Pistol

Hello @Ashc! COVID will definitely be here with us from now on, just like the flu. And - like the flu - we will find ways to live with it. We ( husband, daughter and myself ) are currently in quarantine because we all have COVID. We had chosen no to be vaccinated. I was sick first, with a high fever and sore throat for 3 days and then improved rapidly. NO POTS flare!!!! My PCP contributes this largely to the fact that I am on hydroxychloroquine for auto-inflammation ( contributing factor to my POTS symptoms ). I also made it through unscathed because I have a port and get IV fluids for the POTS. My husband was sick and developed some complications from the virus but had antibody infusion and seems to be getting better. My 16 year old daughter ( who also has POTS ) is just fine, a bit tachy and dizzy but otherwise OK. I believe that getting vaccinated is the best defense against COVID and complications from COVID, but from what I have seen in my area and state is that vaccinations do NOT provide a definite protection against getting COVID. In our area the ICU and ER are full of people that were fully vaccinated, as well as people that were not. Personally I believe we should get the shot, remain masked and do social distancing but otherwise go about our business. There ARE meds proven to help with COVID infection that have not been as thoroughly advertised as the vaccines. Some studies - for example - say that hydroxychloroquine helps COVID infected people to get better faster and prevent complications, and then there are studies that say it does not. The information out there is seemingly contradictory and hence we should use common sense. I know far more POTS patients that did fine with COVID or the shot than people that got sick from them. I never was afraid of getting COVID simply because I have POTS - I am used to flares and have no underlying conditions that would warrant severe complications. And I was right, in my case all was well. No, I don't think you are overreacting. But keep in mind that there are much, much more positive cases with mild symptoms than there are severe cases. Protecting yourself with shots and basic preventative measures is really all you can do. As we deal with the virus longer and longer more treatments will appear and eventually it may just be like the flu. Remember - the flu once was a pandemic too! Keep positive, breathe deep and live in the present!

Hello @Echo - you are not crazy! These episodes of impending doom used to happen to me when I was at my worst. I have HPOTS and NCS and used to have tons of syncopal episodes and autonomic seizures. The latter are caused by sudden dumping of adrenaline causing sudden and severe vasoconstriction, which in turn stops all blood flow to the brain. When the adrenaline would spike I always had a feeling like you describe: not panic or anxiety but rather a feeling of extreme excitement and the feeling that something bad is going to happen. I do believe that in my case the RESULTING anxiety over having a seizure made it worse, but was not the cause. It also will happen during or right before sleep when I am in a flare. Not eating enough will contribute to the stress on the body and cause worsening adrenaline spikes. It is a horrible cycle that is difficult to stop! The best thing I can do when that bad is REST, DRINK and get IV fluids. Fortunately I have been stable since getting a port and weekly IV fluids for the last 3 years, so I can only tell you that getting infusions during a flare are the only way I can stop it. I have never been able to stop a flare without them. I hope you will feel better soon. I completely know what you are talking about, and it is NOT anything psychological ( at least in my epxerience ). Be well!!!

@MikeO - when I first started to pass out from POTS I noticed that I had done countermeasures for a long time subconsciously. I would always cross my legs, walk holding on to a wall and lean against a wall while standing. In retrospect I realize that the POTS symptoms had been around for a long, long time and I had compensated for it all along.

@MikeO - this certainly can help, but I believe it requires complete dedication. I t did help me.

@Delta - as someone who used to take seizures from an insect bite: you never know. You probably will not know until after it is done. So - the outcome depends on nothing but your willingness to try!

I am so sorry @Elaine K! I second a lot of what @Jyoti said: unfortunately in most cases of dysautonomia it is essential to learn to pace ourselves and adjust to a new normal. Also - it is probably of no use to try to maintain a certain HR, since in dysautonomia the HR regulation is not working properly. In many cases you may experience abnormal tachycardia simply with standing up, let alone exercise! Depending on the type of dysautonomia you were diagnosed with you may be exercise intolerant, meaning that even slight exercise can cause extreme fatigue and stress. Usually this is caused by the body trying to maintain circulation despite the chaotic signals from the ANS. For me the best way to determine my abilities after becoming disabled by POTS was to stop doing ANY exercise ( because I was pretty much bedridden ), and to slowly increase my exercise to tolerance. This means not exercising to achieve a certain HR or do it for a certain amount of time or laps etc but rather listening to my body and to stop when I could tell it was enough. Swimming - IMO - is a good exercise for dysautonomia as long as it is done TO TOLERANCE. For me I would not be able to look at exercise as competition but rather as a way to maintain my health. Insomnia and fatigue from dysautonomia can sometimes be caused by the abnormally great adrenaline spike the ANS experiences in an attempt to compensate. Often the SNS goes into overdrive trying to maintain proper circulation to the brain, that is why too much exercise can cause worsening symptoms. Having said that becoming inactive ( like many of us do because exercise makes us feel so bad ) will make it worse too. The best way - like I already mentioned - is to start slow, with just a few laps and then FEEL your body's response rather than going by your HR. Once you learn to listen to your body you will know what you tolerate and how much you can push yourself. And some days you will be able to do more than others, and it is important to not set limits - if you push yourself you will most likely pay for it.

@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?