Just for background, I had been having creeping health issues that I know now were symptoms of progressing MECFS. In March of 2020 I had 3 weeks of acute Covid, and appeared to be mostly recovered. Summer 2020 I started declining, with shortness of breath, fatigue, brain fog, and postprandial tachycardia. I also had progressing anxiety symptoms, but that is a story for another day.
I had been improving gradually starting in 2021, partially due to learning to pace, diet interventions, and treatment for my MCAS. Still, overexertion would trigger PEM, taking a while to recover each time. Still, I was doing better, although nowhere near where I was before Covid.
In April of this year I heard some reports of people having nearly full remission with a very accessible intervention: nicotine patches. It sounded too good to be true!
The weekend of my daughter’s birthday I did too much and it was hot. The perfect recipe for PEM. On Monday I was struggling to think clearly, was exhausted and definitely starting to hit PEM. I decided, what the heck, nicotine patch it is!
I honestly didn’t think it through as well as I should have. (I do have a tendency to be impulsive. That’s how I ended up married… A story for another day!) I should have started with half of a patch, but used a full 7mg one.
I had progressively increasing dizziness and nausea. After about 4 hours the nausea progressed to vomiting, which was unpleasant. However, right afterwards the dizziness cleared, along with the brain fog, the fatigue and breathlessness of PEM, and I felt absolutely fantastic!
I had so much energy, a stark contrast to how I had been in the morning. I did not experience the Herx reactions many others described.
That week I did remove the patch about an hour before going to bed, and had refreshing sleep. My HRV went from about 14 to 29 after a few days. The second week on the patch my sleep was not as refreshing and my HRV dropped into the low 20s.
The 3rd week I had to do physical activity at work, in the heat. I kept using the patches that week as well, as I didn’t want to risk a crash. And I didn’t have one! So far the heat hasn’t hit me hard this year, like it usually does.
After that week I decided to try the phase 2 properly but was hit with a significant withdrawal headache. That is an issue I have run across with other meds and supplements: I will have a good or neutral effect, but withdrawal causes physical distress.
I decided I probably should ease down, and did half a patch (3.5 mg) each day. Note: this means I covered half of it, not that I CUT it in half! This worked really well for me as a maintenance level amount. I did finally do a week with no patch, but overexertion then did trigger mild PEM. Adding a 7mg np then was way too much for me, as it caused significant nausea and dizziness. A 3.5mg worked to stave off the PEM effectively. I was tired, but a good night or two of sleep washed it away.
Overall, the nicotine patch treatment has been very successful for me, but I don’t think I am “cured” at all. It’s still there, waiting when I have no patch and overexert myself. My baseline has jumped, though, to a level that most people might not realize I am I’ll unless I point it out.
Oh, one more thing to mention about my experience. After 4 days on the patch my gut was very happy and functioning in a way I assume normal people who don’t have MCAS experience. That’s been pretty stable unless I gorge myself with my trigger foods. I have been able to have a little bit of garlic!
I can’t say everyone should try this treatment, but it’s fascinating how it has helped many with Long Covid and MECFS, giving us some clues to underlying mechanisms of those illnesses. This was just my experience, others report different results!