My journey to an IH diagnosis

I believe that I’d had Idiopathic Hypersomnia for a number of years. Sleepiness was a natural state in my life, until it became too much to handle.  Answers were required, and a cause, so i started my research into this persistent sleepiness.

Working with Primary Care

On going to my GP, I was tested for the usual causes of sleepiness which are often encountered in Primary Care. This included:

• iron deficiency anaemia
• Vitamin B & D deficiency
• Thyroid issues

There were a whole host of tests of which I had little understanding, but which also came up negative.

The night time sleep stayed at 9 to 10 hours a night, and with at least one long nap a day. These involuntary 3-4 hour sleeps, and the follow on “sleep drunkeness”, were the worst part of it.

Moving on to a sleep centre

On further investigation, I was referred on to a regional sleep centre. There, after a lot of work examining possible likely causes, I attended an overnight sleep study to see if I had Narcolepsy. Parasomnias (abnormal happenings in bed like Restless Leg Syndrome) and sleepiness caused by untreated OSA were ruled out. After analysing the results the sleep team felt they knew what I had.

However, due to issues around hospital policy, they were unable to treat me. Luckily this team referred me to another Service at a different NHS Trust. After some delay I was re-assessed within a neurological setting.

This was extremely frustrating as I had expected to be on a treatment regime by then.  This resulted in further stress. I was lucky though that my new neurologist was caring and empathetic. They put me on the list for the sleep specialist whilst going through their side of the process.

The final step of seeing my (now) consultant was nerve-wracking and exhausting. After a long and very thorough consultation, I was given the news that I had Idiopathic Hypersomnia.

I did have high hopes on a solution but there was no cure, and the treatment regime was patchy, but it was a start.

What I learnt in the process

• Idiopathic Hypersomnia and Narcolepsy are separate Hypersomnolence diseases, though categorised together.
• The illnesses do share some symptoms but each has its own defining characteristics.  This is similar to the relationship between Parkinson’s and MS.
• In addition, IH utilises a number of the medications used to treat Narcolepsy. Nothing unique has been found purely for IH.
• Evidence exists to show that these medications are effective, though not for everyone. However people may become refractive to them over time.