Sammantha Toombs, 23
My Story: When the doctors don’t agree!

I was 16 and in my first year at College when I found myself sleeping a lot more than usual. I couldn’t seem to stay awake past 9pm and I began dozing in between lectures. A few months later I experienced my first cataplexy attack, not that I knew what it was at the time.  I was walking down the stairs at college after a meeting with my tutor, when my knees suddenly buckled sending me falling. When I hit the bottom of the stairwell I couldn’t move, but I was conscious and fully aware of people around me. I was frightened, embarrassed and extremely confused.

I know now that these symptoms along with the vivid nightmares and episodes of sleep paralysis were all signs of narcolepsy. However, I have seen numerous doctors in the 7 years since then and getting a confirmed diagnosis has not come easy.

I first visited the doctor about feeling so tired aged 16, but at the time I was also being treated for depression and was told that excessive sleepiness was a further symptom of this. Even after I had my depression under control, I was still sleeping more and was then told that it was probably because of my weight. At this point I didn’t explain to the doctor about the times I was falling down uncontrollably, because I had no idea that it was linked, and to be honest I was embarrassed.

As time went on the fatigue and sudden knee buckling persisted so I returned to the doctor to explain about all of the symptoms together. I was 18 by this point and after two years of being fobbed off was desperately in need of a medic who’d take me seriously. By a stroke of luck the doctor I saw at my local surgery had specialised in sleep disorders during his medical training, and suggested that I could be suffering from narcolepsy. On his instructions I was referred to a Neurologist in Hull and underwent an MRI scan, blood tests and various assessments in order to rule out any other conditions that could be causing my symptoms. After pushing for a diagnosis I was eventually told that narcolepsy was the most likely cause and I was prescribed stimulants.

Under treatment in Hull I was given several MSLT tests. However, these weren’t performed in a high tech sleep clinic, but a busy and very noisey ward in Hull General Hospital and I failed to stay asleep for the length of time required to get an accurate reading. Doctors were able to deduce excessive sleepiness, but otherwise the results were inconclusive.

By this time I was living and studying for a law degree in Sheffield, so I was referred to a Consultant Neurologist at Sheffield Hallamshire Hospital in order to have medical expertise close by. On referral I felt optimistic that a new opinion, a different Consultant could give a fresh view and help to find the treatment I needed to control my worsening symptoms. However, contrary to the opinions of previous doctors the Consultant Neurologist I saw at Sheffield told me that I was not definitely suffering from narcolepsy, but that the symptoms I was experiencing might be physiological and related to the depression that I had suffered in my teens.

I was devastated. Although I hadn’t found previous conclusions of narcolepsy easy to take, to now be told that my symptoms were a result of my mental stability made me feel like I was being dismissed and the constant periods of extreme fatigue, sleep paralysis, hallucinations and cataplexy attacks were no longer tangible symptoms.

I continue to see this same neurologist and since initial consultation have been sent for counselling as well as lumbar puncture of which the results are still pending.

I have tried various stimulant medications, but all of which have failed to relieve my symptoms or have caused extreme side effects. As a result I have chosen to go without medication.

My symptoms have definitely worsened since onset, but they are manageable as long as I’m sensible about what I do. The cataplexy attacks mean that I’m very wary about going out, especially if I’m feeling tired and not being able to drive is very frustrating. I’ve really struggled to come to terms with my condition and the adjustments that I’ve had to make to my lifestyle as a result. However, I’m determined to remain positive and by doing so feel empowered to get on with life. I’m currently studying a postgraduate degree in law, which I hope to complete next year.