RLS and nicotine patch

[collageartist52]

hello friends,

I've recently tried the lowest dose nicotine patch for another set of symptoms that i have been plagued with for 6 years now. Nothing has helped me at all. It's possible i have had chronic undx'd lyme, or "merely" CFS, or fibromyalgia. All the symptoms are so similar. And i won't bore you all with the list! However, the patch has completely changed my life, within days. I feel like my old self most of the time.

Here is what else has happened. Part of my medical regimen to alleviate the RLS was a dose of gabapentin and clonazepam about 3 hours after dinner. This works, but i am usually asleep by then, so i set an alarm to take those pills. Since starting the patch, i have slept thru the alarm twice, since i am sleeping so much better. I have awakened several hours after the pills were due and wondered: did i even take them? And marveled that i had no symptoms of RLS at all. No pain anywhere. I've still taken the gaba and clona. But i am considering gradually cutting back and seeing what happens.

There are some old posts here from 6 years ago about nicotine and nicotine patches. I wonder if anyone out there is using them?

If i think WAY back to 40+ years ago, when i quit smoking...it was not long afterwards that all my problems, with many health conditions, started. Not saying one should smoke. But there are some excellent articles on the use of nicotine as a healing agent.

Here is one to get you started:

healthrising.org/blog/2023/...

Interested to hear from others on this.

J

[Madlegs1]

Very interesting.

Your body receptors would make for good study!!😎

[collageartist52 in reply to Madlegs1]

🤣🤣

[SueJohnson]

Interesting since nicotine is considered a trigger for RLS.

If you decide to come off the gabapentin reduce by 100 to 200 mg every 2 weeks to avoid withdrawal symptoms and of course if you decide to come off clonazepam you also need to wean off slowly.

[collageartist52 in reply to SueJohnson]

from a number of really old posts on healthunlocked, people have found relief from nicotine gum etc, in a pinch...i think this whole thing is a personal experiment! And thank you for your gabapentin suggestions!

[Rosyrestless1 in reply to collageartist52]

I've suffered for 30+ years and I also experience some sleep benefits and less symptoms with nicotine use. Not smoking. It's odd, but it does give some relief.

[collageartist52 in reply to Rosyrestless1]

😎👍

[LotteM]

Interesting! I am searching my mind, but can’t find it. About what Sergi Ferré, who wrote several papers about the adenosine connection in RLS mentioned about nicotine. There was some link to caffeine and since rhen some people have tried a cup of coffee in the middle of the night to quell their symptoms, whicked worked. For me too. Bit I don’t remember whether he also mentioned the role of nicotine. I dodn’t pay good attention, as nicotine brings it sown problems.

Anyway, I hope it keeps working for you without adding unwanted side effects.

[collageartist52 in reply to LotteM]

i have read that about adenosine also. This one focuses on acetycholine...and it's been helpful for long-covid, ME/CFS, fibrom, parkinsons...why not RLS? What have we got to lose?

[Elisse3]

Smoking can give a feeling of enjoyment so i am thinking it gives your dopamine a boost , the same with the nictotine patches. ?

[Madlegs1 in reply to Elisse3]

Makes scents! 😁

[collageartist52]

i believe that. And also there is the acetycholine connection. But yes, dopamine..why else would we smoke?

[Jerry57]

My 87-yr old mother smoked for nearly 60 years, and she says it helps her RLS. I'm always up for trying anything, so I experimented with nicotine gum a few years ago. Unfortunately, I couldn't get any relief. Glad it helps you.

[collageartist52]

you might consider the lowest dose 24 hr patch...i have not tried the gum, but i am game for anything,

[707twitcher]

I just started reading Andrew Spector's book, Navigating Life with RLS. He points out that there are three neurotransmitters at work with RLS - dopamine and adenosine which are not being processed by the brain adequately (there may be plenty in the body, but the receptors aren't working sufficiently), and glutamate (its role is to rev up other systems in the brain) which is overactive in RLS sufferers. He says that adenosine is just starting to get attention in connection with RLS. So you may be on to something if nicotine affects adenosine.

btw, I was a chronic lyme sufferer for 5 years; finally over it 4 years ago. 5 years on antibiotics 😱. If you want to do a private chat with me about it, feel free.

[collageartist52 in reply to 707twitcher]

thank you for your offer. For now,the lyme symptoms seem to have settled down with the nicotine patch, to a large degree anyway. I wonder how we tamp down glutamate.. i know that for me, excess histamine also plays a role in how bad the RLS is..that oxalates, collagen. It's a constant crapshoot

[707twitcher]

Here's an article from 2018 about the interplay of dopamine, adenosine and glutamate. It is far too long and scientific for me to be able to digest it in anything but small doses, but here's the conclusion:

"In conclusion, the main tenet of this essay is that a main mechanism responsible for PLMS and hyperarousal in RLS can be a BID(brain iron deficiency)-induced hypoadenosinergic state, with downregulation of A1R. This mechanism may disrupt the adenosine-dopamine-glutamate balance uniquely controlled by adenosine and dopamine receptor heteromers in the striatum and also the A1R-mediated inhibitory control of glutamatergic neurotransmission in the cortex and other non-striatal brain areas and in the spinal cord. We then provide preclinical and clinical evidence for a possible new alternative therapeutic strategy for RLS, increasing the adenosinergic tone in the CNS with ENT1 inhibitors."

I believe that the ENT1 inhibitor that is referred to is principally dipyridamole.

Hopefully there are researchers somewhere who are looking into this more...

The article link:

frontiersin.org/journals/ne...

[collageartist52 in reply to 707twitcher]

thank you for this one...i remember listening to a podcast about a year ago, talking about adenosine as the answer..and i think coffee stimulates adenosine. Do not quote me on that. We'll read and digest..thanks!

[SueJohnson in reply to 707twitcher]

Even the conclusion is far too scientific for me to be able to digest it!

[collageartist52 in reply to SueJohnson]

😮

[collageartist52 in reply to 707twitcher]

i have started carnivore diet after 5 years of reducing my plant intake slowly, since oxalates can be a real problem for RLS...if you suddenly go carnivore and have been eating a lot of plants for years, you will experience drastic metabolic symptoms that can be as terrible as eating too many oxalates...that is another long story..but here is something i found by googling symptoms of ketosis...ketosis promotes adenosine activity.

We already know that the keto diet is very helpful to people with parkinsons, and epilepsy. So why not try it for RLS? Maybe that has already been discusses here. For me, i am going full carnivore...me and plants have broken up completely. For those who might want to try keto...stay away from seeds and nuts and the greens..they are loaded with oxalates...read up on all of this and reach your own conclusions. We know that our ancestors thrived on meat...don't be afraid of it..just don't do bone broth etc...very high in collagen, which is another RLS monster.

Adenosine and ketosis

[restlessstoz]

Years ago when I was augmenting from pramipexole, I read on here someone getting relief from nicotine. My colleague had some chewing gum which he gladly gave me to try. It knocked the RLS symptoms on the head in about five minutes. However, it was a strong dose so it also made me feel a bit weird. I did adjust the dose and found it consistently helped with the urge to move symptoms and not knowing what else to try at the time, I thought it could help.

The problem then became anxiety which I have never really suffered and when I thought about what has changed in my life, all I could think of was the nicotine. I stopped it and the anxiety stopped but of course I lost a good thing which HAD helped my restless legs.

Fortunately I was reducing the pramipexole and eventually dropped it and after another awful period, buprenorphine was suggested on this site which my doctor was happy to try me on- given he'd tried every other drug known to mankind!

I am also one who can have a cup of coffee and it will stop the mild symptoms so that theory suggests for at least some people, these can be helpful. Good luck working out your own solution. I hope the current regime continues to help and keep you feeling YOU.

[collageartist52 in reply to restlessstoz]

very much appreciate hearing your story. Unless one has this condition, it's hard to understand how terrible it is.

[Kat343]

Hi everyone, great post. My HWP has RLS and PMLS, and tried the gabapentin a few years ago. I've been using organic cold pressed castor oil on feet for a couple of months now and I totally notice the lessened feet movement at night in bed, but he doesn't because he can't differentiate the RLS and his neuropathy. So I just started him on the gum yesterday and today, but here is MY update. I'm healthy, no real problems and I usually try any alternatives on myself along with him just to help monitor him... I just tried one piece of 2 mg gum an hour ago and after about 10 minutes, I was dizzy, tingling, a little nauseous and icky feeling. Its much better now, but UGH for me. Luckliy he has not had bad symptoms, so I'll gradually increase the nicotine dose on him. I called a friend who tried the nicotine last year and she said eat fatty stuff and something minty and it will help my symptoms. Had 2 pieces peppermint chocolate bark and it definitely helped a lot. Anyway, just in case someone has a similar reaction, it may help. I'm glad I found this post, thank you to all who contribute!

[collageartist52 in reply to Kat343]

i have not tried the gum because i did not want a sudden "shot" of nicotine. I have found the patches to be great! I am using the lowest dose. Some brands are perforated so you can even usse half. ..i tried going without for a couple of days and that was terrible! Also i noticed when i switched brands, i had an adjustment period where i did not sleep well at all one night. I felt agitated...so i took it off..that helped. It's important to put your new patch on in the morning..if you put it on at night, you might feel wired.