Heart and breathing issues

[roxi]

Hi everyone,

I was wonderig if anyone suffers with similar symptoms? It seems like my heart can cope with the smallest of efforts. As soon as I get up from the bed my heart is beating fast, I take one step and I am already out of breath, its ridiculous. Not to mention the terrible malaise that I feel when I sit up, the dizziness, disorientation, trembling etc.

But its the heart and the breathing that I cant understand. It seems that my heart and lungs cannot take even the smallest of efforts without going mad. I cant even tolerate to sit up on a chair without feeling very ill.

Is this part of ME?

 

[dejurgen]

Is this part of ME?

Unfortunately, it sure is. I had that too at worst.

Many patients refer to "air hunger" for the part where breathing is vastly insufficient for doing the most basic of tasks. It feels like suddenly someone reduced the oxygen content in air from 20% to 10 or 5%.

Unfortunately there is no quick fix for both problems. Some find things that help and get somewhat better, others don't. I'm sorry to have to say that goes with having ME.

 

[roxi]

Thank you very much for the input.

 

[Issie]

Look into POTS. Sounds like a dysautonomia condition.

 

[Merida]

Thank you very much for the input.

Roxi, have you been bitten by a tick, or live in an area where ticks are abundant ? I agree with Issie - check out POTS and dysautonomia. This might lead to some treatment. But also, Lyme Disease can be associated with dysautonomia. I also have dizziness when I get up and down. And spike high blood pressure when I stand, but not as ill as you are. Hope you can get to a knowledgeable doctor soon. Check out Dysautonomia International - they have a doctor list. Hugs.❤️

One more thing, I wake up very dehydrated, so first thing I drink some Gatorade or something similar. Another thing - although I am positive for Lyme since 2010, my original dysautonomia symptoms were from a neck ( atlas/ axis vertebrae) injury that knocked my neck completely out of whack. As my neck got better I got better. So, what happened just before these symptoms started? My son had symptoms after well documented EBV infection.

 

[roxi]

I dont recall being biten by a tick. I definatelly had epstein barr , i did a blood test and it was there. As in regard to any other tests, GPs dont really suggest any, and frankly it stressess me out so much to go and ask for tests myselfand be refused, that I just gave up.

Lord, this ilness is so puzzling..

 

[Issie]

You can do a poor man's tilt test and see if its POTS without seeing a doc. You will need help to do it. An auto blood pressure cuff and a pulse meter and someone to watch the pulse meter when you stand. Do a search and you can find how to do it. Not able to write instructions out right now.

 

[Merida]

I dont recall being biten by a tick. I definatelly had epstein barr , i did a blood test and it was there. As in regard to any other tests, GPs dont really suggest any, and frankly it stressess me out so much to go and ask for tests myselfand be refused, that I just gave up.

Lord, this ilness is so puzzling..

I think about 80% of adults have had EBV, so it is puzzling why some get well or have no symptoms, while others get so ill. Yes, this is very hard - finding a doctor who takes things seriously, is knowledgeable, and ready to help. But to make progress, it is critical to have a good doc to follow you and help. Many of us have thyroid issues, or autoimmune conditions. Critical to be checked for those. Believe in yourself and what you are observing. Make a log of symptoms if you are able. What part of the country are you in? Maybe someone here can help find a good doctor if yours is unresponsive.

 

[roxi]

Hi, Merida, I live in Gloucestershire,Cam. I have been checked for Lupus Erythematos , which my mother has, but apparently I dont have it, altough my ANA test is positive and that test that shows autoimmunity in thyroid came up high also( cant remember the name). Im sure there is some sort of auto imune thing going on, even this week I am feeling so ill with inflammation, I feel inflamed from top to bottom,including my brain and my eyeballs! to the point of almost vomiting, I feel absolutely awful. I dont even know what set off this episode, I wonder if it is the clouds/dark weather?

Does anyone feel this terrible malaise, like you would have been poisoned? I dont even know how to explain it, its just terrible.

On a positive note, I have asked to be checked for POTS and I have my appointment on 1 October.

 

[dejurgen]

Does anyone feel this terrible malaise, like you would have been poisoned?

Yes, I often (did and sometimes still have). In the mornings it was worst. It felt as if my entire body was poisoned. Plenty of nausea, confusion, weird experiences.

I now learned it is probably orthopnea in my case. The bad shortness of bread causes a sort of "blood poisoning" that increases the longer I lay down. While it seems to be the opposite of POTS, many patients can have both in a mix of varying strength IMO. I do have Orthostatic Intolerance e.g. problems while standing up but orthopnea is the bigger issue with me.

A key feature of orthopnea is having to breath more and more until reaching the worst part of the night. In the morning this overbreathing is often reduced so one has to observe when waking up. The clear nausea however is bigger with me in the morning. What helps me is to not lay down too long. When I wake up I get up, go to the toilet and walk a bit before laying down again. Just sitting 5 to 15 minutes on a chair can help too.

When not waking up during the night, having a feeling as if a truck ran over your chest can be an indication you overbreath during the night too.

 

[roxi]

Dear Dejurgen,

Thank you for getting back.

Strangely enough,lately I dont have the nausea as much as I used to, it used to be daily. But the malaise is as you said more like in the chest area, in the upper body, plus the whole body inflammation. And because of it and probably POTS, i cant stand up or even sit in a chair, im just too ill, so laying down is the best...

Im glad to hear you are feeling better, thank God that some of us improve.

 

[roxi]

You can do a poor man's tilt test and see if its POTS without seeing a doc. You will need help to do it. An auto blood pressure cuff and a pulse meter and someone to watch the pulse meter when you stand. Do a search and you can find how to do it. Not able to write instructions out right now.

Thank you,Issie, thankfully I have asked for a POTS test and my GP was happy to refer me, although the appointment is on the 1 of October.

 

[dejurgen]

Dear Dejurgen,
Strangely enough,lately I dont have the nausea as much as I used to, it used to be daily. But the malaise is as you said more like in the chest area, in the upper body, plus the whole body inflammation. And because of it and probably POTS, i cant stand up or even sit in a chair, im just too ill, so laying down is the best...

Some POTS patients do better when lying on an inclined bed. I think it might have to do with having a major POTS problem and a smaller orthopnea-like problem. For me, lying on an inclined bed however makes my back hurt more and keeps me more out off my sleep. I don't find it very convenient neither.

That whole body inflammation, would it by chance be a sort of "glowing (warm sensation) acidic like burning sensation" that is "spread out over the body" in a sense that it is not truly dense? With that I try to describe that it is sort of like it feels like plenty of small drops of acid being sprayed in traces. Still it's a bit difficult to describe. I mean it doesn't feel like a solid block of inflammation. A bit like what I got as a healthy person when running in my muscles.

 

[Issie]

I now learned it is probably orthopnea in my case. The bad shortness of bread causes a sort of "blood poisoning" that increases the longer I lay down. While it seems to be the opposite of POTS, many patients can have both in a mix of varying strength IMO. I do have Orthostatic Intolerance e.g. problems while standing up but orthopnea is the bigger issue with me.

A key feature of orthopnea is having to breath more and more until reaching the worst part of the night. In the morning this overbreathing is often reduced so one has to observe when waking up.

When not waking up during the night, having a feeling as if a truck ran over your chest can be an indication you overbreath during the night too.

I have this same feeling and also have sleep apena. But what you describe here, happens even with a CPAP. I also can't lie on my left side as it causes heart pains and I feel even more like I'm smothering. I do have to sleep elevated. Partially because I think it helps to drain lymph and fluid. With some POTS people there is issues with brain drainage and gravity helps that. Lying flat, I can't do. Even for MRI. They have to elevate my head and upper body.

 

[Issie]

Thank you,Issie, thankfully I have asked for a POTS test and my GP was happy to refer me, although the appointment is on the 1 of October.

In the mean time, read up on it and do the poor man tilt test. You will have a better idea what you are dealing with and what to expect. Most of us found having our testing done in later afternoon shows more accurate readings, because we are more tired. Also there are medicines and herbs you need to come off of for at least a week before testing. You want an accurate baseline. Also, dont over hydrate. That can make it not show up as well.

 

[Issie]

Also make sure you aren't in mold exposure. That can give alot of the symptoms you have. Look up CIRS.

 

[Issie]

There are also 2 kinds of apena. One is because the throat relaxes and collapses and air is obstructed. The other is central. The brain doesn't tell you to breathe. You can wake gasping as you haven't been breathing. I have both types apnea.

 

[Merida]

Hi, Merida, I live in Gloucestershire,Cam. I have been checked for Lupus Erythematos , which my mother has, but apparently I dont have it, altough my ANA test is positive and that test that shows autoimmunity in thyroid came up high also( cant remember the name). Im sure there is some sort of auto imune thing going on, even this week I am feeling so ill with inflammation, I feel inflamed from top to bottom,including my brain and my eyeballs! to the point of almost vomiting, I feel absolutely awful. I dont even know what set off this episode, I wonder if it is the clouds/dark weather?

Does anyone feel this terrible malaise, like you would have been poisoned? I dont even know how to explain it, its just terrible.

On a positive note, I have asked to be checked for POTS and I have my appointment on 1 October.

Roxi, a thyroid problem can show a entire spectrum of symptoms. And EBV is known to attack thyroid. Check out the site : Stop the Thyroid Madness.

 

[Merida]

I have this same feeling and also have sleep apena. But what you describe here, happens even with a CPAP. I also can't lie on my left side as it causes heart pains and I feel even more like I'm smothering. I do have to sleep elevated. Partially because I think it helps to drain lymph and fluid. With some POTS people there is issues with brain drainage and gravity helps that. Lying flat, I can't do. Even for MRI. They have to elevate my head and upper body.

Issie, Do you have central sleep apnea? I also can not lie on left side - start to feel anxious, pressure in head, start sweating. Feel awful, must change position. Don’t you think this is a clear sign of a structural issue?
I was fine, could lie in any position until the chiropractor twisted and jerked my neck and pelvis - was bed ridden one year.

My opinion : A certain group of people have a torque in the dural tube from the sacrum to the brain. Scoliosis may be related. Research ( years ago) published by Habsasuta, Tubbs, Oakes neurosurgical team found off midline fusion of the filum ( in the sacrum) in 3 out of 27 normal cadavers - 11% ! I think that an off midline fusion may cause this torque, which results in the sacrum and upper neck rotating and moving out of alignment. Injury and poor quality connective tissue increases the problems of misalignment, tension on the cauda equina, Spinal Cord, and restriction at the skull base/upper neck. Oh well. Who the H**** cares?

 

[Issie]

I have central and obstructive apena. I also have a very slight heart murmur. But mostly have POTS along with MCAS and EDS. I do think there is structural problems. I'm very tall and a little too fluffy and that doesn't help any of those things. I think because my spine is trying to stabilize me with my connective tissue disorder it has created spurs and calcification on nearly every vertebra. I have bulging disk and some spinal compression. It also didn't help that I broke my back. So with me there are real issues with structure. However, I think because of EDS, things may internally shift when lying on my sides and that may contribute to the issues. They say left sided pains can be due to mitral valve issues and I do have a very slight leak there. I have also found if I make sure to use my mast cell medicine before bed, I have less heart pains, breathing issues and better sleep. I do have to get my head up and cannot sleep flat. Hubby recently got me an adjustable bed and it makes a huge difference. Worth saving money for, in my opinion.