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?

[kaliska0]

I would find another specialist in reproductive hormones or an overall endocrinologist. Since hormone levels fluctuate and the accepted normal is so wide for women finding doctors that will do tests and take action can be difficult. Despite the fact complete testing of hormone levels frequently has an obvious result if hormones are the main cause. It requires harassing numerous gynecologists and it often ends up being an endocrinologist, different general doctor, or once an integrative health doctor that finally run hormone tests. My estrogen level always comes back higher than what is normally seen with 3rd trimester pregnancy and I've never been pregnant. Levels of everything went off the charts recently and I'm 40 years old. My only solution since I was a teenager has been going back on birth control pills because most doctors are useless for female hormone issues. Sometimes non-prescription bioidentical progesterone and estriol can help. Occasionally topical estriol oil has been more effective for correcting my hormone issues than bcp.

You can get basic LH and FSH test strips without a doctor at a relatively low cost but they will only say if the level is over a specific amount or not. Typically people only care when tracking cycles to attempt pregnancy and sometimes helping determine the start of menopause. Both should go in cycles with only a few days of positive LH. No FSH rise or LH being positive too many days over several months usually points to hormone imbalances so the home tests can be useful for convincing doctors to investigate further. HRT may make it harder to tell what is going on.

Of course as you get older you run into the mindset that menopause is normal and you just have to live through the hormone fluctuations. Not true and sometimes impossible. I have never been that miserable and I have lived my entire life with extreme sleep issues and constant minor hormone issues.

FSH and LH control the reproductive cycle and should control the levels of estrogen and progesterone but this does not always happen. Especially near menopause or with PCOS when an egg does not release in response to rising LH levels. You can get stuck with high LH and estrogen despite the fact estrogen should reduce production of LH and then estrogen falls again after LH does. Sometimes more estrogen from another source can fix the problem temporarily by suppressing LH despite your natural estrogen production not accomplishing it. When using HRT you may keep estrogen levels too high despite a drop in LH or your supplemental amount may not be enough to suppress LH. Without testing it's hard to say. When estrogen and LH are high it can cause sleep disturbances, fatigue, hot flashes, difficulty concentrating, forgetfulness, acne, differences in hair growth (gaining facial hair, thinning head hair... ), weight changes, and other symptoms associated with PCOS or perimenopause. High LH can cause some symptoms without high estrogen including sleep issues. Sleep issues are often one of the first and most notable symptoms but often overlooked.

The HPA axis is basically the central control for all hormones even if other organs are involved. Women experiencing hormone imbalances potentially have thyroid hormone issues with it and sometimes high or low cortisol levels. My thyroid levels sometimes test low but not always. Hormones have a big impact on your sleep/wake cycle through daily changes. In the morning cortisol and estrogen rise. At night they drop and progesterone rises. It aids the shift between alertness and sleepiness. Body temperature also should lower at night and be higher during the day. Thyroid hormone and cortisol increase alertness and energy while reducing the ability to sleep. LH is less clear since it only appears for a few days when nothing else is going wrong. While the exact mechanism isn't known it has been shown to be very relevant for sleep and energy when hormones are a possible cause of symptoms. Progesterone mostly increases how sleepy and relaxed you feel and can off set some effects of high estrogen but only to a point and taking too much replacement progesterone can contribute to lack of motivation during the day while still having a lack of deep and rem sleep if estrogen and/or LH remains too high.

Natural levels of hormones rise and fall at specific times to create the sleep/wake cycle but doctors prescribing HRT often ignore this. With how infrequently all hormones are checked you can also suffer a minor hormone imbalance altering sleep or energy for many years without it ever being diagnosed. As you approach menopause or sometimes randomly throughout life these issues can become more severe and what has been happening for so long it seems normal may actually be the main symptoms of the underlying problem.

It's very hard for people to judge how well they slept. It's a major flaw in all studies on sleep medication and sleep disorders if an eeg is not used. Self assessment of sleep is flat out terrible. Your brain is not fully aware and memory does not function well. That's why we typically only remember what we dream shortly before waking. If you are aware of waking numerous times and especially of lots of dreaming throughout the night you may not be sleeping well during all the time between when you know you woke up. You just have no way to know when you are remaining in shallow useless sleep or getting deep and rem sleep. Only when you are fully awake or not. Sleep studies can check for that but they often run for limited hours and each night is not the same. Sometimes people suddenly sleep great during sleep studies so doctors assume it's environment or habits when it might be bad timing for seeing an inconsistent problem.

Sometimes poor quality sleep is due to behavior or environmental factors so any sleep specialist is going to insist you follow good sleep habits or some call it sleep hygiene. Avoid electronics before bed, no caffeine or alcohol, go to bed at the same time every night, get up at the same time every day regardless of required activity or amount of sleep, find a relaxing activity or 2 to do every evening before bed so it signals your body to get ready for sleep, make sure the room is cool, your bed is comfortable, and use white noise to reduce sounds that might wake you. A sleep diary or journal is also usually done. If you want to pursue seeing a sleep specialist it is best to start a sleep routine and recommended habits as well as a sleep journal now to avoid spending weeks to months completing those things before they will usually start looking at other causes.

[mo222]

Hi Lucy, very relatable I'm 44 and going through perimenopause. 2 years ago out of nowhere my sleep started to get disruptive like you I'm awake after 1 - 2 hours up down up down. I'm also on hrt but not the magic I was hoping for. I know it's peri related even though my gp thinks it's down to my mental health. Get your gp to test for low tesosterone if you already haven't mine was very low. Sorry your suffering it can be very debilitating when your sleeps disrupted. X