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Unregulated-was low bp now it’s high


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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. 
 

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49 minutes ago, JFreeer said:

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? 

Yes, I get both high and low. When stressed, overstimulated or too active I become hyPERtensive, when not active enough I am hyPOtensive. Yes - what your PCP suggests - to reduce stress - can help with the high BP, but of course that is easier said then done when you are working. ( I am disabled, so I can rest whenever needed ).

It is important to check your BP frequently throughout the day to detect a pattern, which can help determine the cause of the high Bp. I would check it at least 3 times a day and whenever you feel unwell, as well when in a stressful situation. This could give clues as to when and why your BP goes up. 

Regarding the questions about licorice root, compression hose and high salt diet - that is something that you would need to ask your doctor. In some cases they recommend to stop high salt and high water consumption with high BP and in others cases they say you should continue. Personally I always had to drink a lot of water and increase salt intake, despite my high BP's, but this is not the case for everyone. 

58 minutes ago, JFreeer said:

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? 

That is a tricky thing to figure out. Being that you returned to work recently means that your body has to adjust to new requirements, and that usually negates all of the stability that you may have developed before. The fact that you are on your feet a lot more, have to deal with high-stress situations, have to ignore the alarm signals of your body and have a different rhythm all affects the way your ANS copes. A change in routine like that alone could push someone with POTS over the edge, so it would not be a surprise at all to see your BP go up. Since you have changed your daily expectations on your body you may also need different medications to help you. Flares are unpredictable but in your case I assume that it is due to your work. Can you cut down hours or days? That might help a lot. 

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Thank you@Pistol for your response.

This response was so informative and seems right on.  I did ask my boss to not schedule me for 4 days in a row again. So now I will just do 2 days and off a day and back on for 1-2 days.  I thought I could reset with just 2 days off from the High BP episode but it took 4-5 days off. I had to call in sick again .

Overstimulated is the word I did not have to describe it, but it was exactly what happened. I had to force myself to sleep. I woke up with extra energy,etc. I guess this is the fight or flight response.

I have put my meditation as a goal twice a day now and it had began to help.

I am looking in to other self preservation and self soothing activities to try to prevent that adrenaline rush.

I thank you again for sharing your knowledge as I do not hear this much information from the regular health care community I work in.

When i had high bp at work my nurse manager insisted I be seen by a rheumatologist. I wasn't sure about this. Have you heard any experience with this? My antibodies have been negative with my testing.

 

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6 hours ago, JFreeer said:

When i had high bp at work my nurse manager insisted I be seen by a rheumatologist. I wasn't sure about this. Have you heard any experience with this? My antibodies have been negative with my testing.

I am not sure why she would recommend a rheumatologist, except if you have underlying health issues despite the POTS. In my case I saw a cardiologist first for my high BP and HR ( 4 actually before I went to the autonomic specialist that treats me now ). If your ANA, ESR, RF etc are all normal I personally would not see a rheumatologist as my first choice.  I did see a rheumatologist last year for some possible anti-immune symptoms but everything checked out OK. I would probably start with the physician that has been treating you for your POTS. 

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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.  

 

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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!

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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! 😛

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