PoTS UK are delighted to share a range of videos with you including our recent, 'What is PoTS?' and 'Meet the Team' videos and our monthly webinars that started in April 2020. Additionally, you can view the presentations from the PoTS Masterclass held in London on 9th December 2019. We hope they will be of use to you.
If you have any queries for the PoTS UK team, please select the relevant email address from our contact list: www.potsuk.org/contact_us
Did we know at what tissue temperature did SARS COV2 better replicate ? Why ? Because at TWiV 659 at min29,virologist Christian Drosten suggest that SARS COV2 better replicate at very low tissue temperature.
It could be. Orthostatic hypotension is a type of autonomic dysfunction, and Long COVID causes autonomic dysfunction. The cause doesn’t really make any difference to the treatment, however, unless it is something that can be addressed. Have you gotten some help with managing your OH symptoms?
I had my first call with Dr Gall this week. Finally I feel validated after years of medical gaslighting ❤thank you and I’m looking forward to trying treatments. I wish all the Dr in Northern Ireland would watch this…….. they need education desperately 😢
I would really love to see Dr. Gall. My physiotherapist at the hypermobility clinic advised I see him. I'm struggling financially at the moment as paying for physio. But I'm saving up to see him. My identical twin sister is diagnosed with POTS. And I think I've had it for years...GP diagnosed me but wants me to go for further assessment to get the other treatments I need. But Im too afraid to go to NHS due to previous traumatic events. X
I had the pleasure of being a patient of Dr Nick Gall and I am pleased to say I have now been diagnosed with POTS today. my lowest is 39bpm to 160bpm it took six months to get a diagnosis after HEDS+MCAS with possibly, bachets & GI issues (inflammatory bowel) vomiting cycling, I get flare ups of stroke-like migraine can not walk or talk slatted face, the pain is unbearable lasts 3+days & can not find anyone that has this like me yet or what this is, I am incredibly grateful to Dr Gall for his professional knowledge and his humanistic approach was refreshing. I am forever grateful and full recommend him to anyone needing help & support. I am now a wheelchair user I have home cares and I am learning to adapt but answers are incredible; Dr Gall Thank you for listening and all your work it’s incredible. SL
Can you please tell me, ĥow long after all the tests did you have to wait for results? Its been 4 months since my daughters last test and we still havent heard anything, we are worried. Is this a normal wait? Shes also with Dr gall. Thank you
@@KhaosWolf96 what were your symptoms? am going through general fatigue for over a year, trouble breathing - shortness of breath and feeling kind of tightness in the chest. never had it. jabbed 3 times. Could this be related to MCAS? any advice?
@@puhacz4271 Hello, it is hard to know exactly what it is as it could be something mimicing MCAS, I have been injured for over 1 year from the vax and what I notice is that now I have gluten,yeast,lacto and histamines intolerance and every time I eat I get allergic reaction and I get inflammation in the brain region and brain fog and I can’t do sports,swim or gym or eat and drink what I want I am very limited. I am trying to go private to see what is wrong with my stomach all of this started on the first day I had the poison injection in me. I am in shock how the media and gov tried to hide people like me and how the medical community gave us 0 help.
@@KhaosWolf96 I feel for you man. I have similar symptoms to be honest. feeling like jab sensation in my stomach after I eat something. also having brainfog. Also whenever I encounter with my cat I am so allergic like never before. Cant do football/gym anymore as I used to. any foods to avoid can you recommend?
His very first slide - the umbrella Disorders of the Autonomic Nervous System associated with orthostatic intolerance - shows how poorly understood what he has walked into is, and was, that the autonomic nervous system is profoundly intertwined with the immune system and that immune mediated causes for autonomic disturbance of all types (postural and all other areas of function) are huge. That the population with post-viral immune response dysregulation are far larger than estimated. This chart needs a skilful immune-mediated autonomic colourful update to include ME/CFS and PANS/PANDAS to name just two.
Can you please tell me, ĥow long after all the tests did you have to wait for results? Its been 4 months since my daughters last test and we still havent heard anything, we are worried. Is this a normal wait? Shes also with Dr gall. Thank you
Dear Light Yes, I waited a long time too after the HUTT to get the results. Children are seen quicker I think, it depends on your daughter's age. There is huge demand. I had a couple of private appointments too. But, I do understand your worry. On all the letters I had, it explained the long waits. I am still waiting for full autonomic testing after they cancelled last May............NHS overload! Sorry I cannot encourage you more. He is worth the wait, but if you cannot, you can go private with him. Shorter waiting times.
Thank you for this. When I presented to my GP with POTs, I was told to go vegan, be more confident and eat more healthy (even though they hadn’t asked about my diet anyway). Early intervention could have stopped me worsening. I want to send this to my surgery, so it doesn’t happen to someone else.
Thank you for the video 🙂. I had Covid back in early 2020 and have been suffering from POTS and all the symptoms that come with it ever since. I recently found out about MCAS and have changed my diet to low histamine and am taking quercetin/vitamin c and have for sure seen some improvements (heart rate/HRV certainly reflects this too). As this is self diagnosed, is there anyone I could speak with further on this?
From my experience, associating POTS with mental health causes more problems than it solves. Yes, those of us with chronic conditions can experience low moods etc. But talking to therapy people and having them repeat back what we say isn't helpful. Dwelling on your problems only makes you feel worse. We should be thinking about other things not just our health. More research needs to go into finding strategies for the physical symptoms, only then can our mental health improve. Many healthcare professionals like to pretend they understand when really they've just read that the condition "is debilitating" off the POTS website homepage. I think doctors should be educated on what POTS is before we start linking POTS with anxiety, depression etc., because otherwise doctors will purely see POTS as another mental health issue and neglect to address our physical symptoms. Some of us just want physical help to get on with our day-to-day lives, we don't all want to sit in a circle and share how low we're feeling. I understand how chronic health conditions are linked to poor mental health, but that is only because our physical health is not taken seriously. Think about how many people with POTS are told they are simply anxious because they're young and female? The less POTS is associated with mental health, the more quickly we will move forward in resolving the many physically challenging aspects of POTS. First we must educate our doctors, conduct more studies, then way down the line explore the correlation between POTS and mental health.
Yes! When I eat certain carbs my heart rate goes up and my gut suddenly looks pregnant. My gut also expands when I try to exercise. I figured it was just blood pooling in my gut which takes away volume from my heart and causes my heart to race. Very little bread for me! My gut likes chicken and fruit....I crave pizza but haven't had it in years because it makes my heart race. I am in my 40s now but in my early 20s I was diagnosed with a dumping syndrome and mitral valve prolapse syndrome...but no one could help me. For me, I take Propranolol three times a day 25 mg zoloft, lots of water, occasional salty drinks if needed, daily pepcid and protonix and attempt to exercise in some way each week. And my doctor used the ANSAR testing and not Tilt table and it induced my symptoms exactly.
As an American POTS patient, I appreciate and enjoy watching the information the POTS UK team generates. This seminar appears to be delivered to medical professionals. I will tell you I take 10 mg of Propranolol three times a day and it gave me my life back. I went from being bed bound and walked two miles today. I will tell you I did get mononucleosis when I was young and also as a healthcare worker I worked around a lot of viruses...which make me wonder. I noticed on the POTs support group page, there are also so many retired healthcare workers because of their dysautonomias. This was a very interesting lecture. Thank you.
Quite a few cases that would have been called “functional OI” have now been measured as stemming from lowered blood flow to the brain (cerebral hypoperfusion) by Dr Peter Novak. These syndromes can be identified fairly easily with transcranial Doppler during a tilt table test. www.brighamhealthonamission.org/2019/06/03/expanded-autonomic-testing-helps-to-pinpoint-causes-of-orthostatic-intolerance/ The patients’ heart rate and blood pressure look normal during HUT, but the cerebral blood flow velocity drops, and, in some cases, they also have low end tidal CO2. Dr Novak covers these syndromes in his book, Autonomic Testing. (Publication for doctors and medical technicians on how to conduct and interpret this type of testing.)
POTS patients are often misdiagnosed by the doctors and misunderstood by people. May God Almighty bless each and every POTS patient with full cure. Amen. I'm a POTS patient myself so I understand how difficult it is for ourselves and our families to cope with this condition.
This is absolutely bloody brilliant! Thanks so much for posting this. And thanks to Julia and Vicky. My family have asked for the link to it and I’ll show it to my other half, who’s already pretty good with his knowledge and understanding of POTS and in supporting me but think he’d find it really helpful. I had surgery this week and have to say it’s the 1st time in around 5 years that medical professionals, apart from you guys at the Cresta Clinic and my GP really took my POTS seriously. All staff and in particular the anaesthetist spent a long time discussing POTS and dysautonomia with me and how best to treat and look after me, what meds to use, hydration, compression and aftercare. It was an absolute breath of fresh air that people knew about it. I think Julia and Vicky should do regular RU-vid videos and maybe we could encourage Vicky to run online movement/exercise classes for those of us with POTS......she’d be like the Joe Wicks for POTSies! No idea if Julia or Vicky will see this, but just to say thank you very much for all your help and support when I was able to get to the clinic a few years ago. Oh, and in response to the yoga comment, I’ve actually found very low key, low centre of gravity yoga a huge help for me with one position with legs up flat against a wall, bum pressed into the wall being amazing in resetting the nervous system - so not only brilliant for getting the blood flow back to the heart and brain but completely calming anxiety, adrenaline surges and the nervous system generally. Thanks so much again. Debs McCoy
