Hi all!! Some of my symptoms are uncomfortable/annoying and some are just down right scary. Wondering if anyone can relate to problems with breathing? Perhaps its not even related to Chiari or maybe it’s a symptom of dysautonomia, either way I don’t know what it is or if anyone else experiences it, but it surely creates an anxiety I’d rather not have! Its always been one of my hardest symptoms to explain. I always just leave it at short of breath, but its so much more than that. Sometimes my breathing will get hung up and it’s like I can’t get enough air in, but my body always compensates by yawning so it fixes itself. What I have problems with is the feeling that my breathing, though normal at 12 breaths a minute, feels slow and depressed. It feels heavy. Like the feeling you get when given too much narcotics and your breathing is shallow. I experienced this feeling when I was given too high of an epidural once and it depressed my breathing and then when I had my chiari surgery I was heavily medicated in the hospital and it was a similar feeling. When this feeling comes over me it feels like all of my nerves and blood vessels are being compressed, like im suffocating at a cellular level. It’s so hard to put words to this Incredibly bizarre feeling, but it is at times terrifying. It feels like im slowly dying. Maybe nothing will happen other than being uncomfortable and scared and anxious because of it. Doctors so far haven’t given much input, my fault as I’ve had trouble explaining the feeling. Can anyone else relate? Is this a dreadful Chiari symptom? Though I wouldn’t wish this on anyone, I’d like to know I’m not alone.
I have a similar feeling but it isn’t constant, I get to where I feel like I am not getting enough air and it scares me. I am nearly always with my small kids so I play it off and I haven’t mentioned it to anyone. My husband also said that at night my breathing is very shallow and there are times that I stop breathing totally and just as he starts to get worried I gasp for air. I was only diagnosed in August of 2017 with Chiari so I am extremely new to all of this. And I am moving to a larger city with a much better medical community so I am hoping to get more answers soon.
Hello!
While I don’t know if it’s particularlly a symptom of Chiari I get the caught yawns all the time and it feels like I can’t catch my breath. I definitely don’t think it’s on the same level as yours though, hoping you get answers soon.
Sara
Thanks to the both of you! I can only figure it could be the Chiari compressing on the brain stem, dysautonomia, or anxiety, because let’s face it, who wouldn’t get anxiety from all the symptoms Chiari causes 
.
Hope we all get answers soon!!!
I have severe anxiety as well, Doctors have been treating it with medication for 6 years now and it is still the same. I also have many other issue that come along with chiari, it is for sure not fun! But we are extremely strong people! We are survivors!!!
I absolutely agree! I believe anxiety is definitely a part of Chiari! Best of luck sweet heart!
I think this is definitely a chiari symptom. My guess is the fact the herniation is putting pressure on the brain stem which is responsible for basic functions like breathing. I didn’t have episodes of breathing issues like you described but I did have sleep apnea at night where I actually stopped breathing. Since my surgery I haven’t nor has my husband noticed the sleep apnea episodes. I am only 3 weeks post-op.
definitely a Chiari symptom.
I had this really badly when my symptoms were at their worst pre surgery.
It felt like I had to make an effort to breathe as if my body wouldn’t breathe automatically any more. My breathing felt heavy like every breath was a work out.
My voice also changed because I couldn’t inhale enough oxygen to speak with the force that produces the pitch that creates my normal voice.
I sounded like a frail old lady.
In my niaivity this was my least bothersome symptom at the time as I was not yet diagnosed and in absolute agony from nerve pain in the back of my neck.
Thankfully i haven’t experienced this since surgery…Phew!
I think we all know this is potentially the symptom that can cause serious complications and certainly shouldn’t be over looked.
Deffo get checked for sleep Apnea if your partner is having concerns about you at night I believe there are machines that can ensure you receive enough oxygen.
If the oxygen in the blood becomes too low it can be very fatiguing ( hence the yawning!) and there are risks that people dont think of such as falling asleep at the wheel of a car asides from the obvious deadly consequences of not breathing at all.
All the best
Thank you all for your thoughts on the subject! I finally called the neurosurgeons office yesterday because of the 24/7 dizziness I’ve had since surgery, 7 weeks post op. I also told the nurse about the strange breathing sensations. She said I shouldn’t be dizzy still, but once she heard me mention the breathing she chalked it all up to anxiety. Tried to explain it’s not anxiety that causes my symptoms, but my symptoms cause me anxiety if that makes sense. I have nothing I’m stressed about other than my symptoms, but she said our chiari bodies have been in high alert for so long that after surgery the brain has to find it’s new normal so it’s still on high alert. I don’t know. I thought anxiety comes and goes, my symptoms don’t stop. Something’s gotta give sooner or later…
Glad you called and hope this symptom goes away soon for you. My Dr’s have brushed it off because of the fact that I have asthma but it doesn’t feel the same to me and my inhaler does nothing to help. I was tested for so many things they don’t know what could be the cause so they tell us anything.
Hi your symptoms are so real - my son gets what you explains too - he keep grabbing his neck and saying his throat is tight and it is hard to breathe - it seems to happen allot more at night than during the day - he has had decompression surgery - there is not more they can do it for him as his fluid is flowing and his syrinxes have shrunk - his fear is so real and so scary to watch - he has not been to school this whole term and now been home schooled as he panics when this happens then cries and it goes into full blown panic attacks - we have tried meds but as it is not a chemical imbalance it is hard to treat - he does not even like going out anymore - so sad to see as mom - I can allot of guilty
To say I understand your situation and concerns is an understatement. I have had a bit of experience with neurosurgeons and neurologists. If they can find another cause or reason for symptoms they seem rather quick to write symptoms off. For me, post neurosurgery, I was told 'Ohh it’s your eyes…" So I got my eyes tested and got glasses. The symptoms continued, “Ohh it’s your top teeth…” so I had them removed and now wear dentures. The symptoms continued, “Ohh it’s you just have a low tolerance to pain…” I attended a pain clinic, tried accupunture, manipulative massage, hydrotherapy, chiropractor. Turns out I do not have a low tolerance to pain, I have a brain injury (I do have a low tolerance for ‘know-it-all’ dr’s and it seems there are so very many of these). I eventually got to a point where I know my ‘regular pain’, if I notice anything over and above what I call regular or a progression of increasing symptoms, I act. I have been to pcp’s who have stated “They operated, they fixed. Just go home” only to have a major incident the following week, then being berated by the surgeon for not following up with him. The fact that I need a referral from a pcp to get an appointment with him makes this argument null and void. Now, if I feel there is an issue I go direct to the hospital. Hey, it maybe nothing, but at least if I’ve followed through it’s not on my head (no pun intended).
They may minimise, deny your concerns or (my favourite) make out it’s all in your head (as if we don’t know that already). They may even label you a hypochondriac but in my view what’s the worst that can happen if there is an issue? DEATH. And if there isn’t an issue? Judgement from a dr. They all make out they know it all. They don’t.
If you are concerned, get it checked out. Give yourself some peace of mind if nothing else.
Merl from Moderator support