A Lifetime of Insomnia

An early start

I am a British artist living in the North of England and I thought I’d share some of my experiences of
insomnia in case it resonates with anyone else or raises awareness about the condition.

I have had insomnia nearly all my life, indeed I have had it for 58 years – I mean, being unable to get
to sleep at all has been 95% of the problem; 5% has been that I’ve been able to get to sleep only for
a very short time, or get to sleep for a short time but not get any restorative sleep, or get to sleep
but constantly wake up.

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During my childhood, this left me feeling constantly cold, shaky and unwell with a poor immune
system, unable to concentrate properly and in a low, hopeless mood. I could not break the cycle and
no-one tried to help me. Needless to say, this greatly and adversely affected my life and I was
unable to develop as otherwise I might have done. Later, thank God, at the age of 16 or 17, I did
manage to persuade our local doctor to give me a sedative, which I think was Valium. This did not
really work, but it did have a mild benefit – and it was certainly better than nothing. By the age of
18, I finally found a doctor who prescribed me Flurazepam, a benzodiazepine derivative. This drug
was excellent and worked very well but later in my life, in my thirties after a house move, another
doctor took it away from me without explanation or seriously considering the impact it would have
on me. At that time, he put me on Temarzepam, also a Benzodiazepine and a controlled drug.

Who is going to help?

People like me fall into a small category of those who have chronic insomnia that never improves
whatever our state of mind – whether I’m happy, sad or indifferent, I do not respond to any other
form of treatment, CBT, alternative medication – such as Chinese herbs, magnesium, Nytol,
lavender, you name it.

The famous words ‘Just pull yourself together’ and ‘you’re just stressed’ are very counter-
productive for anyone suffering with this very serious chronic illness –obviously, people would pull
themselves together if they could! Doctors in the UK use these types of phrases when they are not
interested in helping the patient or they do not know how to help them. If I could offer any advice in
this situation, I would suggest that sufferers challenge this view assertively and insist on receiving
help; after all, insomnia is dangerous not only to the sufferer but also to all the people around them.

I would also advise people to stand up for their rights and lobby governments to provide funding
into meaningful research into insomnia, not research that merely repeats that which has already
taken place and allows governments to continue in their complacency.

Poor sleep hygiene is often cited as the cause of sleeplessness –quite obviously loud, crashing noise,
hot rooms and bright lights etc. do not help anyone get to sleep – however, poor sleep hygiene is,
in my opinion, exaggerated as a cause of insomnia and it is certainly not the cause of chronic
insomnia. Likewise, a poor diet rich in sugar, aspartame, fizzy drink and fat etc. never did anyone
much good, especially at night, least of all insomniacs, but that is to state the obvious. Many people
have some form of insomnia in their lives at some point, whether it is a mild attack of a few nights
or a major chronic condition. It can also be the bi-product of other illnesses or conditions such as hyperparathyroidism – the inability to sleep increases the older we get, so rather a lot of people are
affected.

I could cite many different statistics but one that stands out in my mind was reported by the
Consumer Reports, consumerreports.org, in 2016 which stated that an estimated 164 million
Americans struggled with sleep at least once a week.

Now some parts of the media are beginning to take the condition seriously, at last giving a voice to
people suffering with Fatal Familial Insomnia (FFI). According to NORD, the National Organization
for Rare Diseases, this ’is a rare genetic degenerative brain disorder’ which gets progressively worse
and is caused by a gene mutation. It has been around for a long time and it has been undiagnosed or
misdiagnosed, which is probably why we did not hear about it before now – however, the
prevalence of the disease seems to be increasing. Molecular genetic testing can confirm a diagnosis,
but in the UK such diagnostic services are available only at specialist laboratories and are not readily
accessible.

Restriction of prescription

It worries me that governments, including the UK government, are becoming increasingly anxious
about doctors prescribing sleeping pills such as Temarzepam. Here in the UK, this is because
criminals have used Temarzepam recreationally to come down from a high, and the drug can be
bought on the street. This is a problem for governments, but I find it a cause for concern that
innocent people such as myself, who have never sold this drug but who desperately need it if we are
to survive, are finding it harder to justify to medical authorities our need for it. We should not be
categorized in the same way as people with minor sleep disorders.

Assertive warnings are shown on the front of the packet ‘It is a traffic offence to drive if your ability
is affected by this medicine’. I have never driven whilst my judgement is impaired by any substance,
but if I were not able to take this medication, my judgement certainly would become impaired and
possibly cause an accident. It strikes me that the law is becoming more and more shrill and lacking
in emotional intelligence with regards to issues relating to insomnia.

Obviously, there is a problem with all addictive drugs, but when the only medication that will work is
an addictive drug, you have to accept the situation and take the only solution that is available – an
addictive drug. It is surely up to each individual to act responsibly and sensibly whilst taking these
drugs.

The case against addictive drugs is that they lead to addictions, obviously, and some people are
more susceptible to becoming addicted than others – it is surely fairly obvious to suggest that people
on addictive medications should be given much easier access to addiction clinics and management.
There is no reasonable justification for suppressing these drugs.

I also find it increasingly concern-inducing that doctors face officious demands to account for their
prescribing Temarzepam – doctors have spent many years training to become doctors, yet they
seem less and less trusted to use their professional judgement. What is the point of their training, I
wonder if they are not allowed to make the necessary points? I would make the same comment
with regard to the prescribing of cannabis for medicinal purposes.

What may the future bring?

If the government cracks down any further on Temazepam or similar drugs, it seems to me that the
the number of deaths caused by insomnia will increase.

Everybody in this world has the right to prosperity and good health – God gave us plants and herbs to
use as medications to assist us in this regard; they have been put here for us to use sensibly and not
to be taken away unjustifiably due to a fear-based mindset.

Lastly, I was interested to learn that David Cameron, our former Prime Minister, had taken cannabis
and that Michael Gove, a senior Cabinet Minister, had used cocaine. Maybe they could have a word
with the Home Office and encourage a more enlightened response to controlled drugs.

NOTE: Sue Andrew is the author of the picture above.

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