Hoa

Fey or Fiend - Cato Frederiks | DriveThruRPG.com Welcome to "Fey or Fiend", a bone-rattling adventure where adventurers will assist Atlas Vertilibraedius after an experi

It only took me about six months to write, but here is my (hopefully) pretty amazing one-shot. Your players too can help the dwarf Atlas Vertilibraedius when his experiment... didn't work out quite as well as he liked! Incl. a short and longer version!

legacy.drivethrurpg.com/product/5314...

Any advice on Singulair/Montelukast?
Which dose are you on? Did you titrate up? How's it going?
Thanks

#MCAS #MECFS #asthma

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.

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.

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.

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.

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.

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.

My Ivabradine update:

TLDR: It works for me!

Looking for a portative (battery operated) HEPA air purifier!
Needs to be shipped to Europe!
Any idea?

#covidcautious #mecfs #mcas #airpurifier #covidisnotover #airbornevirus

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...

when that happens, do you sleep deeply? do you feel better afterwards or not?

That's amazing to read! How have you been since your post?

The whole medical system is fucked. It’s all based of the premise that you’re well enough to get to a doctor.

What happens when you’re too sick to go to a doctor? Not as a once off, but permanently. Am I just supposed to die?

#SevereME #mecfs

At the same time, it can maybe help avoid reaching the aerobic treshold…

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)

What do experts of ME/CFS 2-day CPET etc think of Ivabradine as a treatment option? Does it affect cardiac output?

"We found that cluster 1 showed a significantly higher percentage of patients who are seropositive for cytomegalovirus. On the other hand, cluster 2 had a higher percentage of patients seropositive for SARS-CoV-2 and parvovirus B19."

Je recherche un.e médecin généraliste sur Paris qui connaisse le SAMA (Syndrome d'activation mastocytaire) !!

Merci pour l'aide !

Amantadine is another similar med, as far as I know, but not sure which one is more adapted.

Yes I've heard of it but never tried. It's supposed to both lower glutamate activity/block receptors (glutamate is involved in neuro inflammation) and improve dopamine levels.

Now the complicated step is the treatment options. He wants me on NSAIDS at least for now. But the issue is my tongue SWELLS (probably because of MCAS) when I take them. But he doesn't seem to be versed in MCAS and he wants an allergist to have a check...
But it doesn't work like this (sigh).

In any case, with my history of scalp psoriasis, nail psoriasis, burning chronic pain that morphed into chronic fatigue, the rheumatologist didn't seem to be very surprised by the possibility it could be PsA.

Now I have to pass a few exams including a Sacroiliac Joint MRI to see if there are signs of inflammation there; if so it's a telltale sign I have an immune mediated (and not mechanical) arthritis.

Which is... A relief but also very overwhelming.

My chronic fatigue started 6 years ago, just a few months after my enthesitis pain started.

I have been pushing so hard to get a rhuma to look at my enthesitis.
Drs told me it was pain from hypermobility, then from fibro and then from ME/CFS...

Drumroll...

He also agrees that I very likely have enthesitis (inflammation of where my ligaments attach to my bones) and that it could be part of psoriatic arthritis and that it could highly contribute to my fatigue.

I'm in a bad pain flare up.
It's exhausting and I've been sleeping a lot today.
But I'm surprisingly excited because I'm seeing the new rhumatologist tomorrow!

Proud of my body to be acting up especially for the appointment! Well done 👍🏻

Fascinating study and data...

I'd advise you to check the Crash Care Survival Guide from @batemanhornecenter.bsky.social !

You'll find a deck of cards at the very end of the PDF, available here www.google.com/url?sa=t&sou...

It also contains lots of valuable information ❤️

I think the moths feed on my psoriasis crusts