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.

8 hours ago, Pistol said:

I saw my local cardiologist for a follow-up this week. Although not my autonomic specialist he is involved in my dysautonomia care and is knowledgeable in it, he sees other dysautonomia patients as well. He is kind, patient and willing to educate himself about POTS ( which is a rare gem of a doc!!! ).

Well - he told me that in the community of his peers ( it is a University Medical Center ) a vast majority of physicians actually refuse to treat POTS patients. He states that when the subject comes up in Seminars or academic meetings they leave the room or zone out. He claims this is because the mechanism of dysautonomia is not merely a cardiac issue but rather affects the entire body ; therefore they do not feel that it is a condition that they should be consulted for.  He also states that many of them encounter patients that claim to have dysautonomia but do not and will not take no for an answer.  I guess that explains why so many of us are told to take a beta blocker and get out 😠! I have encountered many physicians that still dismiss dysautonomia and this is hugely based on their being uneducated regarding this disorder. There are too many of them that have stated to me that "they have an opinion" about it and do not consider it a real affliction. 

I have called several major medical institutions in my state and also sent emails demanding this situation to change - admittedly with very little effect. My 15 year old daughter has developed POTS symptoms ( HPOTS runs in all females in my family for 3 generations ) and I WILL NOT put her through what most of us had to endure. Luckily I have support from my autonomic specialist and he guides me in her treatment. Most other people are not that lucky. I encourage everyone experiencing dysautonomia symptoms to educate themselves, be proactive and challenge these physicians by standing up to them with knowledge. When seeing a new doctor it is important to have a list with Vital signs ( best a series of orthostatic sets ), all of the symptoms we experience and questions regarding these findings. If they feel qualified to dismiss all of these facts then they should also be able to explain them to us. I personally would not accept simply a prescription for a beta blocker and a 6-12 months follow -up. We deserve to either be taken serious and treated or he/she should refer us to a more educated specialist ( which many do not do b/c it would require them to admit their failure to be able to tackle dysautonomia ). 

We deserve better !!!!!!11

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. 

53 minutes ago, Sam10 said:

yeah I have tried a couple locally but their wait time is rediculous ! the earliest at the moment I can get is August of this year. to summarise symptoms

-constant fatigue

-insomnia

-ectopic beats daily

-racing heart sporadically when standing (not all the time but definitely random)

-I have had 3 incidents kown at work when in a long conversation with someone I get very dizzy and have to stop talking to a minute or 2 before things get back to normal

-things are always worse after eating. ectopic beats and fatigue specially.

all my tests keep showing normal ! including

head MRI

chest ct

abdominal CT

heart echo

heart stress echo

24 hour Holter

cardiac MRI

either I believe the doctors that I'm going nuts or this has to be some sort of autonomina imbalance of some sort

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.

On 5/8/2020 at 4:50 AM, Sam10 said:

Hi, 

As the title suggests, I'm in need of urgent help. For over a year now my life has been turned upside down and no one has any answers for me. in Aug last year I came back from  holiday from Fiji with the family. Whilst the holiday was great and I felt great, within 3 days of returning my life turned to crap ! I start feeling very fatigued and tired initially. I could barely stay awake. I've had weird bowel habits also... whilst I'm normally constipated, I came back to going to the bathroom once or twice a day for over a few month non stop which is unusual for me. I had all the blood work done, a chest CT, abdominal CT, stool tests and many GP vists. No infection was found however my CRP was slightly elevated. It eventually returned to normal. Since then things progressively got worse. I was in line a few time whilst shopping and my heart rate raced to the point where I have felt like I would pass out. As soon as I started walking again it would gradually reduce. I started to get palpitation and a 24 hour monitor showed over 1500 ectopic beats ! further heart testing showed a structurally normal heart, the doctors sent me on my way ! I've now lived with these palpitations, fatigue, very funny high and slow heart rates for month's now and no on has an answer me ! all the test reports show nothing is physically wrong. My legs at night burn to he point I have had to put an ice pack on them to sleep and my sleep patterns haven't been great either.  I'm still working and have good days and bad days. I'm still able to excercise if If I really push myself but there is nothing enjoyable about this existence ! the fatigue and palpitations are horrible !  My research has led me to believe this could be some kind of autonomic disorder, maybe not POTS, but something weird is going on ! I feel like I'm just out of balance. Does anyone have any advice on how to proceed from here ? The doctors have tried to throw beta blockers at me and whilst they do help the palpitations they make the fatigue worse. Does anyone have any advice on what I can do from here ! I feel like I'm doomed to live like this forever and its really sending me into depression.

Thank you

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.

14 hours ago, JFreeer said:

Thank you @yogini

I did go off the Midodrine per my PCP and will use it as PRN.

Its too bad I had to stop working because the hydration in the morning was too much before my shift with the high bp after going back for 4 days.

Iḿ going to try to go back in another 4 weeks.

I have a potential virtual appointment with a dysautonomia specialist in Amherst, Ma,but Iḿ concerned because she does not take insurance so its going to be an big OOP expense.  Iḿ weighing the pros and cons to this and will keep researching.

I see you do anti gravity yoga and will have to look that up.

Before this happened in January I was a Barre teacher which is a fusion of ballet, yoga and pilates.

Stay safe and Thank you!

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! 😛

1 hour ago, judyinthesky said:

Yes! This is totally the case for me, in the morning it is harder. But it is because I also have constant agitation that comes with this. I am suspecting some nerve involvement with my gastro issues. 

Yes, I eat small amounts already and more at night, hihi. I wonder why that is??

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.   

On 3/25/2020 at 6:30 AM, Pistol said:

So, with social distancing we now have a very accurate way to explain what POTS is like to people who have no clue: 

- we cannot leave the house, unless it is for necessary things such as food or doctors. 

- we cannot exercise unless it is something we can do in our home. 

- we often need to retreat to a quiet room to calm down ( due to simple things as conversations or other "stimulating" activities ). 

- dealing with the family can be overwhelming and stressful ( sad to say but true ). 

- there is only so much we can do to combat inactivity and boredom. 

- it is easy to become irritated at simple things and lash out at others

- monopoly can cause our BP to spike 

What other examples have you encountered?

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. 

On 4/25/2020 at 7:15 PM, JFreeer said:

Hi Everyone, 

hope you are safe. 
I was diagnosed and sent to the ER with high bp and high heart rate. 
About a week after that is when my low bp became a problem. It lasted 2-3 months. 
i was on Midodrine and high salt diet. 
I am weaned down to 2.5 mg of Midodrine in am. I was up to 7.5 3 times a day. 
I have gone back to work and my early shift combined with stress put me in to a high bp last week (140/100), While my HR was on the lower side(70’s with activity, it usually goes in to the 90’s with walking). I am a Respiratory Therapist at a Hospital in CT in the surge of Covid. 
my pcp recommendation was to go off Midodrine and reduce stress, lol. 
I don’t understand this disease. Do you often go high and low? If you are running higher should I cut out the high salt diet , compression hose and black licorice root? How often should I take my bp? 

one interesting thing was that I took a Tylenol when my bp was high and it made me feel better so I may keep those handy. 

Because I was diagnosed in this Covid pandemic I haven’t been able to get to a Dysautonomia specialist. 
I also don’t understand if I am coming out of a flare up or going in to a new one and what my new baseline looks like? 
Basically I can’t rely on my body  it’s one day at a time but that makes life hard(especially mornings). 
Any ideas I appreciate, and I know it’s not official medical advice. 
 

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.  

On 4/20/2020 at 8:23 PM, Hippopotsamus said:

I wanted to share my experience. I am recovering from presumed Covid infection. I was hospitalized for 4 nights for shortness of breath. Tested negative (however MDs believe it was a false negative- up to 30% tests may be false negatives I was told). I was off all POTS meds and was only struggling with some daily fatigue before infection but this brought back all of my symptoms full blown. It has been about 4 and a half weeks since the hospitalization. First 3 weeks were real struggle. It’s hard to feel so sick and have to be isolated. Thankful for having an area of my house I could quarantine and a nice husband who would slide food in the door and run. And for a sense of peace and strength that I can only say that God provided. But I have been off all inhalers for a week now, breathing much better, and able to sleep without being totally propped up anymore. But man this thing throws your nervous system for a loop. I am still very limited, can’t stand for more than a couple minutes, activity is miserable. But seeing small improvements week to week. So as scary as all of this is, and as frustrating as these setbacks are, I wanted to encourage anyone else out there who gets infected that recovery might be slow but each week better than the last in small ways. I’m an “essential worker” and a bit worried about my job status/future if it takes me a couple months to get back on my feet (literally). Also in the past when I first got POTS and had so many totally bizarre and scary symptoms I remembered that it felt so strange that the world around me was still the same but I was struggling so much. This time with my recovery it feels like everyone is dealing with something strange and uncertain too. I just hope and pray that I can get to a level of functionality that I can take care of my kids & spouse if he ever became ill. It just blows my mind that so many people can be infected and never develop or only have mild symptoms. We live in a relatively densely populated area of the US and hoping to see some plateau or decline in cases soon. 

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.

On 3/9/2020 at 2:22 PM, KiminOrlando said:

I don't think dysautonomia is a significant complication to Coronavirus. It will be a pain, just like when we get the flu and it will take a month to get over, but personally, I don't see dysautonomia alone as a higher risk for mortality. 

 

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.

4 hours ago, Scout said:

Hi folks.

I hope everyone had a nice Christmas and New Year! The holidays are so hard for us potsies, but I hope you're recovering well and were able to at least have some fun. 

Also, I just have a question regarding balance: 

Do many of you have issues with walking straight and keeping yourself upright easily?

I've had this happen for a few years, but it's gotten so much worse, where I'll get up and go to walk, and simply fall over, or, my muscles just won't work and I'll lean dramatically to one side and try and balance myself out, if that makes sense?

It honestly feels like, a lot of the time, my body doesn't know which was is up and my muscle memory doesn't work right. That's how it feels, at least. 

 

 

 

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.

9 hours ago, WanderWonder said:

I've noticed that when I sleep well - my O2 meter doesn't dip up and down, and I don't have any sleep disturbances. I wake up feeling refreshed - my heart rate is steady when I stand up.

However when I have trouble breathing while sleeping and toss and turn throughout the night, that's when in the day my body feels more stressed, tired, and I get the POTS symptoms - heart rate shoots up when I stand.

I've read that people with POTS are more susceptible to poor sleep and stress. For me it's the other way around: I think I've figured out that my poor sleep and stress has to do with nighttime allergies, which then leads to POTS? I'm not sure if I really have POTS then, or something else.

Anyone have any experience with that?

 

 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?

3 hours ago, kisekis said:

Thank you for replying.

 

How come.. i thought US med system is the most advanced?

I just realized i didnt explain it better and might cause a misunderstanding. I actually want to find specialist in pots, mcas, and other connected issues. Cause i have symptoms. But theres none here.

 

Ive tried asking about pots here but no luck been to electrophysiologist. But they still couldnt find the cause.

 

anyway,

Ive check pots uk, dysautonomia international. But none listed here&it seems only doctor sanjay gupta is available for online consultation?

I read about doctor nicholas gall, he posted thing that match my case. But he didnt seem to accept online consultation

I might have to look it up more detail. Or email.

 

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.  

13 hours ago, kisekis said:

Does anyone know any experience/knowledge of crowdmed(medical detective)or other doctor online consultation service?

 

Im so desperate of the med system around me.(southeast asia. theres no POTS, EDS, CFS, MCAS specialist) But im very far from the US. If at least theres a credible online consultation where i can get helpful inputs from doctor it would be good.

 

I read about cardiologist sanjay gupta but i dont know if hes experienced/credible/expert?

 

My main issue is heart.(heart jumping out, hypersensitivity, intolerances)

Diagnosis: autoimmune(jo1 positive, pcna borderline), PAC sinus tachycardia, chronic tetany,  ibs,endometriosis(recently).

 

Suspicion: eds, autonomic issue, mcas, hormonal, gut issues, apnea.

 

I have many weird symptoms but didnt get detected/treated. Im disabled by it I get no help for >17 years, since around age 10-11(around first period)

 

Ive read about online doctor consultation but still couldnt decide/find which credible&more suited for my case.

 

Thanks for people who take the time to answer 

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. 

1 hour ago, WanderWonder said:

I've been forcing myself to continue exercising even though I feel tired. Strangely enough, my heart rate goes down and I feel less tired!

This morning I was starting at 120bpm just standing still, but when I walked more, it went up, but it eventually leveled out to about 105-111bpm.

Anyone else experience that?

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.