For those who've been following my posts, some of this is old info; for the benefit of newer caretakers/persons with PSP, I'm going to briefly refer to the complication of PSP I was diagnosed with May of 2013.
My Doc (a Neuro) surprised me with a referral for a sleep study. Sleep apnea was the furthest thing from my mind. I didn't think I had sleep issues nor am I overweight, as is often a contributor of obstructive sleep apnea.
The results of the sleep study were that I have severe sleep apnea; I stopped breathing every 30 seconds during the study, sometimes for up to 2 minutes.
However, my Doc told me my apnea is only 10 percent obstructive; 90 percent of the events were caused by my autonomic nervous system. The autonomic nervous system controls when your heart beats, when your lungs take a breath, etc.
He also told me very specifically that this type of sleep apnea is a known complication of PSP.
The only treatment is the use of a CPAP machine. I have a high-end machine and need the full face mask. While it hasn't eliminated the apnea events, this treatment has reduced the events quite a bit.
However, starting roughly a year ago, I began to notice I became short-of-breath quite easily. When this would happen, I would become sweaty and nauseas. Went to the ER a few times because of it; was treated like a cardiac patient, but my EKG's and blood-work always came back normal. So I chose to ignore it. Have enough problems with PSP symptoms.
But these episodes over time have become so frequent that they have me off my feet and back in bed almost 24/7. Even the simplest exertion such as walking down a flight of stairs, or just recently, the day I saw the Cardiologist (a few hours before), I was a few minutes into very light sweeping of the floor, and it triggered an episode. I would always rest after an episode and even 2,3,4 hours later, if I got up to walk to the other side of the house, I would be panting due to being out-of-breath.
Very scary stuff. I saw my Neuro a few weeks ago and told him about these symptoms which had become daily. He did NOT think they were PSP related, or to his knowledge, heart problems were not associated with PSP. But, he referred to a Cardiologist anyway, who I saw on Thursday.
Wow. Glad I did. He had received my records and was very prepared. He zeroed right in on a probable heart complication/s. Not directly related to the PSP, but because of the type of sleep apnea I have, which is a complication of PSP.
The Cardiologist's exact words were "Autonomic sleep apnea can wreak havoc on your heart and damage it in other ways than heart disease, or cause sudden onset of heart disease.".
A little ominous, yes. But so is PSP. Yet, something is quite wrong and there's no getting around this but to plow through the heart of it, pun intended
Not to mention, the condition I've arrived at is not doing a thing toward quality of life.
I feel like I'm in very competent hands with this Doctor. Thursday, they drew blood-work. Monday I'm have a CT scan of my heart. On the 29th, I'm having an echo-cardiogram.
Because I still have a small part of me that whispers "Maybe you're just not trying hard enough. Maybe if you become more active, I will get stronger and this will improve.". Don't know if any other persons with PSP experiences guilt, perhaps denial, of feels they just 'need to try harder and things will get better'. Boy, if so, I'd love to hear from you. This is a lonely experience. I do believe part of why these thoughts filter thru my mind is because these are words/attitudes I've heard/received from quite a few people since my diagnosis. It has messed with my head.
So I asked the Cardiologist if I could 'just push thru' one of these events w/o risk. He said absolutely not. He said the symptoms are clearly cardiac warning signs. Told me to immediately stop what I'm doing and rest. Told him that's what I've been doing but even hours later, if I reattempt simple things, it happens again. He then told me to simply rest til I hear otherwise from him.
What I want the result to be is "Yes, we have found a problem/s with your heart and this is how we can fix it and you will feel much better.". Too much to expect? Too simple.
What I'd prefer not to hear is "Yes, we found a problem/s with your heart and the damage is irreversible but we can prevent/slow down the process if you take 2 or 3 or whatever heart medications.". Should they have side-effects that make me feel more sick and/or more tired. My daily meds right now are 8 with an additional 4 I can take should I feel like I need them. Enough already. My point here is quality of life.
What I don't want to hear at all is "Yes, we've found a problem/s with your heart, it's damaged, can't fix it and will probably get worse." Enough said.
I'm not being an alarmist, but over the past few years I've read several posts from beloved caretakers who've mentioned sleep difficulties, abnormal sounds, abnormal breathing of their persons' with PSP. If you haven't done so already, you might want to push the point with their physician should the complication of autonomic sleep apnea be present. I'd also push it a bit because even my own Neuro who I still have a high opinion of and trust, didn't seem to think there was any connection between PSP and heart problems. But there is if apnea exists.
My question to others out there is do you know of heart complications resulting from PSP, regardless of apnea? And, if anyone else is going thru the same thing, I'd really appreciated hearing from you.
And, support and words of encouragement are much in need.
Judy Johnson
MN
USA
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