posted
Since I got back from a hospital stay in December, I have been devastatingly ill (which I posted about before so I won't go into it). I'm totally bedbound except for trips to the bathroom, can't speak out loud as I get too winded, and cannot be around people as it's too exhausting and makes me worse. Most days I don't think I'm going to make it and it's seriously depressing. I'm trying to fight my way out.
Anyway, my shortness of breath and chest tightness are just really bad lately. Essentially, I'll do a small thing, generally go to the bathroom since that's my biggest exertion, and my chest gets super tight, I can't breathe, and it stays like that often for hours. I use supplemental oxygen which helps somewhat. I don't know what else to do or try at this point. There is definitely a sense of oxygen starvation that is pretty intense and awful.
It's definitely not "air hunger" which I have had with babesia and that feels different. This feels pretty obviously cardiac to me.
It's the worst when I wake up for two hours or so and then starting around Midnight it gets really brutal. It's frightening to go to sleep like this.
Do others have this? What do you do? Did treatment help?
I had stopped my bartonella treatment temporarily and was hoping restarting would help, and it still might as I just restarted a week ago and so far so good. But right now I can't breathe.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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posted
If I were you I would get my heart checked out. Chest tightness and breathlessness can be a sign of heart attack.
Please get checked out immediately.
-------------------- Judy G. Posts: 122 | From Minnesota | Registered: Dec 2008
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
I would agree with Judy.
The tight chest and shortness of breath were some of my first symptoms,, and they did get so bad (after taking the anti-anxiety meds the doctors gave me) that I went to the ER.
Twice.
I finally got a referral ot a cardiologist, but of course they didn't find anything.
Anyway, I would say that if you haven't had a cardiologist evaluation yet, that would be the first thing to do. Just to be safe.
My symptoms really haven't gotten any better, but I at least don't have the worry about it being my heart.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Are you being treated for the positive tilt table test results they found?
The fatigue and shortness of breath are symptoms of OI for me. Also fast pulse rate, dizzy, anxiety and many other symptoms. I assume they checked out your heart pretty well while you were in the hospital?
If you are not being treated for the OI, please get someone who will treat it for you. It can make a big difference in ones ability to be up and about and in many symptoms. If you are being treated, you may need some medication adjustments.
You may need to be worked up for other conditions that cause the symptoms you are having like asthma or pulmonary hypertension if you are already being treated for the OI. Sometimes it takes medication adjustments to get the OI stabalized.
Get yourself a blood pressure monitor (manual - all one piece, the elctronic ones don't work well if you have a volatile bp) and check your bp and pulse and keep notes so that you can present them to your doctor.
Take your bp while you are laying down, sitting and standing. While standing, it's best not to move your legs around because that can increase your bp and pulse.
Feeling the way you do and knowing that you have OI, I'd insist that my doctors find something to treat it.
Research those symptoms in Chronic Fatigue Syndrome to get a better idea of the symptoms and treatments.
I hope you feel better soon.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
I was not able to tolerate the OI meds (Midodrine or Florinef) unfortunately, but I really don't think my main problem right now is OI. I'm not saying the OI isn't bad -- it is. I've had CFIDS for years before all of this, and OI has been a constant thread -- my docs had basically assumed I had it long before the tilt table test because of differences in lying down, sitting, and standing bp and EKG readings, so the test at the hospital was kind of confirming what was already known. But my recent symptoms feel very different from the OI I've had for so long.
I did have a full cardiac workup but am totally homebound and can't even leave my bedroom at this point, so I can't get more tests. I do have a phone consult with a cardiologist coming up so hopefully that will be helpful. I am now a little freaked out though about the heart attack possibility -- argh. I did not show signs of a heart attack at the hospital, however, but a lot of these symptoms got worse after that.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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