Pistol

@Knellie - I am not speaking as someone who knows the answer but in my experience: yes. I was super flexible as a kid but never considered it out of the ordinary. I developed severe HPOTS when I was 42, and my sister ( who also has POTS ) recently underwent extensive genetic and autonomic testing. She has the genetic type of EDS, and POTS runs in the females of the last 3 generations of my family. I also dislocate my ribs frequently. So - assuming that the EDS might be present in all of the females affected by POTS in my family - I guess you can have it without being a contortionist. IMO.

@MikeO - yes, chronic inflammation DOES affect dysautonomia. Vascular disease does not necessarily mean inflammation, though. So if you are asking if inflammation does affect dysautonomia - I totally believe so b/c in my case treating inflammation also improved the dysautonomia symptoms to a degree. However - do I think dysautonomia and atherosclerosis are connected? No, I do not.

@MikeO - I do not think they are connected, but I can imagine that one could make the other one worse.

So sorry to hear this bad news, @MikeO! Best wishes!

@Nin HAHAHA!!!! Only someone with POTS will appreciate this logic!!!!! I totally get it!

Hello @avery - I am so sorry you are going through this! I don;t really know what a 504 is. My daughter ( 16 ) s best friend has POTS and although she is very active and does well as long as she drinks enough she also has times when she has to miss school days. Here in our county the school year has just begun and some kids are learning remotely from home because of COVID. Is that something that might be possible for you to do? It would make it possible for you to not have the stress of going to school and to learn the same subjects as the other students, but from home.

@JFB - It took a long time before I noticed something, at least 3 months. I was told it would take at least that long. Today it has been almost 9 months and I am still doing great. I don;t even have ANY joint pains or swelling at all anymore, and I was able to decrease my beta blocker as well. --- Give it time, some people say it takes a lot longer than it took me to feel a difference.

@MikeO - I am german and have no idea what that means ....

So sorry, @MikeO! I really know how frustrating this is, it happened to me daily for years. I wonder if your doctor would ever consider low dose Tennex ( guanfacine, not the ER version ). I too have labile BP's and this med ( ordered by my autonomic specialist ) helped me for a while, until I stabilized on IV fluids to where I no longer need it. It does not prevent the drops in BP but it brought my High BP down to where the drops were not as noticeable any more. Like instead of 153/110 to 90/60 it would be only 120/80 to 90/60. I would still get lightheaded and feel like passing out but was more able to prevent the episodes due to more warning. Since the cause of your BP drops has been determined to be of neurological onset you cannot really treat that, but he high BP CAN be treated. I started out on 1/2 of the lowest dose twice a day and that was enough to keep my BP down ( I do take other BP meds as well ). But it cannot be the ER version ( called Intuniv ) b/c that is ordered for ADD and cannot be cut in half as well as will make it difficult to get off ( you have to wean off to stop it).

@racingheart77 - I cannot tolerate any energy drinks at all, not sure if it is the caffeine or something else. They immediately turn me into an adrenaline torch! I am like ADHD on steroids, with high BP, tachycardia, tremors ... I am not sure about the bloating, though. Have you read the other ingredients and maybe there is one you are intolerant to?

Hello @Castorp - in my case I simply had generalized symptoms of inflammation: joint pains and swelling, interstitial cystitis, trigger finger, esophagitis, duodenitis ... over the years there were many, many inflammations diagnosed. Their onset also coincided with the onset of my POTS symptoms ( labile BP, orthostatic tachycardia, high adrenaline, syncope, seizures, fatigue, brain fog ... the usual mix ). I have been diagnosed with HPOTS for 10 years, sick for 12, various treatments with various effects all this time. What helped me the most with controlling syncope and seizures are weekly IV fluids, beta blocker, SSRI, calcium channel blocker and .. Plaquenil. It has been a HUGE breakthrough treatment for me.

@MikeO 😣. Hang in there!

@Castorp - I have HPOTS and NCS and since onset of these I also have been experiencing generalized joint pains, trigger finger, swelling and IC, esophagitis and other inflammatory conditions. Over the years all autoimmune markers were always negative except for ESR, which essentially just shows that inflammation is present. My autonomic specialist is currently part of the research that has found a connection between autoinflammation ( not autoimmune ) and dysautonomia. He started me on Plaquenil ( Hydroxychloroquine ) 9 months ago, and he was right: not only did my joint pains and the swelling improve but so did the POTS symptoms! I have been able to greatly cut down on BP meds and my Beta blocker decreased from 25 mg to 6.25 mg! Other BP meds, like guanfacine, were cut all together. My fatigue has improved ( although i still have to watch what I do ). In my case the inflammatory response DID contribute to the POTS symptoms, and getting it under control my quality of life has improved, and I no longer live in constant pain.

Waiting to get over the aftermath of a viral infection with a high fever ( NOT COVID! )

I havent finished it yet, but thanks for sharing!

Oh @gertie - I am so sorry! That sounds horrible, no wonder your are "paranoid" about food! I also have IBS and IC, so I have to follow a strict diet as well. I have learned what to avoid and can deal with problems when I revolt, as long as I only do it at times. But I remember how I dreaded eating when I was at my worst. I saw a nutritionist and she advised me on what and how to eat to avoid my worst symptoms, and that really helped. Especially her explaining that steamed or cooked veggies are a lot more tolerable for both IBS and IC, and as long as we also eat the liquid they were cooked in we dont loose any of the nutrition from the cooking process! I also found that lean proteins give me a lot more energy than carbs, and they make me feel fuller longer. I try to eat natural sugars and avoid processed foods, which helps.

@MikeO I am on a beta blocker that needs to be taken twice a day. I know that whenever I miss a dose I feel it!

@gertie - I have passed out inside, outside, half way in, half way out ... the time that reminds me the most of your experience is when I was in my garden tearing out dead tomato plants ( this was before I learned my limits, lol ) and remember feeling it coming on but thinking "just one more plant then I'm done .." and then I woke up to my dog licking my face. My husband says the dog came running to the door barking, alerting him that something was wrong, and when he came out I was already sitting up, with the dog running wildly around me. --- I have also passed out while hanging clothes on the line, just walking and also watering the garden ( this is only the times I did it when it was summer, and it was outside. ) I now barely ever pass out anymore, partly due to being better controlled on meds and partly because I will get to the floor before I loose consciousness.

@MikeO - I am not exactly sure WHY this happens, but it does happen to me. Every once in while I will have bursts of tachycardia or irregular beats in the middle of the night. I wonder if this is because our adrenaline levels fluctuate during sleep?

@MarcoS108 For most POTS sufferers enemas of any kind have been found to cause increased symptoms. I myself would most certainly pass out and even have seizures from the vagal stimulation ( I have HPOTS with autonomic seizures as well as NCS ). Enemas can have severe effects on BP and HR, even in healthy individuals, so I would practice caution to anyone with POTS.

I would like to mention here that - although in some cases the underlying cause of POTS cannot be determined - some of the established causes of POTS are hypovolemia, EDS, SFN, genetic abnormalities, baroreflex failure and more. A more specialized list of causes can be found here

😂

@Pietro - have you ever had a sleep study? This might be a good test for you to get. They measure your entire sleep pattern. Also - you might be suffering from sleep apnea. I know of other people that get jolted awake when they stop breathing from sleep apnea and they dont even know that they stopped breathing!

@MarcoS108 - I never developed an actual FEAR of eating but my eating habits completely changed. My GI tract was very much affected by dysautonomia, and I had severe GERD, inflammation etc. I had to re-learn how to eat in a way that agrees with me. Yes, @MikeO, I too found that eating 6 small "feedings" a day is better than 3 meals a day. I am now an official grazer - I kind of eat all day but not a lot in one sitting. When I do I usually pay for it by ending up in bed for a few days! And my go-to thing I like to eat inbetween are pretzels!

@czechitout @MikeO IBS can cause undigested food in the stool. For me I get bad IBS whenever I am in a flare, mostly causing diarrhea in my case, though.