Heart question

[Sarah Tee]

All you folks know so much more than me – may I pick your brains?

If your pulse pressure suddenly goes from normal (about 40) to 100, what does that mean?

(I’m asking in terms of what is happening mechanically.)

My systolic was high, diastolic slightly high: 190/90.

My regular BP is 135/85 or thereabouts.

[Sarah Tee]

Eek, I just discovered that sudden wide pulse pressure can be caused by elevated intracranial pressure.

 

 

[Sarah Tee]

My knees are wobbling. The “senior” doctor at Emergency told me I had anxiety when I had actually been experiencing the beginnings of elevated intracranial pressure. Dear Lord.

The “junior” doctor did ask me some questions that may have been related to intracranial pressure. I did not have the full-blown symptoms, such as vomiting, unresponsive pupils and shallow breathing. Did have mild visual disturbances though.

Either she dismissed it, or the senior doctor disregarded it.

My specialist didn’t cotton on at all.

[MaineDoug]

I’m so sorry that you’re having such a bad time Sarah!

I’m a little confused about your initial message. What “pulse pressure” are you referring to? How long has your BP been 190/90? Is this at rest or with activity? Do you know your oxygen saturation level? 
Who diagnosed you with increased intracranial pressure?

Sending healing thoughts your way! 

[MTRJ75]

12 hours ago, Sarah Tee said:

Eek, I just discovered that sudden wide pulse pressure can be caused by elevated intracranial pressure.

Just remember, when googling, people with dysautonomia don't fit many of the normal patterns. They're likely talking about this as the first symptom of something else. There are a lot of things that are standard (though still not fun) for us that would be cause for a healthy person to get checked out. 

Of course, we do have to figure out what those standards are first. So, definitely bring this up and get checked (esp. if you're consistently 190/90 - I'm actually the exact opposite with much smaller gaps), but don't panic about the wide gap. 

[Sarah Tee]

Apologies, everyone, I was a bit incoherent the other day. I am fine now, if a bit shaken. BP is normal, heart rate is up 20 but I don’t care 🙂

 

@MaineDoug, Pulse pressure of 100 was the difference between my systolic and diastolic. My blood pressure kept going up weirdly to about 190/90 for about 8 hours each evening. This was at rest.

It seems to have been an unusual reaction to verapamil. When my dose wore off, I got this odd high BP, headache, pressure in my head and a red blotchy face. When I reduced the dose of verapamil, the next night it went to 200/110.

I actually think this had been happening for about a week, but I always take my BP in the afternoon, so I didn’t pick it up.

In the end I weaned onto candesartan and off verapamil. I’m just taking a low dose of candesartan now and my BP is back to normal.

I worked out the intracranial hypertension myself. I could be wrong of course, and it’s all over now, apart from some lingering headaches, so I’ll never know. I’m sorry to say say that nobody would investigate while it was happening.

 

@MTRJ75, you are right. I guess I’ll never know, as nobody would take any notice, even as it was getting higher each night.

This is the first time in my life that I’ve had an odd blood pressure reading. I said to my dad “Now I know how all the other people on the forum feel, getting all these unusual readings!”

Dr Novak prescribes verapamil for some of his OCHOS patients, so it’s not contraindicated. I have found some scattered reports from people who were taking verapamil for on-label reasons and suddenly experienced either very high blood pressure or very labile blood pressure. They didn’t mention headaches or pressure in the head though. Perhaps it was a bad reaction to the verapamil mixed with OCHOS effects.

Anyway, I’m fine now, won’t be taking any more verapamil. I didn’t have a bad reaction to any of the other calcium channel blockers I’ve tried so far, so will be brave and keep trying. After a break, of course!

[Pistol]

2 hours ago, Sarah Tee said:

They didn’t mention headaches or pressure in the head though.

@Sarah Tee These are common symptoms accompanying high BPs as you had. Long ago, before proper treatment, my BP and HR would go up together, like 180/100 with HR of 150. My heart and head at those times felt like they will explode! So - those symptoms most likely went along with your high BPS. 

I am relieved that you are off the Verapamil and have stabilized again!

[Sarah Tee]

@Pistol, that is very interesting to hear that you had wide pulse pressure too. I am sorry you had to go through that.

With hindsight, I am sure now that I was having an idiosyncratic adverse drug reaction. It was a particularly odd one, because it was happening each evening when the dose wore off, and it became more severe when I tapered the dose.

Unfortunately I had a slight relapse during an appointment with my colorectal surgeon. My face went red, I didn’t feel quite myself, and when I got home sure enough my BP was a bit high. But since then I’ve been okay. Just back to my “normal” symtoms. Argh 🙂