I have always said that I couldn’t do 2016 ever again, in fact 2016 was such a nightmare that throughout 2017, when I referred to last year I was referring to 2015. For those of you who are new to the blog, I will give you a very brief recap. In 2016 I started getting what I thought were migraines, only these migraines disappeared within 30-60 minutes of lying down, only to reappear on standing or sitting. They were very painful, my eyes became incredibly sensitive to light. At the end of March, beginning of April I collapsed whilst taking a shower. My husband called the doctors surgery and asked for a home visit. Within the space of a few hours, I was diagnosed with a cerebral spinal fluid leak. I spent much of 2016 on my back and every 4 weeks having caffeine infusions at a hospital an hour away. 2016 was thoroughly miserable.
I was however one of the lucky ones, despite suffering some truly awful times in 2016 in the December of that year my leak healed. My symptoms never completely disappeared, I was left with tinnitus, every so often I would get occipital neuralgia pains in the back of my head, once in a blue moon on standing I would get a head pain but really life was pretty good. My leak symptoms had reduced to the point where I could be out of bed / sat up for hours rather than minutes. By the evenings initially I would get a positional headache which meant I had to lie flat but I had a large chunk of my life back. In the back of my mind I always knew there was a high probability that this could come back. I was very careful, twisting, bending basically anything that could blow the seal on my almost healed leak. I did everything I could to ensure it didn’t come back but sometimes it doesn’t matter how much you do, a set of circumstances are played out for which you have zero control.
On Sunday we (Mr Myasthenia Kid and I) went out for a drive. I needed to get out of the house as I was going stir crazy and the dogs needed a walk. I would sit and admire the view whilst Jay walked the mutts. On our way to the walk, on a single track road going no faster than about 25-30 mph due to twists and turns / few passing spaces, up ahead of us a dog ran out of the bushes at the side of the road. Jay did an emergency stop, we didn’t hit the dog (for which I am very grateful as that would have upset both of us a great deal). An ashen faced dog owner emerged from the bridle path, apologised, got the dog under control and we thought no more of it…..well not for about 10 minutes anyway,
Although we had been going at a low speed and stopped quickly it was enough for me to be thrown forward and back, despite having my seat belt on. For us bendies sudden movements like this can do quite a bit of damage. Whilst waiting for hubby to return with the dogs my back started to hurt and so did my head. The pain was at the base of my skull and top of my head. I knew immediately this was just like a leak headache, I panicked and sat there counting down the minutes until Jay got back to the car. When we got home I told Jay I needed to lie down as I had a headache. At this point I was hoping that it would settle, that I was just sore from the emergency stop. I put the TV on as I wanted something to distract me, but the light from the TV hurt my eyes. So I put my sunglasses on, in an already darkened room- blackout blind was drawn and all lights were off. After a few hours my head stopped hurting and I went downstairs. After a few hours my head started hurting again, so I had an early night. I hoped that tomorrow (Monday) it would be better.
On rising on Monday, my head hurt a little but it was nothing like the pain I had in 2016 the morning I collapsed. It hurt and was noticeable but there was stuff I wanted to do so I put it to the back of my mind. However by 2pm I couldn’t ignore the pain any longer, 2 expresso’s had done nothing. I went back to bed and again needed sunglasses to watch the TV and use my phone so that the light didn’t hurt my eyes. After lying down for 3 hours my head felt ok, it was a bit twingey but nothing major. I hoped that whatever it was causing the pain would settle. However when I messaged Jay that I needed some caffeine energy drinks, he asked straight away if the leak was back. Even though this was all done by text I knew the panic he was feeling because I was feeling it too.
By Tuesday, ten minutes after getting up I had to lie down again. I have to stress it is nowhere near the level of pain I was in before in 2016. I just know that it’s better to lie down than be a hero and wait for it to be sheer agony. Jay rang the doctors surgery at 9.30am, asking for a home visit. I know many of you will not have this available to you where you live. I am eternally grateful that I still have this service as there was no way I could have sat in a waiting room with a head wanting to explode. I lay in bed all morning, unwashed but it clean pjs. Greasy haired and looking like Casper the friendly ghost. My back was being uncooperative, it doesn’t like me being immobile. I moved into every position I could that kept my head as flat as possible. My back was playing hardball, it’s been sore since Sunday, which isn’t that surprising.
When I first got diagnosed with a CSF leak it was my old wonderful gp, who has moved away and left the practice. I was concerned as to who I was going to see today because I have found none of them to be as clued up or as willing to learn as he was. I was visited by my new gp who I have met on a couple of occasions. The appointment or whatever you call a home visit was fine. I did however have to convince the gp that this was not whiplash – which would be a perfectly acceptable diagnosis if I was displaying signs of whiplash – which I am not. My neck isn’t sore, I have altered sensation in the right side of my face a bit numb along with pins and needles and I have a headache that becomes more intense the longer I am upright. I feel ok lying down – although all screen use requires sunglasses as I have photophobia. I ended up saying to her, I would love this to be nothing more than a case of whiplash, that would be the perfect diagnosis because it would mean I won’t be spending day after day flat on my back. But I said this isn’t whiplash, this is a return of my leak. I told her I am treating it myself at the moment – my salt tablets were increased to ten a day last week to cope with the heat, that is the same dose I was on last year. I am drinking coffee and energy drinks like they are going out of fashion. I am hoping conservative non – invasive treatment will be enough to get me through this. I don’t want a repeat of 2016.
It became clear whilst talking to this doctor she wasn’t very clued up on spontaneous CSF leaks or EDS. It’s such a shame that ignorant doctors try to tell you that they know best without educating themselves first. She trotted out that blood patches don’t work………..I couldn’t be bothered to argue with her but they work for around 80-90% of people first time around. She didn’t believe that EDS alone could be the cause of a spontaneous leak……..I think my last copy of Fragile links that had about CSF leaks in it will be making its way to the surgery, along with all my CSF leak handouts from the UK charity the CSF Leak Association ( which you can find here https://www.csfleak.info/).
However I am happy that she is referring me back to the neurologist that treated me last time. How long I will have to wait before I get to see him is anyone’s guess. At the moment I am hoping that the pain levels stay as they are and don’t increase, as no pain relief helps the pain a leak causes. The only thing that helps is lying down…..which would be fine if my back wasn’t such a mess and hated lying down longer than a few hours at a stretch. I have made it downstairs late this afternoon and I am lying on the sofa to give myself a change in surfaces – to keep the old back happy!