Carbon monoxide exposure and POTS symptoms

[Megscd]

Has anyone ever heard of carbon monoxide exposure worsening POTS symptoms? I’ve had an IST dx for years and have not been what I’d call energetic for some time, barely able to exercise, lightheaded and nauseated constantly. All that. (I’m working with an EP to see if I have POTS also.) In the last few months my symptoms have gotten WAY worse. I’ve started missing work because I just can’t get out of bed for days at a time. I’m too tired, and when I do get up just to walk around the house I feel like I’ve run a marathon. I found out in October that my old heater was pumping out decent levels for carbon monoxide into the house for probably a month, since I turned the heater on, and I was DONE FOR. Definitely couldn’t get up and am grateful it was discovered before I just died. I figured I should have recovered as soon as the exposure stopped, but I haven’t been well ever since. Is this the type of trigger than can worsen POTS/IST symptoms long-term? 

[MomtoGiuliana]

POTS can be triggered by almost anything it seems, so it seems plausible that CO exposure could trigger a response.  For most POTS patients, symptoms wax and wane.  Glad you found out you were being exposed to CO!

[SabrinaMedina]

Hello! I'm sorry that you had to experience the carbon monoxide exposure, but grateful that you found the leak! I created a dinet.org account specifically to respond to your post, because I too had exposure like this and later got a POTS diagnosis.  

I live with my parents in their home, and I took a break from working to sort out issues with endometriosis in 2013.  Soon I began to notice that despite all of my efforts to feel better, I just kept feeling worse in all sorts of weird ways! I felt like I was going crazy because all doctor's test results would come back normal, yet I was suffering with headaches, extreme fatigue, muscle soreness, shortness of breath (as if I were being suffocated), tachycardia, dizziness/lightheadedness, and gastrointestinal distress.  

My only clue was that I had an abnormally high red blood cell count (my body was trying to compensate for the lack of oxygen). Then I realized that our gas powered washing machine and dryer were ventilating directly into the house!!! An Xcel energy worker was sent out and measured the carbon monoxide being released from all of our appliances and found that our water heater and oven were also releasing ridiculously unsafe amounts...and that our detector was broken!  

That was in 2015, and I thought fixing the problem would make me feel so much better, but I've continued to feel a lot of the same kind of symptoms.  I was diagnosed with POTS in 2016, so the symptoms make sense, but I wish they would go away!  I don't believe I had Dysautonomia before the carbon monoxide exposure, I also developed Celiac disease after it, so I'm just a mess!

There's not enough research on the effects of low level (non-lethal) exposure to carbon monoxide, but I think it can wreak havoc on our bodies! 

[Sarahlou]

Hello, I am also so sorry both of you also had to experience this. I, too, had carbon monoxide poisoning this past winter from a leaking furnace and since then have developed POTS and mast cell activation disorder. Prior to the CO exposure, I was an avid runner and have always been incredibly active. One of my first symptoms during the slow CO leak was shortness of breath (the feeling of air hunger like I could never get a full breath). I was also nauseous, fatigued, and dizzy at times, which was always worse on the weekends when I was home more. It’s most likely that the exposure lasted all winter, but when I stayed home from work because of these symptoms in February and progressively got worse to the point of becoming hypoxic and being rushed to the ER, that’s when my POTS developed. Unfortunately, the air-hunger/ shortness of breath has not gotten better despite being removed from the CO. Have either of you also experienced this? If so, did anything help to get better? it’s my absolute worst symptom to the point where I can’t really do anything because I always feel like I’m suffocating despite having 100% oxygen on the pulse ox. I know POTS can cause breathing issues, so I’m wondering if it’s related to that. Any insight would be so much appreciated. I hope you are feeling at least a bit better now. Thank you!

- Sarah

[Bellini]

Same from the exhaust in my car. Then a water heater in a work location. Currently working on recovery options, nothing fully successful yet but... Have had a few intermittent mornings where Pots symptoms are completely gone. Lying HR is high 60's and 83 upon standing. Tested over and over again, different HR monitors too cause I couldn't believe it. I'd be lucky to have a HR under the 90's before. 

Research is limited into low dose CO poisoning but most research shows it takes a long time to recover. 

I'm not patient so, tried IV vitamins from the homeopath to no avail, rented an altitude simulation tent, no results. Latest trial is spin classes, just starting but the PEM isn't there like it used to be. I figure since the CO was starving my body of oxygen I'll force my body to do the opposite. Will update if I can get into a full recovery. 

[Tracee]

There are two places to get information if you have had carbon monoxide poisoning (chronic and acute). The National Carbon Monoxide Awareness Association (NCOAA) is an advocacy group of chronic carbon monoxide poisoning survivors who have researched and found a way to recover. They have been very helpful for me. You can also contact toxicologist Albert Donnay. He will give you the number for a free call in session he does on Sundays for CO survivors, one of the few that specializes in chronic co poisoning. There is also a group on Facebook that shares what they find. (“ Carbon monoxide survivors” Is the name of the group).