Months after decompression (may 2018), I started having some issues with breathing and eye pressure. Almost feels like someone is sitting on my chest. I would feel like I couldn’t get enough air…felt like I was air starved. But I would try to take deep slow breaths and would become even more lightheaded. Yes it sounds odd. I at times even feel like Ive been hyperventilating. Something is wrong. I have even went to be seen by my neurologist and am put on meds for anxiety! I am not an anxious person what so ever! I notice as time goes on the worse its getting and the longer the flare ups are. I did go in for an echocardiogram and do have MVP. Do have issues with palpitation, low heart rate etc. But I just find it odd that this breathing issue started shortly after decompression. Cant be seen because of the COVID 19. I tried being seen and was turned away. I have been feeling horrible for weeks now and cant do a thing about it. I’m scared as hell when I’m up for nights on end struggling to breath or having my heart so out of rthythm. It happens in flareup like all my other Chiari symptoms do. Weather makes it alot worse. Need some input on this. In hopes maybe y’all might have some insight on what could be causing all this.
I have an issue with heart rhythms. Initially it was all minimised as stress ‘Here take a tablet…’, then ‘Ohh it must be anxiety related…’ ‘Here, take another tablet…’ Then one day I was lucky (Or ‘unlucky’ depending on your view). I was in the dr’s office and my heart started to miss and flutter. So I told him then and there. He came over and felt it and he told me I needed to go to the hospital. He told me it wasn’t really serious in my case, but that it needed to be followed up.
Once I was in the hospital system they made the follow up appoints with the relevant specialists.
Now, I’m not a dr nor a cardiologist. But I would recommend that if this occurs you go to hospital and push the point. Many of us neuro patients seem to have a bit of a trait of minimising symptoms or on the other hand many dr’s minimise our symptoms. “Ohh it can’t be THAT bad…” OHH YES IT CAN. Often we need to be our own advocates.
Merl from the Modsupport Team
Get a sleep apnea test where they can also test your oxygen levels. I was just tested - nocturnal oxygen at 69%!! Yikes! I know you don’t like they pushed anxiety meds on you, but some of them are used off-label for certain breathing issues, and doesn’t mean doc thinks it’s “psychological”. ( Although some do!) One of the concerns for chiari is breathing issues, so a sleep apnea test would be in order- even a home study. I didn’t even meet profile for apnea, but sure enough, I have it- both central and obstructive apnea.
My shortness of breath (dyspnea) is what brought me to this site. I started having this 5 years ago at high altitude and needed oxygen therapy at night. During the day I could do little physical activity without a lot of rest. So I moved to low altitude. No longer needed extra 02 at night and could do more physical stuff but the problem persisted. No cause found. A month ago I had 4 weird episodes. Went to ER and the only thing found was high CO2 which has persisted. I insisted on an overnight oximetry and it turns out I am having severe desaturation (low 60-70s over third of the night and in the 80s 90% of the night) with nearly 70 episodes per hour. They appear to be central. I did research myself and found many Chiari people have breathing issues, especially with sleep. Waiting for MRI and sleep study to see if this might be the cause.
RIght now the diagnosis is chronic respiratory failure with hypercapnia. It is sort of scary.