Is anyone doing the nicotine patch test?

[madie]

I've just sent for the nicotine patches to join this n=1 testing group: https://twitter.com/TheNicotineTest. Is anyone else trying this?

 

[This is Luke]

I have mild to moderate ME/CFS that was sudden onset in 2008 from an infection, I am on day five of 7mg nicotine patches. It still feels like I am on a IV caffeine drip. I haven't had to nap during the day over the weekend while on patches which I used to have to do and I am waking up early every night from the patches so it has increased energy. It has improved the aches and pains and I am less out of breath going up stairs. Negative symptoms are headaches and the restless hyped up on caffeine feeling. I am going to keep on it for a bit and see where it goes.

The first day or two I felt euphoric and somewhat high so this may be a little much for really sick people to manage at first. You may be able to put a piece of plastic over half the strip to lower the dose. From what I have read do not cut the patch as this supposedly causes it to be released faster but I can't find good data on that.

The important thing to note is nicotine patches are different from nicotine gum as it is a slow sustained released instead of a hit. If nicotine is blocking some receptor or inflammatory pathway it would make sense that you would want a slow sustained release instead of a hit. I know a lot of people have tried nicotine gum in the past for energy.

As of right now this is definitely doing something positive the questions are will it last, will I crash from it, and will it sustain with time.

The study author is retweeting a lot of random people's tweets that have little to no evidence basis behind it such that nicotine patches is working by people herxing or fighting hidden virus in the body which makes me feel far less confidence about the authors study and the science behind this. People are basically making up how this works at this point and the study author is hyping it up, not a good look. My smart ass side wants to throw in a BS theory as well to call out how ridiculous some of things people are saying but oh well. This treatment was low risk enough that I figured worth a shot.

 

[madie]

I've just started this morning. I've lived with CFS since 1985; my function is about 30%. I bought 7mg rectangular patches so I could easily fold them in half and tape on, for a 3.5mg dose.

I've been wading through the twitter posts, and there's a lot there that's helping me figure out a plan. If all goes well, I'll do 8 days on and then stop, and then start again but I don't know how long I'll wait. Are you doing this in bursts?

I'm interested in study links if you find any. Bunk the Biologist (Twitter) posted that the patches might help because nicotine triggers autophagy, which is true. I've been following his protocol for 3 months including a weekly fast to - trigger autophagy.

 

[This is Luke]

Yesterday the poor sleep from the patch caught up to me and was tired. I had to take the patch off last night when I woke up at 4:30am. The 7mg patch is a lot, I probably should have started with taping off half the patch. I am going to try taking the patch off at night moving forward and see how I tolerate it.

 

[madie]

I stopped the 3.5mg patch last night. I'd gone from waking 3x to 5 or more. I thought I would switch to wearing it during the day, but I'm taking a few days off to see what happens. Maybe I'll start up again at half of this dose, if I can fold the patch that small.

The patch improved thinking and communication on the first day, but then my brain started to fry from lack of sleep. I couldn't nap. I'm immediately back to my normal on a good day. So no crash, and maybe some gain.

 

[soph1359]

hey I was wondering how you both were getting on with the nicotine patches? I’m an m.e. sufferer of 10+ years and I’ve seen it on twitter, but I’m still a little sceptical and would really appreciate hearing from others with longer term cfs/me experience

 

[madie]

hey I was wondering how you both were getting on with the nicotine patches? I’m an m.e. sufferer of 10+ years and I’ve seen it on twitter, but I’m still a little sceptical and would really appreciate hearing from others with longer term cfs/me experience

Sorry! I haven't been on. I stopped using the patch because my bad insomnia got terrible. I'm still trying to get back to my previous normal of 3 wakings a night. I did test daytime only at 3.5mg, but didn't try going down to daytime at half that.

 

[madie]

I wrangled my sleep back to my-normal of 3-4 wakings in 9 hours, and am now testing 1/8 of a 7mg patch, daytime only. I fold the patch. This dose does not affect my sleep. There's a small increase in underlying energy - how interested I am in doing anything, and how long I can focus on doing it. I'm on day 5 of this go-around, and haven't decided how long to stay on the patch before cycling off. Somewhere between one and three weeks.