Living with BIH/Migraines

Updated: Jan 22

It's currently 23:57 on a Sunday night and I'm wide awake so I thought, why not write a blog post?? I'm going to strip it right back and talk about something that is never spoke about... Migraines. A boring subject but there are so many people who suffer with chronic headaches and migraines and there's very little information about it.

I've been suffering with migraines since the age of (about) 11. I remember constantly complaining about headaches but the Doctor put it down to the fact I wore glasses and told me to see an optician. I've worn glasses since I was a baby and I wear them all of the time so they would check my eyesight, say everything was ok and send me away.

As I got a little bit older, my headaches were then put down to puberty and I was put on the contraceptive pill to control the headaches. There were manageable at this point (painkillers etc) and it just became a part of my daily life - dealing with unwanted headaches.

Fast forward to 2016. I had a routine opticians appointment and the optician was really concerned about some swelling that she could see at the back of my eyes so she referred me straight to the hospital. At that point I had zero idea about what was going on or what it actually meant. I was on my own sat waiting for the on-call ophthalmologist to see me at the hospital.

After having a million blood tests, the doctor dilated my pupils and I was then rushed for a CT scan. This was to rule out anything sinister - such as a stroke or tumours - but they did diagnose BIH (benign intercranial hypertension).

This is just swelling around the brain putting pressure on the eyes, causing migraines. It isn't life threatening but untreated, you could lose your eyesight.

I was never informed of a possible cause but that it mainly occurs in women 18-30 and women who are overweight. It can also be induced by contraceptive pills. At the time I was overweight, I didn't really look after myself and I drank quite a lot of alcohol. Not the best combination but all of these factors contributed to the diagnosis.  

The swelling was that bad I needed a lumbar-puncture to relieve some of the swelling. That was probably THE most painful thing I have ever endured. With no anaesthesia, a needle is inserted into your lower spine and the fluid is then drained. I think I was in there for about 45 minutes whilst they were doing the procedure and it was horrible. I couldn't walk very far for about 24 hours and just getting up to use the toilet was a challenge. I was very lightheaded and confused.

My neurologist then told me I would need to lose at least 3 stone to be a healthy weight and I was prescribed Topiramate. Weight loss was one of the side affects of the medication and in 2 months I lost nearly 4 stone which wasn't healthy at all because I would constantly forget to eat and when I did, it would be very little.

Fast forward another 2 years and I was still getting headaches. At that point I was on a very low dosage of Topiramate and personally I didn't feel it was benefitting me in any way so I stopped taking it. My doctor and neurologist agreed with the decision and were monitoring me. I was still getting headaches but it was so normal that it was something I just had to get on with.

A few nights ago, I experienced a 'thunderclap' type headache where the only way to describe it is like a brick being dropped onto your head. It literally came out of the blue as I had just been out for tea! Painkillers and laying in a dark room couldn't budge it and I was getting increasingly concerned as I felt really drowsy and confused afterwards.

I called 111 for some advice and they asked that I made my way down to the nearest A&E department as soon as possible. I was checked out as soon as I arrived and then had to wait for blood results to come back. My bloods came back fine but didn't really explain what was triggering the pain so I had to go back for a CT the following day.

Luckily, the CT came back clear and there was nothing suspicious to worry about but they couldn't tell me what was causing the pain and I am now waiting to see my neurologist.

I know there could be worse things to suffer from but I have been living with migraines and headaches for the majority of my life and whilst I have learnt to manage them the best I can, there is no way of telling if the condition will ever just 'go away'. I can have a migraine at the most random and inconvenient time which is the most frustrating thing. I hate having to take time off from work or cancel plans because I'm having a really bad episode, but it isn't just as simple as taking painkillers and hoping for the best.

The moral of the story - please get any unusual symptoms checked out and if this is something you have experienced but haven't had a diagnosis, be consistent! It took 7 years for me to get a diagnosis so if you know in yourself that something isn't quite right, speak to your G.P!

#bih #benignintercranialhypertension #migraines #lifestyleblog #smallblogger


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