how we got diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS)
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- Опубліковано 10 жов 2019
- Find out how we each got diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome)!
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#Chronicillness #invisibleillness #POTS #Dysautonomia #autoimmune #Sisters #Lupus #howwegotdiagnosed
Hey :) I just really wanted to say God bless you. I am in the beginning stages of my path to healing from Lyme, POTs, MCAS ect. This morning I was experiencing major symptoms and reactions to a new medicine. I felt so much peace when watching your video and it encouraged me that there is a way to navigate all of this!
Stay sweet!
Stefani
Hi Stefani! Thank you so much for your kind words. We know how overwhelming it can all seem in the beginning! We have a lot more information on our blog as well
www.twobeinghealthy.com
Hope you're doing well!
This video is so important in that it highlights the need to know your own body and to be your own advocate. It can take years to reach a diagnosis which can have very unfortunate consequences. Know your own body, if you're a woman, don't listen to doctors who may tell you it's all in your head, get curious and informed and most importantly, never give up. I myself don't have POTS but my experience with SLE has been so challenging and lonely.
Thanks again for the great content, Em and Kate.
Thank you SO much Allyson!! Being your own advocate is the biggest lesson we have learned through this journey so far!
@@TwoBeingHealthy You're so welcome! And bravo. You learned a valuable lesson early!!
I just wanted to say thank you so much for this! I'm in the process of being diagnosed - just had my tilt table last week - and found you on Instagram and came here. This made me feel much less alone; thank you!
Love your new channel 😁 please keep the videos coming. Love hearing similar experiences to mine. I've had pots for 8 years now and in the middle of a long flare 😢.. Glad I found you both! xx
Thank you SO much - more videos are in the works!! We hope your flare settles down soon - sending love your way!
You two are amazing! I love your sister bond. I wish I had a close relationship with my sisters.
I got sick about 5 years ago with the flu, was given an antibiotic for an ear infection. It was awful and after that, all my symptoms showed up.
Thank you so much - we really appreciate it! It's crazy how often we hear that something so simple as a flu or an ear infection can stir up these chronic conditions! Sending love your way xx
@thechronicbranmuffin I know you commented a year ago, but figured I would try to reply. Strange question, but do you remember the name of the antibiotic you were on? Was it ciproflaxin or another type of fluoroquinolone? If so, I would highly suggest reading about it. It has 4 black box warnings one of which is permanent nerve damage. It is linked to long term injuries to the muscles, nerves, tendons, and central nervous system. I too had an infection and was prescribed cipro twice within 15 months and my life was never the same after. I have significant damage to my autonomic and sensory nervous system confirmed on a skin biopsy, and damage to my left vestibular brainstem nerve seen on a vng. Autonomic neuropathy and pots can have similar symptoms, but Dysautonomia is not always pots. The theory behind these antibiotics is that they can cause mitochondrial dna damage and oxidative stress. Mayo is doing research on bio markers for mitochondrial toxicity. Anyhow, I just wanted to suggest looking into the antibiotic as another potential cause. Dysautonomia has many underlying causes and once you can get a doctor to confirm you have dysautonomia or autonomic dysfunction then the next step is to find the underlying cause if you don’t already know. I will give this little warning though; if you did take cipro or another antibiotic in the same class it is very difficult to get any doctors to even discuss it. I see a top Dysautonomia neurologist in New York and even he brushes me off when I bring it up and says “there’s no way to prove it” even though the FDA has labeled the condition as Fluoroquinolone Associated Disability (FQAD). That said, I do believe there are doctors out there that will listen and I’ll never give up on trying to find help and get better. Best of luck I hope that you’ve found some healing since you last posted.
Hi ladies!! Thank you so much for your wonderful advocacy and for sharing your stories. What was that you were saying about water retention and salt? I’ve been going through some chronic conditions and am resonating with some of the signs and symptoms you mentioned, I will have to look into a table test!
Found you guys on Instagram (: Yall are great! Can you do a video about EDS Next?!
Thanks for following! Yes we will!
omg i’m in san diego and looking for a cardiologist for pots
PLS make a video about, how does POTS affect Bp with positional change? also, is it possible to have high BP along with POTS?
PLS,
huh, well, I guess since I was just diagnosed, I should tell my brother, who has been telling me he gets dizzy for ages. Sisters, hey. gosh. I guess that's a family link that supports a genetic root cause, maybe.
Can I please have this pots doctor name in San Diego? I am in San Diego and need one .
Vaccine