Hoa
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nocaffeineplz.bsky.social
Hoa
@nocaffeineplz.bsky.social
Graphic & web designer, mainly using this account for illness fieldnotes.

♿ Chronically ill & disabled with ME/CFS, MCAS, hEDS, Psoriasis, Endometriosis/Adenomyosis, a̶n̶d̶ l̶i̶k̶e̶l̶y̶ s̶o̶m̶e̶ r̶a̶m̶p̶a̶n̶t̶ u̶n̶d̶i̶a̶g̶n̶o̶s̶e̶d̶ A̶D̶H̶D̶ and ADHD

Je poste principalement en anglais !
So sorry to hear! I hope the headaches will leave!

Do you also deal with nausea, retching/vomiting or feeling feverish? I'm dealing with this right now…!
November 17, 2025 at 9:25 PM
Hey this is amazing!

I just started Otezla 3 days ago. I'm still on the baby dose of the starter pack :-)

Can't wait to have reduction of lymph nodes size as well!
November 17, 2025 at 9:24 PM
Oh! You're new to the meds?! Good luck! It's a complex process to find your perfect med/dosage but it can be so so helpful!
November 12, 2025 at 9:42 AM
And this is exactly how I know my ADHD meds are wearing off: my legs start bouncing back and my toes start rubbing again each other!
November 12, 2025 at 9:39 AM
What caught my attention is that Quercetin is a natural PDE4 inhibitor. It acts on the same target as Otezla.

Interestingly enough, I've been raving about Quercetin for years because it is the supplement that has been helping me the most.

journals.physiology.org/doi/full/10....
Quercetin acutely relaxes airway smooth muscle and potentiates β-agonist-induced relaxation via dual phosphodiesterase inhibition of PLCβ and PDE4 | American Journal of Physiology-Lung Cellular and Mo...
Asthma is a disease of the airways with symptoms including exaggerated airway narrowing and airway inflammation. Early asthma therapies used methylxanthines to relieve symptoms, in part, by inhibiting...
journals.physiology.org
November 11, 2025 at 6:42 PM
What Ivabradine does not seem to fix in my case:
- Post-prandial POTS/heart rate increase after meals
- MCAS related heart rate increase (during heatwaves, food reactions etc)

Which is not surprising, especially because I also have a hiatus hernia and MCAS not fully controlled.
June 12, 2025 at 9:26 PM
Side effects:
- The first days I had a bit of blurry vision,
- The only remaining side effects I are these visual "phosphenes". These happen especially in the evening, when the eyes have to adapt to different light intensity.

These are very commonly rapported side effects.
I don't really mind them.
June 12, 2025 at 9:26 PM
Maybe it's because my heart pumps less fast now, and can actually pump better, have a more efficient refill, hence reducing the stress and improving HRV stats.
June 12, 2025 at 9:26 PM
What I also noticed, and it might be the most interesting part for me, is that it improves my body battery/stress score on my Garmin.
I have WAY MORE blue.
On the graph, we can see that the big orange part from 8-12 stabilised over the day. I took Ivabradine at 10 and it took about 2h to work.
June 12, 2025 at 9:26 PM
After a few weeks of use, and adding a 5mg in the evening:
My heart rate is barely reaching 100bpm now when standing up. Compared to 125-130bpm I was used to.
On standing I am at 80bpm now.
And sleeping it does not go lower than 58bpm.
June 12, 2025 at 9:26 PM
I started with 5mg in the mornings only.

The first day, I took Ivabradine at 10am and it took about 2h to act. My heart rate stabilised and staid below 120bpm.
I was surprised to see that when sitting down, my heart rate was also lower than before.
June 12, 2025 at 9:26 PM
Thanks for answering! Asking because I also have "sleep attacks" during the day when I need to sleep for 1-2h at once. It's like I suddenly need to sleep, doesn't come with weakness though. I feel better after.

At this point I don't know if it's from ME/CFS or my SSRI or my other illnesses...
May 22, 2025 at 9:55 AM
when that happens, do you sleep deeply? do you feel better afterwards or not?
May 22, 2025 at 8:13 AM
That's amazing to read! How have you been since your post?
May 20, 2025 at 10:32 PM
At the same time, it can maybe help avoid reaching the aerobic treshold…
May 19, 2025 at 12:54 PM
oh thanks so much! that's good to hear.
Happy to hear!
I just started it today and so far I'm ok…

My worry is that it would blunt the HR too much, if the heart is already compensating for not enough blood flow. And especially as I have a blunted HR on effort (showed on CPET)
May 19, 2025 at 12:45 PM