@grammato3
I was recently declined by the Sleep Medicine department, the explanation was that they didn't know what else they could offer beyond what my current providers are doing. The difficulty is that my current providers are a respiratory sleep specialist and a psychiatrist, and both have told me they have no idea what is causing my total insomnia or the neurological symptoms that come with it.
Because of that, I called the appointment office and asked my case to route to neurology instead. I also have involuntary unilateral explosive movements, and a hip twist. So it seems like an appropriate specialty.
My concern with this, and the appointment rejection is diagnostic overshadowing. Once a psychiatric diagnosis is in the chart, it can act like a total eternal eclipse, everything gets interpreted through it, even when the symptoms don't fit. I am worried that is happening in my case, especially since the many treatments I've been given so far haven't worked, made things worse, and no one has been able to explain the underlying cause.
I am hoping neurology will at least review the case, because the sleep wake issues I experience do not seem to fir the respiratory or psychiatric categories I have been placed in. I don't drink, I don't smoke, I don't use illicit or recreational drugs, I don't drive recklessly, I don't get arrested, I don't go on spending sprees, I don't self harm,I don't have delusions of grandeur, and when I am awake for days, I spend a lot of time and effort trying to sleep, and I certainly don't feel euphoric, even if paradoxically for a moment sleep deprivation triggers more psychical energy biochemically; one other key difference is that I know I am sick. My concern is that the bipolar diagnosis is not only inaccurate but has repeatedly lead delayed appropriate medical evaluation. Several providers have acknowledged they don’t know what is causing my symptoms, yet the psychiatric label keeps redirecting the focus away from neurological work‑ups that have never been done.
Though I messaged the AASM I will continue to look and see if there is anyone, but CBT-i is really not going to cut it.
@aethelwulfe ; that must have been disappointing to hear. I have no idea what criteria is reviewed or necessary to become eligible but I'm not aware of diagnostic overshadowing being an issue at Mayo; perhaps CBT is an integral part of their management that has not been beneficial to you but I really cannot say. That appears to be what helped @wilmslow; have you tried contacting the provider in their post if you felt that might be a lead?
Hopefully you are correct that neurololgy is the way to go in regard to digging deeper into your issue. Another consideration might be an integrative approach, although again I'm not totally familiar with the program aside from doing some investigation/treatment of REM disorders: https://awcim.arizona.edu/
Keep me posted on your progress please.