No diagnosis yet- looking for feedback- figuring out what is wrong with me

[Horizons1]

Hi everyone... new to the forum... I appreciate this being here and all the helpful topics I've already read.  I've been to a cardiologist and neurologist.  The nuerologist -thinks- I have POTS but won't diagnose it because he doesn't specialize in it.  My cardiologist literally told me there's nothing wrong with me except high blood pressure and anxiety (I really don't have bad anxiety), despite having a pre-syncope episode during a tilt test about 12 minutes after it started (I know that's slightly outside the range for POTS diagnosis).  My symptoms (which started the day I got covid a year ago)...

-dizziness when standing (lightheadedness- feeling that my head will float away or that I could pass out- but haven't ever passed out)

-increased pulse when standing (but not severe like a lot of people with POTS... general an increase of about 15-30 bpm but won't usually stay super high though if I feel bad it tends to stay over 100 where my resting pulse is closer to 75)

-bounding pulse almost all the time (my pulse I can feel pounding through my fingertips)

-I space out and get dazed, often after eating a meal

-bad fatigue if I have a physically active day

-sometimes have a hard time catching my breath for no obvious reason- again often after eating

-blood pressure is all over the place- I was placed on a low dose of metoprolol because it was high almost all the time during a 24 hour BP test.  But sometimes it's super low like 95/55 in the same day that it will be high 130+/100+.  Never had high blood pressure before I had covid.

-If I drink coffee I get incredibly dizzy

- fast head movements or spinning makes everything worse (I feel like is that not a normal dysautonomia thing or is it?)

- activities like grocery shopping almost guarantee I feel lightheaded and off

 

I know I dont' have these seemingly autonomic problems near as bad as a lot of people.. but I generally feel off almost all the time for the past year.  The thing that makes me question (and the doctors too) is that my pulse changes aren't as severe as POTS patients tend to be.  Nor have they found giant BP swings due to posture changes.  All I know though is someting is not right in my body.  

 

Any thoughts or feedback would be greatly appreciated thank you all!

[Sea otter]

@Horizons1 welcome! Unfortunately, a lot of people after covid experience many strange symptoms. 

I have POTS, and yes, fast head movements or spinning makes everything worse.

As far as I know, tilt test can sometimes be false negative. Also, I know some people with POTS that don't have so much problems with pulse, but with fatigue and dizziness. Every person is different. 

 

 

[Pistol]

@Horizons1 I am sorry you are going through this! To me the symptoms you describe do sound similar to dysautonomia. To be diagnosed the doctors dont have to be specialists but they need to know how to test for it. Tilt tests are commonly ordered but often are false or misinterpreted. And your HR does not have to be crazy high - the current diagnosing standard for POTS is 30 BPM increase in 10 minutes OR a HR above 120. Having said that - there are many people that have all of the symptoms of POTS but NOT the high HR, they often have a diagnosis of autonomic dysfunction since they dont meet the criteria for POTS. 

My first TTT showed NCS ( neurocardiogenic syncope ) since I passed out during it, and my second TTT was interpreted as normal, although my autonomic specialist ( whom I saw a year alter ) said it clearly showed POTS. I was diagnosed by him due to my symptoms, HR and BP readings and a blood test confirming elevated adrenaline levels upon standing. 

It is also common for a viral illness to trigger dysautonomia - have you read the articles and studies about POTS and COVID on our main page? Longhauler syndrome ( which is similar to POTS ) can also cause the symptoms you describe. In most cases the recommended treatment for POTS can help with symptoms you describe: increase in water intake, increase in salt intake ( but check with your cardiologist first if you have high BP ), compression hose ( waist-high is recommended but often not tolerated, especially in hot climates ) and compression garments should be professionally fitted by a medical supply store. You can also find charts online asking you to measure your calf etc to find the right size. 

Exercise ( preferrably in fresh air ) can help but be careful if you are exercise intolerant. Too much or too vigorous exercise may worsen symptoms. On the other hand frequent rest periods are helpful for many - not only after activity but also regularly scheduled rest periods can prevent symptoms. Since you mention symptoms after eating - I have found avoiding large meals and carbs but eating 6 snacks a day helps me a lot. 

Beta blockers are a first medication that doctors tend to prescribe if the above mentioned treatments are not enough, but every person may respond to a different one. Here are a few articles that may be of interest to you 

 

[Horizons1]

Thank you so much for the replies!  I finally have an appointment with a cardiologist that actually has experience with autonomic conditions.  Hoping for some answers.  It’s been a battle with doctors telling me they don’t know or that they think I’m healthy and it’s all in my head.  It helps I think create a feedback loop where I start doubting myself and if I am making things up.  But then I get so frustrated because I know there’s something off in my body.  The inconsistency of it all makes it tough too.  Some days I feel fine.  Others I’m not.  I tend to notice waves too that seem like I’ll have a bad week followed by a week or two that are much better.  Then repeats again.

[Pistol]

@Horizons1 We are here, and we hear you!

[Sarah Tee]

@Horizons1, I do hope this cardiologist will be helpful.

Many people report that their symptoms vary - could be according to time of day; from one day to another ("good days" and "bad days"); or over longer periods of weeks, months or even years. (And some people don't get much variation.) Sometimes people can identify a trigger that makes things worse, such as overdoing things, catching a bug, or hot weather; sometimes a flare comes on for no apparent reason.

So the fact that your symptoms vary does not mean that it's not real, or not dysautonomia.

I have what's called chronic orthostatic intolerance - symptoms quite similar to POTS but my blood pressure and heart rate are normal. There are many variations in autonomic dysfunction. It's not well studied yet and researchers and doctors are still trying to group symptoms into syndromes (collections of symptoms) to try to get to grips with these conditions.

Just as an example, here is an article on some recent research on patients who were suffering from orthostatic intolerance but had normal blood pressure and heart rate readings day to day and on tilt table testing. When researchers looked at these patients using different measures, they identified two new syndromes.

https://www.brighamandwomensfaulkner.org/about-bwfh/news/expanded-autonomic-testing-helps-to-pinpoint-cases-of-orthostatic-intolerance

 

[Sarah Tee]

P.S. You mentioned symptoms after meals. You may have already tried this, but some people find that eating smaller, more-frequent meals (e.g. four small meals instead of three main ones) helps. Reducing carbohydrate intake may also help. (Note that this would be done gradually, aiming for a lower carbohydrate intake, not a super-low ketogenic-type intake.)

I personally find that eating a low-carbohydrate breakfast makes the biggest difference for me. Something to do with "breaking the fast", I imagine.

It might be easier to tackle one meal at a time, so you could start by changing your breakfast and see whether that makes any difference. It can be a bit overwhelming to try to change your diet when you are tired and unwell already.

[RecipeForDisaster]

9 hours ago, Sarah Tee said:

@Horizons1, I do hope this cardiologist will be helpful.

Many people report that their symptoms vary - could be according to time of day; from one day to another ("good days" and "bad days"); or over longer periods of weeks, months or even years. (And some people don't get much variation.) Sometimes people can identify a trigger that makes things worse, such as overdoing things, catching a bug, or hot weather; sometimes a flare comes on for no apparent reason.

So the fact that your symptoms vary does not mean that it's not real, or not dysautonomia.

I have what's called chronic orthostatic intolerance - symptoms quite similar to POTS but my blood pressure and heart rate are normal. There are many variations in autonomic dysfunction. It's not well studied yet and researchers and doctors are still trying to group symptoms into syndromes (collections of symptoms) to try to get to grips with these conditions.

Just as an example, here is an article on some recent research on patients who were suffering from orthostatic intolerance but had normal blood pressure and heart rate readings day to day and on tilt table testing. When researchers looked at these patients using different measures, they identified two new syndromes.

https://www.brighamandwomensfaulkner.org/about-bwfh/news/expanded-autonomic-testing-helps-to-pinpoint-cases-of-orthostatic-intolerance

 

I go to Brigham and Womens, and they did find HYCH. It doesn’t explain everything, but at least it’s a label. Still, one of my local cardiologists pronounced my TTT Doppler results as a normal response. It said "37% decrease in cerebral blood flow compared to normal"…. Umm…

[MikeO]

9 hours ago, Sarah Tee said:

Just as an example, here is an article on some recent research on patients who were suffering from orthostatic intolerance but had normal blood pressure and heart rate readings day to day and on tilt table testing. When researchers looked at these patients using different measures, they identified two new syndromes.

https://www.brighamandwomensfaulkner.org/about-bwfh/news/expanded-autonomic-testing-helps-to-pinpoint-cases-of-orthostatic-intolerance

This is an interesting article. Sure this rules me out as i have changes in BP.s and HR.

[RecipeForDisaster]

10 hours ago, MikeO said:

This is an interesting article. Sure this rules me out as i have changes in BP.s and HR.

Oddly, I have stubbornly low BP regardless of position. I feel worse upright, partly because my BP is really too low to stand (I do anyway) and partly because of that decrease in cerebral circulation. My HR is similarly too fast all the time, though controlled with beta blockers now. To make things more complicated, I hate cities, traffic, traveling to hospitals, etc. and always have much better BP readings while there. It’s still trending down each visit, but 30 points or so higher than what I would be at home an hour after getting there.

[Pistol]

45 minutes ago, RecipeForDisaster said:

My HR is similarly too fast all the time, though controlled with beta blockers now. To make things more complicated, I hate cities, traffic, traveling to hospitals, etc. and always have much better BP readings while there. It’s still trending down each visit, but 30 points or so higher than what I would be at home an hour after getting there.

You already know this, but would that not be because of the increased adrenaline levels from all of the stimulation? 

 

11 hours ago, RecipeForDisaster said:

Still, one of my local cardiologists pronounced my TTT Doppler results as a normal response. It said "37% decrease in cerebral blood flow compared to normal"…. Umm…

They misinterpreted my TTTs until I actually had an episode while being monitored with both EEG as well as EKG. It showed that I had a complete and sudden seize in cerebral circulation ... well, we dont always get to be so lucky to have an event like that being recorded. For most of us they have to go by symptoms - but they don't always believe us ... 

[JennKay]

@Horizons1 -- Hang in there!! I too experience a range of symptoms that no one can really put a finger on. I also don't have the typical POTS HR changes upon standing, but I will get lightheaded if I'm on my feet for prolonged periods of time. My most annoying dysautonomia symptom is PVCs, they drive me crazy. Sometimes I feel like they are under control, then they reappear. Like one of the other members said, some of us know our triggers and some of us can't always figure it out. We are a mixed bag! And, to echo what others have said, it isn't all in your head -- you know something is off. Hopefully your new cardio will be helpful, and if not, then keep seeking help and guidance elsewhere! People look at me and think I'm fine, but they aren't in my body dealing with my symptoms. Keep pushing forward 🙂

[GasconAlex]

Unfortunately for me after a positive tilt table test (150 BPM) I was sent to a useless cardiologist who said that because the holter test showed the rise not being 'brutal' on rising then it wasn't POTS. Part of the problem for me is blood pooling and so takes a little time for the blood to accumulate and the loss of blood to be felt elsewhere with a crazy heart rate trying to keep up. 

Luckily my primary doctor realised this and suggested compression stockings. Not perfect but they help.

Doctors tend to be a mixed bag and a few are really good. Unfortunately there are quite a few that misinterpret the test data and don't understand things outside the normal.

Hang in there!

 

[Horizons1]

On 2/5/2023 at 9:45 PM, JennKay said:

@Horizons1 -- Hang in there!! I too experience a range of symptoms that no one can really put a finger on. I also don't have the typical POTS HR changes upon standing, but I will get lightheaded if I'm on my feet for prolonged periods of time. My most annoying dysautonomia symptom is PVCs, they drive me crazy. Sometimes I feel like they are under control, then they reappear. Like one of the other members said, some of us know our triggers and some of us can't always figure it out. We are a mixed bag! And, to echo what others have said, it isn't all in your head -- you know something is off. Hopefully your new cardio will be helpful, and if not, then keep seeking help and guidance elsewhere! People look at me and think I'm fine, but they aren't in my body dealing with my symptoms. Keep pushing forward 🙂

 

@JennKay Ok that is interesting to hear... I've actually had PVCs most of my life.  I thought they had gone away completely since I wasn't noticing them anymore, but during my tilt table test I had one.  I didn't know PVCs were a dysautonomia symptom.  I wonder if mine are related at all or just coincidentally both there, since the dysautonomic symptoms started a year ago and the PVCs when I was a kid.

 

The whole thing definitely seems like a hard thing to pin down and diagnose since everyone has such widely varying symptoms.  Still.. would be awful nice if more doctors were sympathetic and more knowledgable about this stuff!

[MikeO]

On 2/5/2023 at 5:18 PM, RecipeForDisaster said:

Oddly, I have stubbornly low BP regardless of position. I feel worse upright, partly because my BP is really too low to stand (I do anyway) and partly because of that decrease in cerebral circulation. My HR is similarly too fast all the time, though controlled with beta blockers now. To make things more complicated, I hate cities, traffic, traveling to hospitals, etc. and always have much better BP readings while there. It’s still trending down each visit, but 30 points or so higher than what I would be at home an hour after getting there.

I feel bad for you having to deal with the low standing BP. I do get a little of everything but is mostly postural orthostatic hypotension. Last night had a near event while blowing my nose and felt the low cerebral perfusion (barely was able to sit and i swear i get seizure like jerking movements.

My BP's are always higher at the clinic as well. Not sure if this is because of the white coat affect or just that i am over stimulated. My home bp's are always lower as well. 

[JennKay]

@Horizons1 -- Yes, it is my understanding that PVCs are associated with autonomic dysfunction. That is crazy that you have experienced them your whole life! Now that I know what a PVC feels like, I do remember having them before my symptoms fully appeared, but they were never this frequent. Did you play sports as a kid? I suspect I had this autonomic imbalance most of my life, but b/c I played sports (volleyball) and was active (running and cycling) until I had kids I think this "managed" my symptoms and I didn't know it. I believe exercise, particularly cardio, expands blood volume and I feel so much better on salt tablets and electrolytes. So, I think my previously active lifestyle kept things at bay until I had kids and no longer had the time or energy to keep pursuing things. I also feel better now when I "exercise," but this is no where near my previous level of activity. My fave at the moment are what I call "baby pilates" with resistant bands at home. You can do a lot with resistant bands and they help build muscle tone. I got mine off Amazon for $15.

[mehaller]

Your story sounds so familiar.  I was diagnosed with Adrenergic Orthostatic Hypotension.  But, I've taken dozens and dozens of orthostatic BP tests and on any give day I'll have the POTS 30+ HR jump after sixty seconds standing from supine test (five minute chill). Or, I'll test with low Systolic.  I had been improving since October, able to get through the grocery store on my own without needing to sit.  Until the last two weeks.  I backed off midodrine because my kidney GFR was crossing over into CKD territory, and I was getting headaches from 15mg/day - weird random headaches - showed up in an instant - then go away after ten to 30 minutes.  Over the course of a month - down to 7.5 to 10mg/day of midodrine  my headaches went away, but the light-headedness returned, as did sleeplessness.  So, I'm up to 12.5 mg/day - see what happens.  I spent nearly two hours on my feet outdoors - nothing too exertive - great.  But, I also know I'll be prettty useless tomorrow..  

You stated that you probably weren't as bad off as many here.  Me too.  But don't let that stop you from trying to get better.

1).  You're not alone.  There are a lot of resources on this site.  People like you sharing their stories is more than misery loving company.  

2).  Your doctors will ignore you if you let them.  Keep pushing.  

3).  Keep pushing

[rondo]

Hello. Newbie here. No dx yet but had to jump in. My personal journey started with symptomatic PVCs in early 2020. Started with a local cardiologist. Eventually he found a congenital vascular anomaly and referred me to a university hospital for that. I had surgery in 2021 but the PVCs and associated symptoms persisted and slowly escalated. I had PVC ablation last summer. Complications from that led to more imaging and discovery of another anomaly, which was corrected in Dec 2022. Meanwhile my symptoms are ongoing and slowly getting worse. 

What are the symptoms, you ask? Pounding, slow pulse, chest pain, dizziness, lightheadedness and brain fog. Triggers are prolonged standing, especially after positional changes like bending over, and light or heavy lifting and activity in general. I can do a certain amount of activity but then I have to sit down or lie flat, which always makes it better. I ended up having to stop working because I couldn't do the essential functions of my job. I now have less stress than I have in decades, and am able to manage my day to optimize how I feel but actually more problems now than when I stopped working. 

 

I have told this to all 4 of my heart doctors many times and none of them EVER mentioned orthostatic intolerance. Fortunately the complication (minor stroke) from my ablation got me referred to a neurologist who happens to be a dysautonomia specialist. 

Of course there's a lot more to the story and a lot of other weird symptoms, but my point is that I am scheduled to have autonomic testing in a few weeks. 

I am TERRIFIED that the testing won't show anything and I will be labeled a hypochondriac. (I Iook healthy, but complain of dizziness and chest pain  yet no significant heart disease) I have a ton of dysautonomia symptoms but don't fit any category. I have done orthostatic vitals enough to know that I have tachycardia occasionally, hypotension occasionally, hypertension occasionally, but mostly normal. I am symptomatic daily but feel best early in the day and after resting. So I usually feel fine during actual doctor visits and this test is at 8 AM so I predict that I will be feeling fine. 

Anyone have any advice? Could the test show anything even if I am not symptomatic at the time?

 

 

 

[Pistol]

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. 

8 hours ago, rondo said:

I am TERRIFIED that the testing won't show anything and I will be labeled a hypochondriac. (I Iook healthy, but complain of dizziness and chest pain  yet no significant heart disease) I have a ton of dysautonomia symptoms but don't fit any category.

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. 

[Stitches]

On 2/4/2023 at 8:03 PM, Sarah Tee said:

@Horizons1, I do hope this cardiologist will be helpful.

Many people report that their symptoms vary - could be according to time of day; from one day to another ("good days" and "bad days"); or over longer periods of weeks, months or even years. (And some people don't get much variation.) Sometimes people can identify a trigger that makes things worse, such as overdoing things, catching a bug, or hot weather; sometimes a flare comes on for no apparent reason.

So the fact that your symptoms vary does not mean that it's not real, or not dysautonomia.

I have what's called chronic orthostatic intolerance - symptoms quite similar to POTS but my blood pressure and heart rate are normal. There are many variations in autonomic dysfunction. It's not well studied yet and researchers and doctors are still trying to group symptoms into syndromes (collections of symptoms) to try to get to grips with these conditions.

Just as an example, here is an article on some recent research on patients who were suffering from orthostatic intolerance but had normal blood pressure and heart rate readings day to day and on tilt table testing. When researchers looked at these patients using different measures, they identified two new syndromes.

https://www.brighamandwomensfaulkner.org/about-bwfh/news/expanded-autonomic-testing-helps-to-pinpoint-cases-of-orthostatic-intolerance

 

 

[Stitches]

Thanks for sharing this article!

[rondo]

Thank you so much,  Pistol. I guess I've just been going through a lot for a long time, like everyone else here  (I think some of the dysautonomia started with my cancer treatments 15 years ago. The cardiovascular stuff didn't really cause a problem until after I had Covid-19) I know it's chronic and likely manageable at this point, but I keep going through a seemingly endless cycle of thinking I have THE answer of what's wrong so I can accept it and get on with my life. Really, dealing with the aftermath of successful cancer treatments 15 years later is a nice problem to have. 

Bottom line is I just want a diagnosis so I can stop doubting my sanity. 

And it really helps to know that I am not alone in this. Looks like Horizons 1 and I have a lot in common. 

 

 

[Horizons1]

20 hours ago, rondo said:

Thank you so much,  Pistol. I guess I've just been going through a lot for a long time, like everyone else here  (I think some of the dysautonomia started with my cancer treatments 15 years ago. The cardiovascular stuff didn't really cause a problem until after I had Covid-19) I know it's chronic and likely manageable at this point, but I keep going through a seemingly endless cycle of thinking I have THE answer of what's wrong so I can accept it and get on with my life. Really, dealing with the aftermath of successful cancer treatments 15 years later is a nice problem to have. 

Bottom line is I just want a diagnosis so I can stop doubting my sanity. 

And it really helps to know that I am not alone in this. Looks like Horizons 1 and I have a lot in common. 

 

 

Right I just want a doctor to acknowledge my symptoms and give me a diagnosis.  It’s like nobody knows anything about dysautonomia.   So frustrating.  Nice to know that we aren’t alone with this stuff though.

[rondo]

It does help, doesn't it? Although at this point I experience daily symptoms, some days they are quite mild and I can function normally. On those days I'm fully convinced I'm finally recovering. Then I'll have a Wipeout day and tell myself "what was I thinking  ?"

  I was so relieved to learn about long Covid because I thought it meant the cardiovascular symptoms would get better. But 3 years into it not so much...

3 hours ago, Horizons1 said:

Right I just want a doctor to acknowledge my symptoms and give me a diagnosis.  It’s like nobody knows anything about dysautonomia.   So frustrating.  Nice to know that we aren’t alone with this stuff though.

 

[Horizons1]

4 hours ago, rondo said:

It does help, doesn't it? Although at this point I experience daily symptoms, some days they are quite mild and I can function normally. On those days I'm fully convinced I'm finally recovering. Then I'll have a Wipeout day and tell myself "what was I thinking  ?"

  I was so relieved to learn about long Covid because I thought it meant the cardiovascular symptoms would get better. But 3 years into it not so much...

 

Your symptoms are almost 100% the same as mine and also seemed triggered by covid.  Let us know how your tests go!