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Hello @rondo. My symptoms became severe in 2009, when I started fainting at work with sky-high HR and BP. I developed full blown HPOTS but was not diagnosed - or even taken serious - by several cardiologists. The first TTT showed NCS, since I actually fainted. I asked for a referral to a renowned autonomic clinic and had autonomic testing which turned out to be normal. A year later I saw my autonomic specialist who listened to me, looked at all of my testing and told me that I clearly had dysautonomia. He diagnosed me with HPOTS and confirmed the diagnosis with adrenaline testing. If your neurologist is experienced in dysautonomia he/she should be aware that there is no actual proto-type to compare us to. I know people that are disabled from POTS symptoms but may not have tachycardia, or may have fluctuating BP changes. Does that mean they don't have POTS? No, it just means that it takes more than just a few tests to come up with a specific name - other than dysautonomia, autonomic dysfunction or orthostatic intolerance. Remember - our symptoms can come and go, and we can even have normal TTTs or other tests. That does not make the symptoms less real. And even if the tests turn out to be normal - that does not mean the docs have to stop finding a treatment that works. It is a long road to find out what i wrong with us, so be patient and stick with the docs that listen and believe you.

That is good news! Keep in mind that for many of us the dosage may need to be adjusted up or down over time, so dont be surprised if that happens to you!

I have HPOTS and always, every day, have the most energy in the morning. I pretty much jump out of bed and can do light chores until about 10 am, then I fall into a slump lasting the rest of the day. I do believe that in my case this has to do with sympathetic activity, although it seems that the adrenaline wears out my reserves quickly. If I push myself past my limits I go into Fight-and-Flight mode. My theory is that I can benefit from the adrenaline for a while but my body does not process the adrenaline correctly and when the levels become excessive I over-compensate. If I rest and allow my levels to come down slowly then the parasympathetic system takes over and I bottom out. At least that is how I explain it to myself.

@Machair I DEFINITELY become worse depending on the seasons. In the fall my BP usually goes up and I have to increase my calcium channel blocker for the winter. Then, around April or May, my BP drops lower again and I decrease the dosage. Summers are definitely my worst season - I cannot go outside to even sit when it is hot, and even the bright sunlight causes problems for me. Fall however makes me the best version of myself - that is the high point of my year! I contribute these changes to temperature and barometric pressure changes. I have read articles that claim barometric pressure changes will affect the pressure in our vasculature as well as how much oxygen gets carried on the blood cells, so I think that is the reason.

@MikeO keep trying, you are doing a good job. I used to be somewhat confident in the medical community but then turned into a pittbull trying to defend myself. The squeaky wheel ends up with the grease!

Oh Mike, unfortunately it is STILL the same old story, even after all these years of people reporting symptoms and even after getting a ICD 10 code and even after dysautonomia now being taught in medical schools.

@ShupeJL10 do you take saline IVs? I also get home infusions for pots and NSS would not help for long periods. Now I get Lactated Ringers so.ution, which is made up from different electrolytes and keeps the fluid In the vessels for longer. I seem to be stable for up to three days on it, whereas Saline would only help for a day, and I pee most of it out!

@chimeraskeep yes, I get dyspnea whenever I overdo things, not only physically, like walking stairs, but also if I get overly stimulated. My oxygen levels at that time are usually normal, so I don’t think it originates In the lungs. I also usually get chest pain alongside with it, that - I was told by my cardiologist - comes from not enough oxygen reaching the brain and heart from circulatory changes caused by dysautonomia, as well as coronary spasms ( I have prinzmetal angina ). What helps me to stop both symptoms is Leary’s rest until they subside and then take it a bit easier!

@Sarah Tee I became ill with POTS in 2009, and because I did my own research and realized what I have I right away got on a waiting list for an autonomic specialist. I was diagnosed within 2 years, but at that time the average time to diagnosis was 6 years!

Hi All - saw this article on the news this morning A condition called POTS rose after covid, but patients can’t find care (msn.com)

@bblassmith The guanfacine did not really affect my fatigue level but the clonidine made me sooo sleepy, I slept all day long and on the fifth night I became extremely hypertensive while in bed and thought I was going to die. I never took it again after that.

There are three generations of females in my family ( mother, myself and 2 sisters, 6 nieces, 1 cousin ) that are diagnosed with HPOTS. My mother and sisters and I became symptomatic ( to different degrees of severity ) later in life ( I at 42, the others early 50's ). In retrospect we all had symptoms all of our lives but they were always dismissed as anxiety, stress or ( I love this one ) " poor circulation" . My nieces ( in their 20's and 30's ) all have some aspects of POTS but not yet severe. My daughter ( 18 ) also had problems with tachycardia and fainting as well as cold hands and feet all of her life and - although not diagnosed - is believed to have POTS. She does not want to get tested for it yet because she can manage so far with fluids and salt and avoiding long periods of standing. I am originally from germany and my ancestors got displaced during the war, so I am not sure of the ancestral DNA, but we were told that it is either a genetic problem or a missing enzyme/transmitter that causes the dysfunction.

@bblassmith I have HPOTS but absolutely could not tolerate ANY alpha blockers. Clonidine was a horrible experience, and I tried guanfacine ( Tennex ) but it did not seem to do too much for me. I weaned off it slowly without any problems. I have found the best solution in Carvelidol ( beta and some alpha- blocking effects ) and Diltiazem ( Calcium channel blocker ).

@bblassmith They recommend compression hose that is thigh-high, if not waist-high. Yes, I know this feeling! I am exhausted but restless at the same time! I have ADHD and it is quite similar to the restlessness and inattention that comes with that, except the fatigue that occurs at the same time as the restlessness is severe. I explain it to people that it's like pushing on the gas and the brakes at the same time! The meds I am on do help with most POTS symptoms but I find that overstimulation still will bring this feeling on. So I am very much in tune with my body by now, and I rest as soon as I feel even the slightest bit "hyper". It appears to be a part of the "Fight-and-Flight" response that comes with excessive adrenaline.

I am so sorry, that sounds terrible! And several months of this is a long time! Please be careful during this period of healing, and take extra precautions by resting and not overdoing things! Whenever I am in a bad flare and get symptomatic when standing ( I am prone to fainting and seizures ) I make sure I do exercises sitting and lying down, and I get up VERY slowly.

@Knellie My daughter had asthma pretty bad as a child and took Singulair every day for about 4 years. When she was able to stop it we just took her off it and she had zero side effects from stopping. But that does not mean it will be the same for your sister! I would definitely check with the prescribing physician.

@lynnie22 this has happened to me before when they were trying out beta blockers on me. In my case this was because the beta blocker was too strong and we decreased the dose. Then it was not strong enough and we tried a different one that worked ( I tried 4 different beta blockers ). I am also on a calcium channel blocker and do extremely well on it. However - it is not for every type of POTS. Many POTS people suffer from excessively dilated blood vessels, I on the other hand have the opposite - due to too much adrenaline my vessels get constricted and dont relax. A calcium channel blocker works by dilating the vessels.

@RecipeForDisaster I have a little camp stool i bought for 15 dollars and I can easily put that over my shoulder. I can use it to put my legs up, sit down if I unexpectedly end up standing in line ... I also have a seated walker but that one is only for big events, like clothes shopping with my daughter ... 😬

@Sarah Tee I miss appointments all of the time because I am too sick to go. I always get a call before to confirm. My docs know that my illness is unpredictable are usually extremely accommodating. As to numbing shots at the dentist: since I have HPOTS I do not tolerate Epinephrine ( it stimulates adrenaline dumping in me ), so my dentist uses the old-time anesthetic that has no or less epi in it. I tolerate that well. Postural orthostatic tachycardia syndrome: Dental treatment considerations - PubMed (nih.gov)

@Horizons1 Yes, fluctuating ( or labile ) BP can be a symptoms of certain types of POTS, and it happens to me. Generally speaking, a POTS diagnosis calls for an increase in HR of 30 BPM or more within the first 10 minutes of Tilt WITHOUT a dip in BP. With me my HR and BP would shoot up, HR 160 and BP 156/110 and I would pass out. This was caught on several monitors. I also have dips in HR and BP that also cause fainting, but that is another dysautonomia called NCS. HPOTS, which I have, is caused by excessive adrenaline dumping. A dysfunctional ANS will create all kind of Ups and Downs, and depending on the mechanism behind it it can also cause labile BP. What has helped me stabilize the HR and BP are the medications Diltiazem ( calcium channel blocker ) and Carvelidol ( beta blocker ). It took a long time to fine-tune the dosages but today my BP and HR are relatively stable. Of course when a flare is triggered all bets are off, but thankfully flares are not every day! Another thing that has helped me to keep my Vitalsigns stable is to avoid overdoing things both physically and mentally, and assuring that I always have ample rest throughout the day.

@Garden Gal It's all over now, so it's no longer a big deal! Thanks for caring!

@bblassmith Excessive urination can be a symptoms of POTS. I personally do not tolerate oral fluids because they go straight through me and I will actually pee out more than I take in, even when coupled with huge amounts of salt. I also pee excessively when I am stimulated or stressed. So in my case I get infusions of Lactated Ringer solution twice a week, and that has GREATLY improved my symptoms. However - this is rarely done due to the risks associated with permanent IV access. I would definitely discuss this symptoms with your physician. Withholding fluids to avoid getting up to go to the bathroom is probably not a good idea, but then neither is not getting any sleep. Some people on this forum dealt with this problem by drinking large amounts during the day and then drinking several glasses of water right before getting up in the morning. They keep water at the bedside so they can drink it first thing, and that helps them not get dizzy in the morning when getting up, and to counteract not drinking fluids at night.

@bblassmith yes, what you describe sounds common for POTS. Whenever I become excited for any reason, or I overdo physical activity ( like climbing stairs etc ) my heart starts to beat faster and harder, and I get chest pains and often also become short of breath. In the beginning of my illness this would often lead to fainting and even seizures. I have found that - in addition to taking my medication combo - following a delicate balance of activity and rest helps to minimize these symptoms. However - for me the calcium channel blocker Diltiazem along with the beta blocker Carvelidol have greatly reduced these symptoms ( as long as I live within my limits ). Are you following the usually recommended treatments of increasing fluid and salt intake, and are you wearing compression hose? Compression garments especially are helpful with the tachycardia and strong heart beats.

@98rabbit Welcome to this forum! I am sorry you are having such a hard time. I am very familiar with what you describe. I have Hyperadrenergic POTS, meaning the mechanism behind my symptoms is uncontrolled adrenaline dumping. This causes symptoms like you describe, tachycardia, chest pain, BP changes, tremors, palpitations, cold hands and feet ... and of course anxiety. It is quite common to be labeled as having anxiety when we experience these symptoms, but I was assessed by a neuro-psychologist twice and she said I am low on the anxiety scale. I was told that the symptoms and the high adrenaline naturally CAUSE anxiety - not the other way around, that the anxiety causes the symptoms. What I do to minimize the symptoms - in addition to the usual treatments and taking my meds - is to avoid overstimulation. I am active around the house but take a lot of rest periods to keep the ANS calm. I have had POTS for a very long time, so by now I can tell what my body needs and when. This has helped the anxiety as well. When in a stressful time, when I cannot rest whenever I want, I have a prescription for low dose ativan. That helps me stay calm, but I take it rarely. For example - I am moving right now, so at times I get overwhelmed both physically and mentally. So my doctor told me to take the Ativan twice a day until I am settled in. It really helps me a lot. I also was prescribed a SSRI for the POTS symptoms, and have been taking that for many years with good effects. It also seems to help balance the neurotransmitters and to some degree the flares. There are many ways to calm ourselves down, deep breathing techniques are an example. This article may be helpful:

Have you considered changing the time you do your work outs? Have you considered if maybe it is any meds you take that might cause the dry mouth? There are also gums, lozenges and medications you can take for dry mouth, even natural OTC ones ( I have not personally had the need to try any of them ).