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Sleep disorder & increasing Mirtazapine. Wits end with mum’s Parkinson’s team

#1

Hi there

I’m sure there are threads here about this already, but if I said I honestly don’t have the energy to look, would that be ok?

This morning I’ve been reduced to leaving pleading, tearful voicemails with hospital secretaries as I just can’t get input. Mum’s consultant retired last Feb, her records were lost in transit, she’d not seen anyone apart from her PD nurse since & now the PD nurse has disappeared ‘for the foreseeable future.

Neither consultant secretaries are picking up.

I just want to know - dare I risk increasing her Mirtazapine dose from 30mg to 45mg each night?

Mum is 80 & her PD is advanced. She has ‘some’ dementia.

She still lives on her own with carer, but the nighttimes are much worse now. She was prescribed Mirtazapine 30mg to help her get some sleep. She takes Co-Careldopa x 4, Rasagline & Rivastagamine x2.

The Mirtazapine gives her about 3 to 4 hours sleep - restless, but disturbed. She then gets up around 2 am & starts pacing, calling whoever she can & has had 2 falls at night in th last 2 weeks.

I know there’s no easy solution but in the total absence of any professional help at the moment, anyone got any suggestions? I have MS & if I’m honest, the stress is killing me slowly…

#2

Hi @Finrod888. I think you should call the Parkinson’s UK helpline for advice on this. The number’s at the top of the page.

All the best
Clare

#3

I’ve tried. Must have caught the helpline at a peak call time

#4

Hi @Finrod888,

Please try giving our helpline a call again, they are usually very reliable so it’s unfortunate that you weren’t able to speak to someone on your first attempt. You can reach us on 0808 800 0303 Monday-Friday: 9am-7pm, Saturday: 10am-2pm or send an email to [email protected].

If you have anymore trouble getting through, please let me know and I will look into this for you.

Best wishes,
Reah

#5

I’m not much practical help here sorry to say, but wanted you to know if good wishes count for anything at this very difficult time for you, then I send you bucket loads. I hope you are able to get things sorted quickly.

#6

We went through a very similar situation approx 5 yrs ago when my previous consultant retired, as his position was not replaced, and PD was not his direct field. I ended up in my GP’s waiting room nearly every week almost screaming for help. In the end we had to see someone privately as we felt my condition became quite unmanageable. It transpired that I’d mistakenly been advised to increase dosage on some meds and was taking almost double the requirement so actually the meds were causing most of the problems.

After that one appt we transferred my PD specialist care away from my home hospital area, in order to create continuity and to see the new specialist within his NHS practice.