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issie

Singing With Pots

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I absolutely love to sing and was always told that I have a beautiful voice. But, since I've been having issues with POTS in the last few years ----I'm having a horrible time projecting my voice and having the breath to hold the higher notes. Anyone else notice this as a problem? I've had to resort to sitting down to sing - because standing makes me really dizzy if I'm singing. (Well, I'm dizzy if I'm not singing. :) , but it's worse with singing.) I would love to be able to get my voice back and be able to really SING again. Just wondered if others have noticed this as a problem.

Music is in my soul and I have always enjoyed music (playing it, singing it and dancing to it.)

Issie

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Issie I have/had the exact problem. Couldn't sing at all before the octreotide. I found it so stupid and didn't want to bother my doc with it as I thought it was just stupid me. Then we had a conversation once and somehow I brought it up and his reaction was quite calm and understanding. He told me that the brain leads the oxygen in the blood to the parts of the body that NEED it like vital organs. Singing isn't needed so when you lack oxygen those parts that don't really need it shut off.

This seemed really reasonable to me and I was amazed that what I thought was just too stupid to mention was actually a well functioning brain thing.

Btw I can sing again now, not always and I def won't be in a choir but I really love to be able to express my feelings in singing (happy songs most of the time!!!)

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Yes, it does make me dizzy, but I continue to sing in choir, anyway! It definitely is a blessing that feeds my soul,....like to dance, too, but not doing to much of that these days...lol :)

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Yes, I can't even sing along to the radio anymore. :( My dizziness gets worse also if I laugh more than a chuckle or if I'm talking like regular conversation.

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I'm completely tone deaf and therefore avoid singing in public, but I played the flute for almost 15 years and it's really tough for me to do now. I enjoy doing it, but man do I get super light-headed really quickly. If I play it all, it's for very short intervals. My 4 year old daughter loves to hear me play and have me show her how to do it, but I can't go for more than a few minutes anymore. corina your doctor's explanation makes a lot of sense.

Good luck issie I hope you can sing again!

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Issie, I'm so with you on this. Maybe it's our MCAS? Anyhow, I frequently do not have the breath to sustain any note, much less a high note, especially when standing. I noticed this first in church. They usually have us standing when we sing.

So, depending on my mood, I'll remain seated if I really want to sing, or, my usual scenario is I lipsync only, no voice. It's a bummer.

ETA, don't try to engage me in a protracted discussion while I'm standing. I do not have the breath to speak.

Oh, and to add confusion to this symptom, I'm fine when exercising. I mean, I am able to exercise.

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So glad to hear others with this problem. My daughter is a music major in her last year of college (and then POTS hit). The only thing she has left to do to graduate is to put on a 1 hour vocal recital (standing the entire hour!!!) Her POTS is so bad right now that she had to cancel her recital this Spring and hopefully will be able to perform it sometime next year so that she can graduate.

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Forgot to mention that I am hoarse after I've been talking or singing for awhile, and I notice that my throat swells, too, but I never give up...just keep on singing for as long as I can :rolleyes:

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Issie, as you know I'm a singer. Yes it is extremely difficult! I have had to train myself over the years to control my breathing and some days when it's a bad day, it's still impossible. lol I always sit down to sing because that's the only way I can do it. My HR will increase 20-40 BPM while singing a longer phrase. As soon as I take a breath, it drops back down. I have no idea if this is "normal" or just POTS. It can be unsettling at times...

Singing in my chest tone is exceedingly difficult for me. I have to sing in my head tone a lot because it takes a lot less air. When I am forced to go into my chest tone, I'm gasping at the end of even small phrases. I recommend avoiding holding a whole bunch of air within your lungs. I think that's similar to the valsalva maneuver and immediately makes me POTSy! I was singing My Immortal one day and that song is pretty low in some sections, I clocked my HR at 145 during the chorus! :blink:

Regardless of how I feel physically, singing makes me feel good emotionally. I keep doing it.

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Ditto for me, too. I used to sing in the choir. Then, I would sing a few lines and have to stop. I had no idea why until I got the diagnosed with POTS.

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Well, I sort of knew that Dana would respond to this one . . . .and you guys -----she has a beautiful voice -----I mean beautiful. But, sorry that the two of us aren't alone with this issue.

Corina, that sort of makes sense - oxygen does need to be utilized where it's the most important. But, I really would like to have enough breath to sing a song and then feel good afterwards - instead of having blurry vision and being dizzy. Tried it a couple of times today and it was just down right depressing.

I bet playing a wind instrustment would be very hard. I can't imagine. But, love the Sax and would love to learn to play that some day. I'm a piano and violin player myself. Haven't done either in a long time, because I don't own either instrument right now. Some day in the future, maybe.

That would be hard to be a music major and not be able to do your recital. I'm so sorry. Hope she will be able to figure out a way to do it. I really can't see anyone with POTS standing for an hour - much less singing that long while standing. I wish I could.

I don't know if MCAS would have anything to do with us. But, interesting idea.

For everyone else that has responded -----thank you.

NOW - -- --- here's the BIG question ------how do we overcome this and be able to do what makes us happy and SING again. I figured out I can dance while seated in my chair ----and I do ----despite my husband rolling his eyes. But, music moves me and I have to move with it.

Issie

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I play the saxaphone and have similar problems. I have to sit for sure and don't have enough breath to hold the notes!!

Brye

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Hi, all.

Yes, I have trouble singing, as well, If I'm driving and trying to sing along with one of my CD's, I need to stop a lot since I get so dizzy, I may pass out behind the wheel. Not good.

I can't sing and do any housework or anything else at the same time. I used to sing publicly, as well, for years, but can't anymore. I'm just not as good as I used to be.

It's funny, Dana, that you have more problems with your chest voice? Mine is my head voice. I really start to swoon if I sing in my head voice, but I can go a lot longer in my chest. Can't say others want to hear it, though! :)

Do all of you have trouble talking on the phone and walking or doing housework, too? I do. I can't talk on the phone and do any walking, dusting, anything else, or I don't have the breath for it. One by itself is fine, sit and talk on the phone or dust or walk, whatever, but not together.

Ugh. Dysautonomia. So much fun.

Lindajoy

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Oh, and dancing? Forget it. And, I used to be a dancer. Was in a dance group, met my husband at a dance, danced once a week. Now, I'm lucky to shake it a bit to the radio. Last time I tried, I couldn't breathe for an hour!

I repeat, ugh..

Lindajoy

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LindaJoy,

Dancing is what got me back on my feet again. I don't know what type of dancing you were doing, but I started about a year ago with a pro ballroom instructor and have gotten my heart rate down around 40 beats per minute. I started with only being able to dance for 15 minutes to very slow music. Now I am up to an hour and have just started to increase the beat of the music to get me to the next level. My neuro can't believe the difference dance has made with my pots, maybe you could just try it out again only going real slow.

Maggie

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I've always wanted to do ballroom dancing. I've done mostly choreographed song / dance moves for my performance group. Too much now, that's for sure.

I would love to be able to do the ballroom dancing. That is so awesome. I'm glad you're able to. Have fun. Thanks for sharing that.

Lindajoy

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@Linda

That is interesting. I have a terrible time with my chest tone. I have to use a lot more air to get the lower notes out and that's tough at times. My voice is naturally very high and my low notes aren't so good, so maybe that has something to do with it. haha!

I get short of breath when I do anything while talking on the phone too. I know sometimes I probably sound like I'm gasping for air on the phone...

One thing I forgot to mention. When I sing, I start to sweat profusely....haha I figure that has to do with my sympathetic nervous system, but not exactly sure. I come out of our bedroom where I record and it looks like I've run a marathon...lol Too funny.

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Totally with you all on the having trouble singing and also having trouble on the phone whilst walking. Very annoying! I used to sing walking-type songs while walking to work or the bus or whatever, but now I can't because it makes me very lightheaded. Sad as my partner and I spent a lot of time singing together in classical music groups in college... I think sitting down does improve it, though one has to sit up straight to maintain a good vocal tone, which is tricky. *sigh* One of my sadder things. And - corina - super glad your doctor wasn't dismissive of something so obviously important to you!

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I'm so glad this came up! Not being able to sing like I used to is one of the sad parts of pots for me. I had many years of voice training & performing and now I just get too dizzy & faint feeling!

Dana - I'm a soprano too, but get most dizzy now in my head voice, like Linda, so try to sing lower things (of coz my voice is out of shape & can't go as hi now as I used to anyway). I totally agree with the valsalva maneuver comment tho - that's just what it feels like for me.

Music is so healing - wish there was a good answer as to how we can be less frustrated by our limitations here & keep singing!!

(null)

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Here's another one. Can't seem to laugh or yell without getting light headed, either.

I'm just not a quiet or still person by nature, so this change is hard to take.

Lindajoy

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I love music, but unfortunately for those around me I've always been a terrible singer. I miss driving because that was when I would sing at the top of my lungs and no one would have to hear it :P

When I first got sick, I was in really rough shape and I could not handle anything even remotely negative, so my son and I settled on America's Funniest Home Videos to watch together (laughter is the best medicine...right???). I actually thought that I would die when I attempted to laugh - I had severe chest pain and SOB. :lol: I had to turn it off. Thankfully, I don't have that extreme of a reaction now.

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Great topic everyone, and something I've been wondering about for a long time too. I am also a singer (trained with an opera singer for a time), so I know how to project and sing using the diaphram. I am also a soprano, but had a lot of trouble with my head voice rather than my chest voice. I am so happy that since I started taking Singulair I've noticed I've been able to start singing in my head voice again and I can even sing a high G above middle C on a good day (which isn't that high really for a soprano but is a lot higher than I could sing before I started my meds). Issie, are you taking Singulair? I just wonder if it would help you too. It really helped with my breathing problems (which I still get, just not as badly as before). Before I started it, I could hardly sing one line in a song. Now I can finish a whole song and sometimes sing 2 or 3 more. Ofcourse if I'm having a bad day breathing wise, singing is off the cards. But at least now if I'm having a good day I can sing, especially at night (when symptoms are usually better).

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No, I haven't been taking Singular. My hubby has a script for it and I could try his and see if it makes a difference. Good idea. Since, I'm not finding an H2 that is agreeing with me. Maybe, that would work with the Claritin and Nasal Crom. I have a friend who also is an opera singer and she traveled to Paris to sing when she was younger. Get us together and oh boy, you got some tunes going on. I really love to sing, but when I'm bad . . .I mean it's bad. And then when I'm okay and on ---I have people telling me how good I sound. Just wish, for my own enjoyment - it was more stable and I could project better and not run out of air. Sometimes, my head voice is best and then other times my chest voice is best. I vary in my abilities. And then sometimes, I'm at a big fat zero . . .I mean pitch and tone is off. It's like you can't hear yourself or something and you are tone deaf . . . .what's up with that??? The cracks and the creaks . . . like someone doesn't really know what will come out of their mouths on the next note. Weird! :) I'm just glad to know that I'm not the only one having this issue. Makes me not feel so alone on this thing.

Issie

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LindaJoy,

Dancing is what got me back on my feet again. I don't know what type of dancing you were doing, but I started about a year ago with a pro ballroom instructor and have gotten my heart rate down around 40 beats per minute. I started with only being able to dance for 15 minutes to very slow music. Now I am up to an hour and have just started to increase the beat of the music to get me to the next level. My neuro can't believe the difference dance has made with my pots, maybe you could just try it out again only going real slow.

Maggie

I'd love to be able to dance again. I miss it so much. A great suggestion, Maggie. Very slow dancing for short periods and building up. It could work for me. I'm certainly going to give it a go.

Blue

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I sing Alto, and always have. My voice cracks on occasion, and I'm straining to sing, compared to what I was able to do before, but...I will have to be on my death bed to stop singing!! Yes, it wears me out, I usually am shaking like a leaf when we are done (singing about 4 songs), and there are days that I am very dizzy, but I keep on...It's actually the best thing for your tidal volume, it increases lung expansion, and strengthens all your muscles. I move a lot, so I'm not really standing in one place for too long. I am constantly flexing my calf muscles, and am usually not a fainter, even though I feel like it at times. It uplifts my soul, and I can't go without singing. I do notice that I have trouble talking the rest of the day, as I become hoarse, and exhausted, too. I used to be a dancer, as well, but spinning is not good for dizzy dames, so I've curtailed that activity. :wacko: At least when I'm on the elliptical, I can hold on...lol :)

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