Lack of help from my doctors

I just want some help……
Hi this is Damien Gracey here, my address is 1, Downe Avenue, Downpatrick, Down, BT306FY, United Kingdom and my phone number is 07856725609. I’m emailing use as I don’t know where else to turn. I’m struggling so much with getting any sleep, last night I managed to get 2 hours and the night before I only got 1 and half hours. This has been going on for a very long time but every time I have said anything to any doctors they just tell me to get into a routine which they have given me leaflets about. I have been doing these routines and still nothing has changed. I rang my GP but was told she can’t do anything as she can’t change my medication my consultant has me on. The medication which is not doing anything but keeping me awake. I Havnt seen my neurologist in over 4 months, the last 2 appointments she cancelled. I did see a stand in consultant in the city hospital a few weeks ago and he advised for me to double my madopar at night. But unfortunately this is not working either, if anything my sleeping is worse. Today I rang my Parkinson’s nurse but got her receptionist as she’s off I’ll and they don’t know when she will be back. I explained to the receptionist about my sleeping problems and she said she would ring me back this afternoon once she gets talking to a neurologist but unfortunately I never heard from her. I’m near at the end of the road here as this is starting to get me very depressed and stressed and I hate when it comes to nighttime as I know it’s going to be a long night twisting and turning in bed, even praying for sleep. I can’t do this anymore, I need proper help now not months later. I’m seriously thing of stopping my Parkinson’s medication because this problem only started when I started the medication. I’m only 40 years old and I shouldn’t be having these thoughts in my head but I just feel there’s no one listening to me or wanting to help me.

Hello Skinzo81
Please ring the help desk 0808 800 0303 and speak to one of the advisors. They will be better placed to advise you of the best way forward. I don’t know how different the system is where you are and wouldn’t want to advise you wrongly. Personally if I was getting nowhere with my consultant or GP and the Parkinson’s Nurse apparently indefinitely available I would be looking to change one or both but I don’t know if that’s the same where you are.
Good luck

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Hello skinzo81,
I hope you have got some help now.
I agree with Tot, go and see another GP asap and tell them how low you are feeling.
Thinking of you.

Hello Damien
I hope you have telephoned the Parkinson’s UK helpline as others have said and they’ve been able to offer some help. Without knowing the availability of Parkinson’s specialists in your area is it possible and you are able to in this instance find a private neurologist accessible more quickly. Do you also have a local mental health crisis team, if you do contact them immediately you shouldn’t be feeling this desperate. Please let us all know you’ve accessed some help. Best Wishes Jane

Hello Skinzo81
We are all listening to you, when you need to talk use this forum. You are not alone. My hubby also has problems sleeping, he is retired now and is able to just sleep when he wants to. He doesn’t think because its night time he has to go to bed, he may watch tv or do crosswords or jigsaw puzzles and go to bed if and when he feels tired enough. He doesn’t seem to need as much sleep as he used to. I think if you are forcing yourself to try and sleep just because its night time it wont work. Of course if you are working though realise you wont be able to sleep when ever you want to. But dont try making yourself sleep if your not tired. Good luck with it all

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Hi @Skinzo81 sorry to hear about your sleep problems and I agree at 40 you should not be having this. I had sleep problems a while ago (not as bad as yours) and found, like @Molly_May, that tossing and turning did not help. For me what helped was sitting up in bed and reading or listening to the radio or playing online scrabble. I remember eating toast at 4am a couple of times. After a while I fell asleep naturally. I also sleep better when I have had a busy active day - are you physically active during the day? Good luck! Let us know how it’s going.