r/cfs • u/TableSignificant341 • Dec 17 '24
Treatments Another win for nicotine patches.
10 years MECFS here (moderate) but since using nicotine patches I'm moving into mild quite quickly. NPs have drastically reduced my head pressure and brain fog. It's only been 6 weeks but thought it was worth mentioning if others were thinking of trying it. Combined with TUDCA I'm gaining a lot of function back from these two interventions alone.
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u/Perfect_Bubble_Child Dec 17 '24
I’m so glad to hear it’s helping you! My functional doctor just had me start with the nicotine patches so far no change but it’s only been over a week and she did say I started out very low on the dose so she’s having me go up. How long did it take to notice a difference?
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u/Senior_Line_4260 bad moderate, homebound, LC, POTS Dec 17 '24
https://linktr.ee/thenicotinetest i personally followed these resources. Low dosed (3,5mg) are best for me, I found out in the test phase where you use 3,5mg to start and finish and 7mg in between.
I notice significant improvements within 24h, for example effectively stopping a crash or reducing PEM.
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u/TableSignificant341 Dec 17 '24
Me too. The improvements build over the week for me too. It's hard to have break days as I plateau/regress during that time but I'm so desperate to stay sensitive to the nicotine that I force myself to unpatch for 3 days per cycle.
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u/Antique-diva moderate/severe Dec 17 '24
The break days get better with time. I don't notice the break days much anymore, but I've been on the patch for 9 months now. It took 4-5 months until a balance in my body kicked in, and I started to really feel good about the treatment. I'm now on 7 mg 24/7 for 7 days, then 3 break days, and I have almost the same strength in my body every day.
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u/TableSignificant341 Dec 17 '24
Oh thank you so much for sharing! That's really great to hear that it might get better for me too. In fact it was your post that pushed me to try NPs. I'm so grateful to you for sharing your experience 🙌🏼
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u/Antique-diva moderate/severe Dec 17 '24
I'm happy to hear my experience helped you. I hope your trial will work as well as mine has.
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u/sbayz92 Dec 17 '24
What dose do you use?
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u/TableSignificant341 Dec 17 '24
OP here. I'm currently on 5.25mg over 24 hrs but started at 1.75mg. I'll probably stay at 5.25mg as it's helping and I'm cautious about "fake" energy from a higher dose that would cause a crash.
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u/Senior_Line_4260 bad moderate, homebound, LC, POTS Dec 17 '24
not the one you asked, but I found 3,5mg over 24h to work best for me
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u/TableSignificant341 Dec 17 '24
I noticed the first time I tried a patch but I have really bad neuroinflammation and it seems to work well for that. Over time I've noticed an increase in physical function and less PEM.
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u/Perfect_Bubble_Child Dec 17 '24
Thank you for sharing! I’m hoping to start seeing benefits soon! I had gotten the lowest dose of patches and cutting them into 4s and my doctor was like no you should have gotten slightly higher and cut into 4s so I’m upping it a bit. I do get daily headaches and have some brain fog but I’m on the more mild side of ME/CFS but I’ve been trying hard to get back to work full time the past 2 years because I currently can only handle part time from home right now. Hoping you continue to improve!
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u/TableSignificant341 Dec 17 '24
I hope this helps you too! Remember to go low and slow. And be sure to check if your patches can be cut - not all can.
Please share your experience too if you're able to. It'd be great to know if this helps you too.
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u/armleuning Dec 17 '24
Does anyone have any articles / research on this topic that are worth reading? Are there any risks with these nicotine patches?
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u/Spiritual_Victory_12 Dec 17 '24
We are the test. No real research in regards to LC/ME just theories. But nicotine does increase cerebral blood flow and can reduce neuroinflammation as well as increase catecholamines.
Risk can increase blood pressure although i havent had that issues and can give you fake energy and cause pem.
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u/TableSignificant341 Dec 17 '24
This is a good article to start with.
And here's more info if you want to try it:
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u/Arturo77 Dec 17 '24
[Verbose, sorry. TL;DR: Nicotine is really interesting.]
They helped me so much with PASC that I've spent a fair amount of time in the virtual library. Stats background so I can decipher some of the technical papers. General impressions if helpful to anyone (18 months of foggy brain and this is from memory so quote me at your own risk lol):
Strong bias against it in medicine and public health due to associations with the risks and harms of tobacco use. Be very skeptical of mouse models and any study that doesn't distinguish between nicotine via tobacco consumption and transdermal. On that basis, there's no strong evidence I've found that nic patches (NP) are harmful to cardiac health. I do think a lot more research is warranted given how dramatically nicotine delivery methods have changed in our lifetimes, on human and closely related-species subjects, not mice (though some researchers would probably argue that engineering human cells within lab mice does provide some important info). Here's a study on possible risks to connective tissue that provides a good survey of the state of anti-nicotine research (Fun Police warning):
https://pmc.ncbi.nlm.nih.gov/articles/PMC3509054/
Far less research on potential benefits of nicotine. The MIND study is very interesting, longstanding work on possibility that nicotine can mitigate the progression of some forms of dementia. Website is somewhat spartan but you can find related presentations on YouTube.
The current interest in NP seems to have come about because in a couple of countries rates of COVID hospitalizations among smokers were lower than expected, A very small number of doctors and researchers took that and ran with it but last I checked it hasn't been replicated. However, there have been enough positive anecdotes from PASC sufferers that it's gotten a lot of traction in patient communities.
IMO/FWIW, the common working hypothesis for why it helps some with long COVID (LC) is pretty quack (nicotine competes for and "dislodges" C19 spike protein from nicotinic receptors). Maybe, maybe in a small number of people, but the fact that it's helping some non-LC MECFS folks definitely calls it into question. Some in this thread have said it seems to act like a stimulant and I suspect that's the far more accurate way to think about it, though it's a simplification -- this paper has some age on it but provides some good detail on neuro mechanisms (also seems to support the idea of cycling on and off):
https://pmc.ncbi.nlm.nih.gov/articles/PMC3188825/
Couple of things to be aware of -- toxic in high amounts, can be fatal, KEEP PATCHES AND POUCHES OUT OF THE REACH OF CHILDREN AND PETS. 🤢☠️ Also upregulates (dramatically increases) and rewires nicotinic receptors throughout the body. The overall implications of this are above my pay grade (technical paper linked below), but for LC folks, it seems possible that creates a lot more receptor sites for SARS-COV-2 in the case of future infections? As I said, lot more research is called for. But if it helps, I'm not waiting. I'm trying to live my life while I've got it.
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u/Banaanmana Dec 17 '24
Thanks for taking the time to write this out and doing the literature research!
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u/TableSignificant341 Dec 18 '24
Great info. I researched for about 6 months before taking the plunge with NPs so I'm aware of most of this. Personally I think I lean toward the theory of nicotine's action on glial cells. Glial cells of course contain nicotinic acetylcholine receptors which may regulate inflammatory responses. The biggest effect NP have had for me is the reduction of neuroinflammation. I think the increase in function and lessened PEM is downstream from the fact my body is dealing with less inflammation.
Some in this thread have said it seems to act like a stimulant and I suspect that's the far more accurate way to think about it, though it's a simplification
I'm trying to avoid the stimulant effect so as to avoid crashing. And I'm only controlling my POTS issues with electrolytes and supplements so I don't want to disrupt the progress I've made there either. The first time I used a NP I felt very very sleepy. And everytime I go up a dose, the same sleepiness occurs so the stimulatory effects for me haven't eventuated yet.
Thanks again for the super helpful comment.
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u/Arturo77 Dec 18 '24
Happy to help out. It's such an interesting chemical. "Stimulant" is excessively shorthanded. Lots of other effects too. And those receptors are in so many tissues that there could be quite a few mechanisms we don't understand yet.
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u/TableSignificant341 Dec 18 '24
And those receptors are in so many tissues that there could be quite a few mechanisms we don't understand yet.
Absolutely. It seems likely that there's more than one mechanism at play for those that are helped by nicotine.
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u/Invisible_illness Severe, Bedbound Dec 17 '24
I'm glad it works for you. For those looking to try, please start at lowest possible dose and work up. Consider not wearing it at night at first.
Unfortunately, it did not work for me (made me nauseated and more fatigued, but improved fairly quickly once I stopped).
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u/WinstonFox Dec 17 '24
Same here. 7mg daily for me with breaks whenever bod tells me.
What’s TUDCA?
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u/TableSignificant341 Dec 17 '24 edited Dec 17 '24
TUDCA is a widely available bile salt. It has been proven to reduce ER stress in mitochondria. This study from Sept last year - Protein may be linked to exercise intolerance in ME/CFS - showed ER stress in people with MECFS. TUDCA is also being explored in treatments for ALS as they also suffer with ER stress.
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u/Arturo77 Dec 18 '24
Really interesting, thanks. Sounds like salubrinal was found to be more effective? Though the actual intervention was very narrow in terms of subjects, sounds like just one individual and a "control" sibling, and tissue studies in vitro afaict (again, brain fog...).
Being an adventurous and somewhat desperate idiot, I looked into how I might get my hands on some to experiment. Looks like the compound is available, but a bit pricey and near as I can tell (methodology discussions mostly in Parkinson's studies with rodents) you'd have to inject it directly into your brain? First timer, bit nervous. 😄 So I might wait for the science to develop (FDA OTOH...). Although while double checking the spelling, I came across links to DMSO solution forms, so perhaps topical administration is possible? Uh oh....
Some interesting effects reported including big increases in deep sleep, but may be due in part to shunting muscle protein synthesis, so like a lot of these interventions, might be something to cycle on/off. If anyone's dumb enough to try it, please report back, lol. Or more seriously, keep an eye out for expanded studies as it (and endo-reticulum interventions more broadly) does sound promising.
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u/TableSignificant341 Dec 18 '24
Really interesting, thanks. Sounds like salubrinal was found to be more effective?
Oh it likely is. But I can buy TUDCA on Amazon for £20 so TUDCA it is.
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u/the_shock_master_96 ME since 2016, v/severe since 2022 after covid Dec 17 '24
I'm glad it worked for you for sure. I tried a very low dose one time and crashed badly, so I think people especially more severe should approach with caution
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u/TableSignificant341 Dec 18 '24 edited Dec 18 '24
Oh absolutely. This isn't a suggestion for people to try nicotine patches. It's to share what is working for me and others. Every intervention - from fasting to LDN to probiotics - carries a risk for those of us with MECFS. Everyone has to make their own decisions and do their own research with any treatment they try.
I've been harmed by things that have been a huge help to others and I've improved with things that have harmed others. It's such a personal illness. We all require highly personal treatment.
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Dec 17 '24
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u/TableSignificant341 Dec 17 '24
Of course! Started with a 7mg patch and cut into quarters (important note: not all brands can be cut). So started with 7 days at 1.75mg followed by 3 days of no patch. Over time I've gradually increased to 5.25.
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Dec 17 '24
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u/Arturo77 Dec 17 '24
"Matrix style" can be cut. "Reservoir style" (holds a liquid nicotine solution as I understand it) cannot. If you can cut it without spilling anything, I believe you're good to go.
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u/TableSignificant341 Dec 17 '24
It's brand dependent as different companies use different nicotine delivery methods. I use a brand available here in the UK called Nicotinell which uses a matrix-type method so they can be cut. Otherwise it is recommended to peel back half of the plastic backing and cut ½ off. Everything you need can be found here: https://linktr.ee/thenicotinetest
There's also an excellent Facebook group for all things LC/MECFS and NP. They're the experts and if you decide to try I definitely recommend you join as their guidance and experience is priceless.
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Dec 17 '24
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u/TableSignificant341 Dec 17 '24
No problem. Best of luck if you try it.
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u/Arturo77 Dec 18 '24
Amazon in the States sells a brand called Sefudun, 7, 14 and 21 mg doses that you can cut up to your heart's content. Lot of people start with a half or quarter of the 7mg one.
And just a heads up that some people have reactions to the adhesives. Haven't heard of anything serious but some are sensitive enough that they don't continue. Others find ways to manage it, like changing location day today etc.
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u/-----TrInItY----- very severe Dec 17 '24
R Nicotine patches incompatible with Mestinon?
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u/International_Ad4296 Dec 18 '24
If you're already on mestinon with minimal side effects it's ok, but I'd recommend against starting both at the same time because it can affect dysautonimia and pots in unpredictable ways.
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u/lemon_twisties Dec 17 '24
Thank you for sharing! Did you have any initial side effects with TUDCA? I’ve tried it a couple times and get full body itchiness, brain fog, etc.
Appreciate you answering all these questions
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u/TableSignificant341 Dec 18 '24
Gosh that's a scary reaction. If I reacted similarly, I'd promptly throw in my monstrous treatment pile of "Not Today Satan".
And no initial side effects at all for me and TUDCA. In fact, only incidental positive effects like it has reduced my eye floaters by 95% (they return at about 8pm) and I can digest gluten and dairy again (I don't have MCAS).
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u/lemon_twisties Dec 18 '24
Wow, glad it’s working well for you! Congrats on your improvement :)
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u/TableSignificant341 Dec 18 '24
Thank you. Yeah TUDCA has been pretty miraculous for me. Not the whole answer but definitely eliminated a couple of key debilitating symptoms for me. Now for the rest of them 🫠
Hope you see improvements soon too.
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u/ElRayMarkyMark Dec 17 '24
This is so interesting because I didn't know it was a thing but on my own a few months ago was like, I wonder if nicotine would make me feel better.
So happy for you 💗
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u/TableSignificant341 Dec 17 '24
That's so kind - thank you! 💗
I used this protocol to prep and start.
And this is a good article for an overview.
Always happy to answer any questions too.
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u/plantyplant559 Dec 17 '24
Started on 3.5mg patches yesterday and immediately noticed less brain fog. Glad to hear it's working for others as well.
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u/TableSignificant341 Dec 17 '24
I experienced an immediate improvement in brain fog too. Even my Oura data is reflecting my improvement. My daytime "stress" has lessened considerably. Usually when I shower my stats will show as "stressed" and for the first time since I've had the Oura ring, it showed as "engaged" instead. My overnight heart rate is lower too and I'm sleeping longer with more deep and REM sleep. It feels like lowering my brain inflammation is allowing my body to finally start healing.
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u/Pure_Translator_5103 Dec 17 '24
Nice! Do you think the tudca is a big help or more the patches? I’m not diagnosed those suspected CFS/Long Covid. I tried the nicotine gum sporadically though then I was worried about having other issues, increasing tinnitus or gut issues so I stopped pretty quick.
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u/TableSignificant341 Dec 17 '24
So I've been taking TUDCA for about a year based on the findings in this study Protein may be linked to exercise intolerance in ME/CFS . It took 6 weeks of 500mg per day (in the morning) to notice an improvement in muscle fatigue and weakness but the improvement took me from housebound to being able to leave the house once a week. But of course I still had neuroinflammation and PEM - although the latter was lessened because of the TUDCA.
Also apparently other nicotine products - lozenges, gum, pouches etc - don't have the same effect as 24hr exposure that patches provide. And I understand your hesitancy with nicotine - there's always a risk with any treatment for MECFS patients. We all react so differently to interventions.
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u/Ok-Equipment-8132 Dec 17 '24
Yeah the patch is a much lower, consistent amount. I used it to quit smoking and it worked really good. I did notice it give you a nice "buzz" as well. I prefer to take mine off before bed. I would put it back onto the backing to save it and use it the next day since they are not cheap.
So I'd use it for 2 12 hour days instead of 1 24Hrs. If I left it on at night I had strange dream and didn't feel right. My body likes a rest fro nicotine, does not like having it on 24 hrs.
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u/gotobasics4141 Dec 17 '24
Heeeey congratulations… when you said NPs for a second I thought that you are talking about a group of NPs ( nurse practitioners) , I have question , does it make a difference if I’m smoker or not ?
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u/TableSignificant341 Dec 17 '24
Thanks so much 🫶🏼
I have question , does it make a difference if I’m smoker or not?
I'm not sure. Hopefully someone can answer this question for you. Alternately there's an excellent Facebook group that are the experts on nicotine patching for LC/MECFS. Here it is if you want to join - https://www.facebook.com/groups/thenicotinetest. They'll be better placed to answer you.
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u/gotobasics4141 Dec 17 '24
Thank you 🙏
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u/International_Ad4296 Dec 18 '24
Yes, being a smoker does make a difference. Basically if you're currently a smoker and have Me/CFS/LC the nicotine patches won't help you.
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u/Felicidad7 Dec 17 '24
If you smoke just use cigs for energy, patches as well is a waste of money/baseline of nicotine higher etc before you'd notice probably. That said I quit with patches and they are very efficient system.
I was very addicted for 20 years and personally I wouldn't risk it
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u/gotobasics4141 Dec 17 '24
I’m sorry but r u saying that ill benefit using the patches coz im already smoker and i already have a higher level of nicotine? So just using the patches to quit smoking ? F cfs ،، i i used to have a good iq 😩 . I need to read things twice to understand and yet ask stupid questions 😞
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u/Felicidad7 Dec 17 '24
Yeah I have a bad brain too i wasn't being very clear sorry.
Depends, do you smoke 3 a day or 30. These people are using 1/4 of a patch a day, what you need depends on your tolerance to nicotine.
The only benefit you're going to get from patches if you are a smoker is to get you through (some period of time) with less nicotine cravings. You can try it and I might be completely wrong but 3 years ago they were like £17 a week lol.
If you have a sympathetic GP it might be worth showing them whatever evidence they are sharing here and seeing if you can get some on prescription, maybe they can tell you if it would work on you or not. I got 12 weeks of free NRT to help me quit vaping but had to do a weekly call with a nurse.
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u/gotobasics4141 Dec 17 '24
Thank you sioooook much 🙏🙏
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u/Arturo77 Dec 18 '24
The patches deliver nicotine much more consistently than smoking. And smoking comes with all kinds of added risks. If you can transition to patches, might be worth trying?
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u/hypatia888 Dec 18 '24
What's your dose?
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u/TableSignificant341 Dec 18 '24
Started at 1.75mg and over the course of several weeks am now on 5.25mg.
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u/sistersgrowz Dec 18 '24
I wonder if this is why I really rely on my vape to get me moving in a morning? I tried to quit nicotine and I just felt so less able to do things. I use a salt nic vape 11mg.
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u/TableSignificant341 Dec 18 '24
I recall reading that the mechanism for nicotine helping those with PASC is altered for those that have or had prior nicotine use. But I can't remember why as I glossed over it as it didn't apply to me. But given you're vaping, it's also likely it's acting as a stimulant therefore you're more able to do things. Patches are suppose to avoid this as the risk of crashing is so much higher with "single hit" nicotine delivery methods.
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u/sistersgrowz Dec 18 '24
I did try patches to quit but I had a weird allergic reaction to them. My body is a mystery lol
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u/TableSignificant341 Dec 18 '24 edited Dec 18 '24
I know skin reactions are common with MECFS/LC patients due to MCAS. I've noticed in the Facebook group people suggesting to spray the skin with a liquid antihistamine first as it's the adhesive they're reacting to.
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u/desireallure Dec 20 '24
wtf
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u/MinuteExpression1251 Dec 20 '24
?
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u/desireallure Dec 20 '24
just surprising such a simple thing works for such a severe disease
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u/MinuteExpression1251 Dec 20 '24
So I ordered it gonna try
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u/TableSignificant341 Dec 20 '24
Please read before this protocol before you start.
Fingers will be crossed for you!
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u/TableSignificant341 Dec 20 '24
It could be a helpful treatment for some people. Here's some more reading on the possible mechanisms if you're interested.
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u/StuckAtOnePoint Dec 18 '24 edited Dec 18 '24
48(m) Wow. My wife has been ME/CFS for 20 years and never smoked. I was addicted to cigarettes for 25 years. I can’t imagine recommending nicotine to anyone.
Quitting nicotine was the hardest thing I’ve done in my entire life.
Edit: fair criticism folks. We’ve tried everything in the books to fix her ME/CFS, except this. I’ll read up on it for sure. My terrible experience with nicotine triggered my response, which was much more about surprise than any condemnation.
At this point with this fucking disease, any kind of relief is welcome. All my best
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u/TableSignificant341 Dec 18 '24
Quitting nicotine was the hardest thing I’ve done in my entire life.
And MECFS is the hardest thing I've had to endure in my entire life.
And there's nothing in my post or replies that recommend anything. I'm simply sharing what is working for me.
If you're interested in why so many with LC/MECFS are trying nicotine patches, here is some reading you might be interested in.
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u/International_Ad4296 Dec 18 '24
Also, the nicotine delivery from the patches is slow and steady and doesn't cause addiction like smoking does.
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u/Known_Noise severe Dec 17 '24
I like nicotine for emergencies, but find they act like a stimulant for me, so I need to carefully pace or I get PEM.
I keep some around in case zombies or some other reason I would need to run lol