My Dysautonomia Story | POTS | Postural Orthostatic Tachycardia Syndrome
Vložit
- čas přidán 16. 07. 2024
- Hello Friends! It's Aimee Esther here! I am a stay at home mama to a sweet 8 month old baby girl, and wife to an amazing husband. I have several chronic illnesses (see below).
Today I'd like to share with you my POTS / dysautonomia story. I was undiagnosed or misdiagnosed for years, living with symptoms in various parts of my body that seemed unrelated. Now I know that POTS has been causing all of my problems. For more info on POTS see the link below..
For my treatment plan check here: • No Drug POTS Treatment...
For more info on my chronic illnesses check out the links below!
POTS (Postural Orthostatic Tachycardia Syndrome)/ Dysautonomia www.dysautonomiainternational....
Fibromyalgia www.mayoclinic.org/diseases-c...
CFS (Chronic Fatigue Syndrome) medlineplus.gov/chronicfatigu...
SIBO (Small Intestine Bacteria Overgrowth) www.ncbi.nlm.nih.gov/pmc/arti...
IBS (Irritable Bowel Syndrome) www.mayoclinic.org/diseases-c...
Leaky Gut Syndrome www.health.harvard.edu/blog/l...
Chronic Migraines www.migrainetrust.org/about-m...
PCOS (Polycystic Ovarian Syndrome) www.mayoclinic.org/diseases-c...
Endometriosis
Follow along on Instagram / aimee_esther
The beautiful music for this video was provided by: Life of Riley Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 3.0 License creativecommons.org/licenses/... Let's Change The World Together by Artificial.Music / artificial-music Creative Commons - Attribution 3.0 Unported - CC BY 3.0 creativecommons.org/licenses/b... Music promoted by Audio Library • Let's Change The World...
I was recently diagnosed with POTS after about 3 years (my first symptom was stomach problems as well)! I went through around 12 specialists where I was told it was fibromyalgia, amps, anxiety, Lyme, or that I was simply a teenager looking for attention. We are looking into the possibility that I may have EDS, which would be the cause of my POTS. This video really helped show that I’m not alone, so thanks 😊🥳
you are AMAZING! I am SO happy you finally got a diagnosis! You are not alone! Keep fighting and please share with me about your EDS and anything else they uncover. A lot of people with POTS have EDS, I don't but I know a lot that do! good luck girl! Thanks for sharing your story with me!
Wait, EDS can cause POTS? Because I have like three things giving me EDS. 🤦🏽♀️
@@batterybroken Ehlers Danlos syndrome, a genetic mutation which affects the collagen in the body.
I have hypermobile type Ehlers Danlos syndrome, which is one of the 13 different types of EDS, as well as POTS and other health issues that EDS causes. My doctor prescribed me Mestinon, which can treat both the POTS and the digestive issues that EDS causes.
You can recover from POTS/disautonomia/other chronic illnesses. For many of us, these are just different symptoms of autonomic nervous system dysfunction. For me, sleeping better and more for a month (on vacation at my parents’ house) and lowering my stress a LOT during that month was enough to reduce my standing heart rate quite a bit, so the POTS has ceased to be a significant thing (I think I don’t technically have it anymore). I’m still working with chiropractic neurologists on other symptoms, but just knowing that there are effective ways to fully recover made a huge difference. Getting better sleep and reducing stress is not easy but it’s worth looking for different things to help with that.
thank you for sharing your story, and for trusting in the CZcams community!!
Thanks for joining! :)
I can totally relate to this! I’m in middle of seeing doctors and going through tests right now. I have no idea what I have but I’m experiencing chronic fatigue, foggy brain (can’t concentrate on anything), stomach and digestive issues, and a few other things. I don’t know anything about POTS but I’m gonna look into it. Thanks for this video!
So many people, including doctors, dont know about POTS. It took me so long to get diagnosed! You should look into it. And PLEASE let me know where your journey takes you!!
Do you happen to also have hyperflexible joints? That was the case for me, and it turned out that my POTS, digestive issues, fatigue, and other issues were all caused by hypermobile type Ehlers Danlos syndrome. Mestinon was able to treat my POTS, digestive issues, and fatigue.
Thank you for sharing your story! I got IBS type symptoms at the same time my Dizziness/Fatigue/fainting episodes started so I do believe it's very much connected. I'm sorry you had to quit your job. I also can't work which sometimes gets me down. Standing is the worst for me, and walking especially when the weather gets hot makes me feel like I've got no blood flowing inside me and like I'm about to collapse. It's so hard to live with. I was told I don't have EDS but I have HyperMobility Spectrum disorder which I believe is somewhat similar to EDS. So even if you've been told you don't have EDS, it is possible your collagen is faulty you may not display outward 'hypermobile' or 'bendy' symptoms. You just seem to have a lot of symptoms that I also have which I feel the root cause is a connective tissue disorder/genetic issue.
I am so sorry you have to deal with this! Thanks for sharing your story! It is inspiring to so many people!
Yes, HSD can cause some of the same POTS and IBS issues as EDS. Do you get a lot of constipation or gastroparesis? Sorry you're experiencing that.
@@Dulcimerist yes! I have gastroparesis and other bowel issues to do with evacuation and also my esophagus is affected too.
@@AdaptandAppreciate Have they ever tried you on Mestinon to treat both your POTS and gastroparesis? Researchers have repurposed this older medication to treat the POTS and digestive motility issues which are associated with EDS and HSD, since it can treat multiple issues with a single medication. It can also help a bit at reducing fatigue and muscle weakness.
www.healthrising.org/blog/2016/06/17/mestinon-chronic-fatigue-vagus-nerve-stimulation-exercise/
www.digestivedistress.com/novel-rx
drsanjayguptacardiologist.com/blog/mestinon-a-glimmer-of-hope-for-pots-patients/
My doctor put me on Mestinon earlier this year, and it has worked wonders for my POTS and digestive dysmotility! Although it might not work for everyone, it's inexpensive and might be worth a try.
@@Dulcimerist thanks for sharing!! Very interesting.
I got diagnosed with POTS in 2017 and I legit have the same EXACT symptoms as you did. It all started with stomach issues. This helped thanks!
Wow. No way!!! Good to know someone understands me. I am so sorry you are dealing with this 😭
Sorry you have that. I can also relate. Do you have Ehlers Danlos syndrome as well?
Hey, thanks for making this video!! I have been diagnosed a couple months ago with POTS. I have a lot of these symptoms and it’s hard, but I hope they can let me come to the Autonomic Disfunction center at this hospital I will go to. I have a hard time focusing with my college work with brain fog and when I stress my blood pressure drops, and then I have a POTS episode. And yes compression socks and salt sticks and salt salts snacks and pickles help me. So I appreciate you doing videos, and I have my channel to here, if you would want to see my POTS and Hyperthyroidism videos!! I hope you have a blessed day!!! 😊💖💕
Cant wait to see your channel too!
Aww thank you girl!!!
Thank you for sharing your story!!!I've said every word you have said except i do not know much about pots...i am going to look into the compression socks&recheck my blood pressure. You have such a sweet&delightful spirit about you!! I wish you the best with your health&channel!You are making a difference in others lives!❤
Compression socks have CHANGED MY LIFE! I have so so so much more energy now!! Also, my blood PRESSURE is normal but my HEART RATE increases upon standing. So i check my heart rate laying down then stand up and check again multiple times over the next 10 minutes. Totally look into it. Its hard to get a diagnosis of POTS becuase its not something that gets flagged on a blood test.
Also thank you for ypur kind words! Gives me motivation to keep sharing my story! ❤❤❤
Thank you!!!I ordered some adorable rainbow striped compression socks on amazon this morning!!I am hopeful!!!
@@candaceelizabethanne475 please let me know how it goes!!!
Yes i sure will!
Thank you for sharing your story you don't know how much of a blessing it is ❤ My name is Sidney and I am 21 I deal with a lot of chronic illnesses too . But for the last 9 months almost 10 I have had awful skull pain and dizziness and anytime I would sit up or not be in a lying position I wouldn't feel like me . My heart would always race sometimes I would pass out . I felt like things and people were far away even if they are right next to me . I belive in Jesus too since I was 14 sometimes he is the only thing that keeps me going and just the love he has given me for life and his children . I actually have cerebral palsy so it's always been harder for me to walk but ever since late October of 2018 I have been home bound because of so many episodes . My first neurologist experience was awful because he didn't belive my pain or struggle he thought I just had tension headaches and syncope . He never ordered any tests and he would get mad at me for crying because of being so overwhelmed . But then by Jesus grace I found a new neurologist named Doctor Dunn he ordered 5 different tests . 2 heart tests , MRI , EEG and tilt table test .
Just the other day I had the tilt table test and after a while the 2 nurses that were with me seen my blood pressure drop and my heart rate increase I told them please put me down before I completely pass out . Off topic another disease I suffer from is CRPS or Complex Regional Pain Syndrome I have been suffering with it since I was 15 . I started off with only having it in my left leg but now I have it full body inside and out . Basically it's one of the most painful diseases a person can go through . Touch hurts I always burn spams everything hurts . But I love hugs I love hugging people but I haven't experienced much touch in the last 6 years .
I remember praying to Jesus let me hug someone at my doctor appointment I miss touch so much . The whole time I was there doing the tilt table test the nurse named Deb she held my hand the whole time . Then the other woman nurse I don't remember her name , she said they both believe me and I cried because I was in so much pain doing the tilt table test . I thought I failed because I couldn't do it anymore standing up cause I knew I was just gonna keep passing out . They told me I didn't fail that I only needed to do it once . I have my next appointment in 3 weeks to go over all the tests results . At the end of the tilt table tests I asked both of the woman nurses can I please give you a hug and they were more than happy to give me a hug . At that I felt so many emotions because people don't realize what a simple hug or smile can do . I had a feeling to watch your story it's beautiful and it reminds me I am not alone .
Sending virtual hugs!!! You are AMAZING. thank you so much for you sharing your story!! You are amazing for going through this, and still holding to your faith. Keep the hope alive. You got this girl!!! PLEASE keep me updated!!
@@Aimee_Esther I promise to keep you UPDATED 😊 My next appointment is September 10th so I am hoping that day is diagnosis day . I am sending you VIRTUAL HUGS TOO ❤ . It is so true when you said people who are doctors make you feel like its all in your head and then you begin to question yourself and fill with so much doubt . I been going through depression too and I never tell the doctors I go through depression because then they will think it's all physiological . But the problem so many doctors lack is that people become depressed because of not being believed . It's because pain can be your worst battle not just physically but the mental and emotional strain . It makes you feel like you aren't as much of a help anymore like you use to be . I feel like if more doctors and nurses where like the ones I have now and what you found . There would be less suicides in this world . You have a wonderful channel and I subscribed today . 😊
@@sidneybarchett7308 thanks for supporting me ! Im here to support you too! Good luck with your next appointment. Cant wait to hear about it!
Please check for cervical instability 💜
Well I’m seriously confused. Lol anyway hello I love your videos. Hugs thanks for responding and being interactive with your followers.
Hey there! Welcome to our little community! So happy to have you.
If it helps- my last name isnt Esther, thats my middle name! 😊
I was diagnosed with pots two weeks ago. I was SO HAPPY!!
It’s been going on since high school, and I’ve seen over 8 doctors & gone to the ER at least 6 times.
I remember every time I’d leave the Drs office with no answers I would break down and just cry in my car.
I fainted when I was 7 months pregnant with my daughter, I went to Er they said “take some iron”
No one ever understood, and I did question my sanity!!! Before I went to see the cardiologist I had a break down with my boyfriend saying “ it’s just all in my head, why should I go? I’m just crazy”
It’s been such a long battle, but I’m so grateful to finally know what’s going on!!!
YEEEESSSS! I totally understand. I just felt like a crazy person! No one believed me and said i was perfectly healthy... So frustrating. i am SO happy for you to finally have a diagnosis!!! It is life changing!
Aimee Esther Do you experience pain in your bones after a day where you had to be physical??
Where it hurts to even drive your car?
My Dr said that doesn’t sound like pots, but I’ve read chronic pain is common.
@@arielsmermaids3464 Sorry you experience that. Do you happen to have Ehlers Danlos syndrome, or a vitamin D deficiency? Those can both cause POTS and aches like that. If it's bones specifically, it sounds more like vitamin D deficiency - my daughter has that and is going through treatment. I have Ehlers Danlos syndrome.
Hey there Aimee! My muscle aches are so bad too, and I also get nerve pain in my fingers and random areas of my body. They were all telling me that it's just fibromyalgia until I saw that 150bpm that you described. It's so scary and awful.. Are you on any meds for your POTS? They just gave me Ivabradine but haven't took them yet.
Ivabradine is a good POTS medication - it lowers heart rate without decreasing blood pressure. I have POTS from my hypermobile type Ehlers Danlos syndrome, and take Mestinon and a small nightly dose of Clonidine. My Ehlers Danlos syndrome is why they give me Mestinon, since Mestinon also treats the digestive motility issues that are common with EDS.
I just got diagnosed with pots and I am still having stomach issues too
Took me about 20 years to get diagnosed with pots
For me took 6 years I was treated like a crazy person diagnosed with panic disorder gaslighted by doctors
what specialist diagnose POTS?
Thanks for that. It was great.
how old were you when you were diagnosed?
The left side of my neck hurts all the time! Well it comes and goes but it's frequent...I want to get some compression socks. Do you where them everyday? That cover your calves? I've gotten so dizzy before but ya- never passed out.
I wear them the second I wake up until I go to bed. I only take them off to shower. I use different ones for exercise and for the rest of the day (see my POTS must haves video for the ones I use). I don't like the ones that come up to my thighs because they always fall down. I wear the ones that come to my knees mostly. I like the open toe ones for summer.
Also the neck thing is crazy that you get that too! I have a video on my migraines, because i always get migraines that come through the left side of my neck.
@@Aimee_Esther would you say the socks help a lot? But do you still have to take it easy and rest?
That's crazy it's your left side too!
@@s4r4b34r Yes. The socks have CHANGED MY LIFE! I can't live without them anymore.
Calf compression sleeves have helped me a lot as well! (I have POTS from my hypermobile type Ehlers Danlos syndrome.) I wear compression calf sleeves that are really soft and mostly spandex as part of my pajamas, and I have several pairs of woven fabric blend compression calf sleeves for daily wear.
Now I just wish I could find someone who makes videos about Narcolepsy, I have no idea what is wrong with me or what is happening in my body, I know I have Narcolepsy but my sleep specialist literally told me nothing about it and now I have no doctors. 🙃
Did you get a sleep study to check for narcolepsy?
Have you heard of BE IN HEALTH MINISTRIES? They specialize in healing from autoimmune diseases. They are located in Georgia and are Christ centered. 💜 I think I’m going to go for a week. My friend went it really helped her.
All of your diagnoses are associated with Chronic Lyme disease. I would definitely find a lyme literate Md. I had POTS and lots of other diagnoses
Yeah ive been tested for lyme disease SO many times haha. Do you have pots? Or wa that a misdiagnosis?
@@Aimee_Esther Have you been tested through a more reliable test like Igenex Labs? I did have POTS! my Neurologist told me and also an ER Dr. When I saw a Cardiologist, he laughed and rolled his eyes basically. Whenever I stood up, my HR would go from 110-160 at the time. Super scary. I was always out of breath and at the time, I had 2 small kids. I also have been misdiagnosed with Vestibular migraine. I am always dizzy and off balance. I used to get horrible migraines.
@@jmccarthy6178 never heard of Ingenex Labs..., but I has tested quite a few times, so I would like one of those would be reliable.
@@jmccarthy6178 SO Sorry you have to live with that :(
@@jmccarthy6178 All of her diagnoses are also associated with Ehlers Danlos syndrome, which I believe she mentioned that she's already been diagnosed with. People with Ehlers Danlos syndrome are often misdiagnosed with Lyme disease or fibromyalgia, because too many doctors are unfamiliar with Ehlers Danlos syndrome.
I think I am struggling with this. Is there a way I can email you?
Aimeeestherblog@gmail.com
Are you related to an Allison Gritton? Asking for a friend!? Lol J\k
Nope! Never heard of her..