Having my Tilt Table Test (it Didn’t go as Planned!)
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- Опубликовано: 10 сен 2024
- This was supposed to be my final cardiology test, before everything is put into place for my pacemaker surgery. However, it didn’t quite go as planned. I’m not really sure where to go from here, or what will happen next. But thank you for coming on this journey with me. I’ll be sure to update you as I go along! Xxx
- Rebecca Papa-Adams Instagram: @InspireMyYoga
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- My Instagram: @stelasulzdorf
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- Get to know me: What is Ehlers-Danlos Syndrome? | My EDS Story 🦓
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#TiltTableTest
#Cardiology
#Dysautonomia
#HeartBlock
#HeartExamination
#MedicalGaslighting
#EDS
#EhlersDanlosSyndrome
#MyEDSstory
#EDSdiagnosis
#EhlersDanlos
#HypermobileEDS
#BabeWithAMobilityAid
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#HypermobileEhlersDanlosSyndrome
#ChronicIllness
#invisibleillness
#lupus
#AutoimmuneDisease
#healing
#disability
#dysautonomia
#HealthJourney
#LymeWarrior
#LupusWarrior
#Fainting
#POTS
#ECGMonitor
#PosturalTachycardiaSyndrome
#POTSsyndrome
Sorry I wasn’t my usual upbeat self in this weeks video. I just wanted to share what happened and my feelings towards the situation. Those of us with chronic illness often get gaslighted and it’s about time we spoke up. As a little update, I did make a formal complaint on Thursday. Stay tuned to find out what happens next. 🤷🏻♀️
Thanks for watching! Xxx
A very frustrating situation. Keep fighting the good fight hunxxxxxxxxxx
You are completely justified! Yes please keep me in the loop 💕💕
@@chrissulzdorf456 I agree! So frustrating! But let’s see what happens 😫💕
@@skyy_yoga I will do babe! Love you 💕
You did extremely well hun. It is very disappointing that the doctor failed to accommodate your needs. A very vulnerable piece of video hun, you're very strong indeed.💗💗💗💗💗
Thank you for convincing me to film and upload this. Love you so much!! Xxx 💕
As you are describing this situation,it triggered me in so many ways😟..,it reminded me all these situations I have encountered when people make assumptions over my name,skin or accent and are quick to judge...This behavior is not one of a good physician,it's a shameful one.This person didn't demonstrated any empathy or even plain kindness over anything..You certainly did well to complain..Had it been for a person he cares about,would he have tolerate this,absolutely not...As a healthcare worker it fills me with shame,let me tell you they are not all like this...And you are right...It was gaslighting at its best.Stela I really hope you find soon a way to do this examination as your conditions needs urgent attention ..I am freaking out whenever I have to do exams and waiting for results...I can only imagine you having to go through this every now and then...Sending so so many hugs and love💕💕💕
Thank you so much for your support and kind words, dear Kat! 💕 I’m sorry my video triggered you. 😢 You are one of the nicest and kindest people I know and you do not deserve to be treated that way. Some people are just heartless. I’ll definitely keep you informed with any updates! Sending you big hugs and so much love! 💕
This was so unfair of the doctor love 😞. I wonder what your cardiologist who urgently requested would think! Hopefully this gets resolved and you’re able to complete. I’m so so proud of you for standing up for yourself and your health. You 1000% have my support always. Sending you lots of love and hugs 💕💕
I’m wondering what he’s going to say too. Hopefully I’ll hear back soon. Thank you for your support. Love you lots back too! 💕
aaaaaaaaaagh I feel so bad for you. The amount of times it's been dismissed as "just anxiety" or "behavioural" is crazy. It's not fair when they do this and you don't deserve to be treated like this. Nobody does. Everybody wants the same outcome: A healthy patient. Why do they find it so hard to listen?
Hang in there and stay strong! You deserve better care. You truly are inspiring and set a great example. The harder you fight, the more people will follow in your footsteps and get the care they need. If enough people do it then in the future nobody will have to do it
Sorry about the rant. Like most people with medical conditions which don't fall into the category of infection or obvious structural issue, I'm having a fair few problems with doctors. I was in hospital where they starved me (I have a feeding tube and the doctor was convinced my problem is psychological so they took it out [it's back in surgically now] ) I got severely dehydrated and hypoglycaemic which they treated with injections and told me to just stop being sick. They refused to give me IV fluids and even went as far as writing in my notes that they shouldn't be prescribed to encourage me to drink. Even when my HR was 140 (when I was asleep) they refused fluids. The ward manager had to override the doctors. I went unconscious without a pulse but they said it wasn't a true cardiac arrest because after a few seconds of CPR my heart restarted before the whole crash team arrived. They didn't even tell me it happened until we read it in the discharge letter.
The worst part is, the more bad experiences you have of "it's all in your head" the more anxious and emotional you get when trying to fight your case, the more they think it's in your head.
Also, Inflammation can be the cause of anxiety. There are now boing studies done that look at the brain and neuroinflammation and how it can cause anxiety and depression (and other things ) lupus could very well be the cause of your anxiety as far as he should know.
Thank you so much for sharing your experience and please don’t be sorry at all. I hope you’re doing a better now and I’m sending you so much love. 💕 I’m always happy to read other peoples stories. I just wish you didn’t have to go through that. You’re absolutely right though, anxiety is always caused by something. It’s not something that just happens out of the blue. It needs to be triggered. In our society, woman’s problems are often times disregarded as “mental” or “in our heads.” The more we talk and share, hopefully it will happen less and less. You are strong and thank you for watching! I appreciate you 💕
@@stelasulzdorf ❤
Dear Stela, I like so much that you are always sharing your health situation with us and that you keep us aware of how you feel, I want to tell you that some doctors have little ethics, recently a friend gave a wrong diagnosis about the health of her little daughter, everything It was wrong and my friend spent a few terrible days worrying because of the treatment of that doctor. just a change of doctor and the nightmare is gone, you just have to listen to your body you are a strong woman sister no machine or no doctor can really say how are you really only you know that from the inside, many people are sorceresses with their words and we They make us fear only if we believe in it. but trust you more that doctor has not seen how you lean in yoga and how great your body has been in fighting this battle look at you there you are! I send you hugs of affection and support, I am waiting for your next videos I admire you a lot 🤗🙏💗💫📿💯👏🧘🏻♀️
Thank you for watching and saying that, darling! Your kind words mean the world to me. I’m sorry to hear about your friends daughter. It makes me so sad that some of doctors who are supposed to care for people, do the opposite! Hopefully I can change doctors and something will be sorted. So grateful for you 💕
Your encouragement is very important to lean on those who truly love you Luna, your husband, your mother and family, always have an unshakable faith I am still attentive to all your publications and what you want to share with us, I will be here for all support and affection 🙏🤗📿💫😻
Going on what you have described, your anxieties and past traumas in medical settings (all extremely extremely valid and understandable) this test probably would have been awful for you he was right. It is a horrid experience, for those who aren’t anxious. Being strapped in, tipped up, pushed to the point of blackout, it’s awful. If you dont have to put yourself through it, a consultant says so and there are other options, I think this was a blessing in disguise.
I had the tilt table test this morning. As someone else mentioned it is like slow torture. Horrible horrible experience. I only fainted 15 months ago for 3 seconds but have to go through these tests to get license back.
To say it’s extremely uncomfortable is being disingenuous. I’m a 56 year old postman who’s been through a lot. I lasted 20 mins but it got too much. They want you strapped upwards for 40 mins. No chance.
I had to tell them I’d had enough. Didn’t feel or experience fainting. The only thing I felt was extreme anger and frustration been tightly strapped.
I'm truly sorry about your experience. I pray that all works out for you. That you get all your answers. God is with you.
That doctor makes me so angry on your behalf. I hate medical gaslightting!!! I'm so sorry this happened to you.
Thank you so much! Hopefully something will be sorted soon. 💕
I can’t believe this, I’m so upset and frustrated for you 😔 I can’t imagine how disappointing this must have been, I’m so sorry this happened 😞 Do you have any updates about all of this?
& the question about the neurologist is actually a very important question when investigating a possible POTS diagnosis, as POTS is autonomic & so patients are often seen by a neurologist. Neurological conditions are not ‘in your head’, they are just conditions that affect the brain & nervous system (e.g. epilepsy, FND, Parkinson’s, etc), so they are definitely physical conditions & he was right to ask that question, even though he shouldn’t have dealt with everything else how he did xx
Thanks so much for watching and for leaving this helpful comment. At the moment, I haven’t got any new news. I’ve already been diagnosed with PoTs using the poor mans method. But my fainting started to get worse, so my neurologist (who I’ve been seeing for 3 years) wanted me to get more comprehensive cardiology tests done. During my ECG, my heart stopped for 4.75 seconds. So my senior cardiologist wanted to fit me with a pacemaker. But because of my age he is hesitant to do so. The tilt table would have confirmed if it would have been a necessary thing or not. But because the tilt table doctor didn’t allow me to have the test, it’s all up in the air. I’ve filed a complaint and the only thing I’ve heard is the NHS is receiving a high number of complaints right now, so it could take a while.
Sorry for this long winding answer and hope it makes sense. 😅 I’ll definitely do an update video when hear or know more! Xx
@@stelasulzdorf gosh Stela, that’s even more reason for him to have done the test, I’m so so sorry this happened 💗 Got my fingers crossed for you that the complaint helps & that you can get some help soon 💗 I’ve subscribed & I’m looking forward to catching up on your videos! xx
@@GeorginasJourney Thank you so much! I really appreciate that! Xx
Ah Stela,
I'm sorry you had a difficult and challenging time at your tilt table appointment. Gosh, it's shocking...completely unacceptable behaviour from the doctor! You are within your right to complain! Good for you for standing your ground and keeping good form (despite how you were feeling on the inside). Nobody should be made to feel this way. Hopefully another test can be arranged for you with a different doctor or in the very least Chris can chaperone you. Sending hugs 🤗🤗🤗🤗 and lots of love ❤ 🥰🥰🥰🥰
Thank you Chalice! He had absolutely no time for me and he was talking to me as if he thought I was making everything up. Chris and I made a formal complaint on Thursday, so I guess we’ll just have to wait and see what happens. Xxx 💕
I would certainly have complained about that hospital doctor...... I put myself in your shoes..and id have been sobbing.....
In fact..that doctor shouldnt even be doing the job hes in..... What an utter arrogant s....t he was.
Bless you...♥️
Are you getting tested for anti-hydros, sis I don’t know if I’m saying that right but it’s where you don’t sweat I wish the best of luck for you and I’m 11 and I had it done because I don’t sweat and they were trying to diagnose me with something so you got this I wish the best of luck.
This is disgraceful. "Sorting out" an anxiety disorder is not a pre-requisite to having other medical treatment, and given that dealing with anxiety is a life long thing, totally unhelpful. You were totally within your rights to put a complaint in. I know this was a year ago, but I'm so angry on your behalf!
How horrible that you were treated that way! I hope you were eventually able to get your tilt table test done.
I get really nervous around doctors, and I'm worried about going to the cardiologist and messing up the tests >_
I hope your test goes well/ did go well! Medical places and doctors can be so scary 😟
I'm having a TILT table tomorrow, and am so worried this will happen to me, or that my Sx won't show. I've been experiencing syncope off and on for years, but in the past year it's gotten crazy. Finally doing something about it. I had open heart surgery when I was 3 months old, and never had much issue till this past year or two.
Good Luck with your test tomorrow!! You will absolutely smash it. Let me know how you get on. Xx
Crazy to think that you can't have a medical problem AND anxiety at the same time... I'm pretty sure everyone has anxiety of some level. It's a normal response your body makes to warn you of potential danger or discomfort. My dad has Diabetes, heart disease and kidney disease and still has anxiety...Does that mean all his other problems are just anxiety? Some of these Doctors need to find a new career because they obviously didn't go into it to help people. The tilt table here is only to look for fainting. My Dr thinks I have pots but my blood pressure raises instead of drops (I believe called Hyper Pots or something). I'm nervous how the cardiologist will treat me if that's what they are ONLY looking for. I do not faint. I get dizzy, shaky, nauseous and palpitations/ Feels like I'm running on adrenaline when I stand at 100 plus beats, as high as 170 but usually 100-130 bpm. My resting is upper 40's and low 50's. That's every time I sit. Carbs bring on my symptoms worse.
Thank you for saying that and sorry it has taken so long for me to reply to you. It’s scary to think how some of these doctors deal with vulnerable people. Your dad sounds incredibly strong and I hope you get to the bottom of everything that’s going on with you. It definitely sounds like hypotension PoTS. Xx
I understand it must be really difficult for you for this doctor I feel that he was on the right track. He should of given you more time and be more reassuring however, it’s not ideal to do a heart test on somebody who is extremely anxious because the test wouldn’t be reliable. I think you should complain for his awful communication skills. In terms of the questions he was asking because of your awful experience I know you probably look back now and think he was being rude or intrusive but that’s his job to make sure you’re getting the right support and care.
Yea I mean this was so long ago now, that I barely remember it. I think it was more his tone that was upsetting-and to be honest, I have so much trauma surrounding my past that I immediately just shut down. I’m sure he was only doing his job, he was just insensitive in his manner. I’m now seeing a different doctor who’s been a lot more understanding
Sorry that happened. What was wrong that u needed those teste
Thank you so much! I’m still waiting to hear back as to what’s going to happen next 😫
I don't know what country you live in but trust me, in the US we have the absolute worst medical care for those who have not only HMOs but government HMOs. We get dismissed a LOT with our symptoms and it pisses me off. We're either too fat or it's all in our head.
Absolutely unacceptable! I cannot BELIEVE you were treated this way! Who is he to bring to a holt, your healthcare progress and diagnoses?! What does he mean, you’re not ready for this? You’re not getting on a ride at Disney! What healthcare professionals like him fail to realize, is, the way they treat us often induces anxiety. It feels awful, when they imply it’s all in your head. I’m so sorry for you.
This is exactly it! I’ve developed medical PTSD and anxiety, because of all the times I’ve been told “it’s in my head” and that “everything is due to anxiety.” It’s sadly not an uncommon practice for a lot of doctors worldwide it seems 😔
It feels so wrong to ‘like’ this video, because I’m so sad and angry for you for the treatment you were subjected to 😢 I will though, but only as support for you. I’ve also been referred to that same hospital for PoTS and now I’m scared it’s gonna be the same dr, does his name start with P? I love your content, I’ve only just found you but have subscribed. Thank you for showing reality, nothing in life is always rainbows and unicorns, life can be a shit fest sometimes sadly. You are strong and capable! He was an idiot ❤ xx
darent valley are useless im there nxt week for the same thing
I suggest you find a different doctor who doesn’t judge people and a doctor who has an acceptable bedside manner! The doctor you saw sounds like
A creep, has no patience and has no bedside manner! He knew nothing about you and proceeded to jump to conclusions about you!! I hope you were able to find a more compassionate doctor and eventually get your test done! As a patient, you deserve respect, autonomy and someone who doesn’t judge.
Very unsupportive, it could have been the same doctor who cancelled your test the first time. Sending you big hugs 🤗 xx
I still can’t believe it. But let’s see what happens 💕
How dare that doctor treat you like that. I am enraged on your behalf.🫂
I am having a tilt test in October re POTS. I was referred 22 months ago. Fully expecting to be asymptomatic as I am some days. Sod's law defines my life at the moment!
I hope you get or have had a positive response to your complaint and that you are getting properly supported now.