Paroxysmal Dystonia

paroxysmal_dystoniaOne of the things that has kept me away from my blog for so long are fits that I have self diagnosed as paroxysmal dystonia.  At this point, they are self diagnosed because my Neurologist-make that FORMER Neurologist-thought it was simply sufficient to put me through an EEG to verify that I wasn’t having epileptic seizures and shrug his shoulders (even though I was having several a day) without diagnosing me at all. So, as I am often forced to do with my army of lazy, incompetent doctors, I did my own research and diagnosed myself the same way they do, based on symptomology and the process of elimination. If I’m wrong, I will let you know. I have a consultation with a new neurologist at the end of July. Hopefully this guy knows his stethoscope from his asshole.

I have gotten to where I can feel these attacks starting to come on, first and foremost in my diaphragm, high in my abdomen, under my ribs. It begins to tighten, like I’ve been punched in the stomach. During these attacks, one or more muscles or muscle groups (usually an arm, leg, and/or my neck and almost always my diaphragm) begin to spasm and jerk, flailing uncontrollably, while the rest of my body is stiff and unresponsive. My diaphragm causes my trunk to bend and jerk and forces the air from my lungs. I am aware the whole time, though I feel a bit spacey. At some point, I begin to have tachycardia, sometimes it starts beforehand, sometimes during. I sometimes make noises, but they are completely involuntary. Toward the end or just after, my limbs feel heavy, my extremities and face go numb and a headache blossoms in my forehead. On my worst nights, I will have 3 or 4 in a row. I rarely ever have them during the day.

Here’s another case study that’s interesting, if you want to read further: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3002546/

I strongly suspect that these fits are exercise induced, though I cannot confirm this for sure. My first fits happened some 3 or 4 years ago and happened only twice afterward in the intervening years until this spring. Then they began to happen everyday, several times a day. They began at the same time I experienced severe post-exertional malaise from attempting to do some very simple physical therapy exercises to try to build up some muscle tone and stamina.

I’ve been in the severely ill category for a couple of years now and I finally got my PoTS under control and was hoping to advance further by adding some exercise. It backfired terribly. I either ramped up my exercises too quickly or just couldn’t handle it over all. I knew I was getting tired, and I put myself on total bed rest right away, thinking I’d be fine in a few days. Since I was on total bed rest, I decided not to drink any ORS and for the first few days I didn’t wear my compression hose. I figured I was laying down, what would it hurt?

This is when the paroxysmal dystonia not only came to visit, it moved in. It occurred to me after two weeks of total bed rest that they had tapered down to one or less a day when I went back to wearing the compression socks and I began to wonder if the PoTS might have something to do with it, so I put myself back on the ORS. Sure enough, the attacks, decreased yet more. When I went on the curcumin at the beginning of June, the paroxysmal dystonia ceased altogether, though I still feel a tightening in my diaphragm sometimes, which I take as a warning that I might be doing more than I should be since I’m up and around a bit again.

I’m honestly not entirely sure how this all goes together, but I know it does in some way or another. Some of my doctors think I’m somehow hair-brained or perhaps just imprudent to make such judgements, but exercising muscles and having those muscles go rogue on you when you have a neuro-muscular disorder makes a supreme sort of sense. And since the body is made up of 80% water, having low blood volume has to fuck with you so many ways it makes my brain hurt to even contemplate (but then everything makes my brain hurt, anymore…literally).

I’m massively curious to know if others with ME/CFS and/or Fibromyalgia have these fits as well. I did read in one place that these are sometimes a precursor and/or comorbid to MS, which is about as surprising as how often ME becomes MS. Mostly, I just want to know that I’m not the only freak out here flailing around like a fish on dry land, painfully aware and endlessly frustrated by my doctor’s inability to care.

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