Orthostatic hypotension with tachycardia

M

MinIreland

Senior Member (Voting Rights)
Yesterday, I went to a long COVID clinic. They did an active standing test to for POTS. Within 2 minutes my heart rate increased from 65 to 170 and my blood pressure dropped significantly.

The doctor was being very dramatic about this result. She said she had never seen anything like this and that something is seriously wrong with me and that I probably don't have ME/CFS. She said it's not POTS because with POTS your blood pressure remains stable She has referred me to a cardiologist.

Although I think it's good that she has referred me, I don't believe that my test result is very rare for MECFS and LC patients? Especially if, like me, you had a monster crash (term stolen from @Chandelier) two months ago, which brought me from moderate to severe and I'm still bedbound all day (apart from going to the bathroom).

I just wanted to check here who has experienced a similar pattern? Or if you know of any good research around this pattern, please post links if you can.
 
Last edited by a moderator:
I have certainly heard of other patients with this presentation. I haven't got any data to hand about how common this is in LC and ME/CFS but classical OH is less common than PoTS in ME/CFS. But I see no reason why your doctor should be suggesting you don't have ME/CFS based on these results. Also, it's possible that the cardiologist will be of little help but it is good to rule out any other issues.

If you're able to, I would repeat the test at home and get several readings to make sure the significant rise in HR and reduction in BP is fully reproducible.

Some clinicians would probably diagnose you with PoTS but, as your doctor rightly stated, the PoTS criteria actually exclude orthostatic hypotension.
 
Last edited:
InitialConditions said:
I have certainly heard of other patients with this presentation. I haven't got any data to hand about how common this is in LC and ME/CFS but classical OH is less common than PoTS in ME/CFS. But I see no reason why your doctor should be suggesting you don't have ME/CFS based on these results. Also, it's possible that the cardiologist will be of little help but it is good to rule out any other issues.

If you're able to, I would repeat the test at home and get several readings to make sure the significant rise in HR and reduction in BP is fully reproducible.

Some clinicians would probably diagnose you with PoTS but, as your clinician stated, the PoTS criteria actually exclude orthostatic hypotension.
Click to expand...
I am wondering if your doctor thinks prolonged bed-rest or deconditioning from your severe crash might be causing such significant tachycardia on standing...?
 
Last edited:
InitialConditions said:
I am wondering if your clinician thinks prolonged bed-rest or deconditioning from your severe crash might be causing such significant tachycardia on standing...?
Click to expand...
No. She thinks I have some kind of 'serious illness' (as if ME/CFS isn't serious enough) that got worse over time. I think the reason she said that I probably don't have ME/CFS is that she hasn't seen patients as severe as I currently am. She's been running the clinic for 5 years, but she said I was the first one coming in in a wheelchair. I will ask her next time what she knows about ME/CFS.
 
MinIreland said:
No. She thinks I have some kind of 'serious illness' (as if ME/CFS isn't serious enough) that got worse over time. I think the reason she said that I probably don't have ME/CFS is that she hasn't seen patients as severe as I currently am. She's been running the clinic for 5 years, but she said I was the first one coming in in a wheelchair. I will ask her next time what she knows about ME/CFS.
Click to expand...
Ah ok, that makes sense now. Yup, they really don't have a clue about the severe end of the spectrum. Many severe patients will relate to your story.
 
MinIreland said:
She's been running the clinic for 5 years, but she said I was the first one coming in in a wheelchair. I will ask her next time what she knows about ME/CFS.
Click to expand...
A sign that clinics are only seeing the milder cases and pwME are yet again neglected. Maybe offer her our fact sheets. Someone running a Long Covid clinic really should know more about ME/CFS.

Good luck with the cardiology appointment, I hope you get some answers and help
 
Trish said:
A sign that clinics are only seeing the milder cases and pwME are yet again neglected. Maybe offer her our fact sheets. Someone running a Long Covid clinic really should know more about ME/CFS.

Good luck with the cardiology appointment, I hope you get some answers and help
Click to expand...
Great idea, @Trish. I've given them to my GP and my so-called 'ME/CFS specialist' (ahem) but didn't think of bringing them for her. I'll email them to her.
 
MinIreland said:
No. She thinks I have some kind of 'serious illness' (as if ME/CFS isn't serious enough) that got worse over time. I think the reason she said that I probably don't have ME/CFS is that she hasn't seen patients as severe as I currently am. She's been running the clinic for 5 years, but she said I was the first one coming in in a wheelchair. I will ask her next time what she knows about ME/CFS.
Click to expand...
Many clinicians just are not exposed to the reality of severe ME/CFS. And when they are they either deny the patient is actually that sick or react with horror and decide the patient has something 'much worse' like yours has.

Sorry about that, it must have been a frustrating experience. And sorry you're still stuck mostly in bed.

It really is a damning indictment of these services that they are this sheltered from the reality of severe ME/LC
 
When I was first ill and just about managed to get too and from appointments and hospital I had some similar experiences of medics freaking out about some of my physical symptoms but ignoring others. It does show how little they see or understand of me/cfs. I was also in a wheelchair, went through cardiology at points, etc.

A person with a high heart rate on the floor in their surgery they respond to albeit often in unhelpful ways. One they never see because they’re too ill to get out of bed they don’t see or believe exists. Out of sight out of mind I guess..

Good idea on the fact sheets. Beyond that look after yourself as best you can @MinIreland and hope you can get some help or support.
 
I think that the prevalence of OH is unknown because such patients may be at the severe end of the disease spectrum and may therefore be underrepresented in studies.

Certainly, ruling out other conditions makes sense. In addition, I suggest reviewing your medications and, if any of them can lower blood pressure, discussing this with your doctor. For example, I have heard of a bad experience with mirtazapine in my local community.

I developed low blood pressure with orthostatic tachycardia myself and met the criteria for POTS during a tilt-table test. I am keeping my head above water because I have regained the ability to walk to some extent. Of course, I am not advising walking or any other exercise. I mean that, in my experience, being bedbound dramatically amplifies orthostatic symptoms.
 
@MinIreland

My close friend who had ME/CFS for 18yrs experienced the same symptoms as you describe, he was severe, but didn't need a wheelchair. I don't think the doctor should have judged you b/c you arrived in a wheelchair. My friend was referred to a Cardiologist by his doctor who had specialties in infectious diseases, and treated many pwME/CFS. His own son recovered from CFS.

It was the right decision to refer you to a Cardiologist, try not to get too stressed. I hope they find answers. Best of luck.
 
You must log in or register to reply here.
Back
Top Bottom