Hi, I have a question for anyone, I was wondering if anyone experiences breathing issues? I can't seem to take a full breath at times and have had full breathing work ups and lung xrays. All normal. But I notice when I try to take a deep breath,the back of my neck feels achy and stiff. This happened to me several years ago now it's back and wont go away.
Does anyone experienc this?
What is the cause? And what kind of Dr. should I see for this? I went to Pulmonary doc and Alergist? Should I go to a Osteopath or Neurologist?
i also have breathing issues, i get lightheaded and need to stop talking, or sometimes stop moving,
i found to relax my breathing helped, conrolled breathing, ive even been to a breathing therapist, you was trying to get me to breath better, lol that didnt help,
its frastrasting but its ok, ive also had my oxygen levels tested when im like this and they are within normal range,
so try not to painc, and relax your breathing, see if it helps,
joelenee\
I have had weird breathing issues, they ran some tests and basically came back with capacity is not what would be expected and that I don't have asthma. I will run out of breath when talking. I will not be able to "take a deep breath and hold it" (CT and MRI and Stress ECG) and other times when I get tachycardia my breathing is very rapid and shallow, the worst was one time when I went unconscious, I stopped breathing entirely, it happened at a doctor's office, that was when they started taking all my weird collection of symptoms more seriously. This was the event that finally led to a dx.
Yup, I used to be able to walk 2-3 miles but couldn't wash my car? Had an O.B. say it was all in my head yet in the E.R. later that day my pulse ox was at 50 and my blood pressure was shot. Some days I'm fine and some I'm not.
Sarah
Since my Pulmonary appointment was normal he suggested a GI dr. He could scope me or another xray with dye. I started Prilosec for anti inflammatory for esophagus to try on my own. I felt ok for a while and now that I stopped for a bit it started again and now I have to stop going to the gym again. I don't know if it's the stopping of Prilosec and go to GI dr or what. I know there are no meds for what we suffer with it is all symptomatic and we have to deal with it as the symptoms come and hope something will help. I just don't want to die from not breathing.lol I hate that there are no real answers.
I will try some homeopathic things too. Any suggestions?
Lidia
Emmaline said:
I didn't see anyone for it. With my experience with Chiari symptoms, treatment doesn't always work. I've had GI symptoms on and off all my life, and every test comes out negative. But the symptoms are THERE. I think Chiari does a number on us, and you may not get relief for all symptoms.
There really is no treatment for all things, so I prefer to treat holistically, or homeopathically. You have to find something that works for you.
It's so weird cause one day I'm fine, and then it will hit me. For me it's always when I'm doing something, sometimes it's when I lay down. One time for like a week, I couldn't sleep laying down, I had to sleep sitting up cause I felt like I had no air. Can't get a full breath. I just feel like I don't know where else to go. so frustrating. so thankful for this board and talking to people who know I'm not crazy and what I'm going through.
Lidia
joelene hossacI k said:
i also have breathing issues, i get lightheaded and need to stop talking, or sometimes stop moving,
i found to relax my breathing helped, conrolled breathing, ive even been to a breathing therapist, you was trying to get me to breath better, lol that didnt help,
its frastrasting but its ok, ive also had my oxygen levels tested when im like this and they are within normal range,
so try not to painc, and relax your breathing, see if it helps,
joelenee\
lidia said:
It's so weird cause one day I'm fine, and then it will hit me. For me it's always when I'm doing something, sometimes it's when I lay down. One time for like a week, I couldn't sleep laying down, I had to sleep sitting up cause I felt like I had no air. Can't get a full breath. I just feel like I don't know where else to go. so frustrating. so thankful for this board and talking to people who know I'm not crazy and what I'm going through. I was even given an inhaler and it made me feel worse.
Lidia
joelene hossacI k said:i also have breathing issues, i get lightheaded and need to stop talking, or sometimes stop moving,
i found to relax my breathing helped, conrolled breathing, ive even been to a breathing therapist, you was trying to get me to breath better, lol that didnt help,
its frastrasting but its ok, ive also had my oxygen levels tested when im like this and they are within normal range,
so try not to painc, and relax your breathing, see if it helps,
joelenee\
That is so crazy. Did they say Chiari caused you to pass out or your tachycardia? That's crazy. I am afraid to go to cardiologist incase they make me do a stress test again and this time I will pass out because of my breathing stuff. What really stinks is that I was working out on an elliptical for 40 minutes per day and was fine. Why and how all of a sudden I was a work out freak and now I'm lucky I can go do 30 of lite exercise? I am soooo upset about that not to mention confused!
Lidia
painintheneck said:
I have had weird breathing issues, they ran some tests and basically came back with capacity is not what would be expected and that I don't have asthma. I will run out of breath when talking. I will not be able to "take a deep breath and hold it" (CT and MRI and Stress ECG) and other times when I get tachycardia my breathing is very rapid and shallow, the worst was one time when I went unconscious, I stopped breathing entirely, it happened at a doctor's office, that was when they started taking all my weird collection of symptoms more seriously. This was the event that finally led to a dx.
They have found that I am missing the right vertebral artery, which is suspected of causing vascular insufficiency to the cerebellum. They think this caused me to pass out. I have what some doctors call Chiari 0 (my posterior fossa is small and crowded) and something called atlanto-occipital assimilation with basilar invagination, and that at that junction my vagus nerve gets obstructed or irritated, causing the heartbeat issues, and breathing issues, but no one really knows and there is no surgery anyone would be willing to attempt. I am supposed to do a tilt table test but I have been avoiding it.
lidia said:
That is so crazy. Did they say Chiari caused you to pass out or your tachycardia? That's crazy. I am afraid to go to cardiologist incase they make me do a stress test again and this time I will pass out because of my breathing stuff. What really stinks is that I was working out on an elliptical for 40 minutes per day and was fine. Why and how all of a sudden I was a work out freak and now I'm lucky I can go do 30 of lite exercise? I am soooo upset about that not to mention confused!
Lidia
painintheneck said:I have had weird breathing issues, they ran some tests and basically came back with capacity is not what would be expected and that I don't have asthma. I will run out of breath when talking. I will not be able to "take a deep breath and hold it" (CT and MRI and Stress ECG) and other times when I get tachycardia my breathing is very rapid and shallow, the worst was one time when I went unconscious, I stopped breathing entirely, it happened at a doctor's office, that was when they started taking all my weird collection of symptoms more seriously. This was the event that finally led to a dx.
I was told that there was no Chiari zero, of course I’ve been told I have it and I don’t have it. I wonder if yours is “mild Chiari” like me? Some MRI pictures don’t show any herniation while others show just slight herniation. My pain level does not match with the herniation. I’ve beeniseable for awhile. I also have trouble exercising, just vacuuming wipes me out. I had a sleep study done and was relieved to find out my heart is fine. I had an EKG come up weird. My sleep is messed up because I rarely get to REM. I also stop breathing but after talking to others mine is very slight only 70 the whole night. Some friends were having over 100 an hour. So sorry painintheneck sounds like you have so much to deal with! Do you get light headed when you first stand up or is it all the tine? I’m curious about this Chiari zero since the Neurologist that said there was none also failed to find mine?
Lidia I so hear you on the exercise, I would work out about 50 minutes everyday. Now just going up the stairs is a workout! Last year I was washing the car and I couldn’t finish. I sat on the lawn and pretty much panted for a half hour. It took hours for my cheeks to not feel hot and look so flushed. The relaxed breathing is a great idea. I have found though that when I have these breathing issues, I just can’t catch my breath? I just have to rake it easy and it will go away. When it’s my anxiety it’s a whole different story. I feel like they are two different situations (at least for me). The controlled breathing has really worked for two if my girls when their anxiety was at it’s worst. Thanks for mentioning it, awesome tip!
Sarah
I have definetely heard of Chiari zero. What that is, I have no idea. This Chiari thing is such a mystery! I have asked my husband if my breathig sounds weird when I sleep and he said no. It happened to me like 7 years ago for like a week then started again last year but a lot worse. I work as a waitress at night and when I a busy it really kills me and when I go home and am relaxed it's even worse. It's only at times not all the time. So weird. I just don't know why a doctor can't tell me they see something. It really is so upsetting. How can everything so far come out normal and it's not? I hope it goes away as fast as it comes. I want' my active life back. I want to work out for an hour and go running again. Does yours come and go too or is it constant? I find that when I get a back rub or neck massage it really helps me with my breathing. I don't know why but it helps me get that full breath my body is craving. Anxiety and my breathing are two different situations for me too. I try to do relaxed breathing too, plus think that it will subside like before. But I do feel like I'm going to pass out when I keep trying to get that full breath and I am loosing oxygen when I keep trying. Then just keep faking a yawn to do it. I just don't want to pass out cause I'm afraid that if I pass out I will stop breathing. So scary!
Sarah Pugmire Baron said:
I was told that there was no Chiari zero, of course I've been told I have it and I don't have it. I wonder if yours is "mild Chiari" like me? Some MRI pictures don't show any herniation while others show just slight herniation. My pain level does not match with the herniation. I've beeniseable for awhile. I also have trouble exercising, just vacuuming wipes me out. I had a sleep study done and was relieved to find out my heart is fine. I had an EKG come up weird. My sleep is messed up because I rarely get to REM. I also stop breathing but after talking to others mine is very slight only 70 the whole night. Some friends were having over 100 an hour. So sorry painintheneck sounds like you have so much to deal with! Do you get light headed when you first stand up or is it all the tine? I'm curious about this Chiari zero since the Neurologist that said there was none also failed to find mine?
Lidia I so hear you on the exercise, I would work out about 50 minutes everyday. Now just going up the stairs is a workout! Last year I was washing the car and I couldn't finish. I sat on the lawn and pretty much panted for a half hour. It took hours for my cheeks to not feel hot and look so flushed. The relaxed breathing is a great idea. I have found though that when I have these breathing issues, I just can't catch my breath? I just have to rake it easy and it will go away. When it's my anxiety it's a whole different story. I feel like they are two different situations (at least for me). The controlled breathing has really worked for two if my girls when their anxiety was at it's worst. Thanks for mentioning it, awesome tip!
Sarah
Lidia,
My definitely comes and goes. I really wanted the ER to send the report to my OBGYN with a note saying “in my head?” but I didn’t. 
My PCP is the one that has figured out things that the OB should have known so I just go to him now. I’m less active now so the attacks don’t seem so extreme? It is so frustrating. I saw a Chiropractor because my massage therapist was nervous, this was before my diagnosis. When I breathed out he pushed down I could feel the difference it felt like I had all this extra air! When I went back and he did it again it felt like I was right back to struggling for air. I stopped going. I got to the point where I don’t let anyone touch me since my triggers were so many and it just wasn’t worth it.
I don't even know exactly what my trigger points are. Sometimes I'm fine and then I could still do the same things and then, "BOOM", here they are again! I don't know if my esophogus is the culprit or diaphragm. I haven't done the gastroenterologist yet. I went to the massage therapist and when I feel this way the massage somehow helps my deep breathing. My herniation is a 7mm. Unless it has changed. I don't even know if it does. Do you know if it changes? I just don't want to keep getting scans because of the radiation. Cause why can you be fine then all of a sudden, out of no where, you get hit with these array of symptoms. 7 years ago my symptoms were so bad I could barely function. I was so tired and drained, I couldn't do house work without lying down in between, I had this awful ringing in my ears, my gait was off, I felt like I just got off a boat. Then, one day it all started to go away. What the hell? This is so bizarre! I hope it subsides again cause this is aweful!
Lidia
Lidia,
I too find the symptoms the most frustrating and totally agree with how I can be fine one day and then not the next. I have never figured that one out. My PCP did tell me something that seems to fit. He compared migraines to a glass of water some says you do certain things and it causes the glass to overfill but the next day maybe you didn’t do a few if those things so the glass is only half full. I also have discovered that your body has the ability to hold it off it’s like it knows you have to get through something. When I worked the migraines would hit as soon as I got into the car or when I walked into my home. My massage therapist could do the exact same thing and sometimes I was better and other times I was worse.
On the MRI scans they are magnetic so there is no radiation. You and I are in the watch and see so yes I would get an MRI once a year or sooner if you feel something may have changed. I don’t know what triggers all the symptoms and pain, we are born with Chiari but I imagine that things could cause the herniation to grow. I’m at where you were seven years ago. Doing laundry is draining, I used to actually enjoy it. I’m trying pain blockers right now and I’ve had luck with massive amounts of caffeine. The pressure never goes away but the pain does for a little bit so I can catch my breath. I used to be able to break the cycle but I can’t anymore. Let me know if there is anything else? I’ve also found the site conquerchiari.org to be very helpful.
Hope to hear from you soon! Good luck.
Sarah
My symptoms come and go too, I have become very heat intolerant, during the summer everything is aggravated and symptoms are worse. My breathing is more difficult when we have bad air quality days (from smog and pollen). I put my mri up on my profile hoping someone has something similar to me. My report describes the small posterior fossa and crowding but no herniation. I found an article out of India describing CM 0 as a small crowded posterior fossa. That is why I joined this group, it was the closest thing to what I am experiencing. My NS says he is most concerned about my missing C1 and my C2 is pushed up into the skull and has deformed my foramen magnum. He says the surgery to correct that will be very risky with the missing vertebral artery, he says he will only do surgery if or when I become a parapalegic, he says that since I am still able to walk he would not do it, he gave me 1 to 20 years. If the articles I read are any indication age 46 is the average age for parapalegia, I am 44 now. I am counting on the 20 year estimate!
Oh wow! I learn something new everytime I talk to someone. I should read more articles about this. you have no herniation, but there is crowding and you have no C1? So that must be what caused the crowding. I just wonder how then my herniation came about. I have had xray's of my spine when I was younger and I wonder why it never showed. Does it just occur, does it change? I wonder cause if there is chance of parapalegia then something must change, or does the nerve wear down? This all just confuses me more and more. Do you feel any pinched nerve sensations or numbing at all? Do you ever get sleep paralysis? I will pray for the 20 year estimate for you as well. Maybe there are things you can do to prevent or keep it from happening eary.
painintheneck said:
My symptoms come and go too, I have become very heat intolerant, during the summer everything is aggravated and symptoms are worse. My breathing is more difficult when we have bad air quality days (from smog and pollen). I put my mri up on my profile hoping someone has something similar to me. My report describes the small posterior fossa and crowding but no herniation. I found an article out of India describing CM 0 as a small crowded posterior fossa. That is why I joined this group, it was the closest thing to what I am experiencing. My NS says he is most concerned about my missing C1 and my C2 is pushed up into the skull and has deformed my foramen magnum. He says the surgery to correct that will be very risky with the missing vertebral artery, he says he will only do surgery if or when I become a parapalegic, he says that since I am still able to walk he would not do it, he gave me 1 to 20 years. If the articles I read are any indication age 46 is the average age for parapalegia, I am 44 now. I am counting on the 20 year estimate!
I have only had migraines maybe two or three times. I have no pain but sometimes I will get pressure in the base of my skull. Not always. When I had symptoms 7 years ago it was for months. So crazy! Then little by little it went away. I was fine for 7 years! Then about a year ago slowly my breathing started to get a compromised. I can't run anymore and sometimes when I walk it's like I have no breath. But that's just sometimes. I just don't understand. I am living in VA now so I am going to go to one of the Doc's here and just get an MRI to see if my 7mm herniation has changed. I wish I could go to the Chiari Institute in NY but I just don't have the money right now. When I finish with all the docs here and get no answers, like I have in the past, then I am going to save and do the proper tests there. I just hope the symptoms go away like last time and I can have my active, my "Full" active lifestyle back.
Well, I hope you are having a good day!
Sarah Pugmire Baron said:
Lidia,
I too find the symptoms the most frustrating and totally agree with how I can be fine one day and then not the next. I have never figured that one out. My PCP did tell me something that seems to fit. He compared migraines to a glass of water some says you do certain things and it causes the glass to overfill but the next day maybe you didn't do a few if those things so the glass is only half full. I also have discovered that your body has the ability to hold it off it's like it knows you have to get through something. When I worked the migraines would hit as soon as I got into the car or when I walked into my home. My massage therapist could do the exact same thing and sometimes I was better and other times I was worse.
On the MRI scans they are magnetic so there is no radiation. You and I are in the watch and see so yes I would get an MRI once a year or sooner if you feel something may have changed. I don't know what triggers all the symptoms and pain, we are born with Chiari but I imagine that things could cause the herniation to grow. I'm at where you were seven years ago. Doing laundry is draining, I used to actually enjoy it. I'm trying pain blockers right now and I've had luck with massive amounts of caffeine. The pressure never goes away but the pain does for a little bit so I can catch my breath. I used to be able to break the cycle but I can't anymore. Let me know if there is anything else? I've also found the site conquerchiari.org to be very helpful.
Hope to hear from you soon! Good luck.
Sarah
Sorry that you are struggling so. I too hope that you are the 20 year estimate. All this crap started happening when I was 39, whatever happened to 40 is the new 20? I'm worried about summer it was bad last year but my symptoms are much more severe this year. I hate to be too warm already and know I have all of this stuff to deal with. With so many on here hopefully someone has something like what you are dealing with. Have you also looked into a 2nd opinion or have you already done that? I know for me it so hard to know what symptoms are from the Chiari and what is just normal wear and tear. Like today I got up and felt great, granted I didn't wake up until 5 in the afternoon but sure enough within an hour I started feeling a headache coming on and the pressure in the neck that never seems to go away. It's almost mean how it teases us in how it feels to be normal only to take it away again.
Sarah
painintheneck said:
My symptoms come and go too, I have become very heat intolerant, during the summer everything is aggravated and symptoms are worse. My breathing is more difficult when we have bad air quality days (from smog and pollen). I put my mri up on my profile hoping someone has something similar to me. My report describes the small posterior fossa and crowding but no herniation. I found an article out of India describing CM 0 as a small crowded posterior fossa. That is why I joined this group, it was the closest thing to what I am experiencing. My NS says he is most concerned about my missing C1 and my C2 is pushed up into the skull and has deformed my foramen magnum. He says the surgery to correct that will be very risky with the missing vertebral artery, he says he will only do surgery if or when I become a parapalegic, he says that since I am still able to walk he would not do it, he gave me 1 to 20 years. If the articles I read are any indication age 46 is the average age for parapalegia, I am 44 now. I am counting on the 20 year estimate!
I know what you mean. You feel good, then all of a sudden "BAMM" You get symptoms. That's how it is when I start going to the gym. I feel great for a week then the next week it all goes to crap cause I have to stop! Ugh! So frustrating! I think it's if I start putting some sort of pressure on my neck muscles. They tighten up cause I'm working them out too then they get stiff and I start having breathing issues. I can't see getting a second opinion when I I know I have it and I keep getting the same run around from every single Doc. That's why I just want to say screw them all and just go the instute in NY. I'm just done with spending the money and just spend it where it will count.
Lidia
Sarah Pugmire Baron said:
Sorry that you are struggling so. I too hope that you are the 20 year estimate. All this crap started happening when I was 39, whatever happened to 40 is the new 20? I'm worried about summer it was bad last year but my symptoms are much more severe this year. I hate to be too warm already and know I have all of this stuff to deal with. With so many on here hopefully someone has something like what you are dealing with. Have you also looked into a 2nd opinion or have you already done that? I know for me it so hard to know what symptoms are from the Chiari and what is just normal wear and tear. Like today I got up and felt great, granted I didn't wake up until 5 in the afternoon but sure enough within an hour I started feeling a headache coming on and the pressure in the neck that never seems to go away. It's almost mean how it teases us in how it feels to be normal only to take it away again.
Sarah
painintheneck said:My symptoms come and go too, I have become very heat intolerant, during the summer everything is aggravated and symptoms are worse. My breathing is more difficult when we have bad air quality days (from smog and pollen). I put my mri up on my profile hoping someone has something similar to me. My report describes the small posterior fossa and crowding but no herniation. I found an article out of India describing CM 0 as a small crowded posterior fossa. That is why I joined this group, it was the closest thing to what I am experiencing. My NS says he is most concerned about my missing C1 and my C2 is pushed up into the skull and has deformed my foramen magnum. He says the surgery to correct that will be very risky with the missing vertebral artery, he says he will only do surgery if or when I become a parapalegic, he says that since I am still able to walk he would not do it, he gave me 1 to 20 years. If the articles I read are any indication age 46 is the average age for parapalegia, I am 44 now. I am counting on the 20 year estimate!