Nicotine?

[LT135]

Isn't the protocol to do 7 days on, 7 days off and then another round of on to see if the baseline as improved? (Or 10days on, 10days off).

 

[Kevy B]

Ok, on my 4th day after my restart. As mentioned, I was impatient to try and ordered while pretty PEMed up, so I made a total muck of the purchase and ordered 21.5mg ones.

So I've cut them in 6 (including the backs) and am now dosing at 3.58mg. I'm leaving the backs on before I stick one on, am I'm reasonably confident this method is working ok and it's dosing correctly. Having to wrap medical tape round my arm to keep them in place, though.

No major side effects with me on this dose. Not feeling obviously "medicated" this time. Did think my thinking is possibly slightly clearer. Sadly, on this 4th day, feeling more sleepy and lethargic. So, the opposite of an energy boost, for now. This could be down to the fact I slept pretty badly. My stomach was in an absolutely ravenous mood, which kept me awake. Don't know if that was related to the Nicotine.

So, now not feeling that confident. But I'll certainly see through the 7 days.

Looking like another disappointment for now, though. *sigh*

 

[JES]

I began the trial yesterday as per the modified original protocol by starting with a 7 mg patch folded in half, so 3.5 mg for the first two days. I reckon these could be cut as well, but I went with this method to be safe. Didn't wear during the first night as I felt quite restless towards the evening.

So far second day in and noticed a bit nausea, feeling a bit crappier overall, but at the same time was able to accomplish slightly more, maybe due to the stimulant effect of nicotine. At this point no major improvements to report.

The benefits of this protocol are supposed to be felt earliest after a week when you remove the patch, so I think it's important to manage expectations and follow through for at least a couple of weeks if you can and manage expectations.

 

[godlovesatrier]

Good luck @JES

 

[Kevy B]

Well, I'm 2 or 3 days after finishing the 7, and not feeling anything. In fact my sleep pattern was totally messed up last night. Not sure if there's still nicotine in my system to be doing that, or not. I'm not overly confident anything miraculous is going to happen in the next 5 days.

Anyway, glad to be off the Nicotine, though, as it became a miserable slog with regards to increased lethargy. 5th day, I came very close to giving up, as I felt awful. Weirdly, the 6th day, I felt better, and thought I'd turned a corner. But then 7th day was back like the 5h, so I was very pleased to finally finish.

The only thing I feel definitely changed, was I dreamt far more, and remembered my dreams more. Which can be a double edged sword, depending on the dream, of course.

There might have been some other benefits, early on, but I'd file them in the "inconclusive zone."

Unless something changes in the next 5 days, then I don't think I can do another 7 day session, it just becomes too much of a miserable slog after about the 5th day. I could maybe try 1-3 days.

Anyway, I don't want to put anyone else off. It's cheap enough for just about anyone to try once, so everyone should probably give it a go. The Nicotine patch industry will be doing well, though.

Hope you fair better than me. Good luck!

 

[godlovesatrier]

I had a similair experience, lethargic with joint pain and a few other symptoms. Good to see you tried tho.

I also saw another pwme on twitter who had the same experience, no effect.

and another who crashed really badly after about 7 days and is still in a very bad crash, I could sort of see that coming so I stopped on day 2.

 

[godlovesatrier]

https://twitter.com/i/web/status/1675480717998845954

 

[LJS]

I have done two 10 day treatments a few weeks apart. First time was 7mg for a few days then I had to start taking the patch off at night to sleep. The second time was 3.5mg (half of the patch blocked off with the metal foil and medical tape) for the whole 10 day course. I had to stop both times as depression and mental instability became really hard to cope with but both times the days after coming off it I felt really good for a few days. The first 10 day course was really good improvement.
I wish I could figure out how to optimize this.

 

[JES]

Interesting to read the experiences here. I wore the patch for seven days now (minus the nights the first couple of days). The experiment went a bit better than expected, so I will extend it to the next week at least and report back.

+ More energy overall. It remains to be seen if this is due to the stimulant effect I get initially from taking certain new drugs/supplements, in which case it's not going to last, or if there is more behind it. I noticed especially more energy on day five, but still had a couple of worse moments during most days.
+ Better sleep and more vivid dreams. This was unexpected to say the least, but probably the main positive effect for me so far. Again makes you wonder as nicotine is supposed to have the exact opposite effect, but I noticed many ME/CFS patients respond in a paradoxical way to medications, for example by getting more energy from CNS depressants like pregabalin.
+ A bit less brain fog and improved cognition
+ Reduced neuropathic pain and unspecific "inflammatory symptoms"
- No magic boost in energy levels like I have experienced occasionally from temporary remissions
- First few days were a bit rough when increasing the amount in patches towards 7 mg
- A slight increase in restlessness from the nicotine, but less bad than I experienced from Abilify
- Still baseline flu-like symptoms persist, which I question if nicotine will get rid of

Overall this was good as I typically abandon most treatments as not working by week one. I don't expect nicotine to make a bedbound ME/CFS patient walk, but it could be a treatment worth trialing for symptoms like brain fog, bad sleep or pain in my short experience.

 

[datadragon]

Nicotine turns out it stimulates orexin A and B and improves the sensitivity of orexin receptors. Obviously if trying would suggest to be used only in nicotine patch form not smoking. Orexin is considered a 'master controller' of the sleep wake control system related to this thread and appear to be very involved with ME/CFS. https://pubmed.ncbi.nlm.nih.gov/16545369/

 

[Kevy B]

I thing to measure if you're doing this trial, if you've got an oximeter or whatever, is your pulse rate. Looks like my resting (sitting in a seat) pulse rate was often down about or over 10 bpm, usually in the low 80s or 70s, sometimes even edging the high 60s. Now that I'm off, it's back up to mid to high 80s or 90s. Interesting.

Would be interested if others get the same effect.

 

[Kevy B]

I just thought I'd mention this, as I think just about all of us have an unnaturally high pulse rate?

I thought it might be an indicator that something positive might be happening, and a potential measurement of that. So if you try this, might be worth a go at measuring your pulse, during. Pulse oximeter's are back to sensible prices, these days.

Anyone with neuropathy, did you notice any differences? I feel something's different here, but I can't be sure if it's positive or negative, or just different, as I think I've managed to mentally blank it for a good while, but I'd say the nicotine has made it change and vary quite a lot. This seems to have stuck after ending the nicotine.

Anyway, other than that, I'd say I'm back to baseline. Possible slight improvement in thinking clarity, but I might just be kidding myself.

 

[JES]

Second week behind, not quite as optimistic as after the first week, but still *some* improvements.

- Took the patch off for the night, but then had a much harder time to wake up and get going the following day, so decided to keep at least half of it on at night.
- Effects on overall energy were less substantial. Still quite significant daytime fatigue.
- Still positive impact on brain fog and cognition. The main benefit so far for me.
- Restlessness from the nicotine present to a degree. This is the only main negative.
- Yes, it does something to my small fiber neuropathy, which is a type of unspecific neuropathy. I notice it slightly less in my feet, but it never bothered me to a huge degree. More interested to know why it's helping in that regard.
- I don't measure my pulse since having POTS and OI issues for so long. Subjectively it feels slightly lower, which could be a sign of improved autonomic nervous system function. Nicotine binds to nicotinic acetylcholine receptors, which could activate the parasympathic nervous system.

I'll continue for a third week at least. The cognitive benefits may be worth having this in my permanent stack of supplements.

 

[Kevy B]

@JES

Actually, although it took me a while to conclude this, I'd say while on the nico, it actually made my neuropathy worse. I definitely became more aware of it, as it was varying quite wildly. From next to nothing to pretty noticeable. Problem is, before I took the nico, it was pretty steady, and I'd learnt to mentally blank it, so I'm not entirely sure how it used to be, hence my confusion. Problem is, it's hard to get a scientific "control" so there's a couple of other factors that could have been effecting it, also.

Anyway, about 10 days off the nico, and it's dropped back significantly, so thankfully it doesn't seem to be a permanent downside. It MIGHT, I say cautiously, be now be better than how it was. I've been waiting for it to improve before a restart, due to the fear a restart might make things even worse on that front.

So I can cite two potential improvements, up to now. Neuropathy and balance - steadiness on my feet, but no improvement to my balance issues when bending over or moving my head too fast. But I'm still in the inconclusive/ "just kidding myself" zone.

No improvements to energy levels or PEM.

Mental clarity, I'd say pretty inconclusive. Ironically, you need mental clarity to be a good judge of your mental clarity, which makes it the most difficult to judge.

No improvements to memory.

My sitting heart rate has now gone back to 90-105 bpm, so the positive effect there as reverted, or it's just took a while for me to clear all the nicotine out my system.

So, I've restarted today. 7mg, quartered, so I'm dosing at the lower dose of 1.75mg a day, will leave on 24 hours. At this lower dose I'm hoping to go 7 days without too much negative symptoms. I'll try for 10 days if I'm feeling up to it.

I think the neuropathy might be the best judge of things improving or not. If it's very negliable or gone 10 days after this second dosing period, then I'll have a clear belief that something positive is happening!

 

[JES]

@JES
I think the neuropathy might be the best judge of things improving or not. If it's very negliable or gone 10 days after this second dosing period, then I'll have a clear belief that something positive is happening!

Yep, makes sense to me. I had improvements in neuropathy at the end of the first week, but now not so sure anymore. I also made the mistake of trialing some other things in the last week, but will go back to just nicotine now. The summer generally makes some of my symptoms better and now being the hottest weeks, that also skews the experiment. 😒

The only positive impact that I'm fairly sure of is not placebo is the remained increased motivation, mental energy and reduced brain fog. Nicotine affects various neurotransmitters such as acetylcholine and dopamine, so it's not surprising it would have some effects in that regard. Perhaps it works as a poor man's Abilify for me, but with less side effects and safer profile.

 

[Kevy B]

Well, I think I can conclude that it didn't really do anything. So that was another waste of money. Ah well, I guess the nicotine patch industry did alright out of it. I notice talk of it on social media seems to have died off as well.

I was thinking of trying the occasional dose, but unfortunately the allergic reaction on my arm to the patch seemed to be getting worse each time, with a guaranteed liquid filled sore each time.

Anyone else have any luck?

 

[Cheryl M]

I am trying nicotine for ME for the first time, but I was daft enough to buy lozenges instead of patches, and they are HORRIBLE. (You have to dissolve it in your mouth for half an hour, there's a strong mint taste and it's burning my mouth.)

Update: Oh, wow! I didn't expect ti to make me this dizzy! I have never been a smoker and I haven;t tried nicotine before. It's giving me vertigo.

 

[JES]

Yep, nicotine constricts the blood vessels. For certain type of dysautonomia or POTS it might help, for others it could make it worse. If you buy the patches, make sure you start with the lowest dose ones or cut them in half.

 

[Hufsamor]

Yep, nicotine constricts the blood vessels. For certain type of dysautonomia or POTS it might help, for others it could make it worse. If you buy the patches, make sure you start with the lowest dose ones or cut them in half.

Did you continue with the patches?

 

[JES]

Did you continue with the patches?

Yep, since the summer. The best effects wore off after a month or so, but I still kept using a 7 mg patch cut in half per day (3.5 mg). I think it helps me to a degree with brain fog and fatigue.