I am putting out a personal plea for help. I'm not sure what I need (a Pituitary Specialist, a good sleep clinic, etc) . It's not just that I'm not sleeping, I am having this traumatic sleep-wake experience going on for about a year now. My body cannot take much more of it. I have been doing so much to try to alleviate the symptom. I have been to sleep clinics and doctors who don't seem to know what to do to help this symptom. I wish I believed that if I 'pushed through', this symptom would go away. It's just too traumatic. I have such severe twitching when trying to sleep and when waking up, and I am being awoken all the time with sudden extreme dry mouth (and then some head pain). Over and over. I can't seem to treat whatever underlies it, it makes the partch and twitching worse. This includes Antibiotics, anti-cholinergics, anything water sapping (the worst was Xyrem- too much sodium?). I had my worst trauma when on that.
For someone who has never needed sleep medication, I am now taking up to 8mg Ativan at night, trying Melotonin, L-Theanine, L-Triptophan. Have tried much more. I have been bringing ideas on what to do to my doctors (pretty much the only ones who stick with me through this symptom), but the things I suggest 'are not their specialties'. Can't find a lyme friendly endocrinologist. I know my Anti-diuretic hormone is consistently low and my osmolality is a big issue. I know that my intracellular electrolytes and their ratios are off. I know that i have waaay too much chloride in my cells. I believe low magnesium might be an issue (the IM shots don't help, can't afford 3x/wk IV pushes (which might be the only thing to test to see if this is part of the issue). I also get extremely hot during the night. I am too young for menopause.
I also know that I can't go on much longer like this. It's too painful, energy sapping, etc. Even though I think Jackie Springer's book might help, I am losing the cognitive functioning to read it for myself. And to do much more research for myself at all.
This symptom will occur during the day if I try to sleep. So my body just cannot rest. I do not have joint pain, do not have muscle fatigue, do not have daily body pain, save weight bearing foot pain and weight bearing costochondritis. Do not test pos for Sjrogrens. Did have severe dry eye during the day, but found a lyme literate opthomologist who has given me 2 antibiotic ointments due to finding infections in the backs of my eyes. The dry eye 'attacks' that would come on suddenly during the day are diminishing (it has been 3 weeks).
Sorry for the whole story here. I am just at a loss. Help would be appreciated. Thanks so much.
Tracy Hans, MS, LPC
Director, Therapeutic Alliance Group, Inc.
Lyme, Mold, Bartonella patient