What life was like before

I got my first leak in 2009 at the age of 30. I had no previous medical history (nor any family medical history) and I was otherwise fit and healthy with no children. My leak started 2 weeks after I started going to the gym for the first time (I still don't know if this was coincidental).

In the build up to the leak I noticed that I was feeling very tired and run down, like I was permanently fighting a virus. Eventually I did get a bad cold (this was the middle of summer), but I thought it was beginning to improve when the leak started. Obviously I didn't know it was a leak, all I knew was that I had pain in the back of my head, neck stiffness, nausea and fatigue so I went to my GP.

It was only then that I started to notice deficits and changes in the way that my memory worked...

Treatment for my Leak

I was initially diagnosed with an ear infection and given antibiotics so I took sick leave from work and followed my GP's advice. After a week, when the antibiotics had finished, and I was getting worse, I went back. They decided to test for Glandular Fever because of the neck stiffness and the fact that my glands felt swollen, so I was sent for a blood test. When I went back for the results, they were negative, but I was still getting worse and they were running out of ideas, but decided that I should try amitriptyline for a tension headache. So I took amitriptyline which did result in changes to my sleeping pattern (I slept longer and deeper - not that I had any sleep issues before!) but it did nothing to help my symptoms, so I went back to my GP, feeling quite desperate by now (I was still off work), and they decided to try diazepam instead. After 3 days of diazepam with no improvements I went back and demanded to see a consultant but I had to ask which department I would need to see as I had no idea that this would be connected to Neurology! This was around 6 weeks after my first GP visit.

Luckily my GP suggested that I see a neurologist and I opted for a private consultation to speed things up. My GP advised which hospital I should contact for a private appointment and following a phone call to them I was really lucky to be given an appointment the following day!

At my appointment I was quickly diagnosed with a CSF leak. The consultant told me to have complete bed rest for 2 weeks, only getting up to use the toilet, and that he would arrange for an MRI scan, Echocardiogram and some blood tests (on the NHS). He also advised that I drink lots of caffeine (I drank absolutely no caffeine at this point!), and raise the foot of the bed if possible, so that my feet were higher than my head. If the bed rest didn't work he advised I might need a blood patch but he felt that the bed rest should work.

So I did my 2 weeks of bed rest. I was really fortunate that my partner worked from home full time to do meals and look after me . The first evening I started drinking a sugar free energy drink, which was an experience having never drunk caffeine before! I'm normally in bed around 10.30pm, that evening I stayed awake until 3am in bed watching US basketball with my partner (I soon understood what caffeine did!). But, I felt the effect of the caffeine immediately in terms of reducing the headaches, so it felt right.

At the end of the 2 weeks I started trying to do things, to be upright, leave the house, go for a walk, and spent the first 10 days just increasing my activity to prove to myself that I could go on a holiday which we had booked. I then did a couple of days back at work and then went on holiday. I had no setbacks during this time and the holiday was a success. I came back and went back to work immediately, it was only then that I started to notice deficits and changes in the way that my memory worked, it wasn't life limiting; just noticeable. I thought it could be connected but I didn't have the confidence to raise it with my GP as I didn't think I'd be taken seriously (at times I didn't even believe myself).

I decided to undertake a Masters degree to prove to myself that there was nothing wrong. In fact what I learnt was that there probably was something that was different about the way that my memory worked, but that I adjusted to manage it so it didn't matter (I did the Masters degree over 3 years in my own time (in addition to working full time, and achieved a Distinction). By the end of my degree I was utterly exhausted (not unexpectedly perhaps) but tried to adjust back to normal life and enjoy my newfound spare time.

Over the course of the next year I noted that I had increasing issues with fatigue and feeling 'viral' on a regular basis and thought about going to my GP on a number of occasions but never bothered as I couldn't put my finger on what was wrong. In September 2015 I caught a virus with a really bad cough (very unusual for me, I never get coughs) and a few weeks later the fatigue came to a head and I realised that the unique pain in the back of my head had returned, and that I was leaking again. This time a blood patch was arranged for me, and following the procedure, I committed to a week of bed rest again .

Life after treatment

After 7 days I started getting up and trying things (going for a walk, going in a car etc.), and I felt strange at first but it got better the more activity I did. I went into work to get a laptop so that I could start doing some work at home. I went back to work full time approximately 6 weeks after the blood patch. I also went back to the gym around this time.

The first few months back to 'normal' life I gradually increased activity to try and get back to normality (I spend every weekend following my football team!). I had mixed results, sometimes I felt that I was getting stronger and then I'd have a few tired weeks, around 5 months later I was doing really well and then I got a bad bout of Tonsillitis. That wiped me out for a good few months and since then I've never really felt like I can get back to 'normal'. I am waiting on a referral for Chronic Fatigue Syndrome; I've had further MRI scans that are normal so I've kind of been left to work it out for myself.

I have had no head pain since, but I continue to have memory issues/ brain fog, fatigue, sensitive/ distorted hearing, ears popping (presumably high pressure), and increased feeling of dehydration .

Rachel's update...

It’s now November 2021. My only medical procedure for the CSF Leak was the epidural blood patch in November 2015, after MRI scans revealed visible changes to my brain, so they knew that I had a CSF Leak, but they were unable to see where the leak was.

I have made improvement gradually over the years, which was either spontaneous, or a culmination of time, knowing my limits better, and lowering my expectations.

In 2017 I had a referral for suspected Chronic Fatigue Syndrome. Following discussion with the Specialist, we agreed that my issues were not being caused by Chronic Fatigue Syndrome. I struggled for another two years with a general sense of fatigue and just not feeling myself. I had a further MRI and tests in October 2019, which were found to be normal, despite me still experiencing symptoms.

Looking back, I think that I was making really gradual improvement, but it is so difficult to recognise that at the time. When the COVID lockdown hit in March 2020, that felt like a bit of a turning point, as I was able to work from home full time, and with nothing else acting as a distraction, I was able to focus solely on my wellbeing. I think I have a better sense now of what I am able to do, and what I need to take care with. This acceptance of having to listen to my body and manage the condition has allowed me to do more things, with greater confidence.

I still have mental fatigue, and memory / concentration issues; and the tinnitus is always there in the background; but I guess I am learning to live with all these things more successfully! I still have those days where things feel bad and I consider going back to my GP, but things do normally improve again with a period of rest. I’ve reached a point where I accept that there isn’t any more that can be done medically, unless I suffer a full blown debilitating leak again and fingers crossed that won’t ever happen.

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