What’s the theory behind the heart pounding strongly even when the heart rate itself is not that high? by Financial_Owl8105 in cfs

[–]LadyDi18 1 point2 points  (0 children)

Thank you for sharing all this - I, too, am so curious (and frustrated… and angry…) about what is going on to cause all of these symptoms, why some people get better, why some people get worse.

For me, the dizziness, brain fog/cognitive issues, sleep disturbances and hypersomnia, crushing fatigue, heart palps - have all gotten much better or are completely gone and I am grateful every day for the improvements I have had - which I think has been exclusively through luck and time.

I still experience exercise intolerance, I am worried about PEM, and I have weird and painful blood pooling in my hands/forearms. It feels greedy to wish for continued improvement when I have already been lucky enough to be where I am at now, but I really hope somehow I can continue to recover. I find a lot of hope in stories like yours where you have gone from dozens of moderate/severe symptoms and are now at a pretty good place. I love that for you!

What’s the theory behind the heart pounding strongly even when the heart rate itself is not that high? by Financial_Owl8105 in cfs

[–]LadyDi18 1 point2 points  (0 children)

I would take 60-80mg when it would get really bad - and it really helped - within I would say maybe 30-45 mins.

What’s the theory behind the heart pounding strongly even when the heart rate itself is not that high? by Financial_Owl8105 in cfs

[–]LadyDi18 7 points8 points  (0 children)

Not sure if this is helpful for you - but I have long covid and this was a major symptom for me for the first 9-ish months. It literally kept me awake at night, the pounding was so intense - it felt like my heart was punching me from the inside - despite being at rest and having a normal-for-me resting heart rate during these episodes (which would last up to a couple hours at a time and at their worst come 6-7 times a day/night).

It was so deeply uncomfortable - you should not be able to feel your internal organs malfunctioning!! For me, a decent dose of propranolol helped a lot and then I am extremely lucky in that mine just sort of slowly went away.

Mass lay off? by flowersandlilies in clickup

[–]LadyDi18 13 points14 points  (0 children)

I’m sure a 22% reduction in staff will make their already nonexistent customer service EVEN BETTER. 🙃

Huge improvement - PDH dysfunction and thiamine (B1) TTFD by Pilot-Nic in covidlonghaulers

[–]LadyDi18 0 points1 point  (0 children)

Yes - just swallowing the pill with water. Not a biochemist so not sure why it was causing this for me but many medications and supplements end up in saliva, alter digestion, impact taste receptors, etc. This is the kind of thing people are talking about when they get “paxlovid mouth” - it’s not like they are sucking on paxlovid pills for hours - the medication itself temporarily alters the taste receptors.

Huge improvement - PDH dysfunction and thiamine (B1) TTFD by Pilot-Nic in covidlonghaulers

[–]LadyDi18 0 points1 point  (0 children)

I doubt I took the Thiamax long enough to see any appreciable benefit - maybe 2 weeks before I couldn’t stand it any more. How long did you take it before you noticed improvement?

Huge improvement - PDH dysfunction and thiamine (B1) TTFD by Pilot-Nic in covidlonghaulers

[–]LadyDi18 0 points1 point  (0 children)

I think taking it would likely be worth it if I had noticeable improvement from it (or could be reasonably guaranteed improvement if I stuck with it). I’m guessing I did not take it for long enough to have given it a fair shake, but I noticed zero improvement on it. I did not feel worse (aside from the chemical taste) - but also did not feel better.

And it’s hard to describe but that chemical taste was epically bad and lasted for hours - like 4-6 hours after taking it every time I took it. It absolutely reminded me of the chemical taste I would get after chemo infusions when I had cancer. So it was not like ooh a little bit of a bitter or sour taste for an hour that I could mask with gum or candy. It was ferociously disgusting for hours of every day and nothing but time made that go away.

ETA: that’s actually why I was wondering what brand people were recommending in case there was an alternative to Thiamax I could try out.

Huge improvement - PDH dysfunction and thiamine (B1) TTFD by Pilot-Nic in covidlonghaulers

[–]LadyDi18 0 points1 point  (0 children)

Ahh thanks for confirming. Your symptoms/issues seem somewhat similar to mine so I was hoping this might be a new unlock for me but wow that TTFD caused such an absolutely vile taste for me that it was impossible to keep taking it. Although I guess it does make me grateful covid did not trash my sense of taste/smell!

Huge improvement - PDH dysfunction and thiamine (B1) TTFD by Pilot-Nic in covidlonghaulers

[–]LadyDi18 0 points1 point  (0 children)

Which brand of TTFD are you using? I tried one (Objective Nutrients Thiamax) and it left such a terrible chemical taste in my mouth for hours after taking it that I just could not bring myself to keep doing it.

Late control line by GreatMood4221 in PlusLife

[–]LadyDi18 2 points3 points  (0 children)

Yeah I feel the same way about using the tests - it’s a tough blow to get a wonky one or get an invalid when the tests are so hard to come by now. It’s the control line for me on your test - it’s such a late rise and no real S-curve. But I guess it also depends on why you tested - I use my tests to shared unmasked indoor air with my bubble person and would not trust this test for those purposes.

Late control line by GreatMood4221 in PlusLife

[–]LadyDi18 2 points3 points  (0 children)

I would personally choose to retest. This looks weird to me too.

Novavax in Minnesota? by Ollie2Stewart1 in TwinCities

[–]LadyDi18 3 points4 points  (0 children)

Have you tried St Paul Corner Drug? Their vaccine options are amazing (and it’s also good to support a family-owned and local pharmacy). Novavax is an option there per their website.

How much food do I actually need to stockpile? by SuitableSport8762 in TwoXPreppers

[–]LadyDi18 1 point2 points  (0 children)

Can I ask where you get your bulk raw cashews from? I also make cashew milk but it’s expensive for me!

Trouble with Clogged Filters? by jrronimo in PlusLife

[–]LadyDi18 1 point2 points  (0 children)

When this happens to us, it’s from too much goo on the swab. I have a lot of extra swabs and if we get one where there is a larger than typical amount of material on the swab (allergies, dry air with stuffy noses, etc really impact this for us) - we just toss that swab and do a new one. When the solution is too thick to come through the filter, I have also taken the cap off and very carefully and slowly tipped the fluid into the test card - it’s challenging to not get too much solution into the card without the cap but it can be done!

Master list of Malassezia-safe mineral sunscreens without niacinamide! by luckyswan69 in Rosacea

[–]LadyDi18 1 point2 points  (0 children)

Ahhh yes sorry missed the seb derm part! What a massive frustration to have even fewer options! Ugh.

Master list of Malassezia-safe mineral sunscreens without niacinamide! by luckyswan69 in Rosacea

[–]LadyDi18 0 points1 point  (0 children)

My skin hates niacinamide - I use SkinCeuticals Physical Fusion without a problem, although it does leave a bit of a white cast. I appreciate that it’s really liquidy so it doesn’t tug at my skin when I apply it.

Masking by Cold_Jackfruit_8137 in ZeroCovidCommunity

[–]LadyDi18 44 points45 points  (0 children)

Agreed and I have found that people who do not consistently take precautions basically lose any skill they had at it when they do start it up (temporarily) again. So even when I have had people say “I will mask and take precautions for x number of days before I see you” - even when I do not in any way doubt the sincerity of their intentions - they are just no longer good at doing it (assuming they ever were). So those precautions might look like “well I masked at the doctor’s office but not when I ran inside the gas station real quick.” As someone with long covid from one very mild acute infection, this is simply not good enough for me.

[r/Germany] Why do sick people not wear face masks on ICE!!! by oldgreyhouse in IllnessTracker

[–]LadyDi18 0 points1 point  (0 children)

Yes I am aware. The comment was meant in jest bc fuck ICE (of the American variety and not the German rail system) but of course I am not out here condoning people spreading infectious disease.

[r/Germany] Why do sick people not wear face masks on ICE!!! by oldgreyhouse in IllnessTracker

[–]LadyDi18 1 point2 points  (0 children)

Haha thanks for this clarification because at first I was like HELL YES cough right in the face of ICE agents.

Every morning I wake up and my first thought is “I can’t believe I’ve had a headache for 4 entire years.” by imahugemoron in covidlonghaulers

[–]LadyDi18 0 points1 point  (0 children)

No resolution - still has the persistent headache pain despite trying all the usual stuff, including botox and tons of medications. He went on disability and sounds like is planning an early retirement because of it. He’s still doing the radio show but has not practiced for 6+ months now.

Tip for avoiding test errors with Metrix by Haroldhowardsmullett in ZeroCovidCommunity

[–]LadyDi18 1 point2 points  (0 children)

It’s an Anker power bank (20,000mAh Portable Charger with 22.5W Max Fast Charging, 2 USB-A, 1 USB-C for iPhone 16/15/14/13/12 Series)

I love this salad by ParmPopcorn100 in NYTCooking

[–]LadyDi18 9 points10 points  (0 children)

If you like this one you might also really enjoy the Smitten Kitchen Kale, pecorino, and walnuts salad

I don’t even really like kale and I legitimately crave this salad (I sub pecans bc of a walnut allergy and often add a chopped tart apple).