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Breathing Difficulties & Need to Vent


funnyfrog
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Hi Everyone - I just wanted to know if any of you have the same problem I do from Pots - This seems to have gotten worse over the past 2 months, even though I am on same meds as usual and not doing anything different. I have had POTS since March,2002 as well as MVP and Epstein BaRR Virus. I had an appointment with my family doctor this past Friday and about 1/2 hour before I left to go there I climbed the stairs in my house and of course, was having problems with shortness of breath when I arrived at his office 1/2 hour-45 minutes later yet. One of the meds I am on is beta blocker pindolol to keep my heart rate down and even on it, my heart rate was reading 92 in his office-usually the pindolol brings hr down to about 60-70 range for me. My oxygen level was fine, 99 percent and he did an ekg which of course, was normal. This led, to the part that I need to vent about that really irks me, he then asks me- Maybe I am anxious - Would he like me to prescribe a small dosage of zoloft(I think that was the med he said)? This led to a discussion of no, I am not anxious, I am just having trouble breathing when I am walking stairs or doing anything overly physical. I can't exercise, which I know means I am not very conditioned, but as soon as I start exercising, even sitting down, I am short of breath within 2 minutes if not less and dizzy. I have an appt with the e/p cardiologist on 11/15 to make sure my ticker is doing ok ;) and my family doctor said he will put a holted monitor on me on oct 28th for 24 hrs to see if my heart is skipping lots of beats or doing weird rhythms that the EKG didn't pickup. I am a relaxed person, not anxious at all, but every time that my family doctor comes to the conclusion that if he doesn't see whats causing my problem "it must be anxiety" I feel like he thinks I am a nutcase, which I may be :):) ,but not because of anything POTS related, I was always a wisea__ before I was sick. Anyway, I feel better, just needed to vent. Unless you have POTS, you can't understand this - I tell my husband what he said, but I figured you all could sympathize a little better. Anyway, have a good Monday night and thanks for letting me vent. P.S. GO YANKEES!!!!!!!!!!!!!!!!! Signed, NOT ANXIOUS IN NJ :huh:

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I haven't been able to breathe since day 1 of POTS. Mine is constant, not just on exertion, but at rest too. The only thing that makes mine better even a little is lying flat. I feel best breathing in the a.m.

I don't have much to offer but can at least empathize. Don't plan on finding out the cause of the breathing difficulty anytime soon ... I've had it for 11 months and have had heart tests, lung tests, scans, etc. Nothing shows any problem except the pulmonary function test is slightly off.

Amy

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Hi Amy - Thanks for your answer, atleast I'm not alone - I am sorry to hear that your breathing is so bad - As you can see from my being up at this hour of the night, my sleeping pattern isn't so great either- I think its all those catnaps I seem to take without trying during the day. One minute I am awake, and poof, the next thing I know, I wake up on the couch an hour and a half later - AAh, life with POTS ;):huh::) I hope your breathing does get better, I will try the lying flat when I get a breathing episode after walking up the stairs and see if it helps. Have a good night!! Beth

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Dear Funnyfrog,

I could write a book on being SOB. It is one of my symptoms that is nearly constant and at times down right *!*!*!*!*!*, if you get my meaning. I also have had several "normal" tests. One test that did come back a little off was a nuclear infusion/lung profusion study. It was like my ribs don't expand right and they are stiff and sore. That was what they said anyway.

As to being nuts, I chop it up to being misdx'd, misunderstood and "poorly" treated by the medical community. I was and still am never one to just give up the goat as it where. I have fired more than one doc and told them exactly why they where being fired. I've made very few friends in the local medical office, but the few that have gotten the message treat me alot differently.

Blackwolf

PS. I also can't seem to sleep. No cat naps, just can't sleep.

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:huh: Blackwolf, When do you get any sleep and how do you function at all? You must be exhausted. I am going to try to go to sleep in a few minutes. I hope you get a little sleep tonight. Sweet dreams. Thanks for your reply - I appreciate your words of wisdom - you made me laugh also about firing some of your doctors. Laughter really is the best medicine I know - Thanks!! Beth
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I think most of us, at one time or another, has had the SOB issue (among others) put down to anxiety. I have concluded that the main source of anxiety in this whole thing is... DOCTORS!!

It is frustrating when we spend days at a time panting, and are told there is nothing wrong with us, and all the while we feel starved for oxygen. Let one of these doctors feel the suffocation we do.

In my case - and I know i'm not alone - something as simple as rolling over in bed will leave me panting for air. While I was still able to work I would be sitting at my desk and suddenly some of my co-workers would appear. It seems I would become short of breath and start panting; they were worried about me!

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You're definitely not alone on the shortness of breath issue. My primary keeps telling me to exercise and I keep telling him that I can't even climb a flight of stairs without dropping from suffocation.

I was on a hike earlier this year with a doctor friend of mine and he couldn't believe how winded I was just trying to climb up a hill. I had to stop several times just to catch my breath, it was humiliating and I tried to hide how SOB I really was.

I definitely think that this is one symptom that the docs haven't truly figured out yet and they don't realize how bad it is. Another case of not really listening, not trying to figure it out, which equals anxiety, stress, yahdyyahdyyah, same ole doctor crap.

I get these horrible pains in the center of my back, usually worse with inspiration. Sometimes it's just hard to take a breath even at rest because the pain is so sharp in the rib cage.

I give up trying to figure it out and just try to live with it.

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Briarrose, I get those pains in my back too -- between my shoulder blades. I swear it's heart pain because of how deep it feels.

I agree -- the only stress I have is the fact that our bodies do things that can't be explained medically or scientifically. I am learning to accept this to some degree. You can only blame doctors so much -- they are like us: They only want an answer. When they can't find one, they feel as though it must be mental. I found an article online a couple weeks ago written for a medical audience that contended 85% of people who complain of fatigue or dizziness at their family doc's office actually have a mental disorder. It then said fatigue was the No. 1 complaint at the doc's office. Now, that would mean the vast majority of people walking around have a mental disorder, and I really doubt that. Seems to me it can't be a disorder if it's happening to the majority.

Anyway, just commiserating!

Amy

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Amy

Yeah!

Someone else that has the exact same pain between the shoulder blades. I had it so bad in December that I went to the emergency room with it. I spent around 14 hours there getting tests, guess what, they never found anything, ugh. But the pain was so bad that even with tons of narcotics it wasn't completely gone when I left the department but I wanted to go home. That was one of my scarry POTS experiences, pain so bad.

I can't believe someone would right an article like that, do you remember what magazine? I want to write them and give them a piece of my mind. Spreading that kind of mentality around is why we struggle so much trying to tell our stories. It's also why there are 1,000's of people at home lying in bed sick (probably with POTS) and they might never be diagnosed because their told they have a psych disorder. This topic makes me angry :blink:

steph

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Absolutely know how you are feeling. This is my most aggrevating symptom. I used to run five miles a day. Then one day in February 2003 I felt like I could not expand out. Basically I could breath to a certain extent and then my diaphragm and muscles making my lungs work would just not cooperate. I have to make a conscious effort to take deep breaths. I have had all the tests, they are normal too. I am attorney and a young woman, therefore they blame it all on stress. Of course there is a reason that I cannot walk up to the top of Beacon Hill (where I live) (Sorry but GO SOX!) or run or walk up a flight of stairs without shortness of breath, and believe me I am not anxious everytime I do these things.

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Too Young,

Your story sounds very similar to mine. I'm a lawyer too, and all my tests have come back normal except for the tilt test. I was in great physical shape when I came down with POTS earlier this year. And doctors have also tried to blame my condition on stress. So frustrating!

There is one thing we don't have in common. Unfortunately, you're a Red Sox fan. GO YANKS!!!!!!!

-Rita

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Hi Too Young & Rita - So who do you think will win? Even though I'm a Yankee fan, after these past few nights, well, they deserve to lose, sorry-I guess I am not a very good fan :) - Anyway, did either of you doctors say your breathing was anxiety also? I hope one day that someone figures out the relationship between this POTS & Shortness of Breath issue so we do not all seem crazy and have an easier time just doing everyday stuff. Beth

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Well it's official the Red Sox made history.

Yeah the doctors seem to want to blame everything on stress. Whenever they ask if I have a lot of stress in my life I say well only if you take into a count I have seen probably 20 doctors over two years (as I am sure many of you have seen more) and no one can figure out what is wrong. I guess maybe that causes some stress. They don't usually like that answer.

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