My POTS Diagnosis Story

When did you first learn about POTS?

I have pots, I'm turning 14 and have had it since I was 12. I can't seem to get better. I'll get through it, and if you are watching this and have pots or think you do, you'll get through it too.

Alyssa! I am waiting on my holter monitor test for a POTS diagnosis but I am 99% certain I have this syndrome. Its been misdiagnosed as “chronic migraine” and “anxiety” but after my doctor speculated that I match the symptoms of POTS, I’ve felt like I finally have a name to my illness. What you said at 6:36 about things you “thought” were normal— I feel the same way about every single thing you mentioned. I walked around school today realizing that the dizziness, the cold feet, the flushed face/neck, and the red hands/feet are NOT in fact normal. Thank you for this video, and for sharing your feelings and thoughts about POTS and your life pre-diagnosis. I’ve never related more to anyone’s struggles than the ones you mention here!

Thank you for this video! I have fibromyalgia and am in the process of getting into a rheumatologist for a hEDS evaluation. I've heard POTS mentioned a lot in the hypermobile community but thought that if I do have hEDS, I must just part of the percentage that doesn't have POTS. However, the other day the most interesting bit of info on POTS I heard was actually from a fibro youtuber who has the condition. And when I found out that not everyone with POTS faints and that most of the symptoms either overlapped with my other conditions, or explained symptoms that didn't have a known cause, I decided to do some more research. So here I am! Not leaning for or against the idea that I have this condition but very open to learning and getting tested. I didn't realize a loud racing heartbeat was abnormal, doctors have found no cause for my intermittent chest pain, and I don't keep a sharp eye on my fitbit when I actually remember to wear it, but I have noticed that my heart rate can jump VERY quickly with any minor exercise, though that and my seemingly random flushed face or paleness could be weight related. I do a lot of physical labor though, and can certainly work up quite a sweat with just a little bit of walking. Could also be another layer to why I suffer from fatigue, insomnia, nausea, lightheadedness, frequently lose my balance when attempting to stand up or just while standing in place, and a permanent headache. Doctors aren't sure why my headache is permanent, but it's not a crazy symptom for a fibro patient, and I assume the bad balance and tripping are likely just related to my hypermobile joints. Honestly feel like I have to do all of the research, testing requests, and specialist requests myself. It took a LONG time to get a doctor to agree to my fibro eval and I passed with flying colors. Ever since, she's been extremely dismissive of any type of symptom or complaint I may have, and I don't have better options for a general practitioner in my area

What a great speaker wow nice work ❤ please make more videos like this ❤❤❤

Goes to show you how appearances can be deceiving. I didn’t know you well in high school but you always appeared to have your shit together at all times :)

Hello Alyssa! Thanx for sharing your story. Can you tell me the exact names of your medications? I’m taking Inderal and Ivabradine and feel horrible 😢

Have you seen any doctors for POTS in Texas?

I am in my late 20's and was diagnosed with POTS around 13. I didn't faint or pass out but was fatigued, dizzy, had heart problems and migraines etc. I did the tilt table test. I am on fludrocortisone and salt tabs as well. My POTS is mild but it is noticeable when I don't take my meds. I've been diagnosed over 10+ years now. Its strange too as I am in the Equestrian community and many young people I know have it. From my barn alone I know three people with it aside from me (and my barn only has 12 people) and two people at my dentist who work as receptionists have it as well Although it's nice now to know I'm not alone, it's just different as when I was 13 I didn't know anyone. Im glad POTS is becoming more known and talked about

Girl, not my life is easier like that. Cried alot during your video bcos i am struggling awfully for the mere diagnose for last 1 year but still left me fainted.

This was helpful...Thank you so much 😊

I have POTS, diagnosed by 3 different MD's. Cardiologist tested me and I plummeted as soon as I stood up, thankfully he was prepared and my husband caught me.

I had this in my 20's. I would be at work and bend down and as soon as I would stand back up it hit my heart wpukd race out of my chest, dizzy, had not energy and felt like I was going to faint some my heart would beat fast for like 30 min and sometimes like a hour. It was horrible I Thought I was going to die. It would always be when I would get up really fast. This was in the 2000's. I would never faint but always felt like I was going too. They never diagnosed me with this.

I’m currently seeing a cardiologist for symptoms that fit POTS to a tee but my cardiologist doesn’t believe it’s POTS as it’s so rare. i’ve been on a heart monitor for two weeks now, i get it off in 3 days, and then i have another doctors appointment. what do you advise to emotionally and physically handle my symptoms (even if they may not be caused by POTS) while i’m awaiting a diagnosis? thank you :)

When I was diagnosed with pots... Alyssa I would like to know how to spell those kind of meds you were talking about when you went to New York? I was diagnosed with pots last summer and I don’t feel any better yet...

I think I have POTS. I get dizzy and sick. My heart beats out of my chest when I stand.

POTS is often caused by a low B12 tissue level. To test the B12 tissue level you need a methylmalonic acid test. Thus acid will always be elevated when the tissue is low in B12. A normal B12 serum test won't show the tissue level. Good luck and God bless.

I have had symptoms since I was 12, and I'm 20 now, I am still hooked up to heart monitors, again and again, without getting a diagnosis This time I insisted that it is POTS as I have EDS and CFS which both relate to it And fingers crossed, I hope I will finally get diagnosis As I need treatment to help with my daily life

huh. I was put on Zoloft two months ago and I feel terrible. Did you ever find a contraindication? I have POTS born with it, didn't know it wasn't normal to black out whenever leaning over, to pick something up, etc. Even with the extra salt now, the fatigue isn't resolving. It's sosososo hard not to lie in bed, it's all I want to do and I have to try not to or I will just lay there feeling like gravity is 3X and I'd rather be dreaming.

Ny first reaction was how and why she is standing and making video