orthostatic hypotension vs orthostatic hypertension

[Horizons1]

Hi all- I wrote here a couple weeks ago describing my frustrating (and still ongoing) inability to find a doctor who is familiar with autonomic disorders but I took it upon myself to do some extra testing and found something weird (yes I know doing tests on my own is I'm sure fraught with error... but still... here me out).

 

It's been suggested that I have orthostatic hypotension by a couple doctors even though they've never done any tests that confirmed this.  Tonight I took many blood pressure readings on my own (again I know there's error room here) but every single reading, I was getting blood pressure readings 20 or more higher standing than laying or sitting.  I'd lay down and it would average around 100/65 and I'd stand up, take another reading and it would be 120/85.  Every time.  My blood pressure is not dropping when I stand... it's going up!   Is this weird?!  Am I the only one that has this happen?  A quick google search makes it seem like that's way less common than hypotension.

 

Thanks for any feedback.  I'm getting so frustrated not knowing what is wrong with me.  Get dizzy all the time, lots of autonomic symptoms all the time.  My latest cardiologist just wants me to go to a long covid clinic and wouldn't tell me anything else.  Yes this all started when I got covid, but there's not exactly many long covid clinics around here...

[Pistol]

@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. 

[Sarah Tee]

I'm sorry you aren't getting much progress with your doctors. I had no luck at all until I finally managed to get referred to an actual autonomic specialist.

Doing a general internet search for information on autonomic conditions can be unproductive. (I have plain old chronic orthostatic intolerance, which almost never gets a mention until you get into the medical literature and know how to search and what terms to use, or find a support group such as this one.)

Just as an example, here is some research by one of the top specialists in various OI syndromes. You can see that he mentions orthostatic hypertension.

https://pubmed.ncbi.nlm.nih.gov/27525257/

I'm not saying that this necessarily describes your situation, just pointing out how complicated it gets and the extra knowledge that an autonomic specialist has that goes way way beyond the average cardiologist or neurologist who hasn't studied autonomic dysfunction.

There are 23 figures with this article, all showing different combinations of the ANS going wrong to produce OI.

As to how common a rise in BP on standing is in autonomic disorders, sadly there's probably not enough research even for specialists to take a guess. It could be very common but maybe all the people with the same pattern as you are fobbed off with "Oh, you don't have POTS" and never even get to an autonomic specialist.

Sorry if that all sounds discouraging. The good thing is that you've found this group and people here are great at helping you to find good help.

Are there any long COVID clinics (or autonomic specialists) that you can get to, even if it's a long trip? A clinic or specialist centre that is far away may be able to offer you telehealth appointments after your initial visit and testing.

[MikeO]

I get a bit of everything when it comes to orthostatics. My official diagnosis is neurogenic orthostatic hypotension. I have seen the drop in BP with no increase in HR as well as a high HR with seemingly normal blood pressures but still symptomatic to days when i feel a bit OI. I have over some time learned to be aware of how i feel and respond accordingly.

[Horizons1]

Thanks for the insight all.  It’s nice finding a place to share and listen to others who have similar experiences.  I don’t know anyone “in real life” who has anything similar.  Apparently not many doctors know much either.  I am on a waiting list at a long covid clinic now.  Hopefully the wait won’t be too crazy!

[MikeO]

Here is my latest message and response to my care team. I have been firing back a lot.

I do still question my orthostatics and why what happens and why it does. Does suck and has not gone away. Sure there is no definitive answer which is fine just might help to know why i get some of my symptoms or even some of my perceived convulsions.

Only wish on my part would to add a valsalva autonomic test to the clinic.(I don't care about the QSART test) i already know i get hot flashes. Meaning ekg, real time bp and supine and tilted test. May not be all telling or differential identifying what a issue is but IMO sheds some light.

Response:

I cannot explain why you have orthostatic hypotension or autonomic dysfunction. I previously referred you to Neurology for further evaluation of possible causes of neurogenic orthostatic hypotension. Unfortunately, after review of your case it was determined that they did not have additional recommendations for further evaluation.

Apparently i am licking a from at this point Haa.

 

 

[Sarah Tee]

I just wanted to add that a possible explanation for several doctors suggesting that you had orthostatic hypotension is that it is taught in medical school, and it is consistent with symptoms of feeling dizzy and faint on standing.

It is unfortunate that they didn't follow up by doing an active stand test to see what your blood pressure and heart rate were actually doing. So often we patients have to do this stuff for ourselves!

[Jyoti]

Maybe this should go in its own thread, but I am dealing with both hypo- and hyper-tension all of sudden. For what it's worth, I think we get a lot of really useful info from our own 'home testing' @Horizons1.  I got my diagnosis--or rather, I got the tests I needed to get a diagnosis by doing a series of stand tests and sharing the results with a reluctant doctor.

 For years, I have been pretty stable--my BP is low normal (unless I am upright too long and then it does drop) and there are ranges of heart rates I am familiar with.  They rise and fall a bit, depending on stressors, but they are fairly reliable. 

A week ago, my blood pressure tanked for two days.  I am usually 110/70 and suddenly it was 90/60.  I felt weak and pretty awful.  In a day or two it had risen to 158/105 and has stayed high--though not usually THAT high--over the course of several days.  My heart rate increased  by about 85-90 bpm from resting upon standing.  I know some people deal with this every day, but for me 60 bpm increase upon standing is more the norm.  

I have been to the ER and EKG and blood work all ok.  Malingerer-me!

But here is what I am watching: potassium.  Has anyone else had hypokalemia?  I drift toward it often enough and have had it pretty severely in the past. Thinking about it, I realized that I had the classic symptoms for over a month.  And lo and behold, drinking a glass of low sodium V-8, which has loads of K+, brings my blood pressure down to a reasonable level.

I did a few experiments and then went to my PCP to get some potassium of a certain sort.  I was offered an Rx for Lexipro.  THAT put my BP up, I will tell you.  

On 2/23/2023 at 5:35 AM, Pistol said:

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!

 

I'm going to see my cardiologist who is fairly POTS-knowledgeable in two days.  I am going to ask about these, @Pistol.  Do you understand why there would be such lability?  

You might be best off at a long covid clinic @Horizons1.  Of course I don't know who you will encounter, but it seems to me that people who are choosing to treat LC are quite dysautonomia-knowledgeable.

[MikeO]

On 2/26/2023 at 11:22 PM, Sarah Tee said:

I just wanted to add that a possible explanation for several doctors suggesting that you had orthostatic hypotension is that it is taught in medical school, and it is consistent with symptoms of feeling dizzy and faint on standing.

It is unfortunate that they didn't follow up by doing an active stand test to see what your blood pressure and heart rate were actually doing. So often we patients have to do this stuff for ourselves!

I know my PCP is trained (NP's not so sure about) but does not do any testing in office (poor mans tilt test) and will refer out to have a TTT test done. Unfortunately in my neck of the wood if you test positive nothing else will happen testing wise and is the end of care for it. You will get the usual generalized recommendations (drink more fluids, squeeze your butt before standing, compression socks etc...) usually no med changes and the good luck and be prepared if you pass out in public someone might call 911.

Then the buck starts to get passed when you start looking for answers. 

[Pistol]

1 hour ago, MikeO said:

Then the buck starts to get passed when you start looking for answers. 

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. 

[Jyoti]

2 hours ago, MikeO said:

usually no med changes and the good luck and be prepared if you pass out in public someone might call 911.

It is so frustrating, isn't it?  The state of medicine is not equal in most cases to the challenges we face.

[MikeO]

@Jyoti@Pistol I am soo frustrated right now. Getting tossed around the healthcare system (like pass around penny) lately is a bit more than i can handle. Even with my diabetes my PCP wanted me to be seen in Madison by a endo (sure for good reason He does not understand what i am presenting) then i spent two months trying to get a audience just to be referred back to my PCP. Same thing happened when i was referred to froedtert in Milwaukee (the other big university/health care provider in WI) just to be referred back to the faint clinic in Madison. Total (((grr))).

I did just get a message from a wi dysautonomia facebook person that got some help from just recently from froedtert it did take her a different round about way to get help.

I will try again.  

[Pistol]

@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!

[Jyoti]

I don't know if this could be of any use, @MikeO, and I am also quite sure you have explored it, but it occurs to me that maybe you would do better with telehealth at a distance with someone who knows what they are doing.  Easier said than done, that  But it seems like since the pandemic there are a lot more physicians who are practicing online, which increases the pool of people you might be able to access.....  Just a thought...

[MikeO]

44 minutes ago, Jyoti said:

I don't know if this could be of any use, @MikeO, and I am also quite sure you have explored it, but it occurs to me that maybe you would do better with telehealth at a distance with someone who knows what they are doing.  Easier said than done, that  But it seems like since the pandemic there are a lot more physicians who are practicing online, which increases the pool of people you might be able to access.....  Just a thought...

Hi @Jyotiyes this has been on my mind. for now i am just not in a good place. I need a break from not feeling well. I know a scoop of ice cream will help (comfort food) Lol.

I will keep pushing.

[mehaller]

My official Dx is adrenergic orthostatic hypotension.  I've done dozens and dozens of othostatic BP tests and frequently pop into the POTS world with HR bumping 40 BPM.  This did not happen with my one and only TT Test.  Five minutes into that test the continuous BP data failed to register.  My testing also shows hypo-tension.  My neuro says there's no such thing as a hybrid, but also said that the treatment is the same, which is midodrine.  I have made progress - I'm far better than I was a year ago pre Dx and meds.  I can make it through fixing breakfast and not getting the post prandial crash.  I spent a few hours outdoors recently moving dirt - a wee bucket at a time with lots of rest stops in between.  However, the doc is ramping down my modest 15mg per day due to headaches - head CT is next to make sure I don't have any surprises.  We'll see how I do on the reduced meds.  

It took me over two years to get a diagnosis and close to two years to see a neurologist.  My second face to face with him was yesterday.  This after months of ghosted phone appointments.  We kissed and made up and I feel we had a great discussion and game plan going forward.  

Keep at it.  If you don't persist, you won't be heard.

[Kfaith]

On 3/1/2023 at 3:59 PM, MikeO said:

@Jyoti@Pistol I am soo frustrated right now. Getting tossed around the healthcare system (like pass around penny) lately is a bit more than i can handle. Even with my diabetes my PCP wanted me to be seen in Madison by a endo (sure for good reason He does not understand what i am presenting) then i spent two months trying to get a audience just to be referred back to my PCP. Same thing happened when i was referred to froedtert in Milwaukee (the other big university/health care provider in WI) just to be referred back to the faint clinic in Madison. Total (((grr))).

I did just get a message from a wi dysautonomia facebook person that got some help from just recently from froedtert it did take her a different round about way to get help.

I will try again.  

Just got referred to Froedert since I'm six months into pots and just as symptomatic. Any helpful information from your friend on how to get help?

[MikeO]

19 hours ago, Kfaith said:

Just got referred to Froedert since I'm six months into pots and just as symptomatic. Any helpful information from your friend on how to get help?

All i was told is to stick to your guns. The doc that does the autonomic testing is Dr. Santos froedtert. He is well received. I was referred to UW Madison but that ended up nowhere

Please post back how you made out.

Big Hugs!

[akj]

The three times I have been to the ER, Hypokalemia and other electrolyte imbalance were noted.  One precursor to this seems to be I stop having very low blood pressure and get into hypertension with blood pressure reading very high particularly diastolic.  And I feel just awful.

Thank you @Jyoti for the low sodium V8 juice suggestion.  Have read tangerine juice is high in potassium.  Since we have a few trees of this fruit I also try that.  My cardiologist is not ready to try potassium tablets as he is not sure what sets off this electrolyte imbalance.

I really don’t want to go to the ER, but the IV infusion helps almost immediately.

Wish I was a better searcher of Dinet topics as every time I feel lost in some new symptom I cannot explain or understand I find help here.  Thank you all.