After years of sufdering and being called delutional by doctors & family, I got diagnosed with POTS just yesterday!!! Neither my neurologist nor my rheumatologist had a clue when I have been repeatedly telling them Im experiencing all of this. They just kept on sending me to a psychiatrist and a cardiologist, but both couldnt find a thing. The tag that Im delusional stayed and kept destroying my confidence slowly. I feel so relieved to be heard!!! I feel so relieved to know that this can be treated! My rheumatologist had asked me to do aerobics and I almost fainted while attempting that. Then they asked me to walk 10,000 steps a day and it was impossible for me do and I was called lazy. My husband has separated from me because he says Im lazy and delusional and Im unbearable! But now I have hope. I can prove to everyone that it was not in my head, it is actually happening and there is hope for me 🙏🏼🙏🏼 I will recover from this and lead a happy and healthy life!!!
After contracting covid, I developed long covid & diagnosed with post viral fatigue syndrome & POTS. I’m mainly bed bound & home. I am grieving my former lifestyle & life is isolating. Your story reminded me of me. Being in my late 40s dealing with hormonal issues, diabetes and physical disability, makes it even more so difficult to cope with everything. I sincerely appreciate your video & candidness. I too get extremely wiped out after bathing. I get help from my husband & can’t bath often. I lived with a lot of limitation before but this truly tops the cake. In a bad way 😕 It’s a brutal life to live with this condition. Thanks again for your video!
It makes me sad that I can’t do the things I use to. I am now retired and I miss that inter action. I have chronic fatigue, I am prone to getting mono and have fibromyalgia. I am now trying to be my own health advocate.
Wow!! I'm visually impaired and have dysautonomia with pots and use a wheelchair to. I hope some day to meet other visually impaired wheelchair users! It's great to find your channel!!❤❤❤
Fascinating. Thank you for the information. But My goodness young lady I thought I had some interesting diagnosis. In any case Bully for you onto bring this information to the fore.
I have long story to share but let me keep it brief. I experienced some of the symptoms you mentioned. I tried several doctors but in vain. After some research, I found out that POTS is caused by deficiency of vitamin B1. There are many things that can go wrong in our body system and results into vitamin B1 deficiency, for instance diet and medication (antibiotics etc). I had to adjust my diet and reduce carbohydrates and sugar, I use Neurobion tablets which have vitamin B1/B6/B12. I do yoga, Pilates and meditation. Things have improved a lot. I am currently doing more research on a better vitamin B1 tablets. Apparently some B1 tablets are fat soluble and can easily be assimilated in the nervous system, they say it works better. I shall report back once I find one. All of the best and thank you for this video!
I have had hyperadrenergic dysautonomia my entire life and developed ME/CFS starting around age 12. When I was younger I had a combination of orthostatic tachycardia and orthostatic hypotension. As I have grown older, this has transitioned into orthostatic hypertension with occasional tachycardia. It means that I rarely pass out any more, but I still get all the other symptoms of hypoperfusion. I have a severe autonomic sleep disorder and I experience overheating and severe anxiety in response to orthostatic intolerance. I also experience air hunger and this is due to hyperventilation syndrome, triggered by the hyperadrenergic nature of my dysautonomia, which leads to low levels of CO2.
I don't have POTS but I do have many symptoms that are similar due to my hypertension and aneurysm. Getting up slowly is important. I've found that I have to limit my fluid intake before bed time so that morning bathroom call isn't so urgent and I don't have to rush the process of getting up. I go from prone to sitting and then stretch for a bit. Then I grab my cane and use it as a third leg for balance as I slowly stand. When I was in physical therapy to recover some of my mobility and was completely blind my physical therapist told me that it wasn't just your ears that are responsible for balance. Vision is also responsible for some of your balance and can contribute to vertigo if you suffer from it. My hyper tension is what causes me to have issues with getting up quickly (which also contributes to increased heart rate). I have trouble with most hypertension medications. Fortunately for me the ones that work are the ones that reduce blood pressure by reducing heart rate so I'll take every little win I can get. I'm a on a low sodium diet due to the hypertension so extra sodium is out and I drink 2 liters of water a day to keep kidneys healthy and reduce my blood thickness to help reduce blood pressure. Having pain also increases your blood pressure (and anxiety) which increases your pain and increases your blood pressure in an increasing spiral. The only fix for that I have is to take it slow and not start the cycle (yes, very frustrating). Just as an aside my wonderful doctor gave me one of the best vasoconstrictors available. Dark chocolate. Good for the blood vessels and also good for the soul. A couple of squares a day can increase blood flow in the extremities and the brain by 12% in most people. Even if it doesn't have that affect in you dark chocolate causes your brain to release endorphins, which reduces your anxiety, which reduces your pain. A helpful downward spiral so its another small win/win and I'll take it.
Yup have several friends that have it and myself still working with my doctor on one for me as I have other autoimmune issues like type 1 diabetes the passing out or almost passing out for me is scary but Maui my guide dog has started on her own to alert to the need to stay in one position or to help me up love your work being disabled is hard and it’s not always sunshine and rainbows but we make the best of it
I’ve never been diagnosed, but I have POTS type symptoms on occasion. I also appear to have vagus nerve dysregulation related to a bad back and neck which I have learned how to adjust to keep problems under control.
I've been living with Dysautonomia and POTS for 41 years. While the average diagnostic delay has improved there's still widespread lack of awareness and knowledge by medical professionals and research remains limited. It's unfortunate the current body of research doesn't capture POTS signs & symptoms may be chronic or relapsing, when the brain is deprived of oxygen and glucose it may cause the body to vomit rather than faint in order to return blood flow to the brain and most importantly the signs & symptoms beyond tachycardia upon standing are highly individualized.
I've fainted many times during this last summer. Before that, I fainted only once in my life as a kid. The worst I've had is when I come very close to fainting. The symptoms are so very overwhelming. The pounding headache, limb numbness and tingling, having upset stomach and a very strong urge to vomit but my body not letting me. The extreme overheating with buckets of sweat, the feeling of vertigo and just general confusion... that's what 'almost passing out' is like for me. The first time I thought I was dying, I felt helpless, and didnt know what was happening. All I could do was start screaming "no! no! no! Nooo" So, yeah.. ha! That's 'almost passing out. Personally if I had a choice of almost or definitely fainting..? I'd take fainting every time. And with all these symptoms, doctors have seemed to be looking at anything else but POTS. All of the above has been labeled GAD - General Anxiety Disorder. Ha! I could just scream and never ever stop. .... :)
Is it normal for everyone to experience a head rush from time to time whilst standing? I get dizzy standing up. Or sometimes in one place. And I have felt dizzy in the shower can't deal with heat. But I have a history of epilepsy and ADHD. And I take stimulent medication. I have been getting dizzy spells more frequent and the doctor thinks I'm having a tia?
Good information I've had POTS for 13 years it to a mental breakdown down psych stay to be diagnosed with dysautonomia which then lead to POTS diagnosis 2 yrs after start. I developed POTS after a car accident where I sustained head trauma followed by major surgery gastric bypass 1 month later. It took me 3 yrs to accept the new me and that I couldn't do what I used to. I have a wheelchair my husband won't let me use it he's embarrassed and thinks I won't beable to push myself. Have you found people who have known you from the start of pots seem to forget you have it and expect you to be the old you? I've been going through it for a while now. Im pushing my body to beaking points and they don't understand anymore.
I understand your frustration. I’m almost bed bound after a relapse, had C19 - last year got EBV I have been downhill again. It’s been 25 years ago I was given a tilt table test at that time I had a cardiac ablation. Also , experienced episodes of syncope, along with anxiety, depression came and the endless things that I can’t seem to do I go to the grocery store push the cart by the time I get home I can’t even get the groceries out of the car I feel useless and sad and angry sometimes. 18:38
Hi. I’m visually impaired and getting tested for POTS and a slew of other things. I’m looking into getting a wheelchair for the bad days. What kind of chair do you use?
I have an active use chair (very light) with power assist device. Currently a Ki Mobility Rogue (although if I had to choose again, I'd probably go Tilite)
York Cardiology - Dr Sanjay Gupter- hes 1 amazing and caring consultant- i was diagnosed 2 years ago- its not killed me, however its killed my life... wishing all you sufferers a good health ❤
Really hate that you have this, had no i deal how bad it was,heard of it but never gave it much thought -you seem to do ok living alone, how long have you had POTs
It can certainly be a challenge for sure! And some days are definitely better than others. I have had POTS for more than 8 years now and while I’m likely as stable as I’ll ever be and happy I’m not bed-bound. I’ve had to make a lot of concessions to try and keep myself safe. My home has 0 stairs and is all one level. We have no glass tables that I could fall on and break, seats in every part of the house including the kitchen and shower, and I really need to ration my energy so it means scheduling social events well in advance and a major career change when it first started. It’s tough to show those particularly bad moments where I’m really hurt or out of it online because the last thing I want is a camera shoved in my face.
I don’t have POTS myself. But I know a couple people on this platform that have it. They even have Service Dog’s that alert them to passing out, etc. Dominique @Service Dog Paws and Aubriana @Service Dog Cedar. Thank you for sharing everything you know about the medical condition. I’m always interested in learning about different medical conditions and how they affect people.
After years of sufdering and being called delutional by doctors & family, I got diagnosed with POTS just yesterday!!! Neither my neurologist nor my rheumatologist had a clue when I have been repeatedly telling them Im experiencing all of this. They just kept on sending me to a psychiatrist and a cardiologist, but both couldnt find a thing. The tag that Im delusional stayed and kept destroying my confidence slowly. I feel so relieved to be heard!!! I feel so relieved to know that this can be treated! My rheumatologist had asked me to do aerobics and I almost fainted while attempting that. Then they asked me to walk 10,000 steps a day and it was impossible for me do and I was called lazy. My husband has separated from me because he says Im lazy and delusional and Im unbearable! But now I have hope. I can prove to everyone that it was not in my head, it is actually happening and there is hope for me 🙏🏼🙏🏼 I will recover from this and lead a happy and healthy life!!!
Hugs your way darling!!!!! how are you now ?
After contracting covid, I developed long covid & diagnosed with post viral fatigue syndrome & POTS. I’m mainly bed bound & home. I am grieving my former lifestyle & life is isolating. Your story reminded me of me. Being in my late 40s dealing with hormonal issues, diabetes and physical disability, makes it even more so difficult to cope with everything. I sincerely appreciate your video & candidness. I too get extremely wiped out after bathing. I get help from my husband & can’t bath often. I lived with a lot of limitation before but this truly tops the cake. In a bad way 😕 It’s a brutal life to live with this condition. Thanks again for your video!
It makes me sad that I can’t do the things I use to. I am now retired and I miss that inter action. I have chronic fatigue, I am prone to getting mono and have fibromyalgia. I am now trying to be my own health advocate.
Oh my god. I never thought that the fact I started getting really dizzy during hot showers could've had any connection with covid...
Thank you. Been suffering for 18 months. Nurse coming tomorrow I will speak to her.
Wow!! I'm visually impaired and have dysautonomia with pots and use a wheelchair to. I hope some day to meet other visually impaired wheelchair users! It's great to find your channel!!❤❤❤
Wow! I've never met another VI/POTSie who uses a wheelchair either! Nice to meet you :)
Fascinating. Thank you for the information. But My goodness young lady I thought I had some interesting diagnosis. In any case Bully for you onto bring this information to the fore.
I have long story to share but let me keep it brief. I experienced some of the symptoms you mentioned. I tried several doctors but in vain. After some research, I found out that POTS is caused by deficiency of vitamin B1. There are many things that can go wrong in our body system and results into vitamin B1 deficiency, for instance diet and medication (antibiotics etc). I had to adjust my diet and reduce carbohydrates and sugar, I use Neurobion tablets which have vitamin B1/B6/B12. I do yoga, Pilates and meditation. Things have improved a lot. I am currently doing more research on a better vitamin B1 tablets. Apparently some B1 tablets are fat soluble and can easily be assimilated in the nervous system, they say it works better. I shall report back once I find one. All of the best and thank you for this video!
Thank you so much for this video 🌻 I was having a paticularly bad POTS day and your video made me feel so understood. All the best to you.
I have had hyperadrenergic dysautonomia my entire life and developed ME/CFS starting around age 12. When I was younger I had a combination of orthostatic tachycardia and orthostatic hypotension. As I have grown older, this has transitioned into orthostatic hypertension with occasional tachycardia. It means that I rarely pass out any more, but I still get all the other symptoms of hypoperfusion. I have a severe autonomic sleep disorder and I experience overheating and severe anxiety in response to orthostatic intolerance. I also experience air hunger and this is due to hyperventilation syndrome, triggered by the hyperadrenergic nature of my dysautonomia, which leads to low levels of CO2.
Wow. Again, you are super inspirational Tamara. I hope you find some accessible hiking trails ox
Thanks Barb!
I don't have POTS but I do have many symptoms that are similar due to my hypertension and aneurysm. Getting up slowly is important. I've found that I have to limit my fluid intake before bed time so that morning bathroom call isn't so urgent and I don't have to rush the process of getting up. I go from prone to sitting and then stretch for a bit. Then I grab my cane and use it as a third leg for balance as I slowly stand. When I was in physical therapy to recover some of my mobility and was completely blind my physical therapist told me that it wasn't just your ears that are responsible for balance. Vision is also responsible for some of your balance and can contribute to vertigo if you suffer from it. My hyper tension is what causes me to have issues with getting up quickly (which also contributes to increased heart rate). I have trouble with most hypertension medications. Fortunately for me the ones that work are the ones that reduce blood pressure by reducing heart rate so I'll take every little win I can get. I'm a on a low sodium diet due to the hypertension so extra sodium is out and I drink 2 liters of water a day to keep kidneys healthy and reduce my blood thickness to help reduce blood pressure. Having pain also increases your blood pressure (and anxiety) which increases your pain and increases your blood pressure in an increasing spiral. The only fix for that I have is to take it slow and not start the cycle (yes, very frustrating). Just as an aside my wonderful doctor gave me one of the best vasoconstrictors available. Dark chocolate. Good for the blood vessels and also good for the soul. A couple of squares a day can increase blood flow in the extremities and the brain by 12% in most people. Even if it doesn't have that affect in you dark chocolate causes your brain to release endorphins, which reduces your anxiety, which reduces your pain. A helpful downward spiral so its another small win/win and I'll take it.
Thank you for sharing. It sounds like a very complex situation. I’m glad you’ve found some things to work. :)
Yup have several friends that have it and myself still working with my doctor on one for me as I have other autoimmune issues like type 1 diabetes the passing out or almost passing out for me is scary but Maui my guide dog has started on her own to alert to the need to stay in one position or to help me up love your work being disabled is hard and it’s not always sunshine and rainbows but we make the best of it
I’m glad Maui has some cues figured out. Patience will do similar things if I’m working her, but if she’s free at home she’s too deep a sleeper haha
Awesome. Subscribed ❤
This was so informative. Thank you so much!
I’ve never been diagnosed, but I have POTS type symptoms on occasion. I also appear to have vagus nerve dysregulation related to a bad back and neck which I have learned how to adjust to keep problems under control.
I’m glad you’ve found some work around to alleviate symptoms :)
I've been living with Dysautonomia and POTS for 41 years. While the average diagnostic delay has improved there's still widespread lack of awareness and knowledge by medical professionals and research remains limited.
It's unfortunate the current body of research doesn't capture POTS signs & symptoms may be chronic or relapsing, when the brain is deprived of oxygen and glucose it may cause the body to vomit rather than faint in order to return blood flow to the brain and most importantly the signs & symptoms beyond tachycardia upon standing are highly individualized.
I've fainted many times during this last summer. Before that, I fainted only once in my life as a kid. The worst I've had is when I come very close to fainting. The symptoms are so very overwhelming. The pounding headache, limb numbness and tingling, having upset stomach and a very strong urge to vomit but my body not letting me. The extreme overheating with buckets of sweat, the feeling of vertigo and just general confusion... that's what 'almost passing out' is like for me. The first time I thought I was dying, I felt helpless, and didnt know what was happening. All I could do was start screaming "no! no! no! Nooo" So, yeah.. ha! That's 'almost passing out. Personally if I had a choice of almost or definitely fainting..? I'd take fainting every time.
And with all these symptoms, doctors have seemed to be looking at anything else but POTS. All of the above has been labeled GAD - General Anxiety Disorder. Ha! I could just scream and never ever stop. .... :)
My mother is on meds to slow down her heart. I'm experiencing these symptoms, but I fall a lot now. My resting hr is 110-130 also.
Is it normal for everyone to experience a head rush from time to time whilst standing? I get dizzy standing up. Or sometimes in one place. And I have felt dizzy in the shower can't deal with heat. But I have a history of epilepsy and ADHD. And I take stimulent medication.
I have been getting dizzy spells more frequent and the doctor thinks I'm having a tia?
Good information I've had POTS for 13 years it to a mental breakdown down psych stay to be diagnosed with dysautonomia which then lead to POTS diagnosis 2 yrs after start. I developed POTS after a car accident where I sustained head trauma followed by major surgery gastric bypass 1 month later. It took me 3 yrs to accept the new me and that I couldn't do what I used to. I have a wheelchair my husband won't let me use it he's embarrassed and thinks I won't beable to push myself. Have you found people who have known you from the start of pots seem to forget you have it and expect you to be the old you? I've been going through it for a while now. Im pushing my body to beaking points and they don't understand anymore.
I understand your frustration. I’m almost bed bound after a relapse, had C19 - last year got EBV I have been downhill again. It’s been 25 years ago I was given a tilt table test at that time I had a cardiac ablation. Also , experienced episodes of syncope, along with anxiety, depression came and the endless things that I can’t seem to do I go to the grocery store push the cart by the time I get home I can’t even get the groceries out of the car I feel useless and sad and angry sometimes. 18:38
Hi. I’m visually impaired and getting tested for POTS and a slew of other things. I’m looking into getting a wheelchair for the bad days. What kind of chair do you use?
I have an active use chair (very light) with power assist device. Currently a Ki Mobility Rogue (although if I had to choose again, I'd probably go Tilite)
Try b1 in the form of benfothiamin , or ttfd better
4:30 💯
What kind of doctor is a POTS specialist?
York Cardiology - Dr Sanjay Gupter- hes 1 amazing and caring consultant- i was diagnosed 2 years ago- its not killed me, however its killed my life... wishing all you sufferers a good health ❤
Did you have to Retire your guide dog now that you use a wheelchair?
❤❤❤❤❤❤❤❤❤❤
Really hate that you have this, had no i deal how bad it was,heard of it but never gave it much thought -you seem to do ok living alone, how long have you had POTs
It can certainly be a challenge for sure! And some days are definitely better than others. I have had POTS for more than 8 years now and while I’m likely as stable as I’ll ever be and happy I’m not bed-bound. I’ve had to make a lot of concessions to try and keep myself safe. My home has 0 stairs and is all one level. We have no glass tables that I could fall on and break, seats in every part of the house including the kitchen and shower, and I really need to ration my energy so it means scheduling social events well in advance and a major career change when it first started. It’s tough to show those particularly bad moments where I’m really hurt or out of it online because the last thing I want is a camera shoved in my face.
I don’t have POTS myself. But I know a couple people on this platform that have it. They even have Service Dog’s that alert them to passing out, etc. Dominique @Service Dog Paws and Aubriana @Service Dog Cedar. Thank you for sharing everything you know about the medical condition. I’m always interested in learning about different medical conditions and how they affect people.
Thanks Christian! Glad you found it educational. :)