Ketamine and RLS?

[Doctorplacebo]

Hello all. I mysteriously found myself on this forum while searching my usual RLS (Restless Limb Syndrome) forum for people with RLS who had undergone IV ketamine treatment and whether or not it caused their RLS to flare up.

Fyi, RLS is another "invisible disease," like anxiety and depression, and most people with RLS suffer from both. I have read that 95% of people with refractory RLS (that means not responding to the usual treatments (there is no cure, just lots of drugs, with bad side effects) have a suicide plan. I have several.

My story is very long and complicated. Briefly, I am 62, a physician, retired early because I became too sleep-deprived to continue safely taking care of patients. After giving up my work and my sense of purpose, I gradually had to give up all the things that brought me joy, because I was just too sleepy to function. Depression and suicidal ideation began creeping in, as well as anxiety--I never know if I will be able to handle the things that everyday life throws at you, or if I will be too cognitively impaired from sleep-deprivation to respond correctly, and that make me very anxious.

Lately, I find myself ruminating on suicide almost daily. As a means of escape. I don't want to do that, though, because I don't want to cause my dear wife suffering and loneliness.

Serotinergic drugs all make RLS worse, sometimes horribly, as in unable to relax for even an instant, day or night. So all SSRIs, SNRIs, tricyclics are contraindicated. Bupropion didn't work.

My talk therapist was nice, but couldn't help the kind of neurochemical dysfunction I have.

I recently tried psilocybin mushrooms (I have memories of wonderful experiences in college) but failed to do my research carefully enough. Turns out psilocybin is a POTENT serotonin enhancer. I had a miserable afternoon trying to "rest" and enjoy the trip, with the expectation of miraculous relief of depression a la Michael Pollan, and instead found myself writhing and twitching for several hours. (If you don't have RLS don't take this as any kind of warning against psilocybin).

I tried TMS, but the first session caused intense pain in my eye that previously had a retinal detachment, so they had to decrease the intensity. My research the next day revealed 2 cases in which TMS appeared to precipitate retinal tears or detachments (in my case, if it occurred in my functioning eye, I would be blind). Another potentially life-saving treatment denied me.

That left ketamine. I read the research studies showing good responses in refractory MDD, especially in relieving suicidal thoughts. I was very hopeful (hope itself is a great antidepressant, while it lasts). I am scheduled to start treatments October 22.

Then, remembering my experience with mushrooms, I looked deeper. Turns out ketamine does increase seritonin. It also increases brain glutamate, another neurotransmitter implicated in RLS.

I have not found any research studies confirming that subanesthetic doses of IV ketamine cause exacerbations of RLS so I turned to the best source of real information: patient support groups!

So here I am. Finally. Is there anyone on this forum with RLS who has undergone IV ketamine therapy for depression, and was it Heaven or was it Hell??

If you read all that, thank you! Wishing you all a restful night's sleep and a quiet mind.

[Focusedmind]

My husband has dealt with RLS since he has been an adult. Now, at almost 70-years-old and finally retired, he deals with sleepiness by napping during the day. He refuses to take medicine, but I don't think his case is as severe as yours. I assume you have tried various sleeping pills like melatonin, etc.

I am so sorry you are dealing with this and the side effects of sleepiness as an ongoing problem! Your description of having to endure that lifestyle helps me understand your plans for suicide. And I appreciate that you know how much it would hurt your wife!

I also have no answers for you regarding ketamine. My only experience with this drug is that my 27-year-old son has taken it twice and had wild hallucinations where he thought aliens were abducting him. I wish you well, my friend.

[Skye012]

I’m definitely not sure, but my psychiatrist is always monitoring my serotonin selection syndrome possibly. I did ketamine only once for depression, but I couldn’t tolerate dissociation.. she now recommends Gapapentin for RLS, anxiety and Aud. But I don’t want to give up all my meds so that Gaps can replace them.

[LifeIsThePitts]

I have been undergoing TMS treatment since Feb '22, I did 2 clinical Ketamine infusions prior to starting TMS and I take psilocybin mushrooms 🍄 and medical marijuana as My mental health medicine cabinet.

I do not have RLS...but if you had a bad reaction with a psilocybin trip, I don't know if a full dissociative Ketamine infusion would be a good idea. I'd definitely consult the clinic you're going to be going to for the treatment. Tell them about your RLS and ask them for advice prior to your first appointment.

The Ketamine experience is intense and profound...it was an amazing experience. But I won't do them again. My sensitivity to anesthetics made me lethargic and extremely fatigued for days after my second infusion. That's when I started TMS and that has become my #1 treatment option. I'm so sorry you couldn't move forward with that protocol.

[Doctorplacebo]

I don't have any problem with dissociative or hallucinogenic trips. It's the unbearable restlessness from the augmented RLS that I want to avoid. So, yes, I will try and get the doctor to have a conversation with me before starting ketamine treatments. Hopefully he is knowledgeable about RLS.

[Kinlay]

I did not do IV, but injection. I had one low dose and it was wonderful. My mood was lifted incredibly for a few days after as well. BUT, I had an incredibly bad, painful episode with my bladder. It turns out that ketamine can cause serious, irreparable bladder damage. While it usually occurs with high dose, long term use, it still triggered a really bad attack for me. It was weeks before I stopped hurting. I basically had all the symptoms of a severe UTI without any actual infection. I do have a history of bladder issues, so that probably played a part, but it's something to be aware of.

[Mofro]

Hello Doctorplacebo.

I've had RLS for years, albeit it has been on and off, not constant. The trigger for me seems to be when my anxiety gets worse. The treatment I've used is Ropinirole 1 mg. a couple of hours before bed, and it controls it well for me. I've never had any negative side effects from it as well.

I've been taking it constant for the last couple of years, because I developed a case of insomnia from severe anxiety and depression due to my current life situation. My insomnia made both the anxiety and depression worse of course, but luckily I've gotten that under control through medication. I'm a 67 year old male, and have found myself very alone and isolated from life after losing much of what was important to me over the course of the last 5 years. I feel a complete lack of purpose or joy for most anything, and many days I wonder why I'm still here, so I can empathize with your suicidal ideation and I'm sorry you're experiencing that.

From time to time I've try to discontinue my Ropinirole, but often find that I start getting RLS right before bed, or when I lie down. RLS seems to know when you want to relax which compounds the frustration of having it. I'm at a point now where I don't even want to try discontinuing the Ropinirole after failed attempts, because sleep is very important for my mental health and I've found taking it is harmless (that I know of).

In 2019 I tried ketamine IV treatments for MDD, as I also heard it was effective for those with treatment resistant depression. I did the usual course of 6 treatments at the beginning, which I unfortunately found to be ineffective for me. I was asked if I would like to try a couple of more treatments, but declined due to the cost as I was paying out of pocket. The doctor administering it agreed that it probably wouldn't do any good, given the lack of response I had from the first 6 treatments. I don't remember if I was taking Ropinirole for my RLS at the time or whether I was even having issues with it, but I don't remember it causing my RLS to flare up either.

I will say that the treatments were a beautiful experience for me, even given that they were ineffective for my MDD. I experimented with psychedelics when I was younger, such as LSD and mescaline, but the ketamine made those experiences seem tame in comparison (in a good way). I remember telling the doctor after a couple of my first treatments, that I wouldn't have cared if I ever came back. It's very hard to describe the experience, but I distinctly remember feeling totally disconnected from this world and all of the problems that went with it. If that feeling (not being disconnected from the world of course) could have carried over after the treatments they probably would have been helpful. During the treatments I was still aware of my surroundings, although they were like looking through a kaleidoscope, and was able to communicate with the doctor as well. I would take a playlist of music with me to listen to during the treatments (kind of like space music) which made them more enjoyable. After the treatments I was pretty much drained for the rest of the day and just rested. Other than that I didn't have any negative side effects.

I know they have other treatments with ketamine such as a nasal spray called esketamine (Spravato), which I haven't tried but may some day. There are also some companies offering low dose treatment at home that are taken orally, but from my research those seem kind of shady and I don't think I'd ever try it. From what I've researched, your support is through text messages and there have been issues with people getting their ketamine on time (no thank you).

As they always say, this was just my experience and YMMV, and as suggested you should talk to your doctor before the treatments concerning your RLS. I wish you the best and hope this was helpful in some way. Good luck with the treatments if you go forward with them.

[Doctorplacebo in reply to Mofro]

Hi Mofro. Thank you for your comprehensive and sympathetic response to my question. Yes, it was very helpful.

I'm not clear when you said "luckily I've gotten that under control..." whether you meant the insomnia or the depression and anxiety. I hope all three, but if not, I am sorry for your sense of loss and isolation and am glad that at least your sleep is under control.

Sleep is so important. I believe many people with sleep disorders are incorrectly diagnosed--and treated for--depression, instead of for their sleep disorder. I realty feel that if my sleep ever normalized my anxiety and depression would vanish.

It's good to hear that ketamine did not exacerbate your RLS. I have since spoken with 2 anesthesiologists running highly regarded ketamine clinics and neither have had any clients experience RLS flares during infusions. So I am comfortable going ahead with it. It's disappointing that you did not have any lasting benefit from it but the experience sounds wonderful.

I too experimented with psychedelics in my younger days. Also, I worked at a primate research center on the Caribbean Island of St. Kitts (sort of like The Island of Dr. Moreau haha) where we used ketamine to anesthetize the monkeys for procedures. A couple of us human primates experimented with the ketamine and , wow, complete dissociation and translocation to another universe, another life. But for me, no perspective-changing spiritual insights like LSD, so I am surprised to hear you say that your clinical ketamine experience was far more powerful than LSD. They must have given you a pretty high dose of ketamine at that clinic.

So anyway, I am going to open my wallet and go ahead with this. At least it will be 6 days that I am not lying around the house doing nothing.

(I remember when I was in practice I had patients whose primary social life was going to doctors. Now I am one of those patients.)

Thanks to all for your kind responses.

-Paul

[Mofro in reply to Doctorplacebo]

Yes, I did mean my insomnia. Having lived with anxiety and depression since I was 16, I feel it will be part of my life until the end. Most of what I'm experiencing now is again, a reflection of my life now and what I've lost in a relatively short time (job, family, friends, house that I owned, my mother) and the isolation from all of it. The anxiety keeps me from reaching out more than I should, but that's nothing new. I've always been a person that needed space and was for the most part happy with being by myself, but at the end of the day I really do need people to interact with face to face. I need to be able to share things, have conversations (more than superficial) and most importantly laugh with to name a few. A hug now and then would help immensely too I'm sure. I don't have that now, and often feel as if I'm dying from the inside out.

It's ironic you should mention how some of your patients social lives was going to the doctor, because that describes me at this point. It's either been counseling (not getting any currently), doctor's appointments or physical therapy for age related issues. Yeah, used to be it was just the mental things, now it's physical issues on top of that. I get tired of hearing that something is degenerative this or that, or arthritis every time I have an x-ray quite frankly. Turning back to dust I suppose. I sometimes just drive endlessly or try to go walk somewhere where there are people and in nature, but I feel invisible to be honest. I honestly try to put myself out where there are people, and if someone starts a conversation I'm fine, but I've never been a great ice breaker. The other thing I can depend on to get me out of the house is needing groceries. I just have to keep telling myself that it won't always be this way. I have to or the alternate option isn't very appealing as you probably are aware. I really don't want to die yet, but the thought does cross the mind. Never tried it and never will thankfully.

I'm glad I was able to help in some way. That's one thing I try to do on occasions that present themselves, because it is true if you do something for others it helps take your mind off of your own problems. That's one of the major issues with me and being isolated, not feeling as if I'm useful to anyone anymore. I also know the saying, "it could be worse" is also a universal truth. I try not to say it couldn't be worse, because I've proved that wrong too many times.

As for ketamine blowing LSD away, I would have to assume the IV treatments give you a stronger dose than the other ways I mentioned in my last post. Either that or I had crappy LSD. 😊 Sounds as if you've already had some experience with it. My treatments started at 50 mg. over 40 min. and the last one was 150 mg. over 60 min. (140 mg plus 10 mg over 2 min up front). Since I had the treatments, I often wonder if they would have been more beneficial if I had some type of counseling after the treatments to talk about what I experienced. I know some places do that.

Again, I wish you the best with the treatments and hopefully getting your sleep under control. You might think about taking some music with you, as it did add to the experience for me.

[JamimaH]

I just finished a 5 day ketamine infusion for Endometriosis pain after surgery failed to help.

I get RLS probably a couple of times a month and not super bad, I usually find a cramp-eaze and 3 puff of ventolin do the trick (I’ve found a lot of people don’t know about the ventolin trick, I don’t know why it works but my MIL recommended it after her drs told her about it and it really can work)

During and now after my infusion, my RLS is awful, it’s everyday, multiple times a day. I’ve had to start having my usual stuff with additional benzos (Xanax, Valium depending on how awake I need to be) so it definitely did not help me, but we’re definitely all different and I hope others find it works for them ☺️