Since about February, I've had an increase on gaging on food (having to cough it back up and swallow it again), and then in June I just couldn't get any air into my lungs. They ER docs had no idea what caused it and since then I gag on every meal.
I've also had an increase in palpations and began rapid heart beat, especially when I lie down.
Does anyone have breathing problems? Since about March, when I begin to doze off, I wake up suddenly with the feeling that I had stop breathing (usually when I lie on my back or stomach). Sometimes I wake up gasping.
Does anyone think this is Chiari related? I've set up an appointment to try to get an MRI again with a regular doc, and they,for some reason, don't think it's a good idea. I'm also running out of time to get it because I'm going back to school in 2 weeks.
I originally wanted to get a full spinal, just to have a base line (our insurance is covering it all) and I didn't mention these symptoms. Now I am realizing how much is going on, though my headaches are almost non-existant (WOOHOO!).
These can both be Chiari symptoms. I would consult with your doctor asap! I would also try to get a CINE MRI if possible. Be sure to tell them everything that is going on. If they won't listen try to get in with another doctor or get referred to a NS! Best wishes!
I have autoimmune disease so I ignored alot of my symptoms - The main reasons the are doing the Chiari surgery ASAP was the breathing issues. I developed breathing problems at night and choking during the day, so I guess I progressed into the danger zone. I'm scheduled for surgery Monday the 12th so I'm hopeful that I will be fixed. Tell your DR ASAP, I'm not sure how dangerous it is no one was real clear with me, but I do know even with HMO I was cleared for surgery in under 2 weeks. Be careful going to the ER they don't seem to understand this to well. Good Luck - Stay Strong
The symptoms sound familiar with what my granddaughter has at times. She had her surgery 4 years ago, but still has gagging and spells of throwing up. She starts coughing and then gags up her food. It doesn't happen as often as before her surgery.
My son stopped being able to eat this summer and ended up hospitalized for failure to thrive. They ran every test imaginable and found nothing. He’s gagging and spitting his food as well. He has other special needs and can’t talk to tell me how he’s feeling. It’s frustrating that so few docs understand this stuff. Any chance that you have a connective tissue disorder? There seems to be a link there. We think my son may have Marfan Syndrome.
Have most of you had decompression?I had no gag before the surgery,afterwards Ihad lots of trouble eating and taking meds.I’m 9months out and still have mild swallowing problems that has gotten better.My breathing issues seems to be upon standin, at times,that’s not the only time that breathing is a issue if Iwalk to fast or talk too fast I have to stop and wait for my breathing to calm and go back to normal.There seems to be another problem,one that has been part of my symptoms all along but worsened after decompression,even though the chiari has improved greatly,they still linger.
I get the gagging and choking when eating. I have more recently been getting nausea and vomiting when eating a meal too. It is chiari related for me and have been given antiemetics which have an effect on the vagus nerve.
As for fast heart rate on laying down, I’m wondering if it is the vagus nerve being stimulated as with the dysphagia and the nerve is overactive right now hence the choking and sat heart rate.
Clearly, you are hearing that many patients with Chiari have similar symptoms. In pre-verbal children, central sleep apnea and dysphagia(trouble swallowing) are the most common presenting symptoms. In addition to the imaging studies(and you do want a head and entire spine MRI from sometime in the past 6 months(sooner if symptoms are changing), a cine sequence would be a bonus), you want to consider a sleep study(usually done by a pulmonologist) and a swallow study(usually done with GI and/or speech therapy). The sleep study will be able to distinguish between peripheral(obstructive) sleep apnea, more common in heavy patients or patients with inflamed tonsils, from central sleep apnea(raising the concern of the Chiari). The swallow study will look at swallowing coordination. See if your PCP can coordinate the studies and their results. If not, neurology or neurosurgery can assist.
I don't have the gagging but I am suffering with the breathing issue you have. I have it more when I am sleeping and wake up and feel like I can't take a full breath. Actually today it feels like it is lingering from last night. That is the one symptom that has come back full force. I am getting a CINE mri next week. I also had like a week ago the same increase in heart rate that was fluctuating for like an hour. So weird! Starting to freak me out. A NS I saw last week does not know what is causing that yet and I told him all lung function tests came out normal. They want to do a sleep study but if I am feeling the same during the day, how can it be sleep apnea? Doesn't make sense. I told my NS that someone on this board told me that she had surgery because of this saying something like the nerves in her brain that control lungs and diaphragm are being compromised by herniation. He didn't really say much about that so I don't know. It has to be Chiari related. Every thing else is normal. I just want to cry. I can't sleep, I can't exercise and it is really starting to depress me. I really need some answers as well. I am a very active person and this debilitation is getting to me. Surgery really scares me as well.
The sleep study helps differentiate respiratory drive issues. Pulmonary function tests look at lung function. If the issue is related to the Chiari, it is autonomic/unconscious in nature, Conscious respiratory effort will not be affected so PFTs should be fine(it's when the automatic portion of the brain is supposed to be doing the breathing work that the Chiari causes problems).
lidia said:
I don't have the gagging but I am suffering with the breathing issue you have. I have it more when I am sleeping and wake up and feel like I can't take a full breath. Actually today it feels like it is lingering from last night. That is the one symptom that has come back full force. I am getting a CINE mri next week. I also had like a week ago the same increase in heart rate that was fluctuating for like an hour. So weird! Starting to freak me out. A NS I saw last week does not know what is causing that yet and I told him all lung function tests came out normal. They want to do a sleep study but if I am feeling the same during the day, how can it be sleep apnea? Doesn't make sense. I told my NS that someone on this board told me that she had surgery because of this saying something like the nerves in her brain that control lungs and diaphragm are being compromised by herniation. He didn't really say much about that so I don't know. It has to be Chiari related. Every thing else is normal. I just want to cry. I can't sleep, I can't exercise and it is really starting to depress me. I really need some answers as well. I am a very active person and this debilitation is getting to me. Surgery really scares me as well.
So the automatic portion of the brain does not function properly because of the Chiari? What can help that and does it go away? Cause for me it has been an on and off thing. Had it 7 yrs ago, but also during the day, not just when I sleep.
That's part of the frustration. It hits different people differently. Just like head-aches, the symptoms can sometimes be present, and sometimes improve. Probably related to pressure that we can't directly measure at the foramen magnum(but that is speculation). You can be affected when you are awake(because you are not conscious of your respiratory effort most of the time). Coordination of the lower cranial nerves can also be affected(swallowing, handling saliva, etc).
lidia said:
So the automatic portion of the brain does not function properly because of the Chiari? What can help that and does it go away? Cause for me it has been an on and off thing. Had it 7 yrs ago, but also during the day, not just when I sleep.
Surgery is the only treatment that will affect the Chiari(since it is an anatomical issue). However, most(at least 80%) of patients with Chiari never need surgical treatment. The trick is getting the correct diagnosis(hence the need for neurological evaluation, and other studies). In your personal case, it is unclear to me whether the Chiari is the source of the symptoms and I would suggest further work-up as above.
Thank you for your response to my questions. It seems after the CINE MRI the sleep study is the last one. I have every test from cardiac to pulmonary done and all clear. I am at a loss. I know it's Chiari but just don't know what to do next. Just keep hoping I will wake up and all will be normal again like in the past.
I also wanted to let you know how I actually try to deal with this. When I am having these episodes I actually have to sleep sitting up. I prop up my couch big pillows with my bed pillows behind me and sleep kind of slanted in an upright position. It seems to help my respiratory issue subside after a while and I can fall asleep. I also have a massage chair that I have that when I am feeling this way the massaging helps to relax me and I have a better and easier time falling asleep. If you have a sectional sofa, which I do, I sit up sometimes in the middle because it's curved. Seems to help me. Hope some of this of this is of some help to you too.
