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Who am I?

Hey there, welcome to my blog. My name is Sian, I’m 28, I live in Scotland and I have a chronic illness called M.E.  What is M.E.? M.E stands for myalgic encephalomyelitis. It is also known as chronic fatigue syndrome (CFS).  How long have I had ME?  I developed M.E 2 years ago at the start of September. I was about to start college to study beauty therapy and the day before I had a headache. Ok, no big deal, everyone has headaches. By the evening it had developed into a migraine (you know, when you can’t stand the light, or sounds, and you feel like you’re going to throw up). I didn’t think too much of it and hoped it would be gone by the morning. Well, it didn’t go. In fact, I had that same migraine constantly for 6 months straight.  What did you do?  I got on with it. I started college the next day, and I attended every day I was supposed to until I couldn’t handle it anymore, which was Christmas 2016.  What ...
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Horrible Migraines

So, going back to the migraine...

I saw my GP a number of times about my migraine, I also saw an optician several times to make sure it wasn’t being caused by my eyes, but all was fine; no changes to my prescription, eye health was great. So what was wrong with me? 

They tried me on a few different medications for it, initially I tried one of the triptan meds which are usually the first point of call with migraines, but they soon took me off them because they clashed with another medication I take. I tried beta blockers and two anti-epileptic drugs; the first called Carbamazapine, the second Topiramate. Neither one of them worked, and in fact, Topiramate made me feel worse - it was causing a feeling of pressure behind my eyes and I was having bright flashing light auras, which wasn’t typical for me. We soon found out that it can cause glaucoma and retina detachment, so I soon came off of it. 

I was popping a lot of co-codamol to keep on top of the pain while we tried to figure out what was wrong with me, but taking opiates long term can cause its own problems. After a few months I developed rebound pain. This is where the painkiller stops working to treat your pain, instead it causes its own pain, and it can be worse than the pain you were taking it for! How ironic. 

When it got to this stage, I would have to stop taking it for at least a week, more likely two, and each time this happened my life felt miserable. I had nothing to help the pain and no idea what was causing it. Then they tried me on Tramadol. When I got home that day from the doctors I started with one tablet, which did nothing. After four hours I decided to try two, but this was a huge mistake. I had some sort of allergic reaction to the tablets. 

Within ten minutes I started to feel unwell; my heart was racing, I was dripping with sweat yet also physically shivering, and I had this unbelievable pain in my head. It felt like someone was drilling into the left hand side of my skull, it was so concentrated on one tiny area, but it was agonising. 

 Denys (my boyfriend) helped me to the bed. My body was convulsing out of my control, all I could do was take ragged breaths between sobs of pain and fear. He rang the doctor who told him to get me straight to A&E. At the time we lived in a flat, Denys owned a garage a few minutes walk away and the car was in it that evening. He had to leave me in bed while he brought the car around. As he left I remember telling him that I loved him over and over again, I was beyond scared. It felt like a long few minutes, but eventually he came in and got me out to the car and we headed to our local A&E department.

I was called as soon as I sat down in the waiting room, I was clearly distressed and unwell so I was grateful to not have to wait long. The nurse took some observations, I had tachycardia (rapid heart beat) and my breathing was very shallow and strained. We spent the next few hours repeating my story to doctor after doctor, sometimes I wasn’t well enough to speak and so Denys took over for me. There wasn’t anything they could do, but keep an eye on me, give me some air to inhale and wait for it to pass. When it eventually did, I was sent home with two aspirin and a prescription for a very high dose to of it to keep me going. 



My mum also has ME, she was diagnosed a few years ago. I had a chat with her about headaches and what she takes for it, as it was a symptom she had too. She was on an NSAID (non-steroidal anti-inflammatory drug) called Indometacin. I asked my GP if I could give it a go as nothing was working, and she agreed. Within a few weeks the pain thankfully began to lessen, my need for co-codamol went down and so I was able to keep away from rebound pain. 

I have been on it ever since. Earlier in the year I went a few days without it, just to see if I would have a headache or migraine, and within three days the pain was back. I knew then that I needed this drug!

And all of this was happening while I was studying at college. 

Thanks for reading.

Speak soon,
That ME Girl 


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