Fun New Symptom: Shortness Of Breath

[imapumpkin]

This morning I woke up and as usual was greeted with my typical tachycardia, nausea, drop in blood pressure, heart palpitations...but this morning I also felt like I wasn't getting enough oxygen when I was breathing. I've never had shortness of breath with the tachycardia. The only time I really get out of breath is going up the stairs or over exerting myself (like lifting a full laundry basket) and even then it goes away shortly after the exertion.

Today I felt like I couldn't catch my breath even though I was just laying down. When it didnt go away after 45 minutes I called my PCP's office and asked if I should be seen (Even though I knew I should). Of course my doctor was out of the office, she always is, and her nurse is a nightmare to deal with. She's rude, judgmental, doesn't have a clue what POTS is,and worst of all, she thinks I'm a hypochrondiac and doesn't take me seriously because I've been so sick lately that I call more often than I'm sure she thinks is necessary. She said, sorry, we have no appointments available, go to the ER. (After asking me twice if I was sure this wasn't just anxiety. I told her no, anxiety makes me hyperventilate, not short of breath, and I am not really anxious, I just woke up).

Went to the ER. Vital signs okay, pulse ox good. Blood tests normal, chest x-ray showed nothing concerning. ER doctor (WHO KNEW WHAT POTS IS AND specifically said he never assumes anything is anxiety off the bat, therefore I love him forever) thinks this could just be a fun new manifestation of the POTS. I've never had prolonged shortness of breath from my POTS. Does anyone else get shortness of breath for over 2 hours at a time with little to no exertion? It's very disconcerting.

[SeattleRain]

This happened to me on a daily basis from the start of July to the end of August. It's what triggered my first ER experience. It feels like the process that puts oxygen into my blood was working at 50% - shortness of breath feeling. Breathing deeply didn't seem to help. It happened so often that I considered ordering an oxygen tank. I stopped having these breathing "attacks" right around the time I started increasing my water intake to 3+ liters a day (no clue if that's why, though).

Do you have a pulse Oximeter? I won one in an auction for a penny (You can get one for like $40). They're great for monitoring your heart rate and if you have breathing problems you can at least have some comfort knowing that your blood oxygen level is normal...

ER doctor (WHO KNEW WHAT POTS IS AND specifically said he never assumes anything is anxiety off the bat, therefore I love him forever)

Whoa! I hope you got his DNA - we have cloning to do!

[issie]

Yeah, Me Too!!!! I have it so bad sometimes I can't talk to people. It's worse if it has been a long stressful day. But, like you, I can wake up that way - knowing it will be a hard day. I have an oximeter ----but, if you are hypovolemic - that will show that you have plenty of oxygen ---well, in the decreased amount of blood that it is measuring it will be okay ---that doesn't mean that you are okay - cause if you had the right amount of blood circulating "Properly" you may show low oxygen. (I had a nurse explain this to me.) I find that oxygen does help me when I am like this. I have an oxygen concentrator and sometimes have to sleep with it. You might also get checked for sleep apenea as this will cause you to wake up feeling this way. I have apenea and (shame on me -----sometimes, don't wear my CPAP) and I will wake up with that shortness of breath feeling more intense.

Yup, part of POTS ---sorry to say.

Issie

[brethor9]

yes me too all the time.....my new mast cell meds have helped a little with it......I am starting to realize too when I am really low on fluids and especially salt it gets worse. My home nurse says the salt is very important in keeping everything stable not just the fluids. I didn't realize how sick you can really feel just having low sodium.

[flyingsquirrel]

I feel very short of breath when I'm dehyrdrated or lose blood volume. It's amazing how much better I will feel if I push lots of fluids and lots of salt.

[hholmes13]

It is a very frustrating and freaky symptom. I get bouts of it too. Even if I lay down and consciously breathe deeply/slowly it doesn't seem to go away. Sometimes these spells go on and off every day for weeks. It drives me nuts! I think it is a very common (and annoying) POTS issue.

[adigitalashley57]

This morning I woke up and as usual was greeted with my typical tachycardia, nausea, drop in blood pressure, heart palpitations...but this morning I also felt like I wasn't getting enough oxygen when I was breathing. I've never had shortness of breath with the tachycardia. The only time I really get out of breath is going up the stairs or over exerting myself (like lifting a full laundry basket) and even then it goes away shortly after the exertion.

Today I felt like I couldn't catch my breath even though I was just laying down. When it didnt go away after 45 minutes I called my PCP's office and asked if I should be seen (Even though I knew I should). Of course my doctor was out of the office, she always is, and her nurse is a nightmare to deal with. She's rude, judgmental, doesn't have a clue what POTS is,and worst of all, she thinks I'm a hypochrondiac and doesn't take me seriously because I've been so sick lately that I call more often than I'm sure she thinks is necessary. She said, sorry, we have no appointments available, go to the ER. (After asking me twice if I was sure this wasn't just anxiety. I told her no, anxiety makes me hyperventilate, not short of breath, and I am not really anxious, I just woke up).

Went to the ER. Vital signs okay, pulse ox good. Blood tests normal, chest x-ray showed nothing concerning. ER doctor (WHO KNEW WHAT POTS IS AND specifically said he never assumes anything is anxiety off the bat, therefore I love him forever) thinks this could just be a fun new manifestation of the POTS. I've never had prolonged shortness of breath from my POTS. Does anyone else get shortness of breath for over 2 hours at a time with little to no exertion? It's very disconcerting.

This is one of my worse symptoms when I am very symptomatic. Actually it was my very first symptom that prompted me to go to the Doctors. I remember vividly saying, "It's like I have a toddler sitting on my chest...." I think the Doc thought I was kooky even then but that was my only way of describing it.

The things that have helped with this are: When I was on low dose Prozac this symptom literally went away in a matter of one day and was gone the entire time I was on it. Breathing is one of the main functions of the Autonomic Nervous System so it would make sense that this feature would go screwy as well as heart rate, blood pressure and temperature regulation.

Actually when I hear about people not having this symptom within our community it is very weird to me; as its so easy for even normal balanced nervous system people to feel like their hyperventilating, but I guess we are all so different!!

Also other things that have helped are: When I went on a low dose of Thyroid Meds (Armour Thyroid) this seemed to help as well. My Doc says it acts very similarly to a natural beta blocker if you are lacking enough Thyroid hormone, so you could always look into that.

I'm also Mast Cell diagnosed recently and notice if I take a Claritin/Zyrtec etc. it goes away pretty quickly but I have severe rebound Mast Cell activation so when i take these Antihistamines 20- 30minutes later I get symptoms from H%$L from breakthrough Mast Cell which i am very currently learning is a thing...

Also Probiotics seem to help if your a Mast Cell person because a lot of times whats happening is your Mast Cells are inflaming/going crazy in your stomach and Diaphragm which is putting pressure on your Lungs, so my Doc says. Also theres a crap ton of Mast Cells in our lungs so thats easily a factor all on its own.

Hope this helps!!!

[Relax86]

When I would have the inability to breath for days and days in a row the low dose of hydrocortisone would take it away immediately. I also notice that when I am more regularly attempting to walk on my treadmill I get that symptoms less. It's just hard to convince myself to get on the horse. I also notice that breathing techniques work for me - specifically a gentle inhale, specifically trying not to inhale thru the resistance, followed by a long slow complete exhale seems to help. About a week ago I was having a tough time breathing along with sore throat on 1 side and tons of sneezing/reacting to perfumes and smells...etc. I almost gave an allergy pill a try, but afraid of increasing my HR. Good luck

[Canadiangirl73]

This is one of the symptoms I hate the most, this and chest pains. I get those after being on my feet too long but also randomly, like in the middle of the night or when I first wake up in the morning.

[imapumpkin]

thanks, ashley. i'll look into those treatments.

Canadiangirl, I also really really hate the chest pains. it's hard to tell yourself you're not having a heart attack when common knowledge is chest pain = bad news get help.

it's just so disheartening to keep discovering new symptoms. just when im trying to manage my symptoms, a new one pops up. it's like the fun never stops at the POTS party.

[kitt]

This is a topic I haven't even wanted to broach, but it's good to read other people talking about it.

For the last year people say, 'I can't hear you...speak up' and I feel like I'm speaking normally.

I've had recurring dreams for months and months where I'm trying to speak and I can't get the words out. Desperate, on the phone, and no one can hear me dreams.

So I feel like I'm speaking loud enough, but am very often told, "what?"

I have pain in my chest sometimes, and try to breath deeply and meditate. I think meditating and learning to breath while doing it is very helpful.

Meditation videos on the internet help and D. Chopra has a free newsletter, and often has good (and short) instructional videos on easy short mediations and breathing techniques.

Hope this helps somebody. It's helped me.

[peregrine]

Suddenly started for me at the start of October after I breathed in a lot of dust - but it hasn't changed since then. It was bad on propranolol (not too surprising!) but atenolol doesn't seem to cause it (also not surprising as atenolol - unlike propranolol - doesn't hit the beta-2 receptors that are involved in asthma). I have a history of asthma, so doctor prescribed Flovent (a steroid inhaler) and I started getting peak flow ratings. They were low, but improved after about a week; she also tested for a clot (a simple blood test, awesomely enough) since she was worried about pulmonary embolism. Right now I'm taking albuterol as needed - a few times a week, since the non-extertional shortness of breath isn't all the time but comes in episodes - and waiting to see the pulmonologist in three weeks (still on Flovent too). The albuterol helps a little, but not like it does with actual asthma, and it triggers my sympathetic nervous system really badly, so I try not to use it because I'm useless for the rest of the day if I have to. I'm still short of breath ~all the time while exercising - which of course triggers presyncope and spaciness! - but the resting shortness of breath is really uncomfortable. Grar. Focusing on slow breathing, and the pursed lips technique (http://my.clevelandclinic.org/disorders/chronic_obstructive_pulmonary_disease_copd/hic_pursed_lip_breathing.aspx) seemed to help me a bit.

[corina]

Kitt, I have that too and have been having people tell me to speak louder all my life where I really don't think I need to. I found out that when trying to speak louder it takes a lot of energy and there is a limit to where I come (it feels like my voice is being cut off like I always had when trying to sing). I've always thought it was just me and my silly symptoms but I now think its ANS related.