An appointment with a Somnologist

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A somnologist, also known as a sleep specialist or sleep doctor, is a medical professional specializing in the diagnosis and treatment of sleep disorders. They have specialized training in sleep medicine, often after completing medical training in areas like neurology, psychiatry, or internal medicine.

What they do:

  • Diagnose sleep disorders:

They use various methods, including questionnaires, sleep diaries, physical exams, and sleep testing (like polysomnography) to identify sleep problems.

  • Provide treatment plans:

They develop personalized treatment strategies for conditions like sleep apnea, insomnia, narcolepsy, and other sleep disorders.

  • Advise and educate:

They offer guidance and information to patients about sleep hygiene, lifestyle changes, and other factors that can improve sleep quality.

Key areas of focus:

  • Sleep-disordered breathing: This includes conditions like obstructive sleep apnea (OSA) and upper airway resistance syndrome (UARS).
  • Narcolepsy: A condition characterized by excessive daytime sleepiness and sudden sleep onset.
  • Insomnia: Difficulty falling asleep or staying asleep.
  • Restless Legs Syndrome: A neurological condition causing an urge to move the legs, often at night.
  • Parasomnias: Disorders involving abnormal behaviors during sleep, such as sleepwalking and night terrors.

Good morning everyone. Tomorrow I have an appointment to see a Consultant Somnologist at the Nuffield Hospital in Haywards Heath. I got this through my Benenden Health membership costing me ÂŁ15.85 a month. The NHS have a waiting list of 20 weeks plus. through Benenden I only had to wait 10 days.

I have had a lot of trouble sleeping. I’ve had extreme nightmares, bad dreams, I wreck my bed. I wake up with my heavy duvet on the floor. Some nights I cant sleep at all &
I often hurt myself thrashing around in bed, other nights I sleep for 2-3 hours.

My Parkinson’s nurse tells me my sleep issues are a common side effect of the
Co-careldopa (Sinemet} I take.

I have tried medication. Currently I’m taking Clonazepam & Melatonin. This helps me sleep but I wake up feeling tired & exhausted which often make my Parkinson’s symptoms worse.

This initial consultation will hopefully lead to a sleep clinic & help me sleep better.

What I have wanted is a sleeping pill which my medical team will not prescribe. So I have to take other medication which makes things worse.

I will let you know how tomorrow goes for me.

Best wishes
Steve2

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Hi Steve,
That’s fascinating - I came on here to talk about sleep issues and your post was the first I spotted. Will be very interested to know how you get on with the somnologist. Useful to know there is such a thing! I see from your previous posts that you’ve had a bit of a time of it with sleep issues and medication so I hope you get something that helps. Good quality sleep is so important to your overall health.

My husband, D, has fairly late stage Parkinson’s and PD dementia and he’s suffered quite an extreme example of disordered sleeping.
We have just come out of a pretty gruelling couple of months. Historically, he suffers from very vivid dreams, like you, and he has to get up several times a night to go to the loo. He was not great at the beginning of the year - more confused, very sleepy - but we put this down to the usual PD tiredness. Then in late January he had a complete collapse - unable to stand and delirious, hallucinating pretty much 24/7. No underlying cause could be found so this was put down to progression of the disease and he was put onto palliative care (at home at our request). Nights were very difficult and the hallucinations were obviously distressing him and he seemed to be in some discomfort (he was unable to talk to us at this time). We had to call an out of hours doctor one night and beg him for some sedation (this was before we were on the books of the local hospice) after which he slept, then another night we had to call an ambulance who administered some morphine and they told us he would probably pass the following day. However, he slept peacefully and seemed a bit better the following day. At this point he needed two carers four times a day and I stayed next to his bed during the night. I asked for something that would settle him at night so he could get some peace but no-one was keen because he is a “falls risk”. I argued that if he was trying to get out of bed at 3am in a delirious state he was even more of a falls risk. It took quite a bit of to-ing and fro-ing to get anyone to pay any attention but eventually a doctor at the hospice consulted with our PD nurse and prescribed him some melatonin. The difference was quite spectacular. Given at the right time of the evening, he was back to a normal sleeping pattern within a couple of days and within a couple of weeks he was lucid, up and about and able to mobilise with the help of a frame. Everyone is amazed.
This was just a month’s supply and it was made clear that it wasn’t going to be a regular thing. However, things seem to have resolved themselves and he is pretty much back to where he was before but I will be keeping a close eye on things. Definitely worth persisting despite medical reluctance if you’re struggling with your sleep. I find that “falls risk” seems to trump all other considerations at the moment, although I it can be a bit of a chicken and egg thing. Is the risk from being drowsy from medication or from being sleep-deprived?

I’m also insisting on good sleep hygiene - regular bed time, tv and lights off! Helps me too :slight_smile:

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I will be very keen to hear how you get on as my hwp goes through everything you describe. His nurse was not keen to prescibe any more meds in case it created other symptoms. He is up most of night after about 1am… i know its common in pd, but that doesnt mean its to be suffered one would hope. Good luck with consult

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Good evening Catherine … Thank you so much for your interest, of course I will post my experiences after the consultation tomorrow evening.

Not meaning to prejudge what will be said BUT I will be asked what conditions I have & I will tell him. I will then be asked what medication I take for these conditions & I will tell him. He will look at the medication list & say that my sleep issues are caused by some of the medications I take. Either the Co-careldopa [Parkinson’s medication] or the Bisoprolol which is a Beta Blocker. Both medications are known to have the sleep issues I have as a side effect. Both medications are effective & I can’t do without either.

Now where we go from there is interesting. Do I stop or change the medications I take ?
Or treat the side effects with Clonazepam & Melatonin as I am doing at present ?

If I am going to have tests while I sleep do I have these tests when I’m taking the medications or when I am not ?

More questions than answers as the song goes.

Best wishes
Steve2

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Good evening jandc … I have “getting up at night” as a Parkinson’s problem & I do not have a prostate having had it removed when I had Prostate Cancer. I was referred to a Urologist & my tests were abnormal so I am having more tests on May 20th. Including the dreaded cystography.

Best wishes
Steve2

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Good evening everyone … As planned I went to see a consultant Somnologist / General consultant this afternoon at the Nuffield Hospital in Haywards Heath. Nice hospital, very friendly, free coffee while I waited. I was an hour early.

Saw the likeable & knowledgeable consultant & answered all his questions. As I thought he would say, he said that mine was a very complex, complicated & challenging problem.

He said that my sleep issues were almost certainly caused by the Parkinson’s medication I take, combined with my Parkinson’s itself & other factors. He talked about possibly increasing the Melatonin I take not stopping it.

He said I really should be talking to a Neurologist & not him. But he would have a long think about what might be done for me. He also wants me to have a blood test. Which is a repeat of a blood test I had a year ago. He is going to phone me on Thursday & will have a chat with a Neurologist colleague of his about me. He hopes to get me a referral through Bupa / Benenden to see this neurologist who also specializes in sleep issues.

Ho hum … I didn’t think this would be simple & I feel I am going around in circles.

Best wishes
Steve2

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Being a full time carer for my wife the main issue is that she gets a great deal of sleep, she can easliy sleep 18 /20 hours a day. I have been informed that this is due to her Carldopa meds. but she is on minimum dose. Our neurologist simply puts it down to disease progression !!

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Is carbidopa the same as co-careldopa?

Sinemet, Caramet, Lecado and Apodespan are the branded versions of co-careldopa. Co-careldopa contains two ingredients, levodopa and carbidopa. The carbidopa ingredient helps levodopa get in to the brain where it can become dopamine. Carbidopa also helps to make sure you experience fewer side effects.

Good morning Nala … I am 71 & have Atypical Parkinson’s.
I am on Sinemet aka co-careldopa.

The Somnologist I have just seen tells me that the co-careldopa I take causes my sleep issues. My experienced Parkinson’s Nurse also tells me the same thing.

The question I have is would I be better off not taking any Parkinson’s medication ?

Last Friday I had a full day playing Indoor bowls. My 3 man team played 4 x 1 hour games. During that time I bowled 72 bowls in total
& walked 48 ends x 50 yards = 2,400 yards during the day. This is at least 4 times what I do on a normal bowls day.

On Saturday we had an identical day to Friday.

I was exhausted but still woke up at around 3am both following mornings.

Sunday, Monday & Tuesday I slept very well, sleeping until at least 9am. So about
11 hours sleep with the usual waking up to pee instances.

But in spite of three good nights in a row my eyes feel tired & even a short walk is difficult as I feel exhausted.

Best wishes
Steve2