Asthenia on waking / Persistent sleep frenzy

Good evening,

My sleep is not restful, as far as I can remember (childhood).

I constantly wake up “mushy”, “in the cake”, “exploded”.

This state lasts an average of 8 hours after I wake up and often fades as night falls.

Sometimes it’s still there when I go to bed at night.

On a finer note, it’s kind of an uncomfortable “grey” cottony/cloudy feeling that takes over my whole head, a grainy feeling behind my eyes, which are otherwise swollen and puffy within hours of waking up. It’s associated with photophobia +++, phonophobia and often headphone headaches, and (rarely) when I wake up really badly, balance problems (similar to drunkenness). The intensity of the severity of this condition varies randomly depending on the day. Sometimes it’s just uncomfortable. Sometimes it’s hell on earth.

I consulted late in sleep medicine because my GP had relied on fatigue associated with growth and youth throughout my adolescence. Also, it was quite late for me to understand that my vision of “fatigue” was not the same as others’.

I slept a lot when I was a teenager (around 10-11am) with no change when I woke up. I have tested many bedtime/sleep time changes. Nothing plays with this state (although it adds a more “painful” fatigue if I sleep little, or even more sluggishness than normal if I sleep too much). The (intensive) sport helps a little. Immerse yourself in cold water (sea/lake), even a little. Screens (telephone, television, computer) and reading aggravate this condition. I narrow them down as much as possible.

In search of ways to reduce suffering, I found that when I took a short nap (20 minutes), this condition disappeared. I have reorganized my life to be able to take naps during the day (often around noon and 6pm). It’s a solution that works but has limitations (social misunderstanding and related consequences, difficult at work, difficult to skip a nap, now that I’ve got used to it, little flexibility when I need to change my pace of life ( Change of schedule etc.). ).

I tend to go to bed late (logical, if you don’t feel well until the evening) so I have fairly short nights (6-7am) which allows me to take naps (it’s a type of polyphasic sleep). On weekends and public holidays it’s grass mat and 9-10 o’clock sleep again. But it doesn’t make me feel any fresher.

I consulted sleep medicine in two different centers (Paris and Montpellier).

Nothing unusual about the Polysomno.

Some have spoken of narcolepsy because I nap.

The other phases shift because I go to bed late.

I feel like none of them really listened to what I was saying.

I’m starting to turn away from them because I feel they are powerless to help me any further.

I’ve had melatonin (prescription) for a few years now, which I take occasionally.

The effect on falling asleep (when I’m too absent) is modest, and that doesn’t change the problem I present.

I recognize myself in the description of “sleep intoxication” seen in some people suffering from idiopathic hypersomnia.

I have no atcd psychiatric illness, no family history of sleep disorders, no other health problems.

I’m 29 years old, healthy, athletic, not overweight

I am writing this message to find out if other people recognize these symptoms and if so what have you been offered? Did you find things that work?

Do you have any advice for me for others?

Thank you for reading !

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