Hi,
I'm so sorry if I sounded unsure about your symptoms.....for I don't know you at all, and I am not a diagnostician in any way. My 2 cents is worth just about that, perhaps less!
I can only speak with some knowledge about my own experience. In my case, it appears I had a neurotoxic reaction to antidepressants coupled with a high dose of a beta blocker. I had neurological symptoms for two years (Parkinson's and a brain tumor were considered, for I had a benign brain tumor in the past). Just at the time my negative results came in, I went into a hypertensive crisis.....I recovered slowly. My tremors and loss of balance disappeared. I was not depressed, but I felt unwell. I was sure I would recover, joined a new gym, and got back to work.
Several months after that I was walloped with a slew of symptoms....I had no idea what was happening. I was excessively thirsty, my eyes dried up, and my hair began falling out. I had severe GERD (for the first time), my large intestine sort of froze, and I could only eat very small portions of very bland food. I lost a lot of weight. My extremities were tingling (pain came later) and I had palpitations. I had anxiety that defied description, and severe depression. I also had severe insomnia and night sweats. I could not bear heat of any kind. I was overwhelmingly fatigued. I discovered "dysautonomia" on the web. I could not work and exhausted my sick leave (I am now on employer disability).
I went to a very skeptical neurologist...who felt I could not have dysautonomia because I did not have low blood pressure...I finally had two small fiber biopsies and both were positive: they indicate wide-spread nerve damage. I also saw a great psychiatrist/neurologist who felt there was something neurologically odd going on.... The voice of the skeptic shook when he called with the biopsy results.... In addition, I just found out last week I have nerve damage in my eyes. Scary.
I recently saw a celebrated dysautonomia specialist here in NYC. Had a lot of tests for autoimmune disorders. He thinks the neurotoxicity story makes the most sense....(nothing in the AD lot about this). He thinks I will recover, albeit very slowly. He told me to MOVE!
My digestion and dry eye are better. My skin is softer. My sleep is interrupted, but I do sleep. Yet I now have real neuropathic pain.
In spite of my fear of antidepressants, I am taking a tiny dose of Nortriptyline. My depression is palpable, but lifting. I also take a tiny dose of Klonopin to sleep.
I am still very fatigued and have palpitations with any movement. I'm seeing a cardiologist soon. I also had an endoscopy and met with a rheumatologist. I have a masseuse/yoga teacher come to my house....she is just wonderful. I am also planning to start PT. I want to now gently work out 5X/wk. Very difficult!
So, you see, this long list of symptoms is to demonstrate how systemic this "catchall" disorder is. Even my fingernails are affected. I happen to have a history of depression, but I read its incidence is no higher in the dysautonomia population than the overall population. Anxiety is a real problem for everyone with this....because the sympathetic and parasympathetic nervous systems (flight, fight, and resolution) are deregulated.
Dysautonomia, as you correctly note, is a catchall term. It is rare, but seen among diabetics and people with underlying immune disorders. Certain antibiotics, statins, and other toxins can set it off....so can physical trauma. I do see there is comparatively a lot of it in the ME population. I'm not sure if it is comorbid, or if people are misdiagnosed. I just joined this forum because it speaks to me now. I am heavily grieving the loss of my profession and health....I became basically bedbound and worry a lot about the effects of deconditioning.
I can only suggest you see someone who understands the variations of this disorder (no easy task...I am in NYC and had to wait five months to see the specialist!) and get checked. In spite of my history, I would like further immunological testing...for this variant can be treated.
So, I truly wish you the best. I can only say be very persistent in locating a good doctor...My psychiatrist/neurologist actually spoke on the phone with me twice before we met. He is a staunch advocate with the others!
Here's wishing both of us a better new year!
Aviva