wee update:
had a couple of pretty good weeks which has surprised me. everything in life is tolerable. still worse than before my last relapse, but if life stays like this, i can work around it. tho i usually feel "good" pre-relapse, so hoping it's not the calm before the storm
had TWO dr apps this week: 1. at the nutrition clinic: anaemia has resolved so i can stop iron supps, just got some follow up apps to check my haemoglobin, B12 etc stay stable
2. GP: spoke to advanced nurse practitioner. i was sorta ready to put up a bit of a fight as it was...
to discuss tests & meds recommended by a private dr. she was absolutely lovely tho, & shocked how much ive been suffering
- agreed to D-dimer: if elevated 1 month after anticoagulation ends I may be indicated for longer term anticoagulation as i have a high risk of further clots
- agreed to fludrocortisone (YAY!)
- agreed to increasing famotidine (from 20 to 40 mg/d)
- didn't agree to steroids, but said i can call back if i relapse
- didn't agree to melatonin but not at all shocked by that, esp as we asked for 9 mg!
- agreed to tests for antiphospholipid tests but after discussing with a GP, they werent keen on doing things piecemeal so referred to haematology, should be in 2-3 weeks
bit concerned as ive heard haematology arent up to speed on the type of clotting seen post-vaccine #TeamClots
but hopefully (if i need them) the solution will be something standard (like APS or DASH score)
So overall, very happy with that outcome and glad they were happy to help like this
i'll add also that the nurse COMPLIMENTED me on being a well read & "clearly very intelligent" patient & she REALLY listened to my concerns & explained things well
i cant stress enough how much of a difference medical professionals appreciating patient expertise makes #MedTwitter
simply by listening and explaining her POV compassionately i came away content despite not getting everything i was hoping for. if the practitioner was dismissive, we could have had the VERY SAME OUTCOME but i would feel belittled, angry, and gaslit
but no idea why it's happening (PCR yesterday was negative too)
will see if they calm down, and will discuss with haematology but ideas welcome about wtf my immune system is doing (beyond the possibility that there is some low level infection). in terms of potential immune modulators, im on loratidine, famotidine, ketotifen, statins, aspirin
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"A variety of symptoms, including thunderclap headache, focal deficits & movement disorders, can occur after SARS-CoV-2 vaccination, & an (re)activation of the immune system is suggested as [a] cause"link.springer.com/article/10.100…
I was a NHS COVID scientist researching immunity as part of the UKHSA SIREN study, and I am a vaccine-induced long COVID patient so I understand the lived experience and the science. Read about my journey here: lc-sc.co.uk/about-me
I am part of #TeamClots, a group headed by Professor Resia Pretorius, Professor Doug Kell, and Dr Asad Khan aiming to understand the role of clotting in long COVID & vaccine injury
It's even cooler than this: lying down shunts blood towards the head. This tells sensors in the brain you are overhydrated and triggers changes that make you pee more = lower blood volume
This is most clearly seen in (models of) microgravity where blood goes to the head enough to cause the forehead to swell by ~7 %, whilst shifting ~1 L fluid out of the legs, triggering diuresis
Obviously in most people lying down doesnt cause notable problems, but in POTS we are already incredibly dysregulated.
Our blood vessels dont respond appropriately so our body is more like a water bed in the way fluid shifts
#MECFS is more prevalent than MS, HIV, Parkinsons, etc. It would utterly absurd if medical professionals knew nothing of these diseases, yet this is the situation with ME
Can we also take a minute to appreciate that this was written by a ME patient. Whilst disease isnt a competition, QoL & functional capacity is lower in ME than every other disease its been compared to. It honestly feels like the closest to death you can be without dying
I dont think #POTS experts realise how all-consuming the first line treatments can be:
🚰Drink loads of water...that you can't retain because part of POTS is water-retaining endocrine dysfunction (and going to toilet every 30 minutes with orthostatic intolerance is a breeze 🙄)
🧦Wear compression garments...which are ridiculously hard to put on (especially in those with energy limiting comorbidities like ME), and are incredibly uncomfortable, especially in the heat when you need them most
🪑Be upright as much as possible...even though your literal issue is being upright. And sleeping propped upright is of course super comfortable 🫠