Music And Pots

[joiedevivre516]

Hi! I'm a very serious piano and vocal student (have been since I was 8), and I've just been diagnosed with POTS after a very positive TT test. Due to the dizziness, etc., I hadn't been able to do as much with piano or voice this past year, but I'd never linked the two. Now I'm reading that singing may actually be BAD for someone with POTS! For any musicians out there, have you been able to keep your music going even with POTS? If so, are there ways to combat the negative effects (particularly of singing)? I don't want to do something that's bad for my body, but I've dedicated most of my heart and soul (and time) to piano and voice, and I can't imagine having to give them up!

Thank you!

[san90x0x0]

Hi,

I've been playing the piano since I was 5 and although I still enjoy playing frequently, I can't say that POTS did not affect my ability to play. There are times when I'm playing and the notes get all blurry (especially classical) because my vision is so bad. When I'm going up and down the keys, I also start to get severely nauseous and have to stop and close my eyes because of episodes of dizziness and vertigo. My body also tends to get stiff (including my fingers) and I get frustrated because I sometimes have trouble playing as fast as I try to. So, yes, it does affect me as a pianist. As for singing...its hard because I have to stop multiple times to catch my breath, but I'm not a singer so it doesn't affect me that much. I don't know what to say but just keep trying because I noticed that when I stop playing music for a while, its harder to come back and play. Good luck!

[joiedevivre516]

Thanks! I noticed a typo in my post - I've been singing seriously since I was 8, but I've been playing piano seriously since I was 4! Oops! I definitely know what it's like to have to come back to piano after not playing for a while - when I was 15 I dislocated my shoulder and tore up all the shoulder structure already there - I couldn't even move my arm and was in a sling for almost a year AND had surgery, so there was no piano for Kate for quite a while! Now it's just frustrating because it feels like just as I've gotten back to it after getting over my injury (I'm now almost 19) I'm dealing with POTS, which is also making it difficult... Hmm...

[lalalisa]

Kate,

Hello! Your post definitely "struck a chord" with me (no pun intended!). I was a music major in college (vocal performance) and also play the piano. I was diganosed with POTS a year after graduating from college and it has definitely changed my life in many ways. I used to help lead the singing at church and now with POTS it's difficult just to sing sitting from the pew along with the congregation (the combination of standing and singing is basically impossible for me right now). It's been pretty emotional for me coming to grips with this reality. When I sing I get dizzy, lightheaded and feel badly. I love it so much that I still sing ....especially in church .... I just stop when I absolutely have to.

As far as piano I have a really difficult time concentrating (intense brain fog) and this has made playing quite difficult. On my good days I'll still sit down and play but this is rare right now.

I don't want to discourage you. I think you should definitely keep trying to sing and play...I really doubt that it's bad for you as long as you stop when you have to and just pace yourself. Let your body tell you when it's a good time to sing or not (i hope this makes sense). For example in church I just sing a verse and then sit out a verse or just sing on my good days.

My hope is that we'll improve someday and that singing and playing will be a part of our daily lives.....but until then just keep trying.

I feel your pain...hang in here,

Lisa

[Dizzy Dame]

I can't sing at all anymore because it makes me terribly dizzy. I'd go with what your body's telling you. If you feel good playing, or singing, then keep at it. If not, give it some time and try to discover your new boundaries.

Good luck,

Lauren

[calypso]

Welcome, Kate!

I can't sing any more because I run out of air way too fast. I was never a standout or anything; I sang in my high school choir and competed locally and regionally, but then hung it up. I just always enjoyed singing. I am very mad that I can't sing and I can't bowl (I know how stupid that sounds!). But I really enjoyed both hobbies and can't do either -- one because I get short of breath and the other because of my severe muscle loss and weakness.

Amy

[Evie]

Kate i hope you find a way to continue your music. We loose so much when we lose our health let alone losing our passions too. I have heard singing can be bad for people with POTs but what is the issue with piano? (i realise some people find concentrating, coordinating, sitting and moving tough) Maybe we can work out a way around them!

Amy, can you bowl using a metal incline? i have no idea of the correct name for it but here we have like a metal slide that you put the ball on the top of and then it rolls down and then down the ally. I realise it would not be the same but maybe you could still get a bit of the feeling. I use to love skiiing but now i shake so much i cant control myself and i tire quickly so i have to stay on the beginners slopes which is sad when i know i use to do jumps and black diamond runs. However i have to admit the first time i was able to ski again i was SO excited. mixed feelings indeed.

[becky]

Hi Kate,

I love singing, i didn't realise pots would affect it until i passed out at kareoke last year!! hmmm, hardly my best performance. the bloke who was the compere at the kareoke (one of my mum and dad's friends) was not impressed cos he thought i'd broken his microphone, i love people who have their priorites in order!

i have been quite a lot better recently so i have been doing some singing but it took me over a year to get back up their and do it, and it's a lot harder than it used to be, i get really breathless and my heart goes mad which sometimes causes me chest pains and sometimes doesn't, luck of the draw.

but hey, it may not have been my best performance but it was certainly the most memorable and if i goto kareoke now everyone shuts up and watches, i know it's cos they are waiting for me to hit the deck, but not to worry i feel like a star!!

At the end of the day you can only do as much a your body allows you to, having been singing for so long any breathing tips?

good luck singing and playing

becks x x x

[Poohbear]

I hope you can find a way to continue singing and playing piano!!

I am not able to sing much; I get light headed and my heart rate and bp really get messed up.

I used to play clarinet and french horn and I'm not able to do that anymore either....makes me incredibly sad sometimes and it's something I loved and miss terribly.

I use to play in a large city orchestra and I don't know if my heart will ever heal from the sorrow of not being able to play anymore.

[Jacquie802]

Hey there,

Singing produces symptoms for me as well as some others out there. I get very lightheaded and I get SOB alot. Then again it's not like I have the best singing voice out there, so I'm sure ppl benefit from this...LOL. I hope you are able to continue singing and playing the piano.

Jacquie

[joiedevivre516]

My problem with playing piano is that I get really dizzy sitting up for such a long time - I used to practice for six hours a day; after my injury I was down to two at a time (but still six total), and now I'm LUCKY if I even get two in. I had already accepted that I wouldn't be able to major in piano in college like I'd originally planned, but this is waaay worse than I bargained for. I also have extreme muscle weakness so I can't really milk the difficult and strong passages like I need to (bye bye, Rach(maninoff), I'll miss you!), which is soooo frustrating. Also, even if I do get in two hours a day, that's not NEARLY enough to really build up any kind of strength or ability.

Hopefully I'll be able to keep up singing a bit (I don't want to waste 10 years of lessons); at this point I can only get in about 15 minutes at a time, and even that really isn't all that satisfying, cause I don't have the same strong sound I used to. Things may get better!

As for breathing advice - make sure that when you breathe you're not "inhaling" but creating a space for the air to go. Just expand your rib cage (like an umbrella) and your diaphragm (without actually inhaling), and the air will go in - nature abhors a vacuum! That's the best advice I've ever gotten - you won't get dizzy from sucking in air so fast, you won't require as many breaths, your mouth won't dry out as fast, and the sound will be stronger and more supported instead of breathy.

Thank you all SO much for your responses and support! Good luck with all YOUR musical pursuits as well!

[lthomas521]

If you POTS is really bad, forget singing until your POTS is under control. The increased pressure in your chest interferes with venous return to the heart and thus with the flow of blood to your brain. This is very bad for you, as you can probably tell by the fact that it makes you feel wretched. If you insist on singing, do so sitting down. If you sing while standing, the orthostatic stress along with the Valsalva maneuver is a double-whammy, and you risk fainting and falling down and hurting yourself.

Even if they don't find a cure for POTS, you may be able to improve well enough with conservative measures and Florinef and so on that you can resume singing.

When I was at my sickest, I filled in as rehearsal piano player for a community theater production of The Mikado. If I tried to play two days in a row, I got struck down by a serious migraine. A person has to know her limitations.

[dianaD]

I am so gald that you posted this question!! With all that I've lost (work, my kid's functions, traveling, feeling good, etc), what I miss the most is my music. And I'm not that good!!! But singing in choir and playing the flute in orchestra was where my joy came from -- I'm sure you can relate.

Anyway, I want to give you some hope. I tried to play my flute a little bit for the last year and a half, but it made my symptoms much worse, and I just couldn't maintain it. However, I'm getting a little better now (since I started minocycline - I wish I knew if that was why I am better!), and started my flute again. I am actually taking lessons and he said that I am ready for the community band here, no prob. I have adrenergic POTS, and get flooded with adrenaline sometimes. BUT, I've been able to make the lessons and I actually feel kind of "high" after the lessons. No matter how sick I feel, if I just GO, I do fine and then feel better. It may have something to do with how POTS affects the brain chemicals (but I'm just guessing). I know when things are bad they are REALLY bad, and the depression can be debilitating, but when things (like playing the flute) are good, I overcome my symptoms and (mentally at least) feel good!

I wanted to give you some practical advice, too. I can sit up longer, with fewer symptoms, if I wear an abdominal binder. It isn't something you'd want to do all the time, but for piano playing, it just may fit the bill. You can get them on-line, or even at the drug store. They're usually used for post-surgery patients. It's like a big piece of elastic, fastened with velcro. I'm guessing it pumps the blood back up to my head. It really helps and may be enough to get you through a practice/performance.

If you are too symptomatic, I would encourage you to NOT give up. I would cry sometimes when I saw my music sitting there, but DO NOT GIVE UP. Pull it out when you can, enjoy it when you can, and ASSUME that you will get back to where you were with it soon. I'm at a higher level with my flute now than I was before I got sick, and that's just from playing "sometimes" when I was really sick, and daily now for the last month or so. No matter how brain fogged I am, I can still seem to play it! Must use a different part of the brain, or something.

Hang in, and keep singing and playing when you can!!

Oh, I forgot --

I asked Dr. Fealey at Mayo if playing or singing would make my POTS worse. He said NO! It may make my symptoms worse temporarily, but he encouraged me to keep trying, because he thought it may end up helping my inability to breath!!!

So, Don't be afraid that it will make your condition worse by trying!

Hoping for the best for you and your voice,

[joiedevivre516]

Thank you SO MUCH, Diana! I can completely identify with EVERY feeling you've had regarding your music, and I can't tell you how nice it was to see this post today! So many constructive suggestions!! I'm definitely going to try the abdominal binder, and I'll also keep going as much as I can and just plug through! You are just great - I feel like you've given me a new lease on my life!

I wish you ALL the best with your music!

I've heard that seratonin really, really helps curb the POTS symptoms, and it's a proven fact that music releases seratonin, so that might be why you feel that "high" you were talking about! Let me know how things go for you!

Kate

I am so gald that you posted this question!! With all that I've lost (work, my kid's functions, traveling, feeling good, etc), what I miss the most is my music. And I'm not that good!!! But singing in choir and playing the flute in orchestra was where my joy came from -- I'm sure you can relate.

Anyway, I want to give you some hope. I tried to play my flute a little bit for the last year and a half, but it made my symptoms much worse, and I just couldn't maintain it. However, I'm getting a little better now (since I started minocycline - I wish I knew if that was why I am better!), and started my flute again. I am actually taking lessons and he said that I am ready for the community band here, no prob. I have adrenergic POTS, and get flooded with adrenaline sometimes. BUT, I've been able to make the lessons and I actually feel kind of "high" after the lessons. No matter how sick I feel, if I just GO, I do fine and then feel better. It may have something to do with how POTS affects the brain chemicals (but I'm just guessing). I know when things are bad they are REALLY bad, and the depression can be debilitating, but when things (like playing the flute) are good, I overcome my symptoms and (mentally at least) feel good!

I wanted to give you some practical advice, too. I can sit up longer, with fewer symptoms, if I wear an abdominal binder. It isn't something you'd want to do all the time, but for piano playing, it just may fit the bill. You can get them on-line, or even at the drug store. They're usually used for post-surgery patients. It's like a big piece of elastic, fastened with velcro. I'm guessing it pumps the blood back up to my head. It really helps and may be enough to get you through a practice/performance.

If you are too symptomatic, I would encourage you to NOT give up. I would cry sometimes when I saw my music sitting there, but DO NOT GIVE UP. Pull it out when you can, enjoy it when you can, and ASSUME that you will get back to where you were with it soon. I'm at a higher level with my flute now than I was before I got sick, and that's just from playing "sometimes" when I was really sick, and daily now for the last month or so. No matter how brain fogged I am, I can still seem to play it! Must use a different part of the brain, or something.

Hang in, and keep singing and playing when you can!!

Oh, I forgot --

I asked Dr. Fealey at Mayo if playing or singing would make my POTS worse. He said NO! It may make my symptoms worse temporarily, but he encouraged me to keep trying, because he thought it may end up helping my inability to breath!!!

So, Don't be afraid that it will make your condition worse by trying!

Hoping for the best for you and your voice,

[Richland acres]

Ok, I do not sing well can not carry a tune, but heck love shower and car sining, but not now. For one I get weak in the shower, and being light headed from sining in the car isn't great either. So the world is much better with out me trying to carry a tune any ways, ha. For you, dont dispear. You will have good days and bad, once the pots is controled, you should be able to sing, but make sure you are not driving, and it would be a good idea to have some one with you. If you feel light headed of course stop . I have a hard time with breathing, but this is the same feeling when I exercise. So i exercise on good days do nothing on bad days. I think its important to not give up what you love. You may need to make adjustments but still be able to do what you love.

Brenda

[Ernie]

Hi,

As a teenager I used to play the trumpet. I have not been able to sing for years.

Have you tried the compression hose.

[photchkiss]

I'm an amateur classical pianist. So far, POTS has not gotten in the way of my piano playing in terms of dizziness, nausea, etc.

However, singing is a different story. When I take my 3 year old son to music class, parents are expected to dance, stand up and down and sing with their children. I do my best to give my son the same experience as the other kids, but signing definately makes me feel sick.

For me, having a very good artist bench for my piano helps--I can adjust the height just right, and the quality and firmness of the cushion helps. The artist bench I use is a Steinway bench, I think they are around $400. Not cheap, but it's a beautiful piece of furniture that may help.

Joe

[Dawg Tired]

Well, unfortunately... as much as I would like to think I sound just like... uh... someone who can carry a tune.... I don't.

But, I used to sing at church - with the congregation, not as a solo or choir. But those days seem to be behind me now. I have fainted from trying to "push through it"... That was in the early days, before I knew I could NOT push through it.

Since then I might sing softly along with the rest, or I might stay silent. I cannot even stand to pray with the rest but everyone understands....

[joiedevivre516]

Joe, how cool! I also have a Steinway bench - it's a BEAUTIFUL adjustable duet bench (each side actually adjusts separately), because at the heigh of my piano I was mainly into ensemble playing. My Steinway (it's a 1928 - personally I think the 1920s Steinways are incomparable!!) came with a solid wood bench, but we immediately upgraded to the artist bench so I could adjust it! Thanks for the awesome advice!! It definitely helps!