nocaffeineplz.bsky.social
Graphic & web designer, mainly using this account for illness fieldnotes.
♿ Chronically ill & disabled with ME/CFS, MCAS, hEDS, Psoriasis, Endometriosis/Adenomyosis, and likely some rampant undiagnosed ADHD
Je poste principalement en anglais !
218 posts
137 followers
274 following
Regular Contributor
Active Commenter
comment in response to
post
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.
comment in response to
post
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.
comment in response to
post
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.
comment in response to
post
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.
comment in response to
post
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.
comment in response to
post
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.
comment in response to
post
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...
comment in response to
post
when that happens, do you sleep deeply? do you feel better afterwards or not?
comment in response to
post
That's amazing to read! How have you been since your post?
comment in response to
post
At the same time, it can maybe help avoid reaching the aerobic treshold…
comment in response to
post
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)
comment in response to
post
Amantadine is another similar med, as far as I know, but not sure which one is more adapted.
comment in response to
post
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.
comment in response to
post
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).
comment in response to
post
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.
comment in response to
post
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.
comment in response to
post
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...
comment in response to
post
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.
comment in response to
post
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 ❤️
comment in response to
post
How do we attend???
The website is under maintenance, where's the link?
comment in response to
post
PS: my ME is mainly physical weakness and severe MCAS, no severe light/sound sensitivity
Do you think you could get help from friends or family? Or volunteers from your neighborhood?
Let me know if you have any question, I hope it'll all go smoothly <3
comment in response to
post
- with that in mind i had 2 weeks to rest in between my trip and the arrival of the furnitures. I had help in France to help me with groceries and food; I cooked small things on my own or had soup, shakes…
- then we took our time to unpack stuff; it's still a mess but luckily no crash
comment in response to
post
- my boyfriend did the moving a few weeks later. Unlike you, we were lucky to have a moving company to help my boyfriend moving the things from our flat (2nd floor no lift) to the truck, driving the truck, and delivering again to the 2nd floor upon arrival.
comment in response to
post
- we started packing very early, so we could do a few boxes every few days
- we moved me first to the new location, so I only had to focus on the trip itself; I took the train with my reclining wheelchair (we have no car and don't dive) and we had a mattres upon arrival
comment in response to
post
Hi! I moved countries (from The Netherlands to France) recently. I'm severe-moderat(ish).
I'll list everything we did and I think helped, feel free to use or not use any of these advices depending on your situation (!)
- boyfriend packed all my belongings; I was laying down, I gave instructions
comment in response to
post
There's no rule for that. It depends on your reactions. Somehow ketotifen ended up being a bit too stimulating for me so it works well with another H1 which makes me more sedated 😆
comment in response to
post
And to give a clearer picture of my reaction to Mestinon; I had full body tingling from the first 15mg and it kept on going like this for weeks (I have this symptom often as MCAS reactions). I had panic attacks. I was incredibly weak. I fainted for the first time in my life... 😅