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
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Lucy___
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Welcome to this forum. You will find lots of help, support and understanding here.
I can't help you with the problem you stated as it has nothing to do with RLS but I can help you with your RLS.
Sedating antihistamines make RLS worse. The only safe ones are OTC Claritin (loratadine, Alavert, Loradamed, Clarityn), zyrtec (Cetirizine), or allegra (Fexofenadine, Telfast) or prescription Clarinex (Desloratadine)
Are you taking any medicine for your RLS? You don't mention any so I will assume you aren't.
Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice.
Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip), pramipexole (mirapex)or Neupro (rotigotine) unless there is some special reason s/he feels you need it. They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation. Instead ask your doctor to prescribe gabapentin or pregabalin. (Pregabalin is more expensive than gabapentin in the US.) Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin)
Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium nor antacids within 2 hours for the same reason (not sure about pregabalin).
Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at
Time your medicines so that you take your thyroid medicine at least 4 hours from any medicines that contain aluminum, calcium (or calcium rich foods), iron and magnesium (or magnesium rich foods). DAs like pramipexole inhibit TSH secretion so brings down thyroid hormones. Conditions associated with hypothyroidism can make RLS worse so want to bring it up.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.
1. You don't mention Restless Legs Syndrome at all: Sue has given you advice if you DO have RLS, but what you describe sounds like another sleep disorder: is that correct?
2. While your doctor may not know anything much about RLS specifically or sleep disorders in general they should be able to refer you to a neurologist or a sleep specialist. Where are you in the UK as I have a couple of lists of sleep clinics that may be able to help you.
NOTE: I'll probably be on here for another half hour or so this evening, but if I miss your reply this evening I WILL get back to you tomorrow morning. Hang on!
Yes , sorry I do actually have very severe restless legs on top of everything else which is pure hell most nights but the most concerning issue for me currently is the falling asleep / feeling so ill and there isn't a narcolepsy group, this was the closest I could get and I know that restless legs can be related to sleep disorders so was hoping that there would be some overlap and there would be people in here also suffering with sleep disorders who might be able to help with recommendations. I'm based in York but get no help from my GPs and the sleep clinic I went to discharged me simply because I had a normal obstructive sleep apnea test that I did at home when I suspect I need further eeg testing and an overnight sleep study but I just can't get any help from anyone medical 🥹
I don't take anything. I did mention it to my doctor last week but she did nothing. If it's extremely severe then I'll rub magnesium spray into my legs and feet which does seem to help I think.
But some days its just bloody awful on top of everything else.
There's a Respiratory Medicine Dept at St. James University Hospital in Leeds (c. 25 miles), but they didn't reply to two enquiries I sent them, so not promising.
The Department of Sleep Medicine at James Cook University Hospital in Middlesbrough (I know that's 50 miles north) says that it accepts both NHS and Private referrals.
I've heard good things about the Sheffield Neurological Sleep Clinic at the Royal Hallamshire Hospital, Sheffield but that's 50 miles south and I believe that they only accept NHS referrals.
It's possible that SueJohnson may have a record of a recommendation for a neurologist or good doctor near(ish) you.
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RLS only when lying down
Desperate for help 
Waking suddenly after a few minutes of sleep every night
Afternoon narcolepsy 
