Jump to content

New Here, can't cope.


Guest CyberPixie

Recommended Posts

I havent been checked for Asthma, every time they check my oxygen level it is normal. I told them that I am afraid to go to sleep, afraid that I wont wake up. On my last MRI they had to keep telling me to breathe normally they said that I was holding my breath. I told them that I was not doing it on purpose, it just seems to happen. Sometimes it seems it takes all the strength that I have just to make my lungs work. I am so tired all of the time and tired of Doctors who know nothing about this disease, or whatever it is called. I try to stay in a good frame of mind for my family, because it is very hard on them seeing me like this. They are used to me helping everyone else, always on the go. I used to be a very active person, now I dont even feel human. But for their sake I will keep up the fasad. :angry:

Calypso, Have they checked for asthma? sorry i realise that sounds really darn obvious but you never know. I suppose with all those tests they would of.

I find i hold my breath when i do things where i have to concentrate. I vaccumed yesterday and got dizzy and realised i was holding my breath. So now i pay alot of attention to my breating too! ... we can be subjective together :)

I have found the muscles around my chest get really tight so it takes alot of energy for me to take breaths when my mucles are weak and tight. Massage of the lungs/shoulders/sides really makes the world of difference for me. I realise it may just be my wierd body but thought i shuold mention it just in case for some reason it did help you.

Link to comment
Share on other sites

Welcome and sorry you are feeling so badly. I sometimes have the tightness in my chest and feel like I can't breathe. I had a pft done and it comes out normal though my chest feels like it has a band around it, tightening all the time. I also have almost 24/7 adrenaline rushes and it gives me flip flops in my stomach, sometimes makes my heart race for no reason or just hangs around and my heart jumps all over the place when moving around. I also have MVP and the heart itself does not cause the problem it is the ANS/dysautonomia that causes it. I have extra beats(pac,pvc) every day but it comes from the dysautonomia. So please try not to worry that there is something seriously wrong with your heart. It may be a good idea to have an echo and you can be sure but most if not all of the symptoms are usually due to the dysautonomia.

Wish I could give you some clues but I do send tons of support and well wishes to you. :angry:

Link to comment
Share on other sites

I have had my heart checked inside and out and the only thing that they have found is I also have an extra heartbeat and I keep having pvc's and pac's, my cardiologist told me that it was normal. I wanted to scream at him that if it was normal they would not have a name for it. But other then that my heart is ok . It did sustain a little damage when I had the mini stroke, but not much. I hope! I will just keep plugging away and trying to find decent Drs. which around here is next to impossible.My blood pressure has fallen as low as 68/35, that night I landed in ICU, I was smart though. I got copies of my vitals from the hospital from every time that I was in the hospital. It was surprising how many times that my blood pressure was extrememly low and the nurses or doctors never said a word to me. But this web site has helped me so much. I know that the people here know what I am talking about. I don't sleep much, so early in the morning I get on the internet and go to Dinet, I think a lot of it is for comfort. Some of it is trying to take control of my lifel. This web site has helped me. I'm glad that I found it . :)

Welcome and sorry you are feeling so badly. I sometimes have the tightness in my chest and feel like I can't breathe. I had a pft done and it comes out normal though my chest feels like it has a band around it, tightening all the time. I also have almost 24/7 adrenaline rushes and it gives me flip flops in my stomach, sometimes makes my heart race for no reason or just hangs around and my heart jumps all over the place when moving around. I also have MVP and the heart itself does not cause the problem it is the ANS/dysautonomia that causes it. I have extra beats(pac,pvc) every day but it comes from the dysautonomia. So please try not to worry that there is something seriously wrong with your heart. It may be a good idea to have an echo and you can be sure but most if not all of the symptoms are usually due to the dysautonomia.

Wish I could give you some clues but I do send tons of support and well wishes to you. :D

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...