The subject of breathing difficulties come up regularly in the support groups I am in. There are various levels of not being able to breathe well and different causes, but sometimes it is not being able to breathe at all during a dystonic spasm just like I do. Hearing “me too” can be one of the most comforting phrases, if it comes from someone who experiences the same…. It can be frustrating though to hear it followed by advice about relaxing and focusing on breathing, and you realize the person maybe didn’t quite understand what we meant by not being able to breathe. I end up trying to explain again what it’s really like not being able to breathe at all and wonder if it is possible to really explain it to someone who hasn’t experienced it.
Of course, this issue is of even greater importance when I’m trying to talk to doctors about it, but even then I seem to have a hard time getting across what I really mean. These doctors have never felt like what it is to have a dystonic spasm, let alone not be able to breathe because of it attacking the diaphragm muscle.
This whole concept of my not being able to breathe due to dystonic spasms in my diaphragm is hard to describe…. It should be simple, I breathe in and it forgets to stop spasming and just keeps getting tighter. Somehow it’s hard to convey that when I say “I can’t breathe” I am being absolutely literal, I’m not using a figure of speech. I don’t mean I’m struggling to breathe, or it’s hard to breathe, I mean, there is no breathing happening at all. No, actually, its worse than that. My body is fighting against me, and it feels like it’s trying to suck the very life out of me. Those who have experienced the same “get it” but those who haven’t experienced it often end up assuming it’s something else, something a person can work through if they focus and relax.
I have hyperventilated before, this is not like that. I have had a panic attack before, this is not the same. I have had a baby pushing up against my lungs making it difficult to breathe, but that is totally different. I have had pneumonia, and bronchitis, with very labored breathing and that doesn’t even begin to compare. I’ve had tightening of the chest muscles in my rib cage for one reason or another, and that is not what I’m talking about. I’ve had dystonia twisting my body up so much it is difficult to get enough room to breathe…. But that is still not even a comparison, because all of these are difficulty breathing, not the literal not being able to breathe.
I find myself trying to explain over and over again. So, I’m writing this down as a blog post in an effort to explain it, again, perhaps in a way that might make it a little easier to picture. I’m writing this for myself, so I don’t have to keep explaining any more, but I’m also writing this on behalf of the unfortunate few who go through it too. I am going to do things a little different then I usually do. I’m going to add graphics to help give a better picture, and actually post quotes from a website too… I’m not asking for sympathy, just trying to help those who haven’t experienced it to understand a little better what I mean when I say I can’t breathe.
Dystonia is the brain causing muscles to involuntarily do things they don’t normally do… It causes spasms that can cause twisting that clamps down and gets tighter and tighter until it jolly well decides to let up.
Those spasms can last for seconds, minutes, hours, days, or in some cases, forever, causing a “fixed” posture of the affected area. It supposedly only affects the muscles that we can control voluntarily, and leaves alone the muscles that function on their own like the heart for example…. While that fact is being debated by some, the truth is, while our bodies breathe without us thinking about it, we can hold our breath, we can consciously choose to breathe at a different pace if we want to, and thus, those muscles can and are affected by dystonia. Supposedly it’s rare for it to attack the diaphragm, but its possible, and it does for some of us. Especially for those of us who have generalize dystonia, the the kind that can choose to attack any given muscle throughout our whole entire body from head to toe whenever and where ever it chooses to strike.
The best way I can describe what it feels like is that it’s like a boa constrictor or a python intent on overcoming it’s prey.
I don’t mean I’m writhing around like a snake, and I don’t mean I feel like something is wrapped around my chest necessarily. I mean, that if there is any effort to struggle, or to attempt to breathe it only gets tighter, and tighter. In this case, the constrictor is the diaphragm muscle.
I have been told a whole story by a resident in a Neurologist office one time about how we can survive without our diaphragm muscle, that a person is even capable of running a race without one. As if that should ease my concern. In my case, it’s not a matter of the diaphragm just giving out and not working. It’s actually fighting against me. I can’t just choose to use other muscles to breathe. My lungs are not given the liberty to do what they are made to do. It won’t let them.
Dystonia doesn’t like resistance. At least in my case, if someone was to try to force what ever is spasmed into a “normal” position it only makes it worse. The muscles fight harder and get tighter. But relaxing, meditating, and dreaming of a pleasant place doesn’t magically make it relax either. Like I said earlier, it lets up when it jolly well pleases. But those things do at least help me remain calmer and not panic as much while I try to wait it out. The only thing that sometimes helps these breathing attacks is what we call a “sensory trick” where my husband gently rubs my back. Sometimes that somehow triggers a release and I can breathe again, but it doesn’t always work.
For the most part, it is like someone stronger than I am is holding me under water…. My life is in his hands. If I struggle it will only make it worse, but if I relax, he still may not let me go. But when he does, I suddenly surface gasping for breath. Sometimes it’s only once, but other times it happens over and over and over again. (I was going to put a graphic here, but they were all too disturbing, worse than the previous one)
The release is sudden…. It’s not a slow realization that I can breathe, it’s all of a sudden broken free and I am gasping for the air that I was deprived of… I wasn’t given warning before it happened so I didn’t get a chance to fill my lungs with air ahead of time, and it lets up without warning in just the same way.
Just like any other dystonic spasm I have had it varies in length… So far they have lasted for just a few seconds to long enough my head started feeling funny, everything started tingling, my ears started ringing, and knew if it lasted much longer I was going to faint. What concerns me is that overall my dystonia is getting worse, I’ve had spasms last for hours, and we all know we can’t just not breathe for hours.
After my past experiences with the ER I don’t ever consider calling them an option any more, but I’ve heard the fear in my Mother’s voice as she watched me not breathing, wondering when and if to quit heeding my wishes and call for help…. I have been assured that our bodies will override everything and breathe when they need to. I’ve had fellow sufferers assure me that if I were to pass out my body would relax enough to breathe. But, I’m not sure I can trust that, but what can I do? If we wait that long there will be no time to call 911 and get someone there before I’m brain damaged, or dead.
This is documented in the DMRF (Dystonia Medical Research Foundation) website …. “If a person s swallowing or breathing is affected by a dystonic storm, he/she may require emergency medical attention. In very severe cases, individuals may be admitted to an intensive care unit setting where they may be sedated with medication or need temporary mechanical ventilation to support breathing.” So, you see why I am concerned and keep asking doctors for help? But I can’t get help if I can’t get the doctor to understand it, and usually that is the case. I had one doctor relate it to being like a toddler throwing a tantrum and holding their breath. That wasn’t reassuring because this is not me holding my breath or whatever, and certainly not a form of a tantrum. But anyway I digress…
I don’t know any other way to explain it. This post has gotten so long I’m sure most anyone has quit reading by now anyways… But if you are still reading, I will say I hope I helped make it a little more understandable. It’s not something I can concentrate and breathe through, it can be scary, it is painful, and while it doesn’t happen all the time, it doesn’t seem to be a phase that will just go away on it’s own. This is part of what dystonia has become for me… It makes me so I can’t breathe. Literally.
(the website page I referenced in my quote https://www.dystonia-foundation.org/what-is-dystonia/frequently-asked-questions/frequently-asked-questions-symptoms )