My Aching Heart...

[JudyJ]

...more like my squeezing heart.

Late last week, I had 4 random incidences of short (a minute or less), but very painful, squeezings of my heart muscle. At least I think it was my heart muscle; just slightly left of my breast-bone & it felt deep. Friday night/early Saturday morning, it woke me up from a sound sleep. And it scared me a bunch.

I've had lots of chest pain over my lifetime, since a little girl. Pneumonia a few times, bronchitis several times, chest pain from anxiety, etc., but I've never experienced the 'squeeze' sensation.

I'm not a reactive person, so after I thought about it for several hours (I shouldn't wait, I know), decided I'd go to the E.R. and get checked-out.

My Mother's side of the family, including my siblings, is rife with heart disease; so far I've been lucky, but at age 54, decided to err to the side of caution.

However, with PSP, I've been experiencing, muscle spasms and/or tightness and/or pain where I didn't think it was possible. That was also on my mind, and my preference over a heart problem, frankly.

I had 2 E.R. docs working on me. I explained PSP & how it can affect muscles, tendons, ligaments, etc. But I quickly realized after my1st few sentences I had lost them; they had no idea what I was talking about - what a surprise, eh?#!

This was within the 1st 5 minutes or so. One went so far as to tell me she didn't think "your little neurological problem" had anything to do with the reason I was there.

'Little problem'?? If I had the energy, I would've reacted in a big way. No doubt I'm not the only one with PSP who's experienced physicians not knowing what PSP is. But why do they have to get so defensive? Ego? Just my opinion, but it seems to me some docs just don't like it when you know something they don't, and can talk eloquently about it, but geeeez.

My EKG, BP, and bloodwork were all normal, or as they put it "almost normal". The only thing that wasn't was my oxygen level; stayed stuck at 94 for several hours in spite of 3 rounds of nitro and nasal oxygen.

They kept me overnight to do a blood test every 6 hours to determine if one of those 'squeezes' was a heart attack. Those tests were normal too, thankfully

Today I go back to the hospital for a heart echo-cardiogram/treadmill test; because of my family history, have to follow this thru. If it's normal, I see my Neurologist on the 30th and will get his opinion on all of this.

Just curious...anyone else with PSP or a care-taker of someone with PSP ever experience muscle spasms in the chest area, not related to a heart problem?

[dllera]

Hi Judy - My dad had this before. We ended up at the ER as well and they were able to look at his old EKG's to know that he was normal. He also had spasms in his bladder & stomach.

[JudyJ in reply to dllera]

Thanks for your reply; I see my Neuro tomorrow & will ask him about spasms in the chest area as well as other areas. In fact, about 3 weeks ago, I got the biggest charley-horse in the bottom of my foot for the 1st time in decades; ouch, did that hurt, & for a few days...and I wasn't on my feet much at all. I do have a hunch tho, based on how I felt & the technicians behavior during my stress/echo, that I didn't do that great. Should have those results soon & deal with it if there is a problem.

[kpsmail]

Last July Ib was diagnosed as having PSP 'It ia about 1 1/2 years.anm whether cot or a chird I do not have spasm or musle problems. My eyes cioses all the time and I walk like a drunkerd. I cough so loud that everyone look at me and I suffer from shoulder pain. I have spondllites.Getting up or sitting is a problen , whether from a cot or a chair. Please advise me to get rid of these

[JudyJ in reply to kpsmail]

Thanks for you reply. The only thing I can suggest is if you're not on muscle relaxers already, to ask your doc for a prescription, and if you are on them, perhaps an increase in in order.

Consistently for the last month, I've been having eyelid spasms, top or bottom lids, either eye. While this is a small thing in terms of symptoms, it is a change & consistent everyday, but not the whole day.

I can realate to the shoulder pain. About this time last year and months in advance of my diagnosis, I started having shoulder pain everyday & thought "now what is this?". My Doc explained that PSP messes with muscles, tendons, ligaments, etc. In fact, I had my right hip replaced - finally - last April. I was born with hip dysplasia & it started to bother me & was painful as a young girl. Didn't know that was the problem at the time.

My hip joint was junk by the time they replaced it. Had several arthroscopic procedures prior to the total replacement. Over the summer months, it started to hurt again; by fall, it hurt as much as it did before replacement. Saw my ortho about it. Injected an anti-inflammatory into the area after x-rays showed the hardware was in proper alignment. He said if I felt relief, it was bursitis. If it didn't, it was the PSP affecting the muscles/tendons/ligaments around the area. Unfortunately it didn't do squat. I was supposed to get my other hip replaced last year but put it off. If the PSP is going to inhibit or negate the positive effective, not so sure I want to put myself thru such a big surgery again.

I can also relate to being in public and people looking at you oddly. Try, try, try, to let it bounce off you. I walk stooped over with a cane like a person 30 years older than me. And my tremors are also worse when in public. My Nuero told me this is very normal with PSP; symptoms will act up when in public and/or when feeling stressed/nervous around certain people/situations. I know the scrutiny of strangers is unpleasant; don't care for it myself. In fact, over these months, I've gotten some of my edge back, and if I find someone staring/gawking at me, I simply approach them and ask "Is there a question you'd like to ask me?". Oh, their reactions are hilarious; try it just once One time I even approached a gawker and said "I hope what you're thinking is 'there but for the Grace of God go I.". She froze on the spot & didn't move for a few minutes.

Sometimes we have to do what we have to do to retain our dignity by being pro-active; doing so may actually make a person become more tolerant to people with differences; it is possible. You hang in there.

[cabbagecottage]

It's my husband who has Parkinsons , but even I get those sort of pains it comes from bad posture .Mine isn't helped by using the laptop and lifting my husband . affects my shoulder neck bones etc . I have worried it might be the heart .

Try neck rolls and shoulder shrugs . they help mine . I also rub in some cooling gel

[JudyJ in reply to cabbagecottage]

Thank you for your reply. My Neuro has me on bedrest but for 3-4 hours a day of light activity, so I have thought of this; certainly makes sense. This squeezing sensation scared the bejeebers out of me, tho. I had my stress/echo last week & got the impression it didn't go so well from what I was feeling as well as what the technicians were saying. Get the results today or tomorrow. If it is a heart-related issue separate from PSP, let's get if fixed ASAP. If I get an "all clear", I'll be absolutely delighted!

[villagebabe]

As a psp patient this is good to know. It is news to me! Lucille

[JudyJ in reply to villagebabe]

I'm very new to this site and thank God for it. I experienced a very lonely, isolated, reality til I found this. I instantly felt like I was no longer alone, and there are many out there in which it's really ok to say how you're feeling about things and what's going thru your mind, vs. the edited version (at least for me) I found talking with my family/friends about this.

[JudyJ]

Thank you for all of your responses; they help.

I had my echocardiogram/stress test on Thurs. I wasn't on the treadmill for but a few minutes and got light headed; they wanted me on it between 9-12 minutes, and to hit my target heart rate of 46-63.

But because is was light-headed, breathing hard, they pulled me off early as soon as my heart rate hit 46, immediately layed me down and re-echoed my heart.

Of course the technicians say zip about what they are thinking and/or observed, but the nurse said the got info diagnostic info. Don't know if that is good or bad.

It will take a week to get the results. I see my Neuro on the 30th. In a perfect world, I'd like to hear my heart is fine, it was just spasms of this that or the other thing that are typical of symptoms of PSP.

I don't need or want any more medical problems on my already full plate, so I'm determined to let it go for the time being so I don't waste a week of good time. With this PSP diagnosis, I've come to realize how much of my energy/brain usage has been spent on worrying. Some of it was justified, some not.

So here's a cheer to a handful of positive days, and hopefully many more

[cabbagecottage]

Hi JudyJ . I have noticed that many other people with Parkinsons seem to have some sort of heart problems . In fact my husband was diagnosed with Atrial fibrillation a year after a he had the Parkinsons diagnosis . Looking back he had been complaint of strange sensations and anxiety/panic . Since he has been taking beta blockers this has eased . He also recently had an Exhocardiogram . They say he has heart failur and damage to one part of his heart . Never rains that it pours does it .. He is managing ok though . Actuallu gong in this weekend for keyhole surgery on his knee . So fingers crossed that will help .

[JudyJ]

Thanks for your reply. Knoweldge is power. I am so sorry tho your husband has these problems; I also know it's hard to be a caretaker. I hope the surgery on his knee helps. You'll both be in my thoughts and prayers.

[villagebabe]

I am writing on my I-pad at 4:10a.m. After watching the clock go round every hour again. Finally figured out last night when I slept but after 3hours of trying to get there that it might be the donepezil tablet causing this and my pharmacy confirmed that I might be correct since that is one of the side affects of that med. What next with this psp? I fell and busted up my quilt rack and bruised my back and broke my favorite bracelet watch which made me real mad cause I liked it so and it kept such good time. I finally got up after many tries. It gets harder and harder to get up. I am losing strenghth daily. W hat should I expect next? Yes, it is good to have this blog to sound off at and I am very fortunate to be at this stage and not further along.

[villagebabe]

Dear Judy, Just got notice of Andreas your latest blog on your hip problems. You sound much younger than I. I am 75 and have had a good life so have many good memories and that is another thing I am thankful for.

[JudyJ]

Yes, I'm 54. Youthful in spirit but my body seems to have aged in dog years

I was born with a genetic disorder in which my hips and knees are malaligned as well with a short foot. My hips/knees started bothering me when I was a tween. My parents never took me to a doctor about it but I don't begrudge them for that.

As to my short foot, it is fine. It's my longer foot that took the beating over my decades. I had to scrunch my longer foot in a shoe that was always too small to accommodate my short foot. Started having problems with my longer foot during my late teens.

But I just kept powering thru life anyway.

However these things caught up with me during the 2000's; had 16 surgeries from 2002 to 2012, mostly orthopedic including 4 reconstructive surgeries on my longer foot.

Yes, this life of mine has been quite a journey, to the good and not so good. Must admit I went thru some periods in which I felt a little sorry for myself, but I'm past that...I hope

I have no regrets tho; if I was presented with the same circumstances, I would live my life the same way again. I've learned much & feel blessed.

[JudyJ]

So it seems my stress echo is normal. A copy of the report was sent to both my Neuro and Internist. During my recent appointment with my Neuro, he seemed somewhat blindsided by the report, read a few sentences, and deferred this issue to my Internist. I admit I haven't called her but I've not heard from her either. So, I've decided to let this issue go for now; there are others that need my attention. Nor have I experienced that 'squeezing' sensation in my chest since those few incidents about 3 weeks ago. Should it start to happen again, I'll take proper action.

One thing my Neuro said & was quite clear about it, there is no known connection with PSP and heart problems, no PSP related chest pain. Just following-up.

Judy