Sudden change from hypotension to hypertension after sepsis

[Guest ANCY]

Hi, been a while since I've posted. Curious if anyone else has had a sudden change from hypotension to hypertension? Beginning of This year I started Northera which really helped stabilize my blood pressure and got off the Florinef. Also used Midodrine and clonidine as needed but rarely needed the clonidine. 

Over this past summer was able to see a lot of improvement and was down from avg 10 pass outs a day to 10-15 a week roughly. 

Due to my central line bursting ended up with sepsis beginning of November. Spent 12 days in ICU fighting to get blood pressures up out of 50s/20s. The extreme low bp sent my heart into vtach so had to start an amyodirone drip along with the pressors and Eppi. Trouble was I'm extremely sensitive to pressors and sky rocketed my bp over the 200s on several occasions. Ended up having multiple bacteria grow on cultures and so concern was if something was growing on the valves of my heart. Echo didn't give a real clear picture but due to such low blood pressure TEE was deemed too dangerous and decided to proceed with 6 weeks of iv antibiotics just in case. 

As I started to improve they switched some meds added Florinef and peeled back other meds. At this point my bp started jumping on its own... They were somewhat afraid to treat these highs after spending so long battling the lows. Ended up with Posterior Reversible Encephalopathy Syndrome, an unbelievable headache and having Neuro symptoms from that. Most irritating was the blindness and near blindness. 

Things seemed to be getting better so worked on restarting tube feeds and setting up New peramitors and guidelines for managing the changes in my bp. 

Made it home on the eve of Thanksgiving and while it was nice to be home struggled with pain and bp management. There was definitely some connection between high pain and spikes in bp but not every time. 

On the 4th of December things came to a head and landed up in the ER in a hypertensive crisis. CT showed progression of the PRES which the ER Dr said was causing my inter cranial pressure to elevate and in turn cause the pain and inccesant vomiting, maybe also raising bp. Have several doses of hydrolazine but didn't last very long so started me on a drip and sent me to ICU.  

At this point had dc all my bp meds and Neuro said Northera could contribute to PRES so instructed not to restart. Did restart Midodrine as in between highs had some significant drops. 

Have spent the last several days going from extreme to extreme and not making a lot of headway towards an outpatient care plan. Except that clonidine no longer seems to work. Tried clonidine again  last night and twice had to resort back to the hydrolozine. Thankfully that worked after a bit because Was close to starting the drip again.  Kind of like I'm stuck in a rut... Unsure if this is a new normal, effects of sepsis, or even the iv antibiotics.  So far any time i spend out of bed I'm unconscious more than conscious and obviously can't go home like that...

Anyone experience a change like this? What brought it on? For those with high bp, how do you manage it? Do you also get lows? If so, what do you do for them?

TIA for any insight!

[Pistol]

Dear @ANCY - first of all I am very sorry you have to endure all of this. I cannot really advise you on what is right for you, since you are going through extremely complicated issues, but I can tell you what I - personally - have learned. 

I too have extreme swings in BP. I also will go extremely high when my dysautonomia gets triggered, and having sepsis etc is a definite trigger.  Having all of those changes in medications can also trigger an extreme reaction of the ANS. For me changing, adding or stopping meds (even just ONE at a time) can send me into chaos. Having to go through such an extreme change - and introduction of new, emergency - medications most likely could explain why you are so out-of-control right now. What has helped me in the past in similar scenarios was to find the happy medium - some med combo that seems to keep me at a reasonably stable point while in bed  - and then start from scratch. I mean - start from getting up even seconds at a time and then recondition slowly.  You know what I mean, I am sure you have had to go back to square one many times. 

3 hours ago, ANCY said:

There was definitely some connection between high pain and spikes in bp but not every time. 

Even in normal people pain can easily trigger hypertension. 

3 hours ago, ANCY said:

Anyone experience a change like this? What brought it on? For those with high bp, how do you manage it? Do you also get lows? If so, what do you do for them?

Yes - I get highs and lows, especially when in a flare ( or storm or exacerbation or whatever they want to call it ). Even when well I can go up and down, but when I am stable I run low, and feel great when it is low. 

Based on my own experiences I can only tell you that - especially after such a traumatic event on your body - it takes time, patience and the willingness of your physicians to be careful with changing your meds in order to get back a degree of balance. 

My heart goes out to you - hang in there!!!!

[p8d]

Oh @ANCY you have been through the ringer.  I hope that you are stabilizing now.  I agree with Pistol.  I am very unstable in general with both hypo and hypertension.  Anything that sets off stress in my body gives me huge spikes in BP, even talking on the phone.  At other times my BP is low, 90s/60s.  Right now I am flaring due to a mild UTI and everything is bad.  Hypo and hypertension, extreme fatigue and malaise like I haven’t had in a year or more.  I started SCIG a year ago and didn’t realize how much it was helping me until now.  I think that we are so physiologically fragile (but mentally strong as h***) that any stress can completely undo us.