Just How Bad Is a Long Covid Tilt Test? | With Dr Boon Lim (Film 2)

Want to know how someone with Long Covid copes with a tilt test compared to a healthy control? In this film I talk to Dr Boon Lim, Cardiologist and Electrophysiologist, and clinical lead for the Imperial Syncope Unit @ Hammersmith Hospital to discuss the ins and outs of everything tilt test related, and exactly what's going on in your body when you have dysautonomic Long Covid symptoms.
Dr Lim is also author of Penguin Life Expert Book "Keeping Your Heart Healthy":
amzn.to/3n6Vi4r
drboonlim.co.uk
The Long Covid Handbook (Oct 2022), by Gez Medinger and Professor Danny Altmann and published by Penguin Books is now available in paperback, ebook and audiobook. A singular resource that brings together everything patients, clinicians and academics have learnt about the condition since early 2020, as well as lessons from sufferers and researchers of ME/CFS and other chronic conditions. It offers world leading expert advice on understanding, managing and treating Long Covid. The Long Covid Handbook is available from the following links:
US: a.co/d/0gvkJCU
UK: amzn.eu/d/9KjurGb
Part 1 : Dysautonomia with Dr Boon Lim
• Fixing Your Autonomic ...
Part 3: How To Boost Your HRV
• How to Boost Your HRV ...
In the next film in this series we will discuss the importance of HRV and how anyone can boost theirs in minutes - relieving Long Covid symptoms and aiding recovery.
The device used by Dr Lim is called the Inner Balance (from HeartMath). There is a discount code (StopFainting10) which you can use to get a 10% discount on the order at: www.heartmath.co.uk/shop/
CONTENTS:
0:00 Introduction
1:00 Long Covid Tilt Test
5:02 The 60 Degree Tilt
6:35 The Physiology Involved
13:20 Dysautonomic Crash
16:15 What Happens If You're Not Dropped?
19:00 Healthy Control
21:49 More LC Examples
25:30 Diagnosing PoTS
27:45 How is LC Causing This?
32:07 Outro
RESOURCES:
stopfainting.com/long-covid-r...
Suzy Bolt : Rest Repair Recovery program
www.360mindbodysoul.co.uk/
ENO Breathe:
www.eno.org/breathe/
Breathe yourself better (link to Inner Balance here with 10% discount code - also supporting the www.stopfainting.com website!)
stopfainting.com/breathe-your...
Article - freely available: Autonomic dysfunction in long covid:
stopfainting.com/wp-content/u...

[@vanjacalantropo]

On behalf of all long Covid community I want to thank Gez once again for his enormous help and support he offered to each one of us throughout this journey 🙏👍🙏

[@RUNDMC1]

Thank you so much for the support Lola!

[@nicklequia526]

Hoping that everyone is liking and sharing this content. No one else is better representing COVID long haul sufferers than this channel. We need to show some support.

[@RUNDMC1]

Thanks so much Nick!

[@ianseaweed]

Absolutely fascinating as ever. It’s not just big oscillations in blood pressure and heart rate I’ve recorded over time but also a crazy variability in body temperature from day to day. Been thinking my autopilot has gone bonkers.

[@brobinson8614]

As for personality types, Post viral illness in my opinion can be triggered in these high functioning, high stress environment people, but unfortunately living stress free or managing stress only slightly helps, The mind is not going to cure Long Covid or ME/CFS. Heres why, During stress, hormones (stress messengers) are released. During infection cytokines (immune messengers) are released. The problem is when stress and infection occur together. Cytokines and hormones are very similar behaving messengers and they interfere with each other. That interference causes big mistakes, where the immune system is attacking a pathogen it also attacks a part of the human body with a similar molecular shape as is on part of a pathogen that the immune system sees as a threat. This is called 'Cross-reactivity' (also known as 'Molecular mimicry'. So people with higher stress levels have higher hormone activity. Women naturally have higher hormone levels and that is shown in the much higher rates of autoimmunity (approx 2/3rds). including higher Long Covid and ME/CFS Once autoimmunity is established its usually life long. De-stressing your life may somewhat help, but its not going to reverse autoimmune disease because the immune memory will keep attacking what it assumes is a pathogen made by your body. German researchers have already found 6 autoantibodies that in different combinations show up in Long Covid. 2 of which are found in a large subgroup of ME/CFS, also found in POTS. Whats interesting is these auto antibodies target the M2 adrenergic receptors and cytokines and chemokines themselves. These aren't good things to have an auto immune attack happening on. Having them attacked would cause all the symptoms of Long Covid and ME/CFS. Mental state can't turn off this immune memory. However not triggering Post Exertional Malaise (PEM) would over time make the immune system start to forget the wrong autoimmune targets, like forgetting an infection you haven't had in years. A woman with ME/CFS prevented all causes of PEM over an entire year and fully recovered Mental state possibly can help lower stress just enough that keeping the adrenergic system dampened down to prevent immune system aggressively attacking it, This maybe helpful in the immune system not seeing it as a threat anymore. But thats not guaranteed. Because this is not a mental disease. It's a biological disease set up by a perfect storm of stress hormones cytokines and a faulty immune memory.

[@debbielunsford3116]

Great information!

[@Stonehead52]

More doctors and healthcare professionals should be watching these videos - it might result in a few of them changing their views and hopefully their practice. I ended up in A&E at the weekend after crashing halfway through a 12-hour shift on my ward. (I had a new Covid infection two weeks ago that exacerbated my Long Covid issues.) After initial assessment, I was moved to a short-stay medical ward where I was seen by three doctors, including a consultant. They ruled out cardiac issues, post-Covid pneumonia and a pulmonary embolism, which meant that “you’re clearly very unwell but there’s nothing we can do”. I was in serious pain (7-8 out of 10), extremely short of breath, and my chronic dry cough (two years from initial infection) was much, much worse. Nurses on my ward (cardio-respiratory) thought nebulisers and pain relief would give me immediate relief but that wasn’t an option in A&E or on the short-stay ward as the doctors didn’t have a diagnosed condition and therefore a clinical pathway to follow. So, I was discharged at 23:40 and drove home - 45 minutes away - having been on the go since 05:00, suffering chronic sleep disruption, utterly fatigued, still in pain and short of breath. I staggered through the hospital, out to the car park and somehow managed to get home. It was bad. On top of that, I haven’t been able to get a GP appointment in 11 months and the one time a GP phoned me, after Neurology contacted her, she said “it’s just normal aches and pains”. So I’m back on the sofa and catching up with Long Covid research and videos. Thanks for this one - very informative.

[@RUNDMC1]

Oh god that’s awful - I’m so sorry. Best advice is to rest as much as possible now!

[@KylieBling1]

This is so refreshing! What an exceptional and compassionate person Dr Boon Lim is :-) it's great to see how the mechanics of LC are being unfurled and that people are now starting to appreciate that life experiences 100% shape (and not just influence) the body's physiology through our ANS. The body really does 'keep the score'.. I also think this whole video shows the importance of letting TIME be our healer, a thing that has become utterly impossible in today's society. A dramatic change in mindset is needed to allow everyone a period of 'convalescence' after we've become ill. It's not easy from a professional and practical pov but by god do we need every bit of rest and peace of mind to recover from this horrific disease. As someone who, before Covid hit, had NEVER fully been recovered from an illness before going straight back to work (as most people would!), I'm pretty sure that this past behaviour was a huge contributing factor to developing LC.

[@bredadonoghue1348]

Thank you so much for putting into words the physiological changes that happens with this condition. I have been diagnosed with Long Covid and this is totally what is happening to me. Brilliant explanation and I’m loving the holistic approach 👏👏👏👏

[@j.d.daggett5481]

Thank you, Gez for all of your videos. The last two have been brilliant. They should knight you over there in the UK.

[@RUNDMC1]

Very kind of you J.D.!

[@nicolaholmes2531]

@@RUNDMC1 LOL, Knight Medinger, love it! ;) I would add my vote.

[@RUNDMC1]

@@nicolaholmes2531 haha!!

[@janet6909]

Always looking forward to new videos!

[@JagHiroshi]

I look forward to the conclusion. This has been very revealing so far.

[@danide8287]

Thank you doctor. I had my TTT done by prof Visser in the Netherlands who also measures cerebral blood flow with a doppler. Mine was -39% compared to supine, which apparently is not uncommon in Long Covid, even if patients do not have POTS symptoms.

[@gregor6454]

Can't ffin wait for the next chapter with Dr. Boon!

[@RUNDMC1]

Cheers Gregor!

[@Alex-eh7gl]

Superb as ever Gez, thank you.

[@RUNDMC1]

Thanks Alex!

[@melaniegreen4217]

Thank you both for this excellent video. We're learning so much from your videos and seem to know more than the Specialists treating us from your videos. Thanks again.

[@tonyrabone4668]

So informative. Personally standing and walking are fine; even restorative until or unless I overdo it (running, hot yoga, walking more than 90 mins). Long periods of lying down (sleeping) are bad for me and cause the "hangover from hell" feeling. I've tried an afternoon nap then a later night so that I sleep shorter. But once I've crashed (say after a business trip) it takes 3 days to recover).

[@tonyrabone4668]

Inspired by this trilogy I bought a blood pressure monitor. I found that my blood pressure was dropping really low when I first measured it every morning and that might perhaps explain why I feel so ill each morning. I then experimented sleeping inclined (3 pillows) for a few nights and it made a massive difference. I'm now waking up without the hangover from hell each day. I hope this informstion helps someone else.

[@nicolaholmes2531]

@@tonyrabone4668 This is fascinating - for months, I intuitively slept with pillows to keep me more semi-upright while sleeping, especially when my heart pain and rhythm problems were more acute. Makes me think also about the power of really experimenting and listening to our bodies and measures of subjective wellbeing.

[@deethompson3592]

Another exceptional video - Thank you Gez and all your experts 👏👏👏

[@RUNDMC1]

Thank you Dee!

[@crystalwebb5725]

This was the very best description of trauma conditioning that I have ever heard. Thank you both so very much! I might actually be well one day.

[@keithdagnall7686]

I attended a Long Covid Zoom interview by Gez recently on behalf of the Sheffield ME/CFS and Long Covid Charity i was so impressed by all the information Gez forwarded onto us. Though what I still really don't understand is the total inconsistencies with service regarding diagnosis and treatment for Long Covid, I personally have had non. Keep watching and learning

[@RUNDMC1]

Hi Keith - yes, there’s a massive inconsistency in care. It all depends on whether you have a knowledgeable, curious and empathetic doctor in the first place - and that’s before you even get to the LC clinics which are wildly variable too.

[@SweetiePieTweety]

Very helpful!!! Thank you both so much ❤️❤️

[@RUNDMC1]

Thanks Karen!

[@charroberts9821]

Thank you! What interesting results!

[@nadinehardiman6316]

Thanks again for this. Hear so many scary stories of tilt tests and have never heard such a good explanation. Wish Dr Lim was around here. Doctors are not well versed on POTS. Thank you both!

[@RUNDMC1]

It’s a pleasure Nadine!

[@mary3659]

Nice job!!!

[@mq46312]

I had similar tilt-table test results as yours. Done in January 2021. First 10 minutes lying down was fine. After being tilted my heart rate gradually increased by about 20-30bpm, and after 9 minutes of being tilted my BP suddenly dropped to 60/40 and my HR dropped to about 60. I felt very faint and almost passed out. The cardiologist concluded Autonomic Dysfunction, but not enough for POTS. Just like you I am not completely intolerant to standing. I can stand for a prolonged period, although it does feel a little uncomfortable. In my day to day live I do not have a problem passing out while standing. Since the tilt-table test in January I have improved in being more comfortable standing and I now have less fear of having to stand for a longer period of time, but I am still far from normal. The nervous system is still hyper-active, and I still suffer from over-stimulation, poor sleep, all the usual symptoms.

[@masoudhashemi5792]

Did it caused by covid?

[@mq46312]

@@masoudhashemi5792 Suspected. I was never tested. Got sick in late Feb 2020.

[@RUNDMC1]

The next film is going to be particularly relevant for you (as it is for me!)

[@masoudhashemi5792]

@@mq46312 thanks for the reply I hope u get better soon

[@amirx8870]

@@masoudhashemi5792 من چه جوری با شما حرف بزنم !؟

[@MG-iq6lr]

Very interesting thanks

[@LindaD02]

I go tomorrow for mine. Doc told me to come off the beta blocker and I have been feeling it. HR has jumped to 170 w minimal exertion. Long Covid since 2020. Did a stress test but they didn’t pull my beta blocker for it (diff cardiologist). Saw the cardio/dysautonomy and he scratched his head and said so on a decent day betas work but if your in a crash or flare it doesn’t. I also have MECFS with post Covid dx. Life altering. I was a very active person. Not enough is being done for long Covid patients. Gov has been given all this money and our medical bills are piling up. I’m seen every 6 months by all my specialists. Very frustrating. Had to quit my job as ER coder bc I couldn’t do it. Mentally or physically. I also throw PVC and PAC.

[@MaxPayne-fi1mz]

Update

[@LindaD02]

@@MaxPayne-fi1mz I made it 22 min into the test and passed out twice. Third time as they lowered the table and I thought I was dying. They couldn’t get a bp because my bp dropped too low for the machine to pick up. They were squeezing my NS fluid bag trying to get fluids to raise my bp. The test itself was awful. I have to go again and repeat in 3 weeks to see if I have hyperadrenic “hyper” POTS.

[@MaxPayne-fi1mz]

@@LindaD02 Wait so u haven't improved? Didn't they say that we all recover??

[@alexandrecouture2462]

Very interesting!

[@JJJJJJJJJJjjjjjj807]

Thank you Gez for sharing this. You are a lifeline. Amazing work!

[@RUNDMC1]

Thank you J!

[@JJJJJJJJJJjjjjjj807]

@@RUNDMC1 Sitting here in the countryside of County Cork, Ireland, educating myself on my long covid. Only 4mths in with perpherial neuro stinging intetminnent, tinnitis etc. Breathwork a fantastic discovery. Your videos, links, help and advice have given me real hope!

[@RUNDMC1]

@@JJJJJJJJJJjjjjjj807 at 4 months in if you do all the right things your chances of recovery are good. Don’t overdo it!

[@JJJJJJJJJJjjjjjj807]

@@RUNDMC1 Thank you. I hope some day I can thank you in person. Regards, Justin! I hope you are managing well!

[@ailsa7555]

These videos are fantastic. Thank you for continuing to create them, I have been on the journey with you since the first wave. Is Dr Lim wearing an microphone or an alpha stim type device? It is next on my list of things to try but the price is a factor.

[@RUNDMC1]

It’s an HRV meter - all will be revealed in the next ep! And thanks for the support Ailsa :)

[@ailsa7555]

@@RUNDMC1 looking forward to the next video. I have been tracking my overnight HRV for nearly 2 years.

[@mischa1714]

This is enormously helpful as I have been prescribed a Tilt Table Test by my geneticist who has clinically diagnosed me with hEDS and dysautonomia. I have passed out dozens of times throughout my life, so am nervous to put myself through this experience, but hope that the docs with whom I’ll be working, will be informed about cutting off the test BEFORE I pass out. Thank you so much for this education.

[@RUNDMC1]

It’s a pleasure Mischa!

[@cinbird6284]

Please ask your doctor to measure your oxygen before during and after tilt table tests. I have POTS and a different kind of POTS.

[@pashkowellness]

Did Dr. Lin give you an idea of the percentage of people with LC experiencing POTS? It's unbelievable what this does to the body. I was able to almost fully recover from Chronic Lyme Pre-Covid, but this is something that is very difficult to explain to friends or physicians. They think I'm just experiencing a Lyme flare but it's much more complicated. I didn't have any dysautonomia before. I truly wish most doctors understood how this works.

[@RUNDMC1]

I haven’t heard a %age but it’s very, very common

[@brobinson8614]

This is why I wear medical grade 3 or 4 compression tights and a waist compression belt

[@brobinson8614]

I thought I'd transfer my comment from the previous video here because of the discussion of evolutionary reasons for why we have these responses. >>>Another way to alter the sympathetic nervous system is do what Free Divers do, i.e. put your face fully into water, as this triggers the 'Mammalian Dive Reflex' which tips the body into an anaerobic state, It's a well known physiological response that happens to mammals whose face (facial nerves) comes into contact with water. Its evolution's way of keeping essential organs alive as long as possible when under water without an oxygen supply, especially the brain as it needs glucose and oxygen as fuel. Instead the arms and legs start using fats and amino acids as an alternative fuel. Which is the state we Long Covid and ME/CFS folk are currently locked in. It got me thinking that there must be the opposite response when the face is dried afterwards, because mammals revert back to normal aerobic state (start using glucose as fuel in the muscles again) after getting out of water. So I wonder if we regularly put our faces in and out of water several times a day, Knowing that each time we dry our face afterwards, that the body will try to return to the preferred aerobic glucose burning state. Basically doing this would be nudging the body back and forth from two different fuel states, trying to hopefully nudge out bodies back into normality. I did talk about this idea to a scientist a while ago, and he said he didn't think it would work because although thats whats happening in ME/CFS. The mechanism locking people into the anaerobic state was caused via a different pathway. So I never bothered with my idea, but now watching this video about clunking, I wonder if its worth trying for a few months to see if any improvement happens?! Note: if anyone does want to try the idea, it's good to know that some free divers open their eyes under water because eyes have more nerves to trigger a more powerful 'Mammalian Dive Reflex'. (Also best add salt to the water you put your face in so doesn't hurt your eyes as much)

[@RUNDMC1]

Interesting idea!

[@j.d.daggett5481]

Thanks!

[@katewright492]

Very informative as always! Looking forward to the conclusion. I've got a POTS test lined up next week but the cardiologist said they don't do tilt table test anymore, just check your HR and BP before and after standing. Hoping that will still show something!

[@RUNDMC1]

I think it probably will!

[@ailsa7555]

As long as you are standing for 5 to 10 minutes it should show POTS if you have it. It is also easier for everyone than a TTT. Other types of dysautonomia might need different testing.

[@kiwipics]

@@RUNDMC1 ..... Are all of these tests that you have under the NHS or are you going private ? I haven't received any NHS follow up or GP interest after leaving ICU in April 2020. If you're having all this done by the NHS, how have you managed to get it done ?

[@RUNDMC1]

@@kiwipics My tilt test was on the NHS. It came after referral from my GP, via another referral from resp. specialist but took over a year to happen.

[@kiwipics]

@@RUNDMC1 ..... Thanks, I've not had any joy from GP / NHS since being discharged from ICU in 2020.

[@andocobo]

His psychological explanation for triggering the illness is extremely inaccurate I think. I’m not disagreeing that there’s a psychological element, but I think his example was terrible and suggested to me a deep misunderstanding of what actually causes these kinds of conditions

[@anthonyminniti17]

Great video as usual Gez!. Is it possible to have a full recovery from dysautonomia symptoms from treatments like meditation?

[@RUNDMC1]

Yes people do recover - usually requires some changes in the rest of your life too though

[@harryboby7563]

Thanks for this again Gez - in terms of the brain fog and fatigue - did Dr Lim seem to think this is again due to this fright/ flight thanks to pooling/ varying blood pressure?

[@RUNDMC1]

It may not be responsible for ALL of the brain fog / fatigue but dysautonomia definitely leads to poor cognition.

[@Prince9146]

Harry where you not cured after that gupta program bro?

[@bethalpert2376]

Hi Gez, thx bunches for video 2 :):). Have you made a video about your alpha stim machine? It that the same as a TENS unit? I have a 25 year old TENS unit. I'd try it if I knew the proper way to use it and if it would help me get upright again. Thx much in advance.

[@RUNDMC1]

I’ve not made a film about the alpha stim, but definitely give that tens another whirl!

[@nicklequia526]

I wonder what the difference between this and any other TENS device are?

[@thirstythursday123]

What medications help with POTS? Very informative video. I had a quick positive tilt table 17 years ago.

[@RUNDMC1]

Watch part 1 of this series! (Link in the description)

[@bradfreeman8149]

Awesome video mate! Do you agree that, my heart rate doubling from sitting to standing would suggest POTS? Of course just asking for your opinion 🙂

[@bradfreeman8149]

Actually, don’t answer that… Will wait for your HRV one haha.

[@RUNDMC1]

Yes, absolutely that suggests POTS!

[@cinbird6284]

I think that could be POTS. I am a person with diseases that happened before I got Covid.

[@wildhorses6817]

I highly recommend Gez, that you speak with Dr Peter Rowe, John's Hopkins, Maryland, USA. He had done research over 20 years ago and is one of the major Researchers. Please contact him. Thank you.

[@chelseabangs9657]

Well I’m at the point where I have absolutely no faith in western medicine for long covid. I went the juicing route and the flare up that usually takes weeks to months to clear was over in under an hour. I enjoy being active and work with my hands so all this inflammation in the lower half of my body has to go and the rash on my hands that stop me from coloring hair.

[@LavidaLovesCoils]

Are you a stylist? I own a salon and retail space and I missed 3+ weeks of work. I get up feeling very fatigued and I HAVE to go to work. The most helpful visits were an urgent care last Saturday and several cardiologist appts to rule out any heart damage/problems. The numerous Drs visits and ER vists were absolutely a waste of time, sleep (that is difficult to get.. insomnia not as bad as it was in the beginning, thank God) and energy. It seems that many are turning towards nature and paying specialists.

[@nomebear]

@@LavidaLovesCoils I'm right there with you. Trips to ER and numerous specialists was a total waste of time.

[@joob40]

News flash... it ain't just long COVID. It's literally all chronic illness.

[@robduke1445]

Could I ask, what is the juicing route thanks?

[@rSOAPY]

@@robduke1445fr

[@natalierobertson1295]

I am getting this done; this month

[@RUNDMC1]

Hope it goes well Natalie!

[@mmschley]

When I go for a jog my heart rate gets up into the 160s pretty quickly. When I stop it slowly comes back down. When I attempt to start up again my legs feel like they are made of lead. Very heavy. Is that because they still have all the blood? I also play pickleball and my heart rate gets up above 200. Maybe the starting and stopping is difficult on the heart regulating the blood flow? Sometimes when I'm all done playing and sitting in my car I feel like I'm going to faint.

[@vanjacalantropo]

I wonder how far into long Covid is it safe to have this test done? Or can we have it done any time? My tilt is scheduled in August which will be 8 months in.. Dr. Boon is so knowledgeable! 👌

[@RUNDMC1]

Be aware that it may trigger a crash - it did for me.

[@vanjacalantropo]

RUN-DMC/Gez Medinger so sorry about that ☹️perhaps I’ll wait longer before I have mine

[@HumorFiends]

@@RUNDMC1 what do you mean a crash?

[@RUNDMC1]

@@HumorFiends a relapse in symptoms

[@hoby56]

I wonder what the tilt test would look like if you did a portion of it while doing breath work and alpha stim. Handn’t heard of alpha-stim before! Do you recommend it?

[@RUNDMC1]

I do recommend it - although there are cheaper alternatives

[@marcus1270]

Does this mean that you have orthostatic HYPERtension and delayed orthostatic HYPOtension?

[@michaelbrown-lj6yb]

You do such a great service to us long Covid19 sufferers I would like to take that test how could one get such a test done

[@RUNDMC1]

Depends where you’re based!

[@michaelbrown-lj6yb]

I’m not too far from Hammersmith I’m in the Ealing area just up the road

[@michaelbrown-lj6yb]

Every thing that was said including type of lifestyle and work schedule before Covid19 and now the symptoms after Covid19 seems exactly what is hard to explain to some people that just don’t understand that’s including some doctors

[@wortelsorbet]

Are there other infections that cause VVS? Can it be genetic? (it seems to be in my family with onsets well before Covid started).

[@avisakorka9218]

Hey Gaz how are you feeling in general? still feling the MCAS?

[@RUNDMC1]

MCAS better these days but Omicron set me right back

[@avisakorka9218]

@@RUNDMC1 it's crazy I'm the same .... although thanks to the hot sauna and cold water 2 times a week I'm almost back to normal my food range he's getting Mach better and recovery was easy plus energy level like before covid (march20)

[@ChaiLatte13]

I never had COVID, so my issues are long EBV lol Cleveland Clinic TTT was 45 minutes long if you didn't faint. It would have been better if I fainted. Can't believe his heartrate is totally normal until the end. Wild. Mine was immediately 155 and they made me stand there like that for 45 minutes. After care was non existent and never was able to coordinate with them to do the other tests they wanted, so don't recommend.

[@RK-yg5zr]

Should I stop taking ivabradine before a TTT?

[@RUNDMC1]

Ask your doctor!

[@venuslatte1522]

Seems the resting and paceing is it. Mine took 14 months to have strong legs and arms. Budesonide helped brain fog.

[@nicklequia526]

What form of Budesonide did you take? Nasal spray or pill? Why do you suppose that helped?

[@sloth6247]

Could it possibly be endothelium damage? I’m about to go to the doctor because the veins in my hand and feet are distended, stretched and they hurt for them to tell me I’ll be okay it’s psychosomatic.

[@RUNDMC1]

Endotheliitis is widely reported in Long Covid

[@sloth6247]

@@RUNDMC1 Do you know if the microclots are clearing once patients report full recovery?

[@RUNDMC1]

@@sloth6247 we don’t know that yet unfortunately

[@sloth6247]

@@RUNDMC1 I saw the cardiovascular surgeon. He said my veins were totally normal!!! and that I should work on my mental health!!!!! I feel like I’m in the twilight zone. I’m getting to the point where I physically want to hurt the doctors.

[@RUNDMC1]

@@sloth6247 I’m so sorry :( This kind of gaslighting is all too common.

[@rebakuhshowz]

2 months after covid , I noticed a drop in pulse to 50. It began more frequent until one day it dropped to 40. I saw the correlation was with caffeine. However the Dr. can't seem to understand what is going on.

[@cinbird6284]

Have you seen a cardiologist whom understands POTS and Neurally Mediated Hypotension?

[@adamlicciardi9686]

Is vasodilator like viagra bad for dysautonomia?

[@RUNDMC1]

Maybe, but it’s good for endothelial health!

[@youknowtherules8888]

Does dysautonomia cause erectile dysfunction? I had a seizure like behaviour in April 2022 and now can’t stand very long and no erections! I’m in my early twenties!

[@RUNDMC1]

Erectile dysfunction is reported widely in long covid - although sounds like yours may be related to your seizure. Go see a doctor!

[@youknowtherules8888]

@@RUNDMC1 I’m scared. I’m hoping it’s not MS. The doctors are not much help.

[@duneideann9241]

Does anyone else these symptoms getting out the bath. I dread getting these days

[@tarareffell4187]

Yes I have to sit on the floor straight away. But at least I dont feel like fainting now. Worse after a hot bath. Some research says alternating hot and cold showers would be good for us. Go steady and stay calm as you can x

[@duneideann9241]

@@tarareffell4187 Thanks , thought it might just me. Always like a hot bath and never bothered me before LC Get out very week and gasping breath Feel ok in the bath

[@RUNDMC1]

Yes, if the bath is too hot or too long! Puts too much pressure on the autonomic system to handle the temperature control

[@duneideann9241]

@@RUNDMC1 Thanks for the reply. Wasn’t sure I had these problems or not. Too happy lying down 😩

[@duneideann9241]

@@RUNDMC1 How do you best explain this to the hopeless doctors I have had to deal with over that last nearly 2 1/2 years 😩

[@AJansenNL]

Good video, but the last bit... Sorry, this whole 'personality' thing is unproven. The normal exigencies of life push most people to continue, to ignore their symptoms. The ability to rest and pace is often more a matter of privilege than anything else. It's just not our culture anymore. Though it should be. But you have to go to work to pay the bills, have to look after kids, elderly parents, the home. More often than not, our culture even pushes the 'exercise is healthy/rest is bad' narrative on us. This kind of narrative (personality types) is mostly speculation. Often harmful speculation, because it leads to stigma. There are far more plausible explanations, such as chronic inflammation in the brain and/or of the vagus nerve. See the work of eg Jarred Younger and Michael VanElzakker.

[@RUNDMC1]

I think the point is here that patterns of behaviour have an impact on the autonomic system.

[@AJansenNL]

@@RUNDMC1 Sure. But the amount of importance attached to 'personality' is disproportionate. It can easily lead to, and has in the past, patient blaming. There are so many other factors that our not in our control that have a far greater impact.

[@melanieolmsted6740]

So basically your body reacts as if you were being chewed up by a tiger. Fascinating. Perhaps it is easier than being eaten than a lion. Good news all around.

[@RUNDMC1]

Pretty sure mine felt like being eaten by a bear

[@melanieolmsted6740]

@@RUNDMC1 don't I was going to say bear, it was in my heart, but I decided to stay on message.

[@jond2472]

great video again thank you. Is it possible to send you a document on CFS recovery? Its one of the most helpfull things Ive read and I think you will also get a lot from it. Do you have an email?