Hi everyone. I have been suffering nocturnal symptoms for seven years. Every night I awake with strange symptoms and understandably this has had a massive impact on my quality of life. I am exhausted all the time and had to give up on so many things.

I am writing this post to share my story and the observations I have made over the years, plus feedback from doctors and consultants I have seen during this time, in case they may be of help to you, or if you have had similar experiences I would be very interested to know. Perhaps we can learn more about this condition and hopefully find a cure!

I started having symptoms seven years ago and they have pretty much continued without a break all this time. I have no trouble getting to sleep, I think I drop off very quickly, within 20 seconds or so. I awake during the early hours, sometimes it is around 2.30am for a week then it might change to 5am for a few days.

My awakening is usually during a dream, not nightmares or anything stressful or unpleasant, in fact that are usually pleasant and very interesting dreams that I can remember well. Regular dreams prior to awakening involve me wanting to eat something sweet or laughing hysterically with friends.

My symptoms include the following (the most common first) - rapid pulse, desire to move my limbs (I tend to stretch out and go rigid - not involuntary but I just feel the need to do this), nausea, urge to urinate, slight pain on the side of my head/neck, a feeling of stomach movements - as though there are snakes writhing about inside, feeling faint, sensation of pressure on my chest, rising feeling of panic which I find almost impossible to control, periods of shaking/teeth chattering, coloured swirling lights in my 'minds vision' (this fades away if I switch on a light), racing thoughts, multiple thoughts at the same time, songs playing in my head, ticks in limbs.

It is as though my brain and body are suddenly on full alert and everything is hyperactive, brain and body. It typically lasts for 20 minutes for the worst of the symptoms and then gradually subsides over an hour. However I can't always get back to sleep and sometimes I am awake for the rest of the night. It is though I have drunk 10 espressos - my brain is racing at full pelt and it is absolutely impossible for me to sleep.

I have seen an endocrinologist, neurologist and psychologist. Various theories have included atypical migraine, panic disorder. I was referred to mental health specialists who gave me counselling, I attended mindfulness training and mood awareness courses. At the end of this they decided it was not a mental health issue. I have had a sleep study for sleep apnoea which was inconclusive. Nothing positive has been identified and I am still no closer to finding a solution for something which is slowly destroying my life.

I have have an MRI scan which was normal. Blood tests all normal. 24 hours urine tests - normal.

So, on to my own observations.

HORMONES. I found a correlation between my female hormone cycle and the symptoms, which were definitely worse just before and at the beginning of my menstrual cycle, also worse during ovulation. I am 49 years old and going through the menopause and I think this is contributing in some way to my symptoms.

BLOOD SUGAR. I have always had problems with low blood sugar - have to eat regularly or I feel like I will suddenly pass out and get shaky, confused etc. I have noticed that my nocturnal symptoms are better if I eat a higher fat meal late on in the evening. If I drink too much fluid I am worse at night. Too much water makes me feel faint and much more likely to have panic symptoms.

EXERCISE. Contrary to what you might expect, exercise increases my symptoms. Everyone says doing exercise will release endorphins and help you relax and sleep better but for me exercise makes me far worse. If I have a day doing absolutely nothing, eg. lying around on the sofa all day and eating, I sleep well. Unfortunately this is not practical (I have to work) and my quality of life would suffer in another way if I could not do anything, plus I could end up with diabetes and heart disease. I wonder if exercise directly increases my stress hormones or it is more linked to blood sugar. If I go for a gentle walk in the evening I have a terrible night.

Thank you for reading and if you have any similar experiences I would be very grateful to hear from you.