Wildly Fluctuating Blood Pressure. Very High. Nephrologist?

[Kris4444]

I'm starting to wonder if it's my blood pressure cuff or my NE spiking. I saw my GP yesterday after having several high bp readings at home over the past few days and filling up with 11 pounds of water weight over a weekend. My bp was high there but not as high as at home. They told me to start taking a half of a 25 mg hctz in the evening on top of the 30 mgs of nadolol in the morning. I drove an hour to visit with my mom. when I got home from my moms, my bp was 175/111. I felt extremely tired and tingly and had some pain in my left shoulder blade. I called the GP on call and he told me not to freak out over the numbers. He said he did not feel as though I was in crisis but if my arm pain got worse to go to the hospital. He also suggested I be seen by a nephrologist to have them be the expert to figure out how to control the blood pressure since I have so many issues (MCTD, dysautonomia, GP...)

This morning my bp was normal. After coffee it was 161/102. So I went to CVS and tried their machine. It was lower there but still 130/93. Back at home after relaxing it was close to what I saw at CVS. Later in the day it had shot up again. So again, my cuff? or spikes of NE? Hubby wants to buy a new cuff. Can't hurt.

I am hyper POTS. I have high dopamine and NE. My gastroparesis had been really bad. Does anyone else get these wildly fluctuating blood pressures? What do you do to regulate it? 

[SarahA33]

 

My Bp is erratic as well. It will spike as high as yours was above, and then some days it'll bottom out. I carry clonidine and midodrine with me, completely opposite meds - but my BP is up and down all the time. I started seeing a nephrologist (hypertension spec.) before I was diagnosed. He is the doctor who ended up diagnosing me, and he handles my pots locally. Other than the dr's I see in Cleveland, the htn Dr. has been the most helpful doctor I've seen.

[Kris4444]

Thank you Sarah! You are always a wealth of information! I had a nephrologist when I went into acute kidney failure after reacting to an MRI dye. I called today to explain my current situation but they said it had been 6 years since I had seen her so I'm considered a new patient and they couldn't see me til next year! My GP said they might be able to get me in to see someone soon.

I did speak to my FAVORITE doctor, my rheumatologist, today. He thinks there was too much sodium in the restaurant food I ate over the weekend and thinks my bp will stabilize. He wants me to keep an eye on it. He also somehow knows that I've bought a bunch of canned soups  (I don't recall sharing this but must have in our appointment last week) and told me that the hospital fills up with people full of excess fluid at the first cold snap of the season. Guess I won't be eating those soups! 

[Lily]

Soups are much better when you make them yourself.  Try it!

When you get your new BP cuff, take it to the doctor and take a reading on it right after he measures your BP manually.  That will give you a better idea if the cuff matches the doctor.

 

[SarahA33]

The ER thing is interesting. I know the majority of us w/ POTS have a high sodium diet, and I look at the grams of sodium in a lot of food and can't imagine how most of the population are able to cut their sodium back. I just had progresso soup and the content was 830 mg of sodium.

I can't believe the wait list for the nephrologist is a year! Geesh. Hopefully your dr. can get you in faster, or recommend someone else. My htn spec. knows the ins and outs of BP meds & electrolyte imbalances, orthostatic hyper/hypo-tension, he also handled my kidney stones and uti's. He's fantastic.

Sorry to hear about the dye. Was that similar to the dye used in a CT? I had no idea that affected the kidneys.

[Kris4444]

Lily, I do make homemade soup all the time but thought for a quick meal a canned soup would work. I'll have to pay attention to my bp if I use the canned soup. 

The dye that I reacted to is gadolinium. It's used for MRI as well as floroscopy. I have some bulging discs that were causing me pain so they did the MRI and then a day or so later did an epidural with floroscopy using the same dye. I guess it was just too much dye for me. 

The iodine they use for CT scans doesn't bother me. Weird. 

 

[SarahA33]

That is weird! But it's kind of like a lot of meds Rx'ed for POTS symptoms, one person can have complete relief while it sends another into a crash.

Just checking in to see how your BP is doing.

[Kris4444]

Thanks Sarah. BP is doing better. We had an out of town wedding and I forgot one of my bp meds at home. Sunday when we got home it was high but is looking better today. 

Thanks for asking.