Did a urine dip and it's not a UTI. Think the tica/triple has made me all inflamed or as my ANS has been flared up all week that's made me all inflamed or a combo of both. I do have low dose pred but trying to avoid for now. Siiiiigh, FML 💔
#LongCovid #POTS #TeamClots
FFS had abdo pain all week put it down to side effect. It seemed to settle yday but worsened overnight. Now have constant raw abdo & back pain, FML ?UTI or ? interstitial cystitis. Or maybe as my ANS has been so affected maybe the nerves are just all inflamed.
So done! 🤬
#LongCovid #POTS #TeamClots
Luckily, I'm used to feeling lightheaded 🙈🫠 don't know how I used to cope with this & have no idea how I used to drag myself to work like this
#LongCovid #POTS #TeamClots
Tica update - I'm still lightheaded but it isnt as bad as it has been over the last few days. Dr advised I stop & see if things settle. But as there is a little improvement today I'm going to keep going. If it gets severe again I'll stop/tweak meds.
#LongCovid #POTS #TeamClots
A handmade thank-you card on brown kraft paper sits on a wooden surface next to a small pack of iced biscuits wrapped in clear plastic. The card features a bouquet made from small colorful paper flowers (yellow, pink, purple, and white) with drawn stems and a silver ribbon bow. “Thank you” is handwritten at the bottom. The biscuits are round with white icing, thank you is written in the centre with a heart at the bottom and a small label on the clear packaging that reads “Handmade with love.”
After a pretty 💩 week this made my day today 🥹 A LC friend sent a thank you for helping with the covid inquiry, so sweet! It really is the little things that mean so much 🫶 I've met so many lovely people through this hellish experience!
#LongCovid #POTS #TeamClots
I asked my consultsant colleague if he thought it would pass. And he said sometimes it does but what I'm experiencing sounds quite severe and more than a side effect.
I guess we shall see, why is everything so difficult 🤬
#LongCovid #POTS #TeamClots
🙄 never easy is it.
It’s hard because it took years to get my POTS symptoms under control & now I feel like I’m right back there again, constantly lightheaded/presyncopal. Hellish 🫠 but in a way luckily I'm used to it.
#LongCovid #POTS #TeamClots
I'm thinking maybe I need to reduce my POTS meds (or one of them) to try and get HR up and a bit spiky. I'm just too brady atm and I've been brady before & been fine but my body would compensate & this isnt happening on ticagrelor ?due to adenosine
#LongCovid #POTS #TeamClots
His main concern is he doesnt want me to faint whilst on triple which is also my concern. He told me to contact the prescriber and let them know which I have.
#LongCovid #POTS #TeamClots
I messaged one of my consultants who is an ex colleague & he agreed with my theory "Ticagrelor can sometimes have subtle effects on heart rate and autonomic tone, and in someone with POTS this can feel quite pronounced"
#LongCovid #POTS #TeamClots
If you looked at my HR data, you might think things look “better” but I actually need that increase in heart rate to keep me stable & upright.
#LongCovid #POTS #TeamClots
My theory is that for me, it seems to have lowered my HR too much (lots of brady) and blunted the compensatory responses that normally help me stay upright.
#LongCovid #POTS #TeamClots
So I know that ticagrelor can lower heart rate and also increase adenosine (a vasodilator). Thanks to the Visible app I was able come up with a theory after looking at yesterdays data & thinking wow this looks flat compared to my usual spiky HR.
#LongCovid #POTS #TeamClots
Another bad day, trying to stay conscious and not pass out even at rest just sitting in bed with feet up, thanks Ticagrelor 👌💔
#LongCovid #POTS #TeamClots
Obviously I dont want to faint, especially whilst on triple therapy. Has anyone taken this and know if this will pass after a few days/weeks?
Not looking for medical advice just want to know if this will pass 🙏
#LongCovid #POTS #TeamClots
So 5 days in to Ticagrelor and it isnt going well. The side effects include dizziness and fainting. I struggle with this every day anyway but this has made it much worse & my legs are shaking everytime I move & I feel faint pretty much constantly.
#LongCovid #POTS #TeamClots
Three boxes of medications arranged on a light patterned surface. At the top is a white box labeled “Brilique 90 mg (ticagrelor)” by AstraZeneca. In the middle is a white and blue box labeled “Apixaban 5 mg film-coated tablets” by Sandoz. At the bottom is a yellow box labeled “Aspirin 75 mg gastro-resistant tablets” containing 28 tablets. The medications are stacked vertically and appear unopened.
Goodbye clopi, hello Ticagrelor.
Hoping for benefits,minimal side effects & nothing scary! 🙏
#LongCovid #POTS #MCAS #Migraine #TeamClots
Three boxes of medications arranged on a light patterned surface. At the top is a white box labeled “Brilique 90 mg (ticagrelor)” by AstraZeneca. In the middle is a white and blue box labeled “Apixaban 5 mg film-coated tablets” by Sandoz. At the bottom is a yellow box labeled “Aspirin 75 mg gastro-resistant tablets” containing 28 tablets. The medications are stacked vertically and appear unopened.
Goodbye clopi, hello Ticagrelor.
Hoping for benefits,minimal side effects & nothing scary! 🙏
#LongCovid #POTS #MCAS #Migraine #TeamClots
I used AI to help me unpick it all "Findings are consistent with a chronic neuro immune vascular dysregulation state with impaired antiviral function, persistent innate immune activation, endothelial involvement & ⬇️ metabolic efficiency"
#LongCovid #POTS #PwME #TeamClots
Finally, I've had a little energy to look at my @amaticahealth.bsky.social RNA results. And, how validating! It really fits my clinical picture and confirmed my thoughts. After years of "normal" blood tests, nice to have some data to back it up.
#LongCovid #POTS #Migraine #PwME #TeamClots
Now I'm going to have change when I start them all etc. Writing it all out has helped a bit, but it’s still a lot.
And of course, ticagrelor is way more expensive 🙄
So frustrated with my body, nothing is ever simple, is it?
#LongCOVID #POTS #MCAS #PwME #Migraine #TeamClots
I spoke to the lovely Dr Kane today and she’s advised me to stop it and switch to ticagrelor instead.
Honestly, I feel a bit overwhelmed. I’m on day 3 of a migraine and juggling so many new things e.g. supplements & B12 injections.
#LongCovid #POTS #MCAS #PwME #TeamClots
I was really shocked and upset when I saw the results. I almost didn’t bother with the test because I was so convinced it was working, I’ve had loads of bruising since starting it.
#LongCovid #POTS #MCAS #Migraine #PwME #TeamClots
💔 Siiiigh! Triple update.
So about a month ago I had a blood test to check if I respond to clopi, as quite a few people have a gene that means it doesn’t actually work for them. And of course, I’m one of them 🙄
#LongCovid #POTS #MCAS #PwME #Migraine #TeamClots
Or maybe it's all 3 hitting me at once.
And this is how I spend most of my days now, trying to work out what is going on in my body.
Exhausting and relentless.
Don't know how I have survived 6 years of this 💩
#LongCovid #POTS #MCAS #Migraine #TeamClots #PwME
Or maybe it's vestibular migraine as I stopped my meds a week ago due to side effects which is a shame because it has worked wonders for my vestibular and chronic migraine (wonders as in I have 2-3 migraines per week instead of most days)
#LongCovid #POTS #MCAS #Migraine #TeamClots #PwME
Fairly sure it is POTS but maybe its an MCAS reaction to something I've eaten although I've eaten nothing new.
#LongCovid #POTS #MCAS #PwME #Migraine #TeamClots
TODAY! Roundtable of experts on research, tests, & Tx (anticoagulants & more).
🩸Hypercoagulability
🩸Microclotting
🩸Antiphospholipid synd.
#TeamClots #MECFS #LongCovid #APS
Join: us06web.zoom.us/webinar/register/1417709311549/WN_pA2epNjuSm2jn3852eeCNQ
Recording: youtube.com/@renegaderesearch
#teamclots don’t miss this hrpercoag / microclots event in thread above on March 13 2026 or catch the recording later.
This event is in two days! Register now to attend: us06web.zoom.us/webinar/regi...
If you can't make it, we'll post the recording to our YouTube later, so subscribe to be notified: www.youtube.com/@renegaderes...
#TeamClots #Microclots #MECFS #pwME #LongCovid #APS #Clotting
