Desperate for help - possible narcolepsy

[Lucy___]

Hi, I'm starting to think that I have perimenopause induced narcolepsy or something form of sleep disorder as I'm 43 and for the last few years I have suffered from sleep problems which are becoming so severe that I can't function.

I can generally manage day 5 - 17 of my cycle but from day 17 to 5 I am suffering such severe daytime sleepiness that I'm not managing to stay awake for more than a couple of hours at a time and literally cannot function.

I also wake every hour or every couple of hours during nighttime sleep but this happens throughout my cycle.

I'm feeling so ill and low as I can't work or do anything. I have no energy at all.

I wake around 11am and am back asleep normally by 2pm - 5pm then can be awake for a few hours in the evening before falling asleep again.

I would say I'm actually slightly better at night than during the day where it's becoming impossible to stay awake even if I'm out and about.

My GPs literally won't help me even though I ended up in hospital in crisis last week.

I'm desperate.

I can pay privately but I just don't know who to see or who can help?

I've googled and it seems to be a sleep specialist but I can't find any?

Or a neurologist?

Or a respiratory doctor?

Does anyone have any recommendations for me to be able to see anyone that can help me?

I don't honestly think I'm going to survive this much longer as I'm feeling increasingly suicidal but my GPs don't understand how close I am to packing it all in despite the crisis team sending them an urgent email.

I am on HRT but the menopause doctor is useless and the HRT is doing nothing to help me.

Thanks

[SpeedyH]

I am not a doctor and a medical professional is the only person who can diagnose your illness. It is unlikely you have narcolepsy. However, as you are suffering from disordered sleep you really must not drive or operate machinery etc. If you are a driver, you must inform DVLA of your problems as you will be risk to others.

As you are having suicidal thoughts, I would suggest that your priority should be finding help to address your mental health problems which of course has a big impact on your physical health and sleep.

Alongside mental health support, if you haven't already I would suggest you ask your GP for blood tests to ensure that there are no underlying deficiencies as these can affect mental as well as physical health. I suggest you get on the waiting list for your local sleep clinic as well. You might like to Google sleep problems in children as there is far more information available for them and lots of it applies to adults as well. An example is Cerebra. This will help you with establishing a good sleep routine as it sounds as if yours has gone to pot if you are still in bed at 11am. Another thing to consider is whether the HRT is causing your problems and it may be that your dose needs adjusting.

I hope you find help for your problems.

[kev60]

Hi Lucy, As a male have no idea of menopause but I do know about sleep problems. I was sleeping average 15-18hrs a day the longest I have slept was 34hrs. My GP thought chronic fatigue syndrome so referred me to hospital (no help), I was then given a referral to the sleep clinic under a neurologist (took a year to come through). But I went in November for a sleep study (overnight stay) also had blood tests and was found to be low on b12 had to have 9 injections, also low on folate’s so put on folic acid for 4 months. They also found a marker for narcolepsy ( but 20% of people have the marker but may not have narcolepsy. My first sleep testing came back that I stopped breathing during sleep (apnea) a lot almost life threatening, so I had to stop my pain meds and redo the test which was January this came back as I still stopped breathing but only once or twice which is normal for me. But now have PLMD can’t remember what the p is but the rest is limb movement disorder. So more medication now on pregabalin 25mg cycling up to 300mg . My sleep has gone the opposite very fragmented sleep 1.5-3hrs wake then go through the cycle again. So that’s me so far but you need a referral to sleep clinic (here in London there is one at Guy’s hospital) it can take a while but you can get some answers and yes it’s run by neurology. I hope you get the help you need/ want good luck. Kevin( sorry its quite long)

[Catsuit53]

so sorry you’re going through this. Sounds as if you should go to a sleep disorder center.

[TangledUpIn]

I'm here to add that I totally get your desperation for sleep. Have you been checked for sleep apnea?