Tracy Nesbit has experienced insomnia all her life. She tells PharmaTimes her story

How and when were you diagnosed with insomnia?

It was after a period of six to ten months of not sleeping that I went to the doctor. He asked me if I was worried or stressed and I said no. I would be sleeping and then ping! I’m awake, and that’s me for the rest of the night. My mind would be completely awake and I would just start going over what had happened during the day, what I was going to do tomorrow, my to-do list. He diagnosed me with insomnia during that session and that was about 18 months ago. However, I’ve had undiagnosed insomnia on and off ever since I was a child.

Have you received any medication or treatment and, if so, what was your experience with it?

My GP recommended antidepressants as a treatment; I wasn’t keen because I’m not great with the idea of tablets, but he said they had proved effective with patients before, so I complied. That night, I took the pill and went to bed and slept through for eight hours. I woke up and felt marvellous! The following night I took another pill and went to bed, but didn’t sleep as long. The next night I was awake by 4am, and stayed awake for the rest of the night. By the next night, they didn’t have any effect at all and I was back to square one. My GP then prescribed different antidepressants. Again, they worked initially but their effectiveness quickly waned, though I kept taking the tablets. Then while out shopping I noticed floaters and flashes in my left eye and felt dizzy. I went to the optician to discuss it, who strongly recommended I go to my GP because it sounded like I had a detached retina. The GP told me to stop using the antidepressants for my insomnia and, after a year of tests, concluded that I didn’t have a detached retina and was likely experiencing side effects from the tablets. I tried two more antidepressants; they also helped initially but quickly their power depleted, and I continued to feel dizziness as a side effect. I have self-medicated with herbal remedies, which I found useless. I have also tried cannabis edibles, which would help me fall asleep initially (though I never had a problem with this anyway), but as they wore off in the night I would wake up again.

Do you find your insomnia is worsened by certain environmental factors?

Yes. If I watch a film or programme, or have a conversation that’s overly stimulating in terms of theme, drama, violence, I’m revved up and find it difficult to relax. I can’t drink before bed and won’t have a drink after 5pm if I’m hoping to sleep that night. Noise and light also keep me up (and snoring partners). If we’ve had bad news or a row during the day then I struggle to sleep. Over-stimulation and stress stop me from sleeping. I have multiple sclerosis and this also affects my sleep. Spasms can wake me up in the night. I had previously taken drugs to alleviate the twitching, but these are addictive and I had to up the dosage in order to maintain their effect. I didn’t want to become reliant, so I stopped taking them and the spasms got worse again.

What do you find is the best way to manage the situation?

The quick fix failed. It would have been perfect if it had succeeded. But I started doing research into cognitive behavioural therapy and I found a great YouTube channel that helped me understand what insomnia was. A doctor had never told me. I understood that it wouldn’t kill me and that I would continue to function. It’s difficult but not the end of the world. When you have insomnia, you feel very isolated and that no-one takes you seriously. This YouTube channel also helped me redefine my bed as task-specific, in that it’s for sleeping and sex rather than for watching TV or doing other things. It’s about rewiring your brain to see this as a space for sleep. I also began to do research into yoga and meditation, which has relieved my stress, helped me to relax and given me strategies, such as breathing exercises, to employ when I can’t drift off. I realised that when the doctor had asked initially if I was stressed or worried, I was, I just had believed I was the kind of woman who wasn’t affected by stress. I redefined how I saw stress and worry and acknowledging these things helped me sleep. Also, with yoga I found my spasms abated and stopped entirely during the night, also helping me sleep. Avoiding what I found to be my triggers such as loud noise or lights at night, and alcohol before bed helped. I also took up reading again as this helped me relax.

Are you satisfied with the GP care that you received?

I think NHS GP care is limited. You have ten minutes to speak to your doctor about something that’s been bothering you for a considerable time. My GP did his best with the resources available. It’s easy to tell someone to relax, but it’s difficult to do it without instruction. He did try to ask if I was worried, but it was my belief that I wasn’t stressed that prevented us from progressing in that area. It was dismissed fairly quickly though and I do think that meditation and yoga should be more widely acknowledged by the NHS as treatment for this. It’s seen as ‘hippy’ and inconsequential, but for me, it’s been my saviour. Neither yoga nor meditation is recommended by the NHS.

How does the disorder affect your day-to-day life?

Before yoga and meditation, it made me feel empty, emotional, short tempered. I was not as mentally alert. I was clumsy and would knock into things and have minor accidents regularly because I wasn’t as co-ordinated. Even though I don’t like putting labels on myself, I think I was depressed for periods at a time. Menopause was pivotal for my insomnia. It fired it up and kept it burning, whereas when I was younger I would have periods of respite. Having done meditation, even though my insomnia has not alleviated entirely, I feel I can cope. I’m tired, but I’m not emotional and angry about not sleeping. I’m comfortable in my own skin.

Have you been part of clinical trials, would you consider it?

No I haven’t, but yes I would consider it.

What information would you give to a newly diagnosed patient?

Look at your diet, including alcohol intake. Become aware of your stressors. Consider your home environment and how it could be more peaceful before bed. Respect your bed-space as one where you sleep, it’s not your living room. It’s not the end of the world, lack of sleep doesn’t kill you and you won’t die. Look up meditation, yoga and cognitive behavioural therapy. Keep a sleep diary, see how much you sleep and what other things you were doing that day. Work out how many hours you spend in bed asleep as a percentage.

What are your hopes and fears for the future?

I live in the moment now because of meditation. I hope that I’m fit enough to do my yoga until I croak.