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    • #19690
      D Doenges
      Participant

      Visual hallucinations, no.  Tactile hallucinations, yes (formication), around face and neck, particularly bothersome when trying to go to sleep.  While asleep, 20 to to 35 times a night I will by scratching and rubbing the creepy crawlies (with a Wyze cam triggered by movement or sound, I capture my RBD episodes as a way to quantify results from meds).

    • #19614
      D Doenges
      Participant

      For many years I had RBD did not know it.  Sister-in-law told me to see a neurologist.  Summer of 2019 I saw a neurologist and had a sleep study + I failed a smell screen (not test).   Afterwards I enrolled in the NAPS study, switched neurologists, and did the NAPS testing.

      Failed all sniff tests, DAT scan showed slightly decreased binding of radiotracer.  I am now taking Myrbetriq Tabs25 mg for overactive bladder ($500/month).  No at-rest tremors, but starting last January, I have postural tremor on right side (hand/arm).

      Back to RBD (I call it Really Bad Dreams).  The dreams have been very terrifying.  Often faceless intruders trying to get me, dog and wild animal attacks, etc.  I’ve landed on the floor at least 5 times.  Last time I hurt head when it hit the night stand corner.  I just got a custom mouth guard to prevent me from hurting myself when I bite or clench my teeth.  I’ve bitten my tongue , and cheek many times.  Often painfully so and often bloody.   I’ve hit and kicked my wife many times.  She moved to a different bedroom.

      I’ve tried temazepam and clonazepam but found them not to really work for me and there were some unpleasant side effects.  For the last 6 months I’ve been taking 3 mg of regular melatonin and 15 mg of slow release melatonin.  All in all it appears to work better, but just last week I had two screaming nightmares in nightly succession.

      What is hard for me now is the wait for a possible/probable conversion to PD or dementia with Lewy bodies (DLB).  I am 59 and still very active physically:  daily stretchy, stretch cords, bicycling, and running.  I have other weird things going on such as formication (very bothersome when trying to go to sleep).  I wish that I could find a support group for RBD.  It gets really rough for me at times.

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