How did I get here? My symptoms of a stuffy nose and breathing trouble began after a motorcycle accident 22 years ago. At the time, I was more concerned about the rest of my body than my neck. It was stiff and sore for a few weeks, but I shook it off, and moved forward in life. About a month after the accident I began getting asthma attacks that would start with a stuffy nose. Tachycardia was also an issue, cropping up when I was exposed to allergens like house dust. Too bad some doctor back then didn’t order imaging studies of my neck. They probably would have seen the loss of normal curvature (lordosis) of my cervical spine, a condition known as “kyphosis”, which can be caused by traumatic injury.
I saw a neurosurgeon last week, and he felt surgery to open up my cervical spinal channel would improve my symptoms. He couldn’t promise anything — a favorable outcome, reduction or elimination of any specific symptoms, and he cautioned I might come out of the surgery feeling worse. “I can’t predict the future”, he said more than once. He suggested gentle, focused chiropractic, and neck traction, as things to try instead of surgery. Overall, his was an honest assessment, and one I could appreciate. But I’m not ready for someone to cut into my neck yet. And this particular surgeon seemed to know nothing about POTS. I described my symptoms and he referred to them as “vague” or “diffused”. To anyone familiar with dysautonomia, I would consider my description as classic, and typical, of autonomic nerve dysfunction, orthostatic intolerance, but these are not common diagnoses, unfortunately.
So I’m trying to tackle my health issues on a limited budget, and get the most impact I can for the effort. Neurofeedback worked well to deal with the background anxiety of illness. All these symptoms take their toll, and I felt these sessions were soothing me, but the effects only lasted a few days, and they were not cheap.
In the last week I’ve seen a new chiropractor who uses the “activator” method. It’s a precision hand tool that delivers a measured, consistent pulse of pressure to the spine, in a focused, gentle way. Most of the time you barely feel the adjustment, but it does work. I’ve noticed the effect bloom over the course of three or 4 days after. And this chiropractor is working in a very methodical way, starting from my hips and low back, paying attention to leg length, and then testing various neurological responses to find subluxations all the way up to my cervical spine. After 3 visits I can say i’m feeling a noticeable improvement, and I plan to continue treatment as long as I can. Thinking back over the development of my health issues, chiropractic has been one of the most helpful, but also has been damaging, when the wrong approach was applied at the wrong time. I want to stick with rehabilitating my cervical spine as much as possible, since it seems to be the source of so many issues.
POTS, be it hyperadrenergic like I seem to have (diagnosis pending), or the more conventional hypotension form, can also have an autoimmune component. The last few blood pressure spikes I’ve had didn’t seem overly related to head position, neck movement, etc. Sometimes my neck and head just starts to get hot, and I can feel my pulse and BP rising, usually after exercise or eating a meal. Both activities can release histamines, which in turn can activate mast cells. MCAD, or mast cell activation disorder, is a theoretical cause of POTS according to some researchers. They’ve found for certain patients an antihistamine will control symptoms just as well as more conventional approaches like beta blockers or blood pressure medications.
Diet is something I’ve been tinkering with for about a decade, and it has consistently yielded good results. Not necessarily linear progress, but the overall trend has been favorable. Two days ago I decided to give up dairy products altogether, and this was after a dairy holiday of two days reduced or eliminated many of my symptoms. Things like tinnitus — now nearly gone after a weekend of being dairy free. The fullness in my ears, congestion in my sinuses and nasal passages, slowly getting better now. My overall mood seems more stable, less anxious, less brain fog and fatigue. This blogger here has a very interesting theory about casein allergy and how improperly digested casein can affect neurotransmitters, even months after stopping dairy consumption. Basically, they are suggesting casein peptides can “lock up” certain receptors in the brain and create a wide range of neurological symptoms, including insomnia.
Sleep, for me, is the final frontier. Just as I thought I was sorting it out, last night I had another episode where I went past the 11pm tipping point, and was soon staring at a clock reading 1:45AM, with pulse pounding. In moments like this, I’ve decided to just take half a Klonopin, which for me is half the lowest .5MG dose, and go to sleep. It works. And sleep is too precious to miss, especially since going without for a night makes the POTS symptoms much worse.
The ultimate goal, of course, is to sleep well without any pharmaceutical aid whatsoever. I’m hoping with diet, chiropractic, and things like consistent exercise and meditation, I can achieve this in the near future.
I always seem to wrap up with a thought about the worms. My helminthic therapy has been paused by the use of Levaquin antibiotic, but the hookworm and whipworm should be back “online”, laying their eggs, in another 6 to 7 weeks (October 15th). I’m hoping by that time I’ll start to experience their longer term benefits, which could include a reduction of most, if not all, allergic symptoms. Can these worms “cure” my POTS? Well, during my bounce back in April, 2011, all my various aches and pains disappeared. I’d settle for feeling a fraction of that relief now, and have high hopes helminthic therapy will compliment all the other measures I’m taking.