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are these symptoms normal? mutism in dp/dr amongst others...


[bo...]

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hi all... it's been almost a year since my mum was forcibly cold turkeyed/reinstated only 70% of her original dose a month after. we found out the horrors of benzos too late to prevent the damage her pdocs did to her.

 

she went almost catatonic w mutism and stupor with severe freezing from fear late 2019/early2020 and went through 12sessions of ECT in jan/feb to lift her out of catatonia. (they call it catatonia, but it just sounds like severe dp/dr caused by rapid benzo withdrawal) it was a scary time for us coz she nearly choked and froze up for hours with water still in her mouth... pdoc convinced us to agree to ECT as the risk of other medical issues arising due to her freezing up was quite high.

 

The effects lasted about 2 months and in early may started to present brainfog poor cognitivr/milder akathisia/rapid eye blinking/TD chewing nonstop/chronic fatigue lying in bed whole day/loss of words/urinary incontinence/confusion etc.

 

These symptoms seem pretty standard from what ive been reading and searching around the forums here... and some of these have over time lessened or went away, but the most concerning symptom is the mutism she's displaying again. that's been the case since may, towards the evening she'd stop talking/responding and sometimes only respond nonverbally, sometimes not at all, but it'd be back to speaking softly/whispering + replying us verbally but with effort in the mornings, like it resets in the day.

 

is mutism normal during a wave of dp/dr?

sorry for the bold, i realize im writing a whole wall of text, didnt want this to be lost in it.

 

what happened was, her symptoms has been pretty mild and consistent since may, but took a downturn the last 2 weeks, with her speaking progressively less every day, then only responding nonverbally, to no response at all last friday. over the weekend she got progressively worse and almost froze up again, just like in dec last year, which freaked me out and prompted me to contact her pdoc, who immediately prescribed rescue ect, of which im uncertain of.

 

reason being, i felt like the ECT merely mask the symptoms and the risk involved doesnt really justify the little benefit we get from it... plus the acceptance and memory issues fallout that follows is hard to go through again. and i felt that relying on ECT prevents her from building resilience in the process, and prevents me from monitering and tracking the patterns of her symptoms. but the sudden and drastic decline in her condition made me worry and wonder if she needed it again... especially when it got real bad again on monday, as if we were back to past december.

 

the trigger for this setback i assume is because of a generic drug change? due to covid19, her generic diazepam has a change of supplier and so im in the process of switching 1 of her 4x 2mg pills every month, starting earlier this month, and the problem started in the 2nd week of the pill switch(similar to her previous C/T or failed taper timeline for symptom onset)

 

what was amazing though, and i still cant quite believe it happened, was that on tuesday morning, she was more alert and as the day progressed, started interacting with us again, with some of her cognitive and situational awareness coming back, to a level i havent seen since may. on wednesday, this further improved and her personality emerged again! we had such an amazing day and we were talking and laughing and crying, it was like she was back, and it was such a relief to watch her smile again.

 

i realize now that was probably a window, one i was hoping would never end but the next day she fell into a deep fatigue and slept/rested for a day and a half(which i didnt know if it was catatonia again or not, but it looks more like chronic fatigue) and only became more alert again yesterday.

do windows open and close so suddenly and drastically like that?

she became lucid and then lost it again so quickly. i suppose hoping the window wouldnt end was too much optimism on my part, considering its her first true window. its like she came up out of the water and took a deep breathe and went down again. :(

 

she's up and about again today, but still mostly just to eat, use the toilet, or move to the couch to watch tv. she hasnt spoken at all, with barely any nonverbal response either since she fell into the deep fatigue, but with some convincing and encouragement, she has agreed to respond to me nonverbally when she can(with a nod). cognitive wise she understands everything we say to her, and does what we tell her to do, just doesnt interact with us. the mutism is concerning, as i know its one of the symptoms of catatonia, but i also suspect she's just highly depersonalized / on auto pilot, of which i got confirmation when she nodded after i asked if she felt like she's in a movie/watching life through a screen (something she mentioned last november prior to falling into a full catatonic stupor/mutism)

 

oh, and i also found out when she was lucid during her window and telling me stuff,  that she has been having nightmares/intrusive memories/balance issues tilting to one side/auditory hallucinations telling her to repeat words, and doesnt remember being mute (does tt mean shes not aware of her dp/dr during a window?) so add those to her lost of symptoms i guess.  :o

 

also, now that shes responding to me nonverbally, she also doesnt remember having the window, but somehow recognizes some of the writings we did together during that time, so poor short term memory i suppose.

 

tldr; is becoming mute/minimal nonverbal communication normal during intense dp/dr waves?

also, do windows and waves open and close so drastically like that? it's so bizarre to witness in person even after reading about windows and waves since being on BB.

 

please advise, thank you.

 

hope everyone is doing better/making progress and staying safe during the pandemic,

boo

 

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