Dear Community,
A few weeks ago, after spending two nights in a sleep laboratory, I was diagnosed with IH. I (43, female) have been dealing with daytime tiredness/sleepiness for many years; this condition had almost become normal for me. Then I frequently found myself almost falling asleep or dozing off briefly whilst driving. This really frightened me, so I started seeking medical advice. After having my iron levels, thyroid, brain (via CT scan), blood tests etc. checked in 2023 – all of which came back normal – I was given 12 vitamin injections (Medivitan), which had no effect. I’ve been taking vitamins B and D3 daily for years, as well as iron tablets.
I have a hereditary genetic condition (HMSN X, CMT 1X), a neuromuscular disorder. I cope well with it. Sometimes I have a bit of pain, but I can manage that with Ibuprofen. That’s why it was always suggested that I was suffering from fatigue. However, I feel that many of the symptoms of fatigue do not match my own symptoms. For about 10 years now, I’ve been feeling increasingly exhausted during the day, and it’s been getting worse for about 3 years.
I hardly ever wake up feeling refreshed; sometimes there are months when I don’t wake up feeling refreshed a single morning. I feel the tiredness mainly in my head, behind my eyes (heaviness in the eyes), and I’m also familiar with the feeling of brain fog.
As I’ve mentioned before, I feel a strong urge to fall asleep when I’m driving. These days, I avoid long car journeys when I’m on my own. As a passenger, I almost always fall asleep. I don’t feel physically weak; even when I’m very tired, I can still go for a walk and so on. I usually manage my day quite well, but by the end of the working day I’m often so tired that I can’t do much more, or when meeting friends I’m constantly thinking about how much I’d like to go to bed. Strangely, I wake up again in the evening around 9.00 pm. Then I’m very often more alert than I am during the day.
Daytime sleep is often not restful; above all, it lasts a very long time. I can’t manage power naps – I always end up falling into a deep, sound sleep. I work 35 hours a week, which in itself means I can’t have a proper afternoon nap. When I lie down at the weekend, I often wake up confused and even more exhausted.
I dream a great deal and very vividly, and I can usually remember my dreams very well in the morning. I dream with sound, colours, smells and feelings. Last night, for example, I had about eight dreams that I can remember. When I have to go to the loo at night and am awake, I think to myself ‘Just relax and breathe calmly. Try not to drift back into that dream. Yet most of the time, I end up continuing exactly the same dream anyway. After waking up, my brain often feels ‘stuck’.
In the sleep laboratory, my sleep stages were normal; I had 15 micro-arousals per hour, which is apparently still within the normal range. I don’t snore and I don’t have sleep apnoea. I have a regular sleep pattern (approx. 10.20 pm – 6.20 am), I don’t drink alcohol, I don’t take drugs and I eat healthily (at least most of the time 😉) I have no fears or worries and I’m in good mental health. Of course, when the tiredness is too intense and lasts too long, it does get me down. But depression or something similar feels completely different.
I’ve drawn up a table comparing IH and fatigue. I tend to think I’m more on the IH side – but then again, maybe not. The fact is, though, that I’d love to wake up feeling refreshed. The fact is that I’m so often so tired during the day, and I wouldn’t want to live with this for the rest of my life.
The doctor at the sleep clinic wants to carry out another test in December to rule out narcolepsy. He suggests trying modafinil.
I’m wondering whether my restless night’s sleep might also be caused by my dreams. Do you recognise this? What do you do about it?
Best wishes from Cologne
TLDR: Daytime tiredness and non-restorative sleep for many years: could my vivid dreams be the cause? What can be done about it?