Chiari Online Support Group

Stoped breathin

#1

Hey everyone so this morning I woke up in so much pain the back of my neck is killing me and what’s worse is last night my husband woke me up cause I was not breathing he had to push on my chest and I coughed so much I started to throw up now I’m hurting so bad any ideas?

#2

Sounds like Sleep Apnea which can be a symptom of Chiari.
Ive had this a few times usually I’m not aware of it when it’s happening my partner wakes me up it scares him but several times I’ve been aware and desperately trying to breath in and my throat has been closed, it’s an awful feeling of suffocating.
Definitely talk to your GP and neuro about this as it can potentially be quite serious if it gets worse. There’s a machine called a (CPAP) that uses positive airway pressure to help you breathe at night.
They can test for Sleep Apnea they give you a machine to sleep with for a few nights and it records your oxygen intake and any sessations of breath.
Hope this helps
All the best

#3

Dear Ericabak,

Oh, my! I had many episodes of cessation of breathing - and it is terrifying! For me, the breathing issues began well into my 9th year of symptoms - and I was pretty much at death’s door, then. Since I lived alone, I don’t think my breathing stopped at night - or I would not be here still. But, during the day, my diaphram would just stop working - and I’d have to consciously inhale and exhale - until the diaphram came back ‘online.’

The brain stem is in charge of everything automatic - including the entire cardiovascular system - and breathing! So, depending on how badly your brain stem has been squished from the Chiaris - then that will depond on how good-or-bad your autonomic CNS is going to function. Post-decompression surgery, I hardly ever lose breathing function anymore. Every now and then - on a BAD day, it will happen - but only for a few seconds, now. Whenever I have lost diaphram function, though, it ALWAYS triggers a massive panic attack. :persevere: And, no doubt! You kinda need to breath!

I did go to sleep labs and ended up on a CPAP machine for 2-years, and it did absolutely no good. They tried adjusting the machine in so many different ways - but it never helped my sleep one iota. Now, I know why! It was my brain stem that was so messed up. Brain stem was getting the “Chiari Squish.” That brain stem is often called your brain’s “spark plug.” It fires your brain awake in the morning, tells your brain to shut down at night. Controls every part of your body you don’t have to think about (bowels, breathing, heart stuff, eye focusing and tears, reflexes. Wow. Lots of stuff.) Because my brain stem was not functioning, I never could fall asleep at night (had to tranquilize myself every night) and never really woke up during the day (why I was diagnosed with Chronic Fatigue Syndrome). Crazy brain!

Now - 6 years post-surgery - I only occasionally have extremely violent coughing fits. But, that’s every time I aspirate food/water. I’ll get stuff in my lungs only when my gag reflex in the throat fails. The reflex fails to close off the windpipe when food/water is cascading down. On bad days, even saliva dribbles into my lungs - and I’ll erupt into a barking coughing fit. At times, the fit is so bad, I start to heave. My lungs didn’t used to be strong enough to cough out foreign fluids, though. Not until I got into power walking on my “good” days. Then, my lungs got enough “OOoompff” I could finally cough out everything I breathed in. I’ve come to think of the cough as my BFF - because if we don’t cough, we’ll get pneumonia. I’ve met a few Chiarians who get pneumonia regularly - because they don’t cough it out. (some of them don’t even feel it when they aspirate gunk! Their gag reflex AND their entire respiratory system are numb! That is sad.) Hope your hubby continues to be your guardian breathing coach!

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#4

I assume since you posted this on the Chiari site that you have been diagnosed with a Chiari malformation.

Understand that a sleep study can differentiate between obstructive sleep apnea(due to airway obstruction that can be helped with a CPAP machine that forces the airway open when triggered for a breath) and central sleep apnea(perhaps caused by Chiari pressing on the brain stem and preventing normal breathing patterns).

That distinction is important. The most common cause of death in Chiari patients is central sleep apnea(going to sleep, “forgetting” to breath, and never waking up).

This is something you need to discuss with your primary care MD soon(now) and, if recurrent, consider a sleep study. If the sleep study confirms central sleep apnea, discuss your case with a neurosurgeon(central sleep apnea is a direct indication for surgical decompression).

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#5

Hello and thank you for this reply, i’ve been having trouble with breathing and heart palpitations and this helped to make some sense of it all. I hope you are doing well!

#6

Dr. Trumble, I have watched a couple of your You Tube Videos and actually just got done watching one a little bit ago. I could relate to so much of your talk, I would love to sit down and chat with someone who had your knowledge on the topic. BTW, I would be the one that would be your only Data on Hydrocephalus w/Arnold Chiari. In the video you mentioned that you have none.
If there were any seminars locally, I would be right there because after keeping all of this a secret for 40+ years, I ended up knowing nothing about what I was going through except that I had to struggle 10 times harder in life to get half of what most people would call a good life. But I am happy with what I have achieved in spite of it all.
I still have the headaches, dizziness now and then, virtually no sense of balance it is like my balance is visual. If I close my eyes I will fall over. It’s crazy and humiliating, but I have pulled it off. I was recently put into Physical Therapy by my Family Doctor and it helped a lot, temporarily …it’s like my brain is forgetting everything it learned…
Anyway, My Therapist asked if I would be comfortable with being the subject of a local university student groups Physical Therapy paper that they had to do for class.
I agreed to do it. I was the last appt of the day and once everyone was gone, she allowed them to come into the room. Her only request was that they must not let me fall down. They proceed to put me through so many things that I failed, kicking a ball, walking up a step without railing to hold onto, rising from a chair without assistance, catching a ball…etc… But when they asked me to walk around the room with a gait belt on, they were astonished. She said you can really fake balance very well in this activity… I can’t fake it as well as I could in that time…unfortunately. But, I have been doing this a very long time so I can hold my own. Not all that well, but still can for the most part.

Anyway, One thing that I have always been told is that I am a scary noisy sleeper, I live alone and always have, but on vacation I share rooms with people for money reasons. And I have recently been getting so tired that I fall asleep in mid sentence in a car as passenger, I have fallen asleep at a Stop sign…very scary… I said something to my Family Doctor and he ordered a home oximetry study… I did that, returned it and thought nothing of it but was prescribed Modanifil to keep me awake at work. Well a few days later, A local medical supply store called and asked when they can deliver my oxygen. They proceeded to tell me that my Doctor had prescribed it for night time use at 2 liters. And that insurance had approved it and were paying 100% of the bill deductible did not apply?? I was going to refuse it but realized, if he was going to prescribe it and Insurance was going to foot the entire bill, something was up. So I had it delivered… (best night sleep I had enjoyed in so long)…Finally went to see him to find out exactly what was going on. He ordered a formal sleep study and said that my Pulse ox levels were alarming to say the least. He was sure that he would see some issues, but did not expect to see what he saw, my oxygen levels dropped into the 60’s as I was falling asleep and stayed there pretty much 80% of the night.
I went for the sleep study and the Tech was luckily a very good man, very easy to relate to…He showed me the graph of my home study and my jaw hit the floor. my doctor was not over reacting when he told me how bad it was. So, anyway, The tech told me that he had his suspicions after seeing the Chiari and the shunt history. He said he wanted to start the test as normal, and would add oxygen in the night if need be and then possibly end up with CPAP if it was warranted. After finally falling asleep he came in around 2:30am and woke me up. He said that my oxygen levels were hitting dangerous lows. He proceeded to bypass the oxygen and just go straight to CPAP. I then went back to sleep eventually, in and out over the rest of the night.
When he came in to wake me up in the morning, he said that he had seen a enough to tell him his suspicions were right and I needed CPAP at least and depending on the Doctor’s opinion, it was more likely to be Central Sleep Apnea that would most likely require a special CPAP machine or something like that.
So, I should have listened 20 years ago to family and friends that have heard me gasp for air at night. It almost seems I have been risking my life every night or at least the health of my internal organs for many years. But mainly I think since my shunt broke, is when it all started to get really bad.

Now I am sitting on the edge of my seat waiting for medical supply to call, that graph of my oxygen levels haunts me. (I took a picture without his knowledge.)

Sorry to have been so wordy and I hope it makes some sense. But I was trying to get so many thoughts out of my head.

Thanks for reading, Dennis