How I Manage My POTS, How it Changed My Life | Dysautonomia [CC]
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- เผยแพร่เมื่อ 8 ก.พ. 2021
- The day I was diagnosed with Ehlers-Danlos Syndrome, I was also diagnosed with POTS - Postural Orthostatic Tachycardia Syndrome. I had no idea what EDS was and then there was POTS suddenly added to the mix! So how did the diagnosis of POTS change my life? And how do I manage it now? That's what I'm gonna speak about today.
Please remember that I am not a medical professional. I am a patient and I use this space to share my experiences. Everything I speak of is purely informative and in no way am I providing medical advice, so please consult a medical professional for your needs.
Time Stamp:
Dysautonomia: How POTS Changed My Life
01:09 - Disclaimer
01:27 - What is POTS?
03:44 - How does POTS affect me?
04:44 - How do I manage my POTS?
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Original article to this video:
Dysautonomia: How POTS Changed My Life
allthingsendometriosis.com/dy...
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Website Reference:
Tips: Managing Tailbone Fractures, Osteoporosis & POTS
Blog post: allthingsendometriosis.com/ti...
6 Things I Didn't Know About Hypermobile Ehlers-Danlos Syndrome
Blog post: allthingsendometriosis.com/th...
My Diet for Endometriosis & Ehlers-Danlos Syndrome
allthingsendometriosis.com/my...
Video: • My 6 Diet Changes for ...
Skin & Hair Care Recipes:allthingsendometriosis.com/di...
Video: • My Story: Fighting Acn...
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Disclaimer: I am not a medical professional. I am a patient and have created this platform to share my experiences. This is all purely informative and in no way am I providing medical advice. Please consult a medical professional.
#dysautonomia #POTS #EhlersDanlosSyndrome #HowToManagePOTS #Endometriosis #HealthAndFitness #PainManagement #Hypermobile #EhlersDanlosSyndrome #MentalHealth #Acceptance #HowToBeKindToYourself #LivingWithChronicPain #Fibromyalgia #HealthBlogger #PainRelief
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Thank you for the video . I Have POTS too , until someone learns to manage "their" POTS it is a real rough road and even rougher for others. I feel their pain
Hi Christopher, that's so true - everyone needs to figure out their own formula - and even then, it needs to be adjusted as they grow older or as various other symptoms come up. Thank you for watching and dropping in a comment.
I was diagnosed with neurally mediated hypotension via a tilt table test when I was 21, and POTS was added to that around age 30. This led to finally being diagnosed with hypermobile type Ehlers Danlos syndrome at age 38. I have heat intolerance and poor temperature regulation as well, plus digestive motility issues.
Compression calf sleeves like marathon runners wear have helped to reduce the intensity of my POTS, as has putting on more leg muscle. Ensuring that I stay hydrated (Powerade or Gatorade is nice) and consuming a reasonable/moderate amount of salty foods also helps.
For medication, Mestinon, which stimulates the vagus nerve and parasympathetic nervous system, has addressed my POTS and digestive motility issues quite well. I also take a small nightly dose of Clonidine, which reduces blood pooling and calms the sympathetic nervous system ("fight or flight" response), and has been good for treating my POTS, anxiety, migraines, insomnia, night sweats, restless leg syndrome, and has reduced my pain a bit.
Other good medications for POTS in EDS patients include Ivabradine, Guanfacine, or a beta blocker. Everyone's body is a bit different, so it might take time to find what works best. I actually reacted horribly to beta blockers, but responded really well to the alpha blocker Doxazosin - which typically is never given to POTS patients. It's great to find a doctor who can think outside the box, will treat each patient as a unique individual instead of using a "cookie cutter" approach to medicine, and is willing to put forth the effort to explore various treatment options with each patient until the best options are identified.
Thank you so much for sharing all this! A lot of us take quite a while to figure out the right combination of treatments and that too can be ever changing but what you've shared will be helpful to many of us who some times get lost in trying to figure out what next.
So glad I found your channel. I have POTS and endometriosis plus suspicion of EDS. Love seeing what others do to manage, please keep posting!
Hi Alva! I'm so glad you made the effort to drop in a comment - I'll definitely keep posting :) Thank you for your support.
I understand POTS, not EDS. I was diagnosed at 14. I started showing symptoms in June, and finally got a diagnosis in December the same year because I had a tilt table test. In February, I had mononucleosis, the epstein-barr format. I am actually going through a weird flare up of the disorder, and I'm having to take a small amount of time off of work. My symptoms range from having stomach problems to feeling like I've put my finger in a light socket.. By that, I mean it feels like there are surges of electricity running up and down my body, and it is highly uncomfortable, causes sweating and clamminess, and othef crazy symptoms go in and out. I'm taking the time off to sort of get this under control by getting my blood volume situation under control.
I know that was probably a lot, but I thought I'd share some extra symtpoms I feel besides the usual suspect symptoms like nausea, dizziness, and changes in blood pressure and heart rate.
Hi Chelsea, I had no idea that stomach problems can occur and that it can be to such an extent. We're all troubled by POTs differently and it's important people understand that rather than dismissing those who may not have the "classic" symptoms.
Thank you so much for taking the time to share this.
I have POTS too and have never heard of someone else having the uncomfortable electrical sensation throughout their body as well! I've mentioned it to my doctor but I wasn't sure how to explain it and that's a perfect description! Is there a connection that you know of between MONO/ Epstein-Barr & POTS? I had mono at 8 years old and according to testing, the virus is still in my body.
Thank you 🤩🤩🤩💖💖
Thank you too :)
Did u took any meds?
Will it go away automatically? Or stay with life long?
May I know your BPM while stand & sitting?
Hi,
I did take medication for a short while but it didn't help me a great deal.
POTS needs to be managed - it can't be cured because it's an autonomic dysfunction - you can't reverse this dysfunction.
@@FootprintsNoBoundariesByShruti not true reading about people who reversed this
What type of dr treats your pots? My daughter was diagnosed and we don’t know what dr to see
Hi Nancy, my rheumatologist who is highly experienced in internal medicine diagnosed me with POTS. I also went to a specialised hypermobility clinic that had doctors with their medical background in rheumatology.
I hope this helps.
Hi ,I hope your well.! Will you let me know the name of the Ed’s clinic please ?Thank you !
I think I have this ):
O' then you really should get yourself checked up by the right doctor.
Have you looked into chronic lymes disease I have Eds pots , mast cell and they are lined to lymes disease
Hi, thank you for suggesting this. I was tested for Lyme three times, but it was negative on all the required markers.