My POTS Diagnosis Story
ฝัง
- เผยแพร่เมื่อ 12 พ.ย. 2019
- I share the story of my initial POTS diagnosis story, and what that was like. I talk about the tilt table test, and how dismissive my cardiologist was. I also touch on how I continued to handle school once I became ill and was diagnosed with POTS. I talk about my participation in Dr. Julian Stewart's study which you can find below if you are curious! The big takeaways are to fight for answers and to not be afraid to travel to see doctors who know more about rare conditions.
Welcome to my channel where I share my invisible illness story to help educate and support others. If you are new here, please consider subscribing: th-cam.com/users/AGPCRock...
Dysautonomia International: www.dysautonomiainternational....
Dr. Stewart Study: grantome.com/grant/NIH/R01-HL0...
Watch more videos from me here:
POTS Explained: • Postural Orthostatic T...
Tilt Table Test Explained: • Tilt Table Test Explained
Gallbladder Removal Story: • Gallbladder Removal Story
Let's connect on Instagram:
/ thealyssalayne
When did you first learn about POTS?
Yesterday via a facebook group and after this your video, i can confirm myself
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.
Thank you so much for your words of encouragement for others! I have every confidence that you will get through it, and that you will find the right combination of therapies and medications to help you. Keep moving forward and things will improve. Thank you so much for watching and for commenting!! 💜 - Alyssa
I read where Doctor Berg recommended high dose of vitamin B1.I fixing to order some. He's a Keto Doctor online.
@@AlyssaLaynepls help me. I am struggling.
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
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.
What a great speaker wow nice work ❤ please make more videos like this ❤❤❤
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!
Oh my goodness Kayla, thank you so much for your sweet comment! I am so glad my story was able to provide you with some comfort and knowledge that you are not alone in your experience. Having a name for your illness is more than half the battle! I am also thrilled you are finding answers and are on your way to a treatment plan that will dramatically improve your life. There are so many of us out there with the same struggles, and I am hopeful this can be a place for us to find each other and support others who truly understand. Best of luck! - 💜Alyssa
We're they able to diagnose pots with the monitor?
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 :)
This was helpful...Thank you so much 😊
Glad it was helpful! 💜- Alyssa
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 😢
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
I bet it's way more common than thought because it is so elusive. I'm 48, took me 20 years to get diagnosed even when they kept saying it could be that, but I guess I never got the right tests before this month. Just diagnosed. So your feedback is certainly interesting, to know a cohort in your area, yikes. Maybe you just have a better hospital in the area that knows when to tilt table test??? That could be a factor. hm.
We're you vaccinated
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 am so glad your husband was there to catch you! Sometimes a simple in-office experience like that is super helpful in leading doctors to the correct diagnosis. I am so glad you found your answer! Thank you so much for commenting and sharing that experience! - 💜 Alyssa Layne
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.
Have you seen any doctors for POTS in Texas?
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.
Do you still have this? If not,what changes have you made?❤️
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...
Hi Laurene! After my New York trip I was on Midodrine, Mestinon, and Losartan. The first two are a lot more common in the treatment of POTS, but I think Losartan is picking up some steam. They are certainly worth brining up with your doctor. Depending on your doctor's familiarity with POTS it might be a good idea to direct them to this study doi.org/10.1016/j.cppeds.2013.12.014 which mentions Midodrine and Mestinon as potential treatment options or this one doi.org/10.1152/ajpheart.01139.2007 which discusses the use of losartan in managing POTS. I hope you find these resources helpful and I pray you get relief from your symptoms very soon. Thank you so much for watching! 💜 - Alyssa
Thanks! My doctor didn’t know what pots is, he had sent me to a specialist doctor and he was the one who diagnosed me with Pots! And I don’t think that the meds are helping me...
I wanna get a job again 2!
@Laurene Bauman Rejoining the workforce is definitely an important goal, but unfortunately it takes time to find the right combination of medications and lifestyle changes that will work best for any given individual. I hope you and your doctor are able to navigate that process quickly and get you substantial relief soon so you can get back to living the life you want. - 💜 Alyssa
Thanks! Ya I hope so too!
I guess I’m tired of not feeling well and I wanna feel better! And want to get better 🙏 I know that it’s gonna be a lot more tricky than before I got sick 🤕
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 :)
Hi Clairbby!! I am so sorry I am just now getting back to you, but I do have some tips and resources for you. As far as your cardiologist goes, I would give them some of the information found at www.dysautonomiainternational.org/ there is a section there of information for doctors specifically. It turns out that POTS is actually not that rare, so hopefully that helps. If they continue to dismiss the possibility without proper testing, I would consider finding another doctor. Unfortunately in my experience sometimes it just take ending up in the right physician's office to get a proper diagnosis. There is a list of knowledgeable doctors on that same Dysautonomia International website. I have done several heart monitors myself, but I don't think that are diagnostic for POTS, but they can rule out some other problems as well as reveal the high variability in heart rate that POTS can cause. I hope that appointment went well and that you have a diagnosis! Some of my best tips for dealing with physical symptoms is to do some small lifestyle type changes. Try increasing your electrolytes and hydration. This will increase your blood volume which can help. Also just allowing yourself to rest without letting it get to the point of deconditioning can be helpful! From an emotional standpoint, talking or journaling out feelings has been really helpful for me, as well as finding other things you enjoy (that don't make you feel worse) to fill your time can be nice. For me that means putting on a Disney movie and crafting or coloring! Sorry for the bit of an info-dump, but I hope you find some of this helpful, and I hope you are feeling much better!! Lots of 💜 - Alyssa
This is sm old comment but how are you now
Pots is not rare! Neither is autonomic dysfunction! I hate that they make us feel so crazy. 😒
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
Hi there, What do you mean by EDS? Sorry and thanks.
@@Reclamalo Ehlers-Danlos Syndrome(I ended up with a different diagnosis of HSD instead, Hypermobility Spectrum Disorder, EDS falls under HSD categories
@@user-hr9vs4dr5k WOW! I'm very surprised because I was researching about HSD and EDS and I have some of those symptoms too. Particularly about the bones. Does your POTS happen sometimes? Or all the time?
@@Reclamalo all the time, EDS is a common co-morbidity of POTS
@@user-hr9vs4dr5k Very interesting.... I must have a check-out by another cardiologist and see.
I think I have POTS. I get dizzy and sick. My heart beats out of my chest when I stand.
Definitely symptoms of POTS
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.
Is this proven?
@@swagkidm10definitely not. There are lots of kinds of pots and a lot is unknown.
Ny first reaction was how and why she is standing and making video
Do you have someone with pots sound and light sensitivity?
Sounds like a low B12 symptom.
@@guncontrolisusingbothhands2331 I was just injecting myself with b complex. I don’t thing that I have b12 deficiency.
@@monsteralex3098 I've read where a vitamin A deficiency can also cause sensitivity to light and sound. I don't know if it can also cause POTS or not though. Like you said, since you've been injecting B complex vitamins that should rule out a B12 deficiency. When I start having problems I start googling the symptoms and vitamin deficiencies. My hair started falling out about 6 months ago and I was super tired. It turned out to be a low iron due to drinking a gallon of tea a day, and taking high doses of zinc. When my iron was low, it was causing a high heart rate too. Apparently the heart starts pumping faster to get more oxygen to the cells when iron gets low. Anyway, good luck my friend.
Ok. Weird question. Does anyone get a weird taste in their mouth when the dizziness after standing up happens?
Didn’t the makeup work become overwhelming?