I also reduced my beta blocker to 1 pill/day. I'll do this until my body feels no longer totally out of control. That should be 7-9 days, then I'll start taking it every other day. My heart rate is all over the place still but as long as I sit down if I start feeling buzzy in the head, I feel like it's ok. Once the propranolol is totally out of my system I should be able to ramp my workouts up & my system won't be battling pharmaceuticals. #POTS#POTsie
Moving slow & shaky this morning and I can't seem to shake off the morning crankies. I hope the food bank is gentle with me today. Feeling fragile. #POTS
Prepping for our next pediatric cardiology appt & looking for the latest on #LongCovid#POTS, meds/tx, etc. Last time we were recommended exercises that triggered PEM & were contraindicated for ME-CFS pacing guidelines. What Q's should we be asking this round?
The only doctor that treats #POTS in western Canada has declined my referral, which was at the request of a cardiologist I waited to see for 5 months.
I can’t even with this country. I hate this medical system. I hate it. All of it. I’m so tired of having to be my own doctor/case manager. For f*cks sake.
I have a diagnosis, and I’m on a medication for treatment but was told to be followed by a specialist after I moved here 9 months ago.
Il fait re-froid, c'est le retour du #GateauEnTranches ou comment faire un gâteau quand on peut tenir debout que 5 minutes à la fois (et pas trop souvent) à cause du #POTS#CovidLong . C'est parti pour le Chocolato d' @Owi , aujourd'hui j'ai mesuré les ingrédients secs :dragn_cool: #MardiPatisserie
I try really hard to remember accessibility tools (ALT Text).
Still learning how this all works. Not great at social media in general. Previously found with the same handle on the birdsite, and several other instances (weirder.earth and mastodon.social specifically).
it's 30C outside and somehow I got myself in the pickle of prepping some things that I marinated to grill... without realizing the commitment I was making. lol oops...
Don't mind me while I hang out on the patio grillin' with an ice pack strapped to my chest.
Sharing in the interest of rejecting the stigma around these things... I've added Duloxetine (Cymbalta) to the list of meds I take every day. 💊
I am hopeful it will help with pain, but even more hopeful that it will boost my mental well-being, raise the bar of what I can accomplish in a day, and keep my spirits up while on this wild health journey.
Honestly, one of the best treatments for my symptoms has been this old hammock out on the deck. The way my weight is suspended, the gentle rocking, fresh air, birdies and squirrels to watch, a good book, and a reminder to slow down and relax.
I’m crying….we don’t have AC in our apartment. I’m JUST starting to recover from the last heatwave in late October. I have heat intolerance due to #POTS and #MCAS. Part of our moving to the #PNW is because it’s historically cooler. Global warming fucked that. I don’t know what we’re gonna do. I barely made it out of the last one.
Wanna confirm your worst fears? Here's a reddit thread of residents showing unbelievable contempt for patients w certain diagnoses: https://reddit.com/r/Residency/s/AbReVlD4FO
Hey allies:
This is what your loved ones have to deal with. Go w them to doc appts to help advocate!
A fun #medical story from my past week… I’m trying to share the positives.
I had a surgical procedure Monday and had 4 nurses involved during various steps. My 2 surgical nurses knew what POTS was and treated me so well - they gave me extra fluids. :)
My last nurse in recovery… her 16 year old daughter has #POTS. What did I do? Of course I talked to her and answered questions and was an advocate… on my surgical bed… because that’s what I do. 💜☺️
My pharmacy wouldn't refill my nortriptyline & told me to call the prescribing doc. Nortriptyline is an antidepressant but I take it to control nerve pain associated with #POTS. Without it, I get painful sensation in my toes & fingers & tightness in my neck & shoulders but with it I rarely have those issues.
So I call my cardiologist's office yesterday & today I get a return call. They won't fill the script since they're a cardiologist office not a psychiatrist. I argued that I see the
Day three on Duloxetine. Lots of shakes and tremors, some nausea, very low appetite. No difference in mood yet, but mild increase in anxiety. POTS symptoms were a bit worse on day one but it passed quickly. Almost no EDS pain today, which is a very welcome change. Absolutely exhausted. If I'm still this tired after a week I'll try taking it at night instead of the morning. It's no picnic but I'm staying the course.
Pfff j'ai encore fait un malaise au centre de rééducation 😬
Marre de la dysautonomie. Franchement, j'aimerais tellement ne plus avoir d'étourdissements dès que je fais le moindre petit exercice physique impliquant des variations de position...
D'ailleurs si des personnes concernées ont des tips sur le sujet, je prends 😊
Het is gelukt, ik heb Edson Olf van @bij1 gestemd.
Heel protocol gevolgd: al mijn compressiekleding aan, veiligheidsbril, FFP3. Van tevoren Algovir, naderhand zoutwaterspoeling en Algovir. FFP3 in een bak om 2 weken te laten liggen. Kleding in de was op 60 graden.
Het was niet druk en mijn desorientatie was steeds snel verholpen (waar in het gebouw moet ik zijn, bij wie moet ik de stempas laten zien, waar krijg ik het stembiljet en hoe vouw ik dat kreng op).
Bij het naar buiten gaan was er 1 persoon die nephoestend langsliep. Iets wat ik best heftig vind, omdat het betekent dat diegene banger is voor de realiteit dan hen compassie heeft met iemand uit de "risicogroep" zoals zij dat zien.
I got a heart monitor put on today. I have to wear it for 48 hours. It is not to bad to wear except that the big sticker in the middle if my chest itches like crazy. None of the other stickers itch. So, idk. #health#heartmonitor#heart#pots#cardiology
Work is very quiet. I have too much energy to pretend to work.
Coworkers were happy to see me. They were worried that I got Covid & had concerns about how it would affect me. I don't know if anyone with #POTS that has been diagnosed with Covid so I don't know what would happen.
I took the last piece of my FILs bday cake to work for the head of my department to enjoy. My kids are going to be so angry but the dept head will let me leave early so it's a win. I'll bake more cake this weekend.
LMNT’s electrolyte sparking waters are my new fav, like many with who are bulk electrolyte salt subscribers they sent me a free 8-pack, Black Cherry Lime is the best IMO, tastes like Sonic’s famous cherry limeades, unpaid recommendation! What’s yours? 🍒🍋🟩
Trying to balance weight from a necessary high sodium #POTS#dysautonomia diet (with lymphedema from #EDS#MECFS, and disability exercise barriers) is tough
I may experiment with more sparkling water and less salts, see where it gets me!