Pistol

@MTRJ75 no breakthrough infections, we never got the shots. Doing OK, taking things slow.

@MikeO - yes, a central line stays in only for about 6 weeks, and is more geared towards temporary IV medications. A PICC line is like a central line that gets threaded into the heart via the elbow, and can be used for several months. A port is an implanted device that can stay in for 5 years and can be used daily, weekly or monthly. Many people here that get IV fluids for their POTS simply go to an infusion center, ambulatory care center, urgent care center etc and with a prescription can get an infusion with a regular needlestick in the arm that then gets removed when they are ready to leave. I have a port, since I am in need of IV fluids several times a week in order to stay upright and conscious. But i used to get them as an outpatient, just needed them so often that it was no longer realistic to go somewhere several times a week. There are risks with infusions, the access being the main one. PICClines and central lines of course have a high risk of infection, so do ports, as well as blood clots. Many specialists do not like to use IV fluids unless as emergency treatment for a flare. i used to have to be admitted every 6 weeks for 24 hour fluids with severe POTS flare. I realize I am answering much more here than you asked, so I apologize. Just thought it might be helpful!

Hello @Hippopotsamus - yes, I fainted frequently as a teenager ( diagnosed back then with teenage angst!!!! ) and also developed tachycardia and palpitations as well as sweating and hypoglycemia, even into my 20's. I became ill with full-blown HPOTS and NCS at 42, I believe it was triggered by childbirth 5 years before that. Since the birth anyway I was wired, hyper, nervous, nonstoppable. Extremely high adrenaline, all the time, never slept. Ended up passing out and having autonomic seizures, which lead to my HPOTS diagnosis conformed by neurotransmitters and TTT. Autonomic neuropathy as well as HPOTS runs in 3 generations of females in my family, so we are definitely genetically predisposed. Some of us have EDS, one sister also has SFN.

@Scout - from what i have read on this forum most people did relatively well with the shot. Some flared a bit, but most seemed to have overcome the side effects after a few days. Even here where I live most people did well with the shot. I know of two people who were made to get the shot right after getting COVID naturally and they got a bit worse symptoms from it.

@Scout - has your doc ever considered a calcium channel blocker? Or guanfacine ( Tenex? ). These meds have been helpful in controlling my labile BP's.

@Bergbrow - I have HPOTS and get these tremor/chills attacks when my adrenaline goes up. I will be shaking uncontrollably, yawning excessiveley ( an attempt by the ANS to provide more o2 to the brain ), hands and feet and lips blue. If I dont lie down I go down, and even take seizures from absent brain circulation. The one thing that has stopped these for the most part are calcium channel blocker ( to provide adequate vasodilation ), avoiding triggers and IV fluids. I get them 3 times a week vie port at home and have not had too many episodes since. Actually NO seizures or syncope this year!

@targs66 - ironically my husband now seems to have some mild POTS symptoms! He seems to get very tachycardic ( 130's ) when he does anything. He had this problem bofore and took Verapamil but stopped it during COVID. I have him drink a lot and eat salt, hopefully he will improve. Thank god no fatigue! Thanks so much for the well wishes!!!!!!

So sorry @dancer65! I know how miserable these things can be! Take it easy, try to rest and follow the diet. Hopefully the Turmeric helps! Keeping you in my thoughts, well wishes from across the pond - Pistol

Thanks @MikeO 😊

Hi! Just wanted to share my COVID story. 3 weeks ago my family and I came down with COVID. My husband was bad and had to get the Antibody infusion right away, he got better fast after that. My symptoms lingered: high fevers every day, fatigue, cough, shortness of breath ... went to ER 3 times, once for antibody infusion, always was sent home. Until finally on day 14 I could no longer breathe, fever 103.8. PO2 in ER was only 83. They admitted me for 4 days on O2, steroids and many other meds. Finally got to come home Saturday on home O2 and am slowly improving, although it will take weeks to get back to normal. What I wanted to point out is that despite the severity of the illness my POTS symptoms have been under control! Yes, BP is up a bit from the steroid, but no syncope, seizures or even BP surges! That is something unheard of for me, since I normally become severely unstable from even the slightest sniffles. I am hopeful to owe this good fortune to the Plaquenil my specialist put me on in December 2020. It really seems to have helped the inflammatory condition that was a definite underlying trigger for the dysautonomia symptoms. I hope this info will be helpful to someone. Be well, everyone!

@POTSie78 - oh, I sympathize! I went from multi-tasking mother/wife/nurse at 42 to complete cripple! Couldnt stand without fainting or having seizures at work or anywhere, always in ER or hospital, seeing specialists all over the states, eventually becoming fully disabled and home bound ... it was a tour-de-force of fighting my life, my body, my faith. But eventually I gained acceptance, which is the very most important step for us to come to terms with our new reality. Today I live a good life again - yes, with extreme limitations but what matters on life is still here, everyday. And I have a newfound appreciation for my bodies ability to adapt and to "outsmart" the dysfunction! Wishing you peace of mind and the realization that many of us have found ways to live good lives despite our illnesses. Hugs!

@CallieAndToby22 Hi - your post reminds me of something that ended up being essential in helping to improve my dysautonomia. When I first became severely ill with HPOTS I also developed generalized joint pains and IC as well as severe GI inflammation and acne at the same time. Over the years we were able to improve one by one. Today I have mild GERD, IC and clear skin. I saw a rheumatologist twice who ruled out AI disease and started me on steroids, which shot up my BP and landed me in the hospital ( 2 years ago ). Thankfully my wonderful autonomic specialist does research on the current leading findings of POTS being an inflammatory condition: meaning that chronic inflammation - may ot be neurological or otherwise caused - can and will cause dysautonomia in predisposed individuals. Back in December 2020 he started me on Plaquenil and I have sooo much improved! No more acne, all jointpains are completely gone ( I even had a constantly swollen knee and triggerfinger, all gone ), my IC is very bareable and my stomach is very well controlled. In addition my HR and BP are mostly in the normal range ( that is with IV fluids 3 times a week at home. I also used to take turmeric supplement for the inflammation with great results, since I cannot take NSAIDS. It is a powerful and effective little herb, and even used and known in the modern medicine world. Low histamine diet may be helpful too. Good luck!

@MTRJ75 - the needlestick episode you described does sound exactly like a vaso-vagal event. I have - in addition to POTS - vasovagal syncope, or neuro-cardiogenic syncooe. Thei gets triggered by a certain event and causes sudden and severe vasodilation, leading to drops in BP, increase in HR, sweating, weakness, excitement, paleness and eventually syncope. Public speaking for example is a common trigger to many people, so are blood draws or shots. The best non-medication strategy to prevent these episodes known to me are ample fluid and salt intake and compression garments. I know of a lawyer that used to pass out in court all of the time and now wears very tight pantyhose, never passed out again. I also really would recommend to have someone take you to any lab draws from now on!

I get them during times of high adrenaline from triggers, and what has seemed to help me best is a low dose Ativan ( 0.5 mg ) right before bed time.

Hi @docpots - I have HPOTS and NCS and in the first few years, when my symptoms were hardly controlled, I would have many hypoglycemia episodes. It would start feeling hungry and weak and had to lie down, then I would start to sweat profusely. If I did not eat I would become unconscious. I have been disabled for 8 years and am well controlled on meds, IV fluids at home and I am homebound, since I need to be able to lie down when things get too much for me ( and that almost anything on a bad day ). Since I am better controlled I no longer experience these hypoglycemia episodes. I definitely found them more frequent when I was in a flare. I too eat every 2 hours and avoid concentrated sweets, since they cause these attacks for me. I am not sure if this is helpful since I am not diabetic.

@Ashc - this is my all-time favorite song! How did you know that? I have listened to it for many, many years!

@OSucrose - it definitely sounds like it could be an allergic reaction, however a fever does not typically accompany those. The fact that you had a fever is closer to a viral infection. I would get it checked out as soon as possible. Do you have MCAS?

@sunbun - I get a sensation just as you describe when my BP drops suddenly. This is not uncommon when in the shower or getting up fast. Certainly anemia could make this worse. The best thing to do for me when I get this is to get up slowly, rest and hydrate.

@sunbun - my autonomic specialist told me years ago that POT and dysautonomia was now an approved condition that has to be taught in medical school. My daughter had to see a pediatric cardiologist a long time ago who was ancient. He gave me that empty, blinking stare when i mentioned POTS, but the two medical interns in the room nodded their heads when I told him about HPOTS and NET deficiency. So there is definitely a bright light of a lightbulb going off on the horizon!

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.