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

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…

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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

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

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,

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.

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.

Just to empathise. I totally understand where you are coming from. I have been there. Crying and chasing hospital secretaries. My mum is about to turn 78. She has advanced Parkinsons, is very frail- some dementia- although not officially diagnosed. She has multiple falls, endless other complications and I too am at my wits end. She lives with my dad, who is 80 and very stressed.

She is currently in hospital (admitted yesterday) and is on a drip due to the heatwave and not coping well with the heat reaction with Parkinson’s medication.

All I will say is…try the helpline again. I called today and they said an actual Parkinsons nurse would call me back. Feel free to send me a direct message at any time. I may have experienced whatever it is you are going through.

Hi @HavanaS,

I’m really sorry to hear about your mum and my thoughts go out to you and your family. It’s great that you got the help you needed from our helpline. Please let me know if we can support you in other way.

Best wishes,

Been a long time since I’ve logged on, but just to say thanks for your good wishes.

Mum is worse. Her dementia/hallucinations are worse, confusion worse, etc. She had another fall & cracked a rib last weekend.

I can’t move in with her (she’s in social housing with 1 bedroom). I think she may meet the NHS Continuing Care criteria for nursing care but I know how difficult it can be to get that. Anyone know where I’d start? Can the Parkinson’s Nurse & GP start the ball rolling?

Hi Finrod888,

So sorry to hear that your Mum is worse. It sounds as though you’re both going through a difficult time at the moment. It is worth calling our helpline which can be reached on 0808 800 0303 Monday-Friday: 9am-7pm, Saturday: 10am-2pm or send an email to [email protected]
They can give you advice on nursing care and how best to get it.

All the best,
Moderation Team