Nicotine?

[godlovesatrier]

They are saying 78 patients have seen improvement using Nicotine:

https://twitter.com/i/web/status/1654879031743897602

 

[maddietod]

I've given up on this experiment. I've tried 3 times, at 3.5mg 24 hours, 3.5mg daytime only, and 1.75 daytime only. The longest I lasted is 2-1/2 days. It did improve daytime energy and stamina, but ruined my already poor sleep.

To be fair, the experiment was set up for long covid, and then expanded to include PWCFS. I've been sick since 1985.

 

[Kevy B]

There does appear to be a correlation which anyone who's been on this forum for over a decade will realise between early years and later years.

In fact whilst confusing the cyotokine page on me-pedia.org lists tons of studies that show this. Cytokine profiles change rapidly early Vs late. Stages of viral reactivation make total sense.

We desperately needed a longitudinal survey to put most of this data together

I respond very well to valtrex and have no symptoms of hsv 1 or 2 and it doesn't touch CMV so it can only be ebv.

Interested in trying Valtrex, but no clue how in the UK. Naturally it'll be blocked by the NHS, but if I went to a private doctor, could I get a private prescription, or will I have to use other methods?

Question open to all. Thanks.

 

[godlovesatrier]

See Dr Bansal twelve month waiting list. Call spire bushey hospital.

 

[Kevy B]

Is there an actual instruction web page / doc about, telling you the regime for this? I've found the Twitter page for it, but still no exact instructions as to how to start.

Or is it just a case of starting each day with a patch, starting off with 3.25mg and trying to move up to 7mg / what you can tolerate?

Thanks.

 

[Kevy B]

See Dr Bansal twelve month waiting list. Call spire bushey hospital.

Thanks. What's the cost per day to take it, if you don't mind me asking?

 

[maddietod]

Is there an actual instruction web page / doc about, telling you the regime for this? I've found the Twitter page for it, but still no exact instructions as to how to start.

Or is it just a case of starting each day with a patch, starting off with 3.25mg and trying to move up to 7mg / what you can tolerate?

Thanks.

https://twitter.com/TheNicotineTest. There are links in the pinned tweet.

If this is where you already started, I can't help much more. This is where I started. What I learned for me is it's better to potentially waste time starting very low and slow. If you don't have insomnia, just jump in at a level that feels reasonable to you, at 24 hours a day. If you find that's tolerable, you can decide to up the dose immediately, or stay at that level for, say, a week and then stop for a week. Some people get remissions during this time off. Then decide what you want to do next.

I don't think you can figure out a plan until you've tested a dosage for a few days.

 

[godlovesatrier]

https://twitter.com/i/web/status/1670700868897832964

 

[Kevy B]

@maddletod (quote didn't work)

Oops, I'm an idiot. Sometimes I don't see the things straight in front of me. I looked in the bio, but didn't spot the pinned tweet! (I was pretty PEMed up on Fri)

Ok, started with a dose of 7mg. Nothing much, yet. Not sure.. Dreamed and remembered it Saturday night, which is unusual, but nothing Sunday night. No side effects, either, though! Possible slight uplift in mood, but that might have been the excitement of getting to try something.

One slight worry is, where I add the patch to my skin, it becomes a little red and itchy, then that goes after an hour. I just hope my body isn't destroying the Nicotine before I absorb it.

Got two different doses of packs. Couldn't get the recommended brand, but I doubt it matters much. So what I've tried was 14mg Niquitin, halved. Might try upping the dose to 10.5mg, with the 21mg Nicotinells.

 

[maddietod]

Got two different doses of packs. Couldn't get the recommended brand, but I doubt it matters much. So what I've tried was 14mg Niquitin, halved. Might try upping the dose to 10.5mg, with the 21mg Nicotinells.

You folded the patch, right? If you cut it, that might explain the irritation. You could look around for advice about where to place the patch if you're getting irritated. I imagine irritation would get worse as you increase the dose.

I looked through the thread I linked, trying to find relevant posts for you! Then I realized it was all pinned at the top. Stupid glitchy brain.

 

[Mouse girl]

Well my thinking is, also, if it potentially does work, then surely nobody that smokes would get ME, right?

So I guess the question could be to everyone would be, did you smoke when you got ME?

I've never been a "smoker", I got sick when I was young and I would sometimes have a cig if i was out with friends drinking. I have known people who were smokers and got sick and kept smoking. One guy I'm thinking of does rather well for an ME person though. but, we all know that coorlation doesn't mean causation, well, some people know that, i guess. I have taken a few puff of a cig after getting sick and I remember this overall calm and well being feeling. And I think this is why so many people with anxiety can get into smoking. But i also felt a bit lightheaded, dizzy from what i recall. but i was so shocked at feeling the nicotine hit my system and feel it move through out my body quickly. I've been eating so well and not around chemcials and being as healthy as can be for decades when i tried it, so i guess i could feel it hit my sensitive system harder. Makes me curious to try one again to see if it would give that calm feeling. I could never smoke as thing, i could feel it if i smoked too much one night when i was young and healthy. But i was always pretty health minded, I'm from Los Angeles where hiking, eating organic and working out are just the norm for many.

ps: as a funny side note: We smoked organic cigarettes here! lol I mean, they don't have all the chemcial additives and will go out if you put the cigarette down and it burns slower etc. But, hey, it's still smoking, it will kill ya in time if you don't have the protective genes.

 

[godlovesatrier]

People with ME who tried nicotine and did badly or had zero effect: (read the thread)

https://twitter.com/i/web/status/1670922229184331782

 

[Kevy B]

@maddietod

Ok, quotes don't seem to be working again. Oh, I thought it said cut it. Dammit, can't read anything right. I think cutting's not the problem, though. It's ok, I read the instructions with the pack (helps ) and it said redness and itching was a common side effect.

Ok, bad idea upping the dose over the recommended to 10.5mg. Within half an hour, definitely felt a little out of it and "medicated." Eyes also went slightly blurry and my balance went a fair bit iffier. Was putting my hands on things to secure myself, as I didn't quite trust my legs enough.

What didn't help, is when I decided to change patch type, I decided to switch arms, and it slipped my mind to take the day before's off, so I'm guessing I might have accidentally super-dosed myself. That mainly wore off when I pulled the old patch off.

The Nicotinell's are more of a traditional, coloured, bigger patch, so I have a suspicion they deliver dose more efficiently, than the smaller, clear Niquitins, that seem a little quirky. Also no redness or itching with the Nicotinells.

But anyway, later in the night I woke up to a fairly pounding heart beat, so I pulled half the patch off and it settled. I think Nicotine's probably more powerful a drug than I gave it credit for. Be more careful than me!

Still feeling kinda "zonked out" this morning, though, so I'm removed the patch all together. So my experience up to now has turned negative, but my own fault, but anyway, no energy boost on the third day.

It's a little tricky with the patches in the UK, as the standard phase 1 patch appears to be 21.5mg, so only dosing 7mg is awkward.

As I think cutting is ok, and I also think the Nicotinell's more efficiently deliver the dose, I think I'll quarter the Nicotinells and give myself a 5.25mg dose per day.

I'll start again tonight, or tomorrow.

 

[maddietod]

Don't cut the patches! Cut edges leak out nicotine. Also, nicotine's half-life depends on your personal metabolism. If you start at a high dose, you could get substantial carry-over from the previous day's patch.

I bought step 3 patches, which in the UK looks to be 7mg. These fold in half easily and stay on with medical tape, after cutting the protective backing in half.

 

[Kevy B]

@maddietod

OMG, I think I've just realised something. The patches you're using are 7mg, so you half those, e.g. the daily dose is only supposed to be 3.5mg, not 7mg?

 

[maddietod]

@maddietod

OMG, I think I've just realised something. The patches you're using are 7mg, so you half those, e.g. the daily dose is only supposed to be 3.5mg, not 7mg?

You have to figure out your own daily dose. I started at 3.5 and that was too much. I ended at half of that, daytime only, and it still trashed my sleep.

 

[Kevy B]

Ok, fair enough.

Well, I think I'm right that you can cut the patches. Maddie, there doesn't seem to be an liquid element to them, the Nicotine seems to be mixed in with paste that's spread evenly over the patch, which enables it to stick to your arm (I do use tape for extra securing). But next time I'll check). I hope so, anyway, else I might as well chuck two packets of patches in the bin.

So, assuming I can with the 21.5mg patches, I can either quarter them for a 5.25mg dose, or 6th them, which is more fiddly, for a 3.58mg dose.

So, interesting. Yesterday I had what seemed like a pretty deep sleep (dreamt again) for 3 hours in the chair. And, afterwards, I felt like I'd sleep the Nico off. It felt like a good sleep, and reminded me a bit of sleep I had when I was sedated at the hospital, when I was going for an Endoscopy. The Endoscopy was a bit of a shambles, but the the sleep was probably the best sleep I'd had in years. I went in for the Endoscopy at 3pm, but woke up at 7pm! I think I kept all the nurses back. I assume they weren't allowed to wake me!

So, after this 3 hour chair sleep, yesterday, I felt on the better side of my baseline, and my legs felt more steady than they have been for a while.

If Nicotine does anything, it make gives some of us, at least, a deeper quality of sleep, which might help body repair. Strange how it trashes your sleep. Did it cause you to sleep more through the day?

But...That night, for my regular sleep, after coming off the Nico and not wearing any patch, I slept quite poorly, and today I'm back to feeling lethargic. More lethargic, slightly PEM lethargic, like I've been doing something physical the day before, than just a bad sleep. Puzzling. Wasn't what I was expecting after the good sleep in the chair.

Hopefully this is just me still under the influence or withdrawal of Nicotine, and it'll wear off tomorrow, and I can have one more try.

 

[godlovesatrier]

https://twitter.com/i/web/status/1672597971865575426

 

[LT135]

Hello everyone. ME/CFS/LC for 2years from the AZ vaccine.

Started 7mg patch at 21:30 25.06, had it on for 5 hours before nausea and vomiting started. Took it off, symptoms went away around an hour after that and I was able to sleep.

Have the circular patches, not able to fold them. Covered half with medical tape and taped it to my left arm at 10:15. Will update later

 

[godlovesatrier]

https://twitter.com/i/web/status/1672978477639671808