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Couldn't Get Enough Air While Outside Today


Maxine
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Today I went out for a brief errand-----one to get my husband something for valentines day at our local Hallmark, and then two doors down from there is a Kroger---grocery store, I went in to get some cash, and a bottled water.

We have a snow storm, and I thought I better get out before it gets out of control. It's really cold---about 14 degrees. After going to Hallmark I was trying to decide if I should walk down to Kroger, or get my car and park closer. I decided it would be more work to get the car and park closer because the Kroger and Hallmark only had one store between them. But with POTS that can seem a very long distance.

All I did was walk down to Kroger go over to the cash registers buy a water and a bag of teddy grams---and get the cash. I headed for the door, and thought---I'm not going to make it back to my car. I just couldn't get enoguh air. Once I got to the car I drank a lot of the water, got my bearings and drove home---less then a mile away. When I got home I saw our garbage cans blowing all over the place--(garbage day today). I dragged them back to the house------I could barely make it.

Do any of you get like this----especially in the cold weather. It feels like congestive heart failure---like there is no air, or enough blood to pump. Now---I know this sounds drasitc, and only a person with CHF knows what this really feels like, but I just felt 90 years old (I know I don't have CHF). My spine has been giving me extra problems lately, and it seems the more pain I'm in the worse my other symptoms get---even when I take something for the pain. I just get very weak.

I'm using ICE and tylenol for the pain, and of course either wear my hard cervical collar, or lay down to get the weight of my head off my neck. I don't tolerate pain meds well, but thinking of trying ultram to see if I can tolerate that. I'm waiting for this bad weather to pass. It's so frustrating how sensitive our bodies are----it makes it difficult to get treatment to help us feel better.

Maxine :0)

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Oh yes, all the time. I'm not well enough to go out but even just searching in a cupboard for something does this to me, or the stairs but I've only used the stairs a couple of times as I can't manage them. It's so frightening, feels like you're going to stop breathing or something.

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I always have problems with my breathing. Their was a period years ago that i couldn;t even speak cause I had no air in my lungs. Had all kinds of test done and nothing was ever found. But I can tell you that it was a horrible experience. From time to time I still get that feeling of total breathlessness. Don't know what to attribute it to. I just know that it's all apart of dysautonomia.

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Thanks for the replies--- :P

I get this a lot in the cold weather, but it's not like an asthma issue where my airways feel restricted. It's like I don't have enough air along with extreme sudden weakness.

I know that with all I have going on lately things might sound a bit dramatic. However, it's unfortunate that I don't have the local Docs to help me with my neurological issues related to my spine/brain stem compression. I have a local neurologist who is trying to help, but she really isn't familiar with the type of spine/cranial instability issues combined with the EDS and what symptoms can be caused. She is basically watching the lesions that were found on my recent brain MRI, but she is not dismissive about the other problems, she just isn't very familiar with them. She is willing to speak with either surgeon.

I was told by the neurosurgeon in NY that I have brain stem compression related symptoms----i.e.-----., trouble swallowing, choking on liquids, sleep apnea, and BREATHING ISSUES---ect.

I hope my breathing issues do not increase---I just don't want to be put into a position where I'll have no choice for surgery----------(cervical/cranial fusion). I was told that I need this surgery, but with the EDS causing so much instability with my spine------------well, lets just put it this way, I'm not ready for a big surgery like that right now.

I hope this is just part of the dysautonomia, but I have not really had this until the spine instability increased.

But---it could be that the instability is making my dysautonomia worse also, so either one of my issues can cause breathing problems.

I need to complete the sleep study with the c-pap machine. I'm told I only have a 41% sleep efficiency--------NOT GOOD. Although I had 51 respiratory episodes in 3 hours, my body works hard to compensate, and my oxygen levels were not bad at 91%. However, this means I wake up with almost every respiratory episode to compensate---thus the 41% sleep efficiency. This means my apnea is moderate to severe.

This probably doesn't help with the breathing issues, and the night before my breathing problem I only had 5 hours sleep----which probably only means 2 with my apnea. I always get so much worse when I don't sleep well. That's ODD to say-------because on the nights I thought I slept well-------------apparently I wasn't, and didn't know it. I just don't fit the "apnea" picture, and I thought the chances of me having this was low. But it makes sense that neurological issues can cause this.

Ok--I have talked enough here.... :wub:

Maxine :0)

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Maxine,

Yep, I have the breathing issues too. This was actually the first symptom I had that sent me to the doctor. I was a year-round swimmer, so it didn't make sense that all of a sudden I wouldn't be able to catch my breath. All of the tests showed that I had an excellent heart and that my lungs had 120% the lung capacity for most girls my age, height, and weight. So I was certainly not out of shape. Eventually we found POTS and other autonomic dysfunction. Shortness of breath continues to be a problem for me. Only unfortunately now it can happen when I'm just sitting. I no longer have the luxury of swimming a mile before I get short of breath.

I hope that this doesn't become a big problem for you. And I hope you feel a bit better soon.

Take care,

Rachel

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Hi Maxine,

I have been having episodes like this and I know it can be scary. What I do these days is wear my HR monitor whenever I leave the house. I look down at it from time to time and if my HR is high I know to sit down and take a break, take a little extra beta blocker and/or just go home. I think it is important to try and pace yourself - even if your symptoms aren't tied to your heart rate, you know your own triggers. Hopefully this horrible winter will be over in a couple more weeks!

-Rita

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Thanks again everyone!

Lois, I see a pulminologist--- :unsure: He is the doctor who ordered the sleep study on me.

I do think the cold weather has something to do with it, but I get it other times as well, but lately it seems to be a bit more often. It's probably part of the exercise intolerance, and I don't think the spine issues help much either.

On March 12th I see the lcoal neurologist, March 30th I'm seeng a Doc in regards to my lead poisoning issues---(they had found high levels of lead in my urine in March 2001), however, the follow up blood test showed normal levels---(but the blood life for lead poisoning is only 35 days). The followup urine test showed normal levels also, but the test was not done properly. So basically this sitll leaves question in my mind considering I was around a lot of chemical fumes at my employer in ---(the fumes seeped into the ventalition and came into the front office).

I will be bringing my breathing issues up to both Docs, and of course I will complete the sleep study to be fitted for the c-pap machine.

In June I'm seeing another ANS specialist in Cleveland------------I simply need more ANS testng other then a TTT----- that's all there is too it-- ;) Hopefully they can see if these breathless spells are caused by the dysautonomia or not, so I can rule in out other other causes.

Maxine :0)

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