yogini

POTS is defined by just an increase in HR of 30 points or more. There doesn't need to be a change of or decrease in blood pressure. When I first got sick I found it helpful to keep a journal of my BP and HR at various times in the day. Also checked my pulse walking around. Once you connect with a dysautonomia doctor that information will be helpful for them to see.

I think this is frustrating but change is going to take time. Like a LOT of time. In 15 years of having dysautonomia, awareness has actually increased dramatically and there are many more doctors and resources now than there used to be. It is like night and day compared fo what it used fo be. I am sure as the word continues to spread things will improve even more in the long run. In the meanwhile, as a patient it is hard to work with doctors who don’t understand and aren’t interested. When that happens to me, I just move onto the next.

Even if the wait is long, a dysautonomia specialist is the best person to diagnose you through a tilt table test. Most doctors have a waiting list and you can get in if they have a cancellation. In the meanwhile, checking your HR and BP at home can give you a sense of whether you have dysautonomia.

Hi are you able to connect with a dysautonomia specialist on the Dinet list of doctors? Did you get a tilt table test? To be honest your story didn’t sound like dysautonomia to me til I got to the end. The off balance and heart racing when waiting in line at grocery store sounds just like dysautonomia. Do you have a heart rate watch and blood pressure monitor so that you can take measurements at home, sitting and standing?

There are many studies which talk about the negative impact of salt but unless these are done specifically on dysautonomia patients, I don’t worry about them at all. We are a totally different group that don’t get enough blood to our brains and other organs. Many of us find that salt intake improves our bodily function and brings it closer to normal. The longstanding advice from medical doctors who specialize in dysautonomia is that increase salt can be an effective treatment with minimal risks.

Being sensitive to various smells is a common symptom of POTS/dysautonomia but I think most of us experience a POTS flare. So I get dizzy, headache, fast heart rate, nausea etc. If it feels more like an asthma attack that could be an allergic reaction and makes sense to tell your dr about sooner rather than later.

When first starting out is common to feel confused, scared, and feel worried about worse. A lot of the symptoms you describe seem typical for POTS or other forms of dysautonomia and don't necessarily mean you have MSA. I don't know much about MSA but it is not nearly as common and more severe. If you can work and do things - that puts you in much better shape than many people with POTS. I would encourage you to stay active and not worry about getting worse. Most people don't get worse - they usually improve over time and improve further the right treatment. To ease your mind it might make sense to get an appointment with a dysautonmia specialist (there are doctors listed on the site) who can perform tests and advise you if you have MSA.

Hope the high BP calms down. I used to keep a diary of my BP 3 times/day. You could do that and then decide whether you still need the appointment. I liked AntiGravity yoga because you can do inversions for a long time using up very little energy. But if you’re a barre instructor you prob don’t need the help I do! 😛

Many people have a hard time in the morning and generally start to feel better in the evening. I think it might be because we push fluids all day and we are better hydrated by the time evening rolls around. Then at night, we don't drink and wake up dehydrated in the am. When I was most sick, I used to drink a cup of broth in the evening followed by a couple glasses of water. Then did the same thing each morning and that made a big difference in getting my day started.

Many people find it is easier to eat smaller amounts more frequently. For me I have a harder time eating earlier in the day but a big dinner is fine, maybe because I fluid load during the day.

Though I was not as restricted as above, I am used to staying home by choice and did this for long periods as needed - and I think most people with dysautonomia are. It's kinda funny to see people freaking out and being upset about not being able do to thinks like go to the movies. I probably didn't do that for years because I didn't feel up to it. There are probably many things I will skip doing for a long time even after things open - because getting any kind of illness or virus risks re-triggering dysautonomia. Unless there is a vaccine or a way to be comfortable I won't get sick it probably isn't worth it to me.

Thank you for all you are doing to help others at this time! I can understand why you are feeling stress which might affect your BP! Dysautonomia means dysregulation of the autonomic nervous system. The body has a hard time controlling BP, which means you could have high BP or low at any time and many of us have fluctuated between the two. The most common is probably to have consistently low BP but there are people with high BP and people that fluctuate between low and high. Some people have a sudden onset followed by low BP and then the body recovers over time. If your body recovers and can keep up BP on its own, you may no longer need the meds keeping up your blood pressure. That is another common explanation for the change, and people often have to stop or adjust their meds when that happens. It may make sense to double check with your specialist even if by phone. They can advise whether it makes sense to take any BP meds at all if you have high BP. Your doctor can also let you know whether it is safe to experiment. I took midodrine and was told it could be taken as needed (unlike some other medications where it can be dangerous to miss a dose). So if your doctor agrees you can try not taking it for a couple of days to see how you feel. and then restart if that doesn't work, or just take as needed on days when BP is low.

Check with your doctor but it shouldn’t be caused by compression stockings as long as you use the muscles. If you walk and/or exercise the muscle should not atrophy.

Sorry to hear you are having a hard time recovering. I live in New York City and have been totally at home for about 6 weeks - except for maybe 3-4 trips to grocery store/pharmacy. I think I may have gotten COVID about 2 weeks ago with only two symptoms: fever (mostly under 100 except one day of 101) and complete loss of smell and taste starting a day or two after I first got the fever. The smell and taste are starting to come back now. I didn't bother to get tested - they are recommending that for people with secure cases - but hope to get an antibody test in the coming weeks as soon as they are available. No POTS flare during this time, other than feeling slight tachycardia and forceful heartbeats.

I don't get seizures but this happens to me but it's for a few seconds, not a few minutes. I do agree that a lot of dysautonomia is what it is - weird scary symptoms with no explanation of why they are happening. But I agree with Pistol. Call your dr. A lot of doctors are doing video calls at this time and maybe it will be reassuring to connect.

Thank you!

This happens to me often though not sure it lasts for a minute. Maybe 30 seconds or so.

For people with dysautonomia alone, I think it could be a longer recovery both from dysautononmia (which could flare up) and coronavirus. But a lot of people here have other conditions. Hope everyone stays safe.

I have read that doctors are hesitant to use saline as a long term treatment. I don't think it's because it's addictive, it's because it isn't good for the veins as you mention - even in a person without EDS. I think the challenge is that you can't retain fluids because of gastroparesis. Have you looked into mediations which help retain water?

In New York there are a few confirmed cases, but out of the millions of people here think it's probably unlikely that i'd run into someone that has it and you have to come into close contact to get it.

Ive had severe swaying back and forth as my worst symptom. I remember how very hard that was and I really feel for you. I felt like the ground was moving up and down underneath me, but I could still walk slowly and straight. I never fell over (or felt like I would fall) or leaned to one side. To be safe it might make sense to get tested some other conditions that affect balance, like inner ear conditions. Some on this forum have the misfortune of having both inner ear and dysautonomia - maybe there is a treatment outside of dysautonomia which would help you.

Ihad severe POTS following a virus and now I am better and don't take any medicines. But when I get my period or I am stressed out at work I still get POTS symptoms,. Stress and lack of sleep make things much worse. But certainly what you are experiencing could be from your allergies and not dysautonomia. Did you ask your doctor what he or she thinks?

There are only a handful of doctors in the US who are experts in dysautonomia. Many of us wind up working with our local doctors - who know a little or nothing at all - and reading literature to figure out which treatments to try.

There is an organization called Dysautonomia International - maybe you'd be able to find a physician on their list. If you can't find a specialist in your area I'd try to see an electrophysiologist (cardiologist specializing in heart rhythm). They would generally know how to treat sinus tachycardia. If you can find a good one and get them literature about dysautonomia they might be able to help. I live in New York City. That is the approach I took since there isn't a good specialist here either.

When you walk your legs pump blood through your body so that may help relieve some of the burden on your heart. Your experience is not unusual.