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Hi everyone,

I just got an oxymeter last week. I started using it this weekend. I wanted to use it when I felt breathless and potsy. I noticed that when I started feeling bad my oxygen levels would start to plummit. They get as low as 61. I thought, well we are suppose to have less oxygen hence passing out and brain fog. When I looked online to find out what was normal I started getting scared as anything below 90 is considered respiratory failure. This happens several times a day and now I am seriously scared. Does anyone else have this happen? I'm wondering if I should make an appointment with my pulmonary dr and see if I can be put on the oximeter monitor. I don't really want to be put on oxygen, but I don't want to go into cardiac arrest either. Im scared and freaking out a little.

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I just had an overnight oximetry last week, but I don't have my results yet. I'd go to your pulmonologist to discuss it, but don't freak out yet. The respiratory nurse told me that any pulse ox meter that is less than $1000 isn't going to be medical grade and will be less accurate. Also, if you are a constrictor and your hands go cold, it will read as a desaturation. So there is room for error and false readings. BUT, you need to get it checked out so that you all know and you can get the appropriate treatment.

Keep us posted!

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I just had an overnight oximetry last week, but I don't have my results yet. I'd go to your pulmonologist to discuss it, but don't freak out yet. The respiratory nurse told me that any pulse ox meter that is less than $1000 isn't going to be medical grade and will be less accurate. Also, if you are a constrictor and your hands go cold, it will read as a desaturation. So there is room for error and false readings. BUT, you need to get it checked out so that you all know and you can get the appropriate treatment.

Keep us posted!

Thanks firewatcher,

I do get cold fingers so maybe that along with not having a 1k :o oximeter is my problem. I made an appointment with my pulmonary dr for Monday morning. I will keep everyone posted. I hope your test turns out okay. If you don't mind I would be interested in what happens with your readings from your overnight oximetry test.

Thanks,

Natalie

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Natalie,

My test was to screen for central apnea as a cause of polycythemia (too many red blood cells.) I'm hoping that Mack's Mom will weigh in on this since she had a walking desaturation recently. :(

Go to your doc and keep us posted, I'll post my results once I get them.

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Sorry you're dealing with this too, Natalie :( I recently had a reading of 80% on a 1K machine :blink: after doing a 6 min. walk test. It freaked me out too. I still haven't gotten to the bottom of it. I mentioned it to a cardiologist who attributed it to cold fingers, BUT they were actually colder at the start of the test and they read 97% then.

I'm working with a rheumatologist who is trying to exactly pin down which connective tissue disorder I have. According to her, those of us with CTD (not sure if that's you) are MUCH more prone to heart/lung issues at very young ages. THAT'S why she was doing the pulmonary testing. Really makes me wonder... I had a spirometry test at another hospital as I was having intermittent pain when breathing in. The test showed obstruction, but was not reversible with albuterol- hence no asthma, but WHAT then?

I will soon be joining you with a pulmonary work-up. Is this just a part of our dysautonomia? Something scarier like pulmonary arterial hypertension, fibrosis of the lungs, antiphispolophod syndrome (all common in CTD?) Let me know what you find out & I'll do the same.

I have a quick question for you. Did you already have a pulmonologist? If so, why? I've never seen one before.

Julie

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Hi,

I have had oxygen de saturation problems for a couple of years now. As soon as I walk about, talk or even just get up from a seat my oxygen levels can plummet.

I went to see a specialist who told me I was holding my breath! No word of a lie. I can promise you it isn't possible to hold your breath when chatting on the phone.

Before seeing the specialist I had a hospital pulse ox taped to my finger for 24 hours to record what was happening. It dropped down to 84% regularly.I had to provide a diary of what I was doing during the day. Basically the only time I was over 97% was if I was laying down. The consultant dismissed me with the breath holding accusation ringing in my ears.

Even though I dont have an answer for it I have been provided with oxygen to use at home.

I find when I do anything upright one of my main symptoms other than my heart going nuts is extreme breathlessness. I feel like an elephant is sat on my chest.

Ive had various tests done vital capacity, spirometry etc etc and no one can explain it. I figured it was just me.

Its horribly reassuring to find out I'm not the only one who suffers with this. Maybe its a little known symptom of POTS and explains why we don't feel too good a lot of the time?

Rach

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Hi Julie,

I'm sorry that you are having problems. I am glad that I'm not alone, as selfish as that sounds. I am hypermobile, but I have never been tested for any CTD.

I do have asthma, but I wasnt having an asthma attack any of the times my oxygen levels decreased. I did feel the weird heavy feeling in my chest that I normally feel with my POTs along with heart racing and PVCs. I'm really hoping it's something related to POTs and not a lung problem.

BTW I looked on some of the asthma boards and most people's oxygen levels don't decrease like this with attacks. 2 years ago I was put on a beta blocker that caused such a horrible asthma attack that the spirometer put my lung function at 70% and my oxygen levels were still good.

I personally think the pulmonary drs are some of the nicest drs I've seen. Good luck and maybe we can find out what is going on with both of us.

I'll keep you updated,

Natalie

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Hi Rach,

I was wondering if any of this happened before or after your POTs? As I meantioned to Julie, I am sorry you have this, but I'm glad that I'm not alone. I guess it's a good sign that they haven't found lung disease or anything else scary that is causing this.

Has the oxygen helped? Can you tell a difference using it compared to before? The thought of being on oxygen at 35 isn't that great, but I'm not ready to go into cardiac arrest either, so if I have to be on oxygen I will. Do you use it all of the time or just during activity?

Maybe I'll get some answers next week, or maybe not.

Thanks for responding it made me feel better.

Natalie

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Me too, with the beta blockers. They made my allergy/asthma symptoms (MCAD) awful. I was recently put on a calcium channel blocker for severe Reynauds & my MCAD and autonomic symptoms were bad again. As a matter of fact, my walking test was done shortly after that debacle- wonder if that affected it? I sure hope so. I most definitely don't want to add lung disease to my growing list of DXes.

With your hypermobility & autonomic symptoms, I would guess that you DO have a CTD. And, because of the heart/lung implications; it probably would be a good idea to figure out which one. So happy you're seeing a pulmonologist :P Tell me what you learn!

Sorry you're dealing with this too, Rach. Very frustrating that your doctors have dismissed it :angry:

Julie

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Found this on a pulmonary nurse continuing education site:

"Peripheral vasoconstriction ? Oximetry relies on detecting a stable pulse. In order for pulsatile flow to be detected, there must be sufficient perfusion in the monitored areas. If peripheral pulses are weak or absent, readings can be difficult to obtain. This can give false low measurements compared with central saturation, which perfuses the brain and other vital organs. Patients most at risk for low perfusion states are those with hypotension, hypovolemia, and hypothermia, and of course those in cardiac arrest. Patients who are cold but not hypothermic may have vasoconstriction in their fingers and toes that can also compromise arterial flow.

If vasoconstriction is a problem, try moving the sensor to the ear lobe or warming the extremity to enhance perfusion.

Dysrhythmias such as atrial fibrillation may cause inadequate and irregular perfusion and unreliably low saturation measurements."

I can't even begin to guess what an irregular HR like ours would do. We just don't perfuse properly! :P

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I've been on a CPAP for about 2 years now and also oxygen at night. For some reason my oxygen levels are worse when trying to sleep. I think it has something to do with the apnea and probably the autonomic system is the culprit in this disorder too. I do have low oxygen when walking or any type of exertion. I know, I don't breathe right. I've found that albuterol does at times help me, if I have that very heavy, can't catch my breathe symptom. But, I wasn't found to have asthma and the doctor doesn't really understand why albuterol would help. But, at times it does. One recent study I've read says that it is also helping MS patients. They are not sure why. So, whether the POTS is the cause or it's just another part of the syndrome - not sure. My guess would be that it is just another part of the puzzle. I also have periods of a hyperventalate type action. My husband, who is really into fitness says it's because of not expelling carbon dioxide properly and the oxygen doesn't circulate properly because of the build up of too much carbon dioxide. That's why breathing into a paper bag is the wrong thing to do for us POTS patients, because it will trap the carbon dioxide even more. We need to expel it and then the oxygen will work better. Makes sense to me - of course - he's no doctor. But, I'll go with that explanation. Anything under 90, I was told is a number for oxygen. I also have the cold extremities and my body temp is way below normal. I haven't been found to have any significant thyroid issues - except for a conversion problem with T4 to T3 - Wilson's Syndrome. But, because of the heart issues - not able to take the T3 - it can cause tachy. Don't need any more of that. This issue can cause the low body temps. Probably is one of the reasons for circulation issues too. (Just guessing.)

Complex puzzle pieces - some day will all fit together.

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Thanks for the info firewatcher,

I do throw PVCs a lot and that is sually the times I feel most breathless, so maybe it is throwing the measurements off. I'm still going to try and get my pulmonologist to prescribe the montior just to check.

I'm also starting to get sick, so maybe that contributed to the low oxygen levels. I may have to wait for the monitor if I'm still sick on Monday.

Thanks for your reply Issie,

I think your husband is correct about getting the co2 out. When I start feeling that tight chest, I do the long exhale a few times. I do think it helps a little.

I'm curious, did your dr recommend you use the oxygen during activities that cause you to desaturate?

I also have albuterol as my rescue inhaler, but I only use it if Im having an asthma attack. I was always told that I should use it as little as possible, b/c it increases my risk of dying from asthma. My pulmonary dr from the US told me that if I'm having to use it more than once a week, then my steroids aren't controlling the asthma. Do you use it reguarly? Maybe since you don't have asthma you aren't under the same risks?

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Hi Issie,Have you ever been tested for myasthenia gravis or congenital myasthenia syndrome? I only ask as a friend of mine has a weird kind of MG and salbutamol (UK name) / albuterol really helps her, especially as one of her worst symptoms is shortness of breath. I also know other MG patients who take this to alleviate their symptoms. It just sounds odd that it helps you. I am not a Dr and in no way am suggesting that you have MG or CMS.

Hi Julie,

I am 37 so I know how you feel about the oxygen! Yes it helps and I should use it an awful lot more than I do. I also find that it gets rid of awful headaches that I presume are due to not enough oxygen getting to the brain.

I never had any problems with breathing before I got sick in 2007. Up until that point I worked full time, ran the house and walked our three big dogs for 2-4 hours every day. I also had a very active social life, spent lots of time with my family and was up for a promotion at work. Then this happened.

I think I have probably always had autonomic issues, but very mild. Always had a problem with feeling cold, excessive thirst and light heads / fainting and low body temp. But it was nothing that would prevent me from living my life.

So I dont understand where the breathing problems come from and nor does the medical profession.

FirewatcherThank you for that post. Very interesting.

Nmorgan thanks for starting this post its nice to know we aren't alone.

Thanks

Rach

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Issie, I don't mean to frighten you- last thing I want to do- BUT something in your post caught my attention. You say your breathing issues are worst in a lying position- maybe worst when you are flat on your back? That could be a sign of pulmonary arterial hypotension PAH. Sounds like you've already had a work-up by a pulmonologist so this has probably been ruled out. I just wanted to bring it to you attention as it is relatively common in younger women with CTD- not sure if that's you. If you've had an echo- check your right side pressures. If they are high, that could be the first step in catching this.

Daily singulair helps my breathing issues even though I don't have asthma. Occasional atrovent via nebulizer is also helpful- albuterol and xopenex are not. Huh???

Thanks for the info, Jennifer. Very reassuring!

Julie

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Thanks Julie for the input. I don't know if they checked me for that. It seems that nearly everything that could be thought of was checked when I went to Mayo. I have a friend who has it and she was nearly to the point of needing a lung transplant and got into a study. She had a gastric bypass and lost allot of weight and they also had her doing real light exercise in a group. I'm not sure what meds she's on. But her husband says she is nearly back to normal. She even got a job. It used to be that transplants were inevitable - there are great advances in it.

I do feel that there is some type of pressure issues with my heart. It hurts me to lie on either side and I HAVE to prop up on pillows at night to sleep. I cannot lie flat. I feel like I'll smother to death if I do. Right now, I'm concentrating on losing weight and trying to get a little fitness back (remember my breaking my foot off my leg - by the way I'm walking now). I'm also doing that elimination diet and concentrating on my autoimmune overreaction - but actually my igg is too low. I just got a call from the neuro that looks at that and he is wanting to do a follow up since I've not done the spinal tap he wanted. I wanted to give the diet a chance to see if it would make a difference. It has - but not completely. So we will see what he has in mind.

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Issie-

Wow, your description sounds exactly like PAH. Forgive my persistence, but the more you describe your symptoms, the more they match up . They say you must sleep with oodles of pillows- never lie flat, etc. When were you at Mayo? How old is your testing? Do you have a copy of a recent echo? Look at your right side pressures- anything over 25.... Forgive me for harping about this, BUT the sooner you start treatment, the better your prognosis would be. Here's a blurb about PAH. It's very comprehensive and multifaceted. Browse around & check it out: http://www.pah-info.com/What_is_PAH

Geez, I somehow missed your foot injury :( How awful! I'm so happy you can walk now. How long has this been going on??? :blink: How have you been able to handle that???

VERY interesting about your IGG. ME TOO!!! We have many similar things going on. Be sure and tell me what you learn.

Gentle Hugs-

Julie

P.S. I'm so happy to hear about how well your friend is doing. I know treatment is advancing by leaps and bounds! BTW, this occurs in people of all sizes, has nothing to do with weight or fitness level.

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I've been to Mayo two times. Once 2 years ago and again a year ago. I'll pull the results and see what they show.

I broke my foot/leg last April. I was in a wheelchair for 5 months exclusively and been in rehab to try to get flexibility and mobility back. When you are in a chair that long - there's more than your leg that deconditions. I know from experience - being in a chair makes POTS get worse and fast. It's better to keep moving as much and long as possible. I had the worst kind of break there is. Basically, I broke my foot off my leg and it was attached by only skin. (I know too graphic, sorry). I have plates and pins on both sides. I have EDS and circulation issues already and it seems like it's taking forever for the blood vessels to regenerate back into my foot. It will never really be normal again - but at least - I can walk.

You asked how I'm handling it. I have a great husband who's been very supportive and some really good friends from my religious group that have really been there for me. I'm very fortunate.

I'm supposed to go to the neuro this Friday - about the auto immune issues. I'll let you know what he says.

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Julie,

I just found out that pulmonary hypertension runs in my dads side of the family. They are going to check him out for it. They have been thinking that he had COPD but now his heart is in question - so there could be a family gentic component. Will ask the doc about it tomorrow.

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Hi,

Well my pulmonary dr did some lung function tests yesterday and she thinks that my asthma isn't being controlled, so my inhaler doses have been upped. She is also sending me to rspiratory therapy to see if that helps. So at this point she thinks it's still my asthma causing the drops in oxygen. I go back in 6 weeks to see if I've had any improvement. I hate asthma. Mine used to not be that bad, but since all the POTs stuff it just seeems to get worse. I'm praying that it goes away. If there are any prayer warriors on the forum can you pray that my asthma goes away or at least gets a lot better? thanks

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