Fluctuation in Blood Pressure

[soonerwife]

For the last few weeks my PALS has been normal some days, high some days and low some days?

Before ALS, he always had low blood pressure. After ALS, he had high bp. Now it just seems random.

Anyone else having a hard time managing their bp?

Our hospice nurse thinks that ALS is causing it due to autonomic dysfunction?

 

[KarenNWendyn]

Blood pressure normally varies quite a bit throughout the day and can even differ if you take two readings a few minutes apart. What is most important when deciding to treat is looking at the trends.

I would suggest making several measurements of blood pressure throughout the day, for a period of several days. Write out the time each reading was taken, how long since the last feeding, and any symptoms that may be occurring at the time such as pain or shortness of breath. If he is already on blood pressure medication, make a note of when that was given. Then look to see what the range of readings is, and if there are any patterns. I would only get excited about treating, or changing treatments, if the majority of readings are too high or too low. I wouldn’t worry as much if there is a lot of fluctuation as long as the average readings are reasonable and as long as you don’t see a correlation between readings and worrisome symptoms.

Autonomic dysfunction can affect blood pressure but only occurs rarely in ALS. Pain and changes in respiratory symptoms definitely can affect blood pressure.

 

[soonerwife]

Thanks Karen!

I have been taking his bp throughout the day and noting it in a notebook. I also note if I give him any bp meds.

I think the nurse is concerned because it is a big fluctuation.

The highest is 174/105 and the lowest was 92/67.

We are keeping an eye on it. I just wondered if this was typical or if my PALS is rare again, lol!

 

[lgelb]

Can't remember which class of BP meds he's on? The med, regimen or dosage may need adjustment.

Transfers, too much work in breathing, inconsistent hydration, and metabolizing tube feeds [which the body has to do differently than when food is taken by mouth] are examples of things that can cause BP fluctuations.

 

[tripete]

Mine has varied considerably as well since diagnosis. It has been more noticeable now that hospice takes it each week. Not sure how it relates to ALS but I suspect lack of movement etc may play a role.

 

[lgelb]

Definitely, Pete, lack of movement plays a role, as muscles are not utilizing the energy they used to. And "autonomic dysfunction" is a fancy way of saying circulation, metabolism and balance are not the same when you're not moving the same.

 

[soonerwife]

He is on Lisinopril. He only takes it when his bp is up. I only give it to him if the upper # is over 150 or the bottom # is over 90. Then he is only taking 2.5 mg.

His hydration is pretty close to the same everyday.

We will be keeping a pretty close eye on it but the nurse gets concerned when it is too high or low. She thought maybe he was having irregular heartbeats again and maybe my auto bp machine wasn't reading it right. She came over and took it with a manual one and it was still low but not as low.

He was having much lower when he was sitting in the recliner with his feet up. Then I moved him to bed because she wanted his feet higher and he was having a lot of hip pain. His bp was still low but more like 110/67 which she wasn't concerned about.

 

[lgelb]

Lisinopril (or any other ACE inhibitor) isn't designed for "if he needs it" dosing. He's not continuous monitoring, it will take too long to work, you will be driving using the rear view mirror, and he won't have a steady level, very important to BP control both ways. His BP can rise and fall just from unstable drug levels -- like withdrawal in a way, even before you get to what the drug was designed for.

I would really suggest that you ask his doc for a once daily dosing regimen -- maybe a low-dose CCB like diltiazem, depending on his other rx/conditions.

 

[soonerwife]

Ok, I will talk to them Laurie. It seems that it bp is usually only high enough to require meds once a week?! Like today it is perfect...

 

[KimT]

Is he reactive to salt? Do the high days coincide with swelling in his limbs or extreme anxiety? If he only needs it once a week, I'll bet he doesn't need it or needs a very low, low dose each day.

 

[lgelb]

If he's spiking to 174/105 as measured, it's hard to believe spikes only happen once a week, though sodium, anxiety and energy expenditure as you say all play a role. It's more likely that he has labile BP (and probably pulse) more often than one day a week. That's why I would suggest consideration of a daily low-dose agent.

 

[soonerwife]

Wouldn't a low dose cause him to go too low on the days he is low?

I honestly see nothing that could be causing the spikes. His diet is always the same. His daily activities are pretty much the same everyday.

His bp is checked randomly throughout the day but on the days when it is good two or three times in a row, I don't take it again so there could be spikes when it isn't being checked?!

When I think it would be higher like yesterday when he was having lots of pain in his hip, it was very low. Low enough that the nurse came over when she wasn't supposed to just to check it.

 

[lgelb]

No, the right dose could help even him out. Think of it as keeping your foot lightly on the gas pedal in slow traffic. If you need to brake, your stopping distance will be less. If you need to speed up, the car will not lurch.

As Karen says, more measurements may also give you a more complete picture and point to some triggers, but excursions such as you describe concern me because apart from the long-term vessel and organ damage, which may not be as relevant, high BP forces everything to work harder when it already is. And when BP is low, pulse typically rises, which creates work as well.

Does Cliff feel any discomfort when these high or low eps are noted to happen?

 

[KarenNWendyn]

I agree with Laurie that it’s better to have a low daily dose of BP medication even if he has an occasional day with low readings. Now if he had a very low reading in association with symptoms of lightheadedness, then the med could be held for that day until the problem is corrected.

 

[soonerwife]

He says he doesn't feel any different when the bp is low. At one point when his bp was low, his pulse was 110 which is higher than normal. His pulse is usually in the 90s and alot of times a bit over 100.

I haven't asked him how he feels when it is high.

Hmmm. I am only giving him 2.5 mg on those days. The nurse even told me to wait to give it to him when it's high in the mornings until the afternoon and keep watching it. She is worried about it getting to low because it was 90/53 the other day.

Ugh! She isn't coming again until later this week. I will try to talk to her about the low dose.

Do you think this could be autonomic dysfunction? I read a couple of case studies about ALS patients having crazy spikes and drops in bp.