Thanks Jools, yes it seems to work for some. I’m exhausted just thinking of all the trouble and expense, only to find that I don’t tolerate it either. I could be wrong but I have problems with anything that increases serotonin and I believe cannabis would do that. I will continue to think about it…

[Totolover in reply to Typicallygaslit]

Was the med for RLS? I use Ropinerole -4 mg/day. Sometimes that isn't enough. I discovered, quite by accident, that if I use a gun type heavy duty massager on my legs when it starts, it really helps.

[Joolsg in reply to Totolover]

Ropinirole will lead to augmentation ( an increase in severity of RLS symptoms). If 4mg isn't enough & you sometimes take more and have to.use a massage gun, it sounds like you are in augmentation.Don't increase the dose. Ever.

Read the pinned post on augmentation. Read everything you can about RLS and augmentation because most doctors know nothing. They think it's a safe Parkinson's drug but in RLS, it overstimulates the D1 dopamine receptors and they start to scream out for a dopamine hit. That drives the disease and makes it far more intense.

Most people on this forum have experienced it and we help others through withdrawal and onto meds that cover their RLS.

Read the Mayo Algorithm in full. They now do not have dopamine agonists as first line treatment and most US experts will only take on patients who agree to get off Ropinirole/Pramipexole and the patch.

Also get full panel fasting bloods to ensure your serum ferritin and iron are above the recommended levels for RLS.

[Totolover in reply to Joolsg]

Thank you!

[Kakally]

Excellent! Great to add to the ammunition well done Joolsg 👍

[Kakally]

obviously not great about many of us having suicidal ideation but great that methadone used correctly is a very useful and ‘safe’ drug

[Hidden]

Good afternoon, Joolsg. In the short time that I've been posting here, I've very much appreciated your insights, and the many kind and considered replies to my comments and to the entreaties of others that you've posted in reply to the quests for relief. It is with my utmost respect, therefore--and with the sincere hope that my reply will be received with the grace that you and others heretofore have shown--that I make the following comment.

Had I not earlier chosen the suffix "Iconoclast," the information at the link's destination likely would have precipitated my doing so. Frankly, I am astounded at the posted results. My astonishment is not that the results demonstrate a predilection toward suicidal "thoughts" or suicidal "ideation" (documented elsewhere), but that they demonstrate to me the exact opposite: that far from contemplating an end of life, the percentage of RLS sufferers who do so is relatively small.

Apologies if I've overlooked or misinterpreted the data, but if I understand the linked data correctly, there appear to me to be at least two major fallacies in the publication: first, the absence of a control (i.e., how much suicidal "thoughts" or ideation is the "norm" among the general population); and second, in my opinion and experience, a finding that "10%" of those afflicted with RLS are prone to suicidal "thoughts" or ideation strikes me as absurd.

At the risk of inviting an involuntary commitment based on what I now suggest rhetorically: RLS suffering aside, I venture that there are only few among us who have not, at one time or another during their decades of existence, thought that the burden of life's existence was too great to endure. And for those of us suffering with RLS--even without other afflictions--I further venture that far greater than 10% wished that some unseen force had come to their rescue to relieve them of yet another day of their never-ending torment.

In my opinion, the nebulous concept of suidical "thoughts" or ideation" is so very far removed from the act of committing suicide that the very use of the terms "suicidal thoughts" and "suicidal ideation" is itself meaningless. Many of us who may at one time or another "wished that they were dead" do, in fact, have the means of ending their existence. Yet they never actually would do so. And many who may contemplate suicide never would admit same to another--even in a venue that purports to be annonymous.

I understand that some countries (Canada) recently have passed legislation allowing for end of life for those who suffer from intolerable medical disorders. Perhaps statistics from those who actually proceed with their demise under programs such as these might be a better yardstick?

In my opinion, if the information found at the link is supposed to demonstrate a death-wish of those suffering from RLS, it failed to do so. It is, to me, yet another illustration of why I have ever decreasing respect for the so-called "sleep experts" who spin available information to promote their agenda de jure no matter how baseless or incongruous the support for the agenda may be.

Be well.

[Joolsg in reply to Hidden]

Thanks for your considered response. You make a very good point. However, all these patients are on opioids, which generally give the most effective cover for RLS. I'm sure the figures for RLS in general will be much higher, especially for those on dopaminergic drugs.I agree with the points you make, but a study like this can be very useful to persuade the medical profession that RLS is a serious disease and should be taught to medical students and doctors.

As mental health is now beginning to be taken more seriously, the study adds to our armoury.

The results on methadone could also help us here in the UK, where methadone is not prescribed ( except to those in prison).

Sleep well.

[Hidden in reply to Joolsg]

Hi, Joolsg, and thank you for considering my reply in good faith.

I appreciate that the statistics were for those using methadone. And I confess ignorance as to how the statistics for methadone users will compare to those on dopamine agonists and other medications. But I think that, insofar as the linked data pertained to methadone users, it made my inferences stronger rather than weaker.

A person with a full bottle of Whiskey (Scotch, if you prefer) in their cupboard is more likely to contemplate that second drink to drown their sorrows than is a person practicing temperance.

Be well.

[GuillaumeL in reply to Hidden]

Just for context, the medical assistance in dying in Canada is very specific. "You must:

have a serious illness, disease or disability (excluding a mental illness until March 17, 2023)

be in an advanced state of decline that cannot be reversed

experience unbearable physical or mental suffering from your illness, disease, disability or state of decline that cannot be relieved under conditions that you consider acceptable

You do not need to have a fatal or terminal condition to be eligible for medical assistance in dying."

I guess that RLS would fit within that description if no treatment has worked and if co-morbidity have developed.

[Hidden in reply to GuillaumeL]

Good morning, GuillaumeL, and thank you for providing context. Incidentally, the reason that I had mentioned Canada was because I recently had read a news article that suggested that, in response to one patient's "complaints" about chronic pain, their doctor tersely had suggested that they consider availing themselves of the new Canadian law.

Be well.