Seaine
Hi, I am wondering if you know of likely underlying conditions for hypersomnia. I don't have anything obvious like multiple schlerosis, and as fas as I can tell I'm not depressed (and no doctor has suggested to me that I am).
I've had the symptoms for it since I was ten or eleven - sleeping at least 9 or 10 hours per night and up to 12 or 13, extremely strong urges to take naps during the day sometimes lasting 2 hours, extremely hard to make myself get up in the morning/after naps, sleep paralysis, feel sleepy all the time despite the amount I sleep. I was diagnosed a couple of months ago with a sleep study that basically just ruled out everything else such as narcolepsy, RLS, or periodic limb movement. They had me sleep for about 7 or 8 hours and then had me take 5 naps throughout the day. I had no trouble falling asleep for any of the naps (after all, 7 hours of sleep is not even close to enough!) and my average time to fall asleep was less than 10min.
I also have chronic migraine syndrome, currently at 1 or 2 migraines per week on three preventatives + migraine rescue triptan. One of my childhood neurologists suggested that chronic fatigue was associated with migraines when my mother complained about my sleeping, although he did fail to diagnose or treat my hypersomnia.
I also have low blood pressure - 90/60 resting. I also have Raynaud's syndrome, started maybe 2 years ago; that is undiagnosed but I am not stupid and I can use the internet. I have also fainted unexpectedly, went to the doctor for that. The internet tells me that these three things can be associated with hypersomnia. When I fainted I was tested for anemia and I did not have it. My thyroid was also tested but they said it was normal. I've heard that people with hypothyroidism usually weigh too much but I weigh 110lbs at 5'2" and I eat whenever I want, so it seems unlikely. However, I've heard some others with hypersomnia say that their thyroid tested within normal range, but thyroid medication still helped them.
One of my neurologists mentioned that a vitamin B-12 deficiency could cause fatigue, but then he did not test me for it. Perhaps he decided I didn't have enough of the symptoms...
What kind of tests should I ask for and what kind of things should I look into, before concluding that my problem is simply genetic and I'll just need to take amphetamines whenever I want to feel awake?
Hi Seaine, sounds like you've been through the mill a little.
Right, so, you've suffered with hypersomnia for a while now, and as you describe its having a problem with your day time.
What three preventatives are you on for your migraines may I ask?
The low BP can be a factor into fatigue during the day, and when taking propanolol its not the best of things; so it could be making you feel worse than what you need. Remember Betablockers act on the receptors to B-adrenaline, and so reduce the fight/flight physiological response your body has: slowing the heart down, dilating blood vessels, resisting dilation of bronchi etc.
Raynauds is quite a an uncommon diagnosis, but with your collection of symptoms, I can see it being a possibility. Please don't take offense, but if you could clarify your own experience to why you think raynaud's I'd be happy to reassure you that you do or don't.
I'm with Munkers here, I think you should definitely look into cortisol production (rather than adrenaline).
testing for this will include:
• A blood test - looking at serum/blood concentrations of cortisol and adrenocorticotropic hormone (ACTH)
• A urine sample - usually a 24-hour sample (http://www.labtestsonline.org.uk/glossary/urine_24.html)
Cortisol is the natural hormone that provides stress to the body, not only that, but alertness, a circadian rhythm of the body that cycles once a day, and helping us wake up in the morning. The cortisol in ones blood varies with the events of the day, but often is quite constant. The biggest peak should be at around 4-5am. This help your sleep pattern realign correctly in to NREM to allow you wake up without deprivation or problems. With people with low cortisol people can often feel tired and sluggish, not wanting to wake up in the morning. This, along with medication, lack of good solid sleep, and other medical problems such as thyroid, could be a problem.
Okay, so things you should ask for:
Full Blood count: recheck for anaemia, pernicious anaemia associated with B12 deficiency
White Cell count: ensure no immunological and possible stem cell pathway issues
U&Es: to see if your kidneys are functioning okay, and see if they are in anyway misbehaving that cause a knock on effect on the blood
TFTs: looking at TSH, T3 and T4 samples again to try and rule out hypothyroidism
Fasting Glucose and HbA1c: rule out any diabetes or similar syndrome
Cortisol testing: as above
Abdo x-ray with contrast or CT with and without contrast to check the adrenal glands and kidneys