Suggestion for People SOB

[futurehope]

I haven't been able to read each piece of each post on this forum, but I have a suggestion for people who have breathing difficulties. It is something I would do in a similar situation. If you had the "usual" breathing tests and there is still no reason for your shortness of breath, you can suggest to your doctor having an Achr antibody test done. It's a blood test that checks for an autoimmune disease - myasthenia gravis.

I realize that I'm no doctor and am unknowledgeable about many things, but breathing is a major body function.

I really took my time deciding whether I would post this or not. I do not want to scare anybody.

The reason I decided to post is, it seems like it's way too easy to blame everything on POTS or NCS and leave it at that without pursuing other possibilities for a particular symptom.

Since much is still unknown about why some people have POTS, I think it is important to keep in mind that there are other medical conditions out there that could be causing symptoms and it would be prudent not to get too complacent about the cause of a symptom - especially if you are feeling uneasy about it.

I hope I have not offended or scared anyone. And I wish everyone the best.

[Dawg Tired]

Mine was negative. My GP explained the SOB was from not geting enough oxygen to my brain. My brain then tells my respiratory system to breathe faster to get oxygen, but of course, due to poor circulation my brain still doesn't get all the O2 it wants so it is a vicious circle.

[LisaColumbus]

I'm curious as to what everyone considers SOB. Is it gasping and you can't get any air? Is it feeling like you just jogged around the block? Do you get SOB just sitting still or is it with activity? For me, I get SOB (feels like I just jogged) after walking up two or three steps or if I walk to quickly from the couch to the bathroom. I have also noticed that I don't get the SOB while I am actually moving, it happens once I stop moving.

[MomtoGiuliana]

I think that's fine to put forward your ideas!

What I get sometimes is this sensation that I cannot take a full breath or a feeling of heaviness--like my lungs are filled with glue--is the only way I can describe it. It is generally independent of level of activity. I can be very active and not have this sensation, then later be sitting down and it comes on. I also go months and months without it at all, and then it comes back, generally accompanying other POTS symptoms. I have come to the conclusion that this symptom in my case is POTS-related, although it would be nice to understand what exactly causes it.

I used to get slightly SOB after eating. This especially happened during pregnancy for me. I could not talk and digest food at once without having to stop to take extra breaths. This doesn't happen to me at all anymore.

Katherine

[futurehope]

Gayla,

I'm sure you're comfortable with your doctor's explanation and I'm glad he gave you one.

Unfortunately, if I don't ask my doctor to check for specific things that could be causing my POTS, he doesn't. I've never been to the "big" ANS centers like Vanderbilt, Mayo or Cleveland clinic, so I rely on info from this forum and website to guide me in asking my doctor questions.

Lisa, to me singing sometimes cause me to feel short of breath. It feels different than when I used to sing and didn't feel that way. Sometimes, just talking makes me feel that way. It's kind of feels like you're out of breath for no identifiable reason. For me, it doesn't last very long. I just stop doing what is making me feel that way. I guess it's like being more out of breath than you would have thought for a particular activity.

[Dawg Tired]

Singing makes me pass out - the famous Valsalva Maneuver. Standing in church then bowing my head to pray puts me on the floor also.

What causes my SOB? Sometimes I get it when I am just sitting in a chair. Turning over in bed... Walking.... Different things at different times.

[calypso]

If you're having to think about how or when to breathe, I consider that a form of shortness of breath. Sometimes, that's how I feel. Other times, I feel winded -- like I jogged around the block (but without the jog, and without the increase in heart rate). I also get the heaviness/lungs full of glue feeling. That's a good way to describe it.

I have had this nonstop -- this was my first ever POTS symptom -- and would rather have this fixed than the tachycardia. I can deal with my heart racing, but breathing should be a natural, unforced thing. I also had the MG antibody test and it was negative.

Thanks for the idea, though.

Amy

[futurehope]

Another thought. (Uh oh, that could be trouble )

Since I have been frequenting the myasthenia gravis forum, I've noticed that several people have come back negative on the Achr actibody test, yet they display muscle weakness or other symptoms of MG. They sometimes are being treated with medication as though they have it. I only know of Mestinon though there are other more potent ones that I am not familiar with.

I'm going to try to find a website that list symptoms so that you can look them up if you want to.

Again, I'm not trying to get us all to be hypochondriacs. It's just that it's too easy to sit back and not pursue reasons - especially if they are treatable.

God bless.

[morgan617]

I actually did get tested for it, but as usual, a negatory, although sometimes I wonder. They send most of my tests all the way across the country and sometimes it would be interesting to know if they were packed right and stuff, you know? I do think about these things sometimes...how sad, to be somewhat disappointed by a negative result...sigh, but it's also interesting to be such an odd duck sometimes I guess.

I noticed I have almost completely stopped the shortness of breath since getting potassium on a regular basis. Is that not odd...morgan

[futurehope]

Morgan,

Why would they send your blood samples across the country, and how did you find that out?

[calypso]

Morgan,

Are you taking a potassium supplement or getting IV potassium?

Amy

[morgan617]

Geez, sorry guys, didn't realize you would have questions, how rude of me...

I know because when I get copies of my results, they are done at Mayo in Rochester, or California or some other weird place. I do not know why, except maybe we do still drive around in covered wagons out in the pacific northwest.

AS far as my potassium...I've had both IV and oral, but am on a consistant oral dose.

At my first paralyzing collapse/syncope, when I went to the hospital, my potassium was 2.6, which is considered severely low. They gave me oral and sent me home of course.

My pcp has kept me on it ever since, because when I don't take it, my K+ will drop within a day or so. I may have periodic paralysis, but the neurologist says I just want too much attention. Yea that's the ticket.....

Anyhoo, I was noticing A LOT of that air hunger sensation before that first collapse. It was so bad that my ribs ached, it woke me up all night, I was miserable. About a week or ten days after starting the K+ , I realized I had stopped doing it. I don't even know when it stopped. But if I forget my dose (can you believe I still do that, even with them in a pill doser???) I will start doing it again.

When you think about it though, K+ controls the muscles and you use muscles to facilitate breathing and low K+ weakens the muscles and can actually make them pretty flaccid. So, now I try to be very careful about eating high K+ foods and not missing meds. I take 10meq twice a day. If I have an episode of weakness or paralysis, it is usually in the middle of the night, that's the longest I go between doses, or if I eat a lot of carbs. If I start feeling really weak, or sob, I'll just pop an extra one and it helps a lot. That's my story and I'm stickin to it....novellamorgan