Caro M

@useless_priest @Oli_veree It’s a stupid name because the issue is ANS dysfunction which is way more involved than simply a HR rise .

@Oli_veree Part of me is wondering whether POTS as a construct is fundamentally meaningless, if it doesn't describe or focus on the relevant pathology.

I didn't realise so many people with dysautonomia found little improvement with ivabradine. I'd assumed it was a first-line treatment with a tangible benefit.

@useless_priest @danka_mm Yeah absolutely . It’s the cerebral hypoperfusion / OI not the actual HR. I just want blood flow in all the right places please!

@danka_mm Midodrine helps others more than ivabradine and it doesn't really treat root cause either. I was under the impression that tachycardia was one of the most debilitating aspects of POTS but I gather now it's more the general cognitive / dizziness / orthostatic stuff.

@SpeakOutNow16 @ThePOTSPostman It’s coming. The Lumia device is very promising

@ThePOTSPostman if only it was easily verifiable (can only be seen on expensive scans as far as I know ) people wouldn’t feel so gaslit

People with POTS can experience what’s called cerebral hypoperfusion. Reduced blood flow to the brain. Your brain isn’t being supplied the way it normally is, so everything slows down. Thinking takes more effort. Words don’t come as easily. Memory slips. Processing feels delayed. It’s not a lack of intelligence. It’s your brain trying to function without enough blood flow.

@ThePOTSPostman @Jay63104510 For me it’s a different feeling to adrenaline jittery which I feel is in the blood and the buzzing/ thrumming feels nerves/ nervous system. I think it’s backlash from ANS working overtime trying to stabilise me beyond capacity

@Jay63104510 I think it has to be adrenaline or blood flow related cause I feel it after movement or the next morning after work

One new symptom I’m having lately is when I wake up or after work I get an almost internal vibration feeling in all my muscles. It’s like my muscles are buzzing. It’s a very hard feeling to explain it’s accompanied by heaviness, but I’m not really sure what it is.

@ThePOTSPostman I call it buzzing / thrumming . I get it when I’ve overdone things. It’s awful. I find Valium at night helps dampen it if it’s stopping me sleeping

There's been an interesting graphic floating around the Interwebs recently that I thought might benefit from a post-publication review. Hope people find it helpful.

@sunsopeningband @WanderingSally Oh THANK YOU! Can we share it far and wide?

Ehlers-Danlos Syndrome isn’t one condition. It’s 13. And on Rare Disease Day, that distinction matters more than ever 🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓 hEDS and HSD together are estimated to affect 1 in 500 people. That’s not rare, that’s one of the most underdiagnosed conditions of our time. But most types of EDS are genuinely, devastatingly rare. Some types have fewer than 30 cases ever documented worldwide. Most doctors will never see a single patient in their entire career with some of these rarer types. Today, we stand with every single person across the entire Ehlers-Danlos Syndrome spectrum. The ones still waiting for a name for what they’re living with. The ones whose type is so rare their doctor has never seen it. The ones who need more funding, more research, and more urgency. Now. 🦓 Every stripe matters.

@75ThunderRoad We had a similar situation and the phone was a lifeline.

9/9 I would urge school leaders & system leaders to think very carefully when reviewing their mobile phone policies. The situation requires pragmatism, compassion and balance. An outright ban could prove harmful - devastating, even - for a huge number of young people. End.

Three years ago, when my daughter had become consumed by anxiety, her mobile phone was a lifeline for her at school. She was in a mental health crisis. In school, at breaktime and lunchtime (not during lessons), she would sometimes use her phone to message me or her mum. 1/

@yogastephy @saffronandsky For me I find listening way less taxing than reading with my eyes. And I was sheets a good, fast reader before becoming unwell

@saffronandsky Curious.. does it feel the same if you are reading vs listening to a book?

Heart rate pacing is fairly useless to those of us who are bedbound and get PEM primarily from cognitive activity (such as reading, using a phone) that doesn't raise our heart rates significantly, right? At least that's been my experience so far.

@Naomi_D_Harvey @deborahbrian @Michaeltikus I don’t get food or fragrance issues either but I do get bad hay fever and allergies yo certain insects and spontaneous occasional rashes. So who knows? H1 antihistamines help somewhat . H2 haven’t noticed a difference yet but only tried one.

@deborahbrian @Michaeltikus All I can say is “I’m as sure as I can be”. I’ve never responded to any treatment aimed at MCAS and I don’t get food or fragrance related MCAS patterns I see others describe. It’s impossible to know for sure but as far as I can tell it’s not a factor for me.

Why isn’t there a word for the feeling nausea causes in your whole body? Like, the nausea that’s in my arms, and legs and abdomen, not just my stomach and throat 😣

@blondemedSJW @SalvMattera Most patients would rather you say “ I don’t know “ rather than “ I think it’s in your head “ or a misdiagnosis . History shows us there are many legitimate illnesses that once had no test and were wrongly thought yo be psychological.

@SalvMattera I guess the question is what do you do when you run every test under that sun and find nothing? As doctors that puts us in a tough position. It’s hard telling patients “I don’t know what’s causing your symptoms we’ve done every test and can find anything.”

FND is not real. It is a fake, placeholder diagnosis created by the medical system to hide their ignorance behind impressive sounding language. The diagnosis has no useful purpose

@ThePOTSPostman Have you tried radical rest?

My fatigue is so bad yet my body can never get in a restorative sleep. My brain refuses to go into deep rest. It’s stuck in survival mode.

So saddened to read about another person who tried to live with ME and chose euthanasia over the inertia and indifference of a medical system that provides neither treatment nor care. People are literally dying while society dismisses the problem as a little “chronic fatigue.”

@DiaryofaSickGrl It really is the most ridiculous thing to think. The number of people faking would be like a drop In the ocean compared to the numbers actually unwell. And who would choose illnesses that are well known to be misunderstood / gaslit?

Some people think that chronically ill people are faking for attention. Do you think that if I could choose ANY WAY to be interesting that *medically* would be my first choice? 😂😅 It is NOT fun. I would love to be medically unremarkable and interesting in better ways.

@CherylharrisRD @DiaryofaSickGrl If you have PEM in POTS , you probably have undiagnosed ME. It’s a huge comorbidity and for some inexplicable reason , many Dysautonomia ‘ specialists’ don’t consider it or screen fur it or warn about it .

@DiaryofaSickGrl of course! PEM is very common in POTS

Can people with EDS have PEM?

Being a neurologist does not make you the master of the brain, and it’s that mindset that leads to labeling every unexplained case as psychological. It does not give you the right to speak the final word on conditions we do not yet understand. The hardest and most honest part of the job is saying “I don’t know yet.” Freeing yourself from the need to play God is the first step to truly learning from patients and helping them without causing medical trauma.

@sunsopeningband Agree. Interviewing lots of pwME at the moment. Triggers are viral, gastro, big traumas like childbirth, vaccination, or nothing obvious at all. To me it's any major insult to the immune/nervous system that, for the right people (with the wrong set of genes?) sets off...

Now the important question: did baselines recover? Overwhelmingly, no. Subtracting the show results, only 29.7% said their baseline recovered. #MECFS x.com/RipperMD41/sta…

@karenphysiocouk @useless_priest Thanks for this thread. It’s a great example .

@useless_priest Let's take post stroke fatigue as an eg. It is very debilitating, limits function and quality of life, can persist for years/indefinitely. Exacerbated by exertion, physical or cognitive. It's extreme tiredness, can reduce cognitive/physical function. It isn't PEM...

Does repeated PESE in non-ME lower baseline?