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@MikeO - I have both HPOTS and NCS, so I suffer from both high and low BP's as well as orthostatic tachycardia. When my BP drops I faint, but sometimes in response to the drop in BP the sympathetic ANS suddenly kicks in to overcompensate and all the vessels constrict, in response to a dumping of adrenaline. When this happens too fast there is no circulation to the brain and I have seizures. To me I cannot tell the difference, except the next day when my body hurts from the seizing. Most witnesses tell me that it looks just like a Grand Mal seizures, and that my back arches severely. I had an ILR for 3 years and many of these episodes were caught - always just showing sinus tachycardia, up to 170 BPM. I also would have seizures during surgeries and minor procedures, always monitored - tachycardia. But in most cases the BP would spike after a sudden drop. Thankfully with my current treatment I have not had an episode in over a year, but I have to work at it, especially during flares. You mentioned that your latest episodes happended after you stood in one place for too long: that is a NO-NO! I cannot stand for long, and if I have to I usually feel the typical signs of presyncope and either sit down or kneel on the floor right away in order to stop it from going all the way. But the most important thing I do is to avoid standing all together! I use a wheel chair when needed ( stores, hospitals etc ), a walker with a seat and I have a bar stool at home for cooking or standing at the counter. The best advice I can give you is to avoid standing and to listen to your body. Once you can tell the earliest symptoms you need to sit or lie down. It was explained to me that The difficulty breathing happens when it is already too late - there is not enough circulation in the chest ( dont worry, not like in a heart attack ). For me there is always heaviness in the legs first, then lightheadedness with a slight change in vision and hearing, my hands and feet get ice cold and then I pass out. So when I feel the heaviness in the legs I sit, no matter, where I am. Try to find out the first sign and sit - that is the only way I know how to prevent these episodes. I also barely ever go to places where standing might be required, unless - as I already said - I have my wheel chair with me.

@sunbun - yes, I used to get tachy/brady days. And palpitation days. I still dont understadn why but certain days HR would run low, others fast. My PCP stated once that it all depends on the autonomic tone. With the help of Carvelidol, Diltiazem and IV fluids both HR and BP are pretty stable for me now, for several years. Well - of course with exceptions ... I hope they will be able to find the right meds for you, I know how disconcerting these swings can be!

Been there, seen that, @cmep37! Nonsense - it's what the docs say when they are at wits end and how dare the patient not respond to what THEY thought would help? If their treatment does not help than it is the patients fault? Another sign that this doctor has no clue about dysautonomia or how it works. Obviously he does not know the symptoms! You qualify once the BPM goes above 30 within 10 minutes of standing. You qualify! If HE thinks your symptoms are YOUR fault because YOU do not respond to HIS recommendations - you need to see someone else, IMO! My sister in Germany has POTS and cannot find anyone to help her with her POTS ( we have a genetic type of HPOTS that runs in the family ). She has seen the autonomic specialist that I see in the US ( where I live ) and she has gotten very good treatment recommendations, and her PCP in germany has had telemedicine visits along with her with the specialist. They all had very good results, because they are willing to work together. Well. IMO the only one who seems to be refusing anything is the doctor - he seems to be refusing to listen to you! And that means he is not doing his job! Please dont waste your precious energy on screaming about this doctor! Instead, take a deep breath and have a cuppa!

Hello @Pattie, welcome to this forum! -- The symptoms you describe could be related to normal aging, hormonal influences as well as POTS. It is a good idea to get evaluated by a cardiologist because in order to determine what exactly the problem is you would have to have several tests. POTS runs in my family and we all developed the most severe symptoms in our 50's although we had symptoms all of our lives.

@MTRJ75 - while I fully agree with the statement that our symptoms are individual and not the same each day I have to disagree with the TTT. Yes, TTT's can be inaccurate, however - they will confirm the presence of ORTHOSTATIC symptoms, which are the main symptoms in Postural ORTHOSTATIC tachycardia syndrome. Most dysautonomias will cause certain orthostatic abnormalities, such as POTS, NCS, OH ... all of these CAN be detected with a TTT.

@Bailee - yes, I suffer greatly from nausea when in a flare. What helps me is Zofran ( a medication for nausea that I take as needed ) and - as @MikeO mentions - eating several small snacks a day rather than 3 meals.

Hello @Loading, welcome to this forum! I too had normal autonomic reflex testing but a positive TTT, and later was diagnosed with HPOTS by my autonomic specialist. I am aware of several people on this forum who are very ill with POTS but have normal reflex testing. One theory is that our symptoms get triggered but autonomic reflex testing may not set off the triggers. Regarding the Ibuprofen - what was the reason you took it? Maybe the symptoms you experienced where more caused by the reason you took it, rather than caused by it? Also - flushing and watery eyes can be a symptom of allergies. Have you checked with your doctor? POTS symptoms are very individual, which makes it so difficult to treat. Most patients share the orthostatic symptoms, but everything else can vary a lot. A reason for this is that there are so many CAUSES of it - EDS, MCAS, SFN, genetic abnormalities, neurotransmitter imbalances ... all of these will cause POTS symptoms but also symptoms particular to the condition that causes the POTS. Identifying and treating symptoms is what helps, there is no blanket treatment as in "One-size-fits-all".

So sorry, @KiminOrlando! Wishing you better days ahead!

@cmep37 - your information is very helpful, but i am so sorry that you are so very disabled by POTS! I too developed HPOTS in my early 40's but in hindsight realized that I had it since early teens but learned to compensate and cope with it. What caused the symptoms to worsen was the birth of my daughter. I agree that POTS caused by EDS likely will not improve over time like other types of POTS because of the hyper-elasticity of the vessels caused by EDS. But I also agree with your statement that it is possible to control some symptoms with medication and lifestyle changes. Good point - have you asked this question to your rheumatologist or physician? Since I also am disabled by POTS, and rely heavily on the help from my husband, I totally understand your concern about the possibility of one day having to manage on your own. If or when this happens to me I will have ample support from friends and neighbors, but that is not the case for all of us. Here in the US there are resources to draw from in cases of not being able to manage on your own, like meals delivered or - in same cases, and depending on the insurance plan - caretakers coming to the house to help with cleaning etc. One thing I know is that if I end up alone I will have to move, since taking care of a house would be impossible. So I would have to move to a small appartment and closer to town than I live now. I sincerely wish you the best!

@MikeO - doctors use this term frequently when describing test results like EKG or xrays. It means that there MAY have been or were pauses or abnormalities but type or length are not important. For example: whenever you have a premature beat it is followed by a short pause, for the heart to resume the normal rhythm. Theoretically this could be interpreted as a pause but is of no consequence. So in that scenario the interpreting physician would use the term " no significant pause ". Same if there were sinus tachycardia or premature beats - both considered harmless, it would say "no significant abnormalities". It should be reassuring rather than worrying!

@MikeO - I have a recipe for you for my mons german goulash. I will make it today for company, despite the fact that I am not very well currently, but it is great because it takes hours to simmer but not a lot of actual work! So here it is: - 2-3 lbs beef cubes ( I use bottom round, cut up ) - 2 onions, diced -3 green peppers, diced - lots ( I mean LOADS ) of crushed garlic cloves - Tomato paste - Salt, Pepper, Smoked Paprika, cayenne pepper, Cumin, coriander Brown beef in olive oil, remove from pot, sautee onions and peppers. When they start to brown and stick to the pan add meat back in, add garlic, sautee for one minute. Turn down heat, add 2 tablespoons Tomatopaste. Add 2 cups water, turn heat to simmer and let cook, uncovered. Stir occasionally to prevent burning. Add seasonings to your taste, but go heavy on the paprika. When water gets low add another cup or two, and keep cooking until meat is tender and veggies have cooked into a sauce. After about 2 1/2 or 3 hours of low simmering it should be done. Thicken with corn starch slurry. Serve over egg noodles, mashed potatoes or rice. I also serve home made onion bread with it, to sop up the delicious gravy! You can also make this in the insta pot, but its way better on the stove!

The only thing I can do when I get that unstable is to stay home, mostly in bed except for hourly strolls through the house - I call them my orthostatic rounds. When I get to where I am not sure whether I will pass out or not I just have to bite the bullet and give in - meaning I have to stay safe and avoid any potential episodes. I believe this is the second time you posted about passing out in your work area - apparently not a safe place for you to be right now? Please be careful and take a rest until your symptoms improve, I would hate to see you get hurt again.

Sorry @MikeO about yet another episode! I hope you did not get hurt? Thankfully the ILR caught it. When I had an ILR there were many fainting and seizure episodes caught, but they never showed anything but tachycardia.

@Delta @Knellie - thank you! I am glad my "musings" are helpful. Thank you for the well wishes, they are appreciated!

@cmep37 🤗☺️

@MTRJ75 - it's funny you would say that, because that is what happened to me! When I was really ill, dealing with high fevers, pain and breathing issues , it was almost as if POTS did not exist! My sister, who also has POTS, said that when the body is in survival mode it deals with the most important things, and nothing else, and that POTS will show up when the illness is gone and I am recovering. I did not really think that would happen - why would the body work better when so sick, only to return to being uncontrolled when all is better? But she was right, and that is exactly what happened - the illness(es) are gone, the body is recovering and POTS returned. It is a peculiar thing, this body of ours!

Awh @Heartbroken - I wish you were my neighbor too, because I could just see us having a cup of tea and some of your cake! Thanks for your well wishes, I am thinking of you!

Thank you, @MikeO, I so appreciate your well wishes! I am sure that in time all will get back to the POTS normal ( whatever that is ... )

I have spent most of the past 2 months in hospital recovering from several serious health issues, including COVID and sepsis. All throughout this POTS was well behaved, and I had no significant symptoms other than increased HR and fatigue. Now I am home on IV antibiotics and feeling much better, finally considering to go back to trying exercising on my rowing machine or take a daily short stroll outside when - BAM!!!! POTS rears its ugly head! It has been so long since I lived through a real flare that I am almost caught by surprise, and I forgot how frustrating it is to be so helpless after having found control over the symptoms! Here is what I do to get past the flare as soon as possible ( hoping to, at least 😞 1) For hospital induced deconditioning I do exercises in bed as well as get up every hour, and I try to exercise while doing dishes ( if able ) etc. Rowing machine is yet out of the question, so I concentrate on abs and legs, since they are essential in aiding with orthostatic tolerance. But if something seems to be too much I don;t do it - it is so easy to drain a little spurt of energy on exercise when we could use it on ourselves or family! 2) Talking on the phone, reading, doing bills, listening to family ... this is all as draining as doing dishes. I try to avoid it and try to find activities that GIVE me energy, like knitting or simply sitting on the porch listening to birds. 3) Of course drinking fluids and eating healthy, every 2 hours rather 3 big meals. I find herbal teas to be both enjoyable and hydrating. Lots of fruits and vegetables, although during flares I seem to crave protein. 4) I do not stress over the fact that I am not currently able to leave the house - church, stores, post office, even dental visits or hairdresser - they will have to wait. Unless it is an important doctor visit that cannot be made a telehealth visit I don't do it until I feel better. And thankfully I have my husband who drives me anywhere I need to go, since driving would be impossible for me to do in my current state. 5) I give myself permission to feel sorry for myself. Enduring the limits of a flare is really disappointing, depressing and frustrating. Despite the fact that I am a seasoned POTS veteran and lived through flares many times ( and improved after each one ) I still find myself impatient with the slow progress and expecting more than I should each day. Then I feel down and sorry for myself. If stuck in this mood I could easily sink into a depression, but thankfully I have sisters and friends that lend me a half-open ear to listen to my whining .. and letting it out instead of allowing it to fester is vey healthy. And the most important thing I do is to remind those around me that I will need time, and that - since there is nothing wrong with their hands and feet - they will have to cook their own food and do their own dishes for a while. I will often retreat to my bedroom with a lit candle and heavenly quiet while the family banters in the kitchen. Eventually - and very slowly - strength and endurance will return, and Life will go back to normal. Until then I will be gentle to my body, patient with my mind and grateful to my spirit!

@CallieAndToby22 - when my SNS goes into overdrive during flares ( like it does right now after having had several serious health issues ) I cannot sleep more than a few hours at night, leaving me wired on adrenaline and exhausted each day. What helps me is this regime: Ativan 0.5 mg at bedtime one day, half of a Cyclobenzaprine ( muscle relaxer, I have tense muscles from the excess adrenaline ) the next night, and occasionally Benadryl the third night. If I do this a few days or a week I often am well enough to attempt sleeping without medication. Also - my autonomic specialist recommends melatonin, since it is also a neurotransmitter. It does not really put me to sleep but it is supposed to help. Some patients do well with just the melatonin

@CallieAndToby22 - when I had severe problems with adrenaline surges, and couldn't sleep or rest, I taught myself to meditate. What had helped me was a white noise tape ( to cut back on distracting background noise ) and simply concentrating on my breathing. It took several attempts, but eventually I could get myself into a state of relaxation and even peacefulness. It is hard to turn off our internal dialogue ( thoughts etc ) when we have never done it before, but it is absolutely possible. Another really helpful trick that works for me is to sit with both feet on the ground, hands resting loosely in lap, and imagining that you are a tree trunk and your feet are your roots, and that you are soaking up energy from the ground. This sounds odd, but if you try it ( no one there to make fun of you! ) you will be surprised how relaxing it is! What helps me also is to light a candle or two and drop some essential oil of lavender onto some lava beads.

@MikeO - in my case I did not really respond that well to the Amlodipine and I was switched to Diltiazem, which worked much better for me. I also was on Pyridostigmine for a while, I don;t remember why it was stopped. I think it just didn't help. My sister, who also has autonomic dysfunction with high BP, saw an improvement in her bowel habits while on it. But in the end she did not tolerate the CCB and now is off the CCB and the Pyridostigmine. It all boils down to having to try whatever med there is to try - we cannot tell if something works without trying. And since it often is impossible to pinpoint the exact mechanism behind our POTS symptoms determining our response to medication is how we can determine the cause of the dysautonomia. I know the process of finding the right medication is frustrating, for both us and the doctors. but it is an important process, and in my case I have found the right meds, after many years of trying. So hang in there, Mike! You have to sift through a lot of dirt to find the gold nugget!

hello @My Journey - yes, I know of many dysautonomia patients that had symptoms since childhood. POTS has many causes, and each one is unique. But most of them are based on a malfunction that is a compensation mechanism to some type of underlying condition, like EDS ( which causes stretchy vessels ) or - as in my case - a genetic abnormality. Many patients realize the presence of symptoms all of their life in hindsight, they just always compensated for them and didn;t even know it was something abnormal. Three generations of females are affected by this condition in my family, all of us had symptoms since childhood but did not become severely symptomatic until we were in our 40s and 50s. I "gave out" at 42, my mother and sisters in their early 50's. My nieces - ranging from early 20's to late 30's - all have symptoms of POTS but they mostly are managing, except for flares here and there. So - yes, in many cases POTS is present in childhood, and may even be present at birth, depending in the mechanism that causes the dysautonomia.

Oh @RecipeForDisaster - that rings so true! It's why we call it the invisible illness. It is very difficult to explain why I use a wheelchair IF I go into a store ( which can only happen on the best of days ) when I look like a million bucks! The only reason I was taken serious at all in the beginning of my illness was because I had seizures and fainting frequently, otherwise everybody would have labeled me as mentally ill. Same here. In the first year of POTS I went to an autonomic center for diagnosis and they said that based on autonomic resting I was completely fine ( despite a previous TTT that showed NCS ). Later I saw my autonomic specialist and was finally diagnosed with HPOTS, based on neurotransmitter levels and symptoms. Dysautonomia is so vague and there are o many open questions that even the experts run out of explanations! This is the very treatment that saved me. I get the LR ( proven to be more effective for me than NSS ) 2-3 times a week, need to run ot slowly for optimal effect. Only with the IV fluids have I been able to have a life at all and have been seizure and faint free for over a year.

Well- that is the meaning of having immunity. I don;t know why that would be meaningless - it is HOW immunity WORKS!