Undiagnosed sleep disorder


I am a 33 year old male. The reason for this post is that I am really confused and looking for answers. I would appreciate any kind of information or suggestions that anyone may have.

Since childhood, I have always been a sleep walker and a sleep talker. Usually I would not remember the dream or why I wake in a different room other than my bedroom. More recently, I have been displayed violent behaviour while asleep. This includes verbal abuse of my partner and even more concerning is physical violence that has happened on several occasions.

I have no conscious recollection of these events and to hear the abuse I have been responsible for is heartbreaking, frustrating and extremely concerning.

Recently I have completed a home sleep study through the Royal Stoke University Hospital and I am awaiting the results from the study. This has been several months as there is a backlog. I am not expecting any defining answers but I feel that was the best place to start investigating.

While I am waiting on the results, my sleep behaviour is still extremely concerning. I am reaching out to anyone or any organization that could help me get a grip on what is happening to me.

I would appreciate any information or guidance with how to go about getting this issue under control.

Many thanks

Hi @billford, :wave:

Welcome to the Parkinson’s UK forum.

So sorry to hear that you’ve been experiencing sleep issues, it sounds like it is impacting on your personal relationship which I’m sure must be really hard. It’s a little difficult to give you direct advice on your current symptom because you haven’t been officially diagnosed with Parkinson’s and people with the condition usually have more than one symptom. Therefore, I’d recommend you visit our website for more information on Parkinson’s because everyone’s condition is different and along with speaking to a health professional, we have a lot information on our website that can help you. You can visit our website here: https://www.parkinsons.org.uk/information-and-support/do-i-have-parkinsons

We also have a free and confidential helpline with a great team of advisers and they are here to answer any questions you might have about Parkinson’s. Please give us a call on 0808 800 0303.

I hope you find this information helpful.

Best wishes,

Hi @billford, you have started in the right place. I to did a home study and last week I had 3 days and 2 nights in the sleep clinic at the Royal Papworth hospital. My outcome is that I don’t achieve REM sleep so I act out my dreams and don’t sleep very well.

It has taken me 14 months to get this diagnois and after 3 days of being on medication I have managed 5 - 6 hours sleep instead of 3-4 and I have had only 1 episode of thrashing out in my sleep instead of every night.

I hope you you do get an outcome in time as this is a very disturbing and stressful condition for both you and your OH.

Good luck :sunglasses:

I’m sorry I haven’t got any useful advice to give, but I do find it a very interesting topic. This is because I used to sleep-walk, act out dreams, and have very vivid dreams when I was young. It was probably worst of all in my mid-twenties. It eventually stopped happening. The last time I remember sleepwalking, I was about 35. But then I was diagnosed with PD at the age of 64. Now, when my neurologist asks me whether I have vivid dreams, my reply is ‘Yes, but nothing on what I experienced in my twenties’. My sleep disorder was just one of a number of neurological symptoms I’ve suffered from, including migraine, fibromyalgia, depression and hypersomnia. Now they all seem like precursors of my PD, and I wonder how many other PD sufferers also had neurological symptoms many years before their PD diagnosis.