Touch Wood

For a while now I have been experiencing a good period with my head pain (caused by a CSF Leak). The last time I ended up completely incapacitated by it was 23rd December (2016), I still have headaches daily but they are much lower down the pain scale and there have only been two days since the 23rd December that I have ended up having to lie down for a few hours.


It scares me to write this as back in the height of summer I also experienced a good period. However the longer the good period went on the more I tried to resume normal life. I pushed it too far and ended up back to being incapacitated through pain, I was devastated. This time I am being much more cautious. I know bending triggers head pain, so I have been trying to limit that as much as possible. There are just so many things that you do without thinking that involve bending it gets very difficult to avoid it altogether.


In the past when I have written about any improvement in my health it always comes back to bite me on the arse. No adhesion pain for a few months, casually mention it in a blog post and then I will spend weeks with an abdomen that hates me. No migraine, the same things happens, so I have been holding off sharing the  news that there is a small possibility that the leak has slowly begun to seal itself without intervention.


EDS makes you a slow healer, wounds that would take a few days in “normal” people to heal can take months. Sprains that would normally resolve in 6 to 8 weeks can take 4 months or more. In August 2006 I sprained my ankle very badly, to the point where an operation to repair the torn ligaments was being mentioned by my physiotherapist. Finally by the December that year I was on the mend but I haven’t been able to wear high heeled shoes since. My ankles have become too weak, block heels can be worn thank goodness as I would hate to only be able to wear flats for the rest of my life!


The normal course of action for a spontaneous leak is several weeks of complete bed rest. I have seen anything from two to eight weeks suggested as conservative treatment. So if my leak is slowly beginning to heal itself, 12 months could be entirely possible because the connective tissue disorder Ehlers Danlos Syndrome (which is entirely the reason why the leak has happened) would cause slower than normal healing. Plus I haven’t spent the last 12 months on strict bedrest, I couldn’t as I would have lost the ability to walk (my leg muscles become very weak with prolonged bedrest) and my back would have never forgiven me.


I know I am far from out of the woods, if the summer taught me anything, it’s that the healing process can be undone in seconds by just moving the wrong way. I know the leak is still active as I still have occipital neuralgia and that will be the last thing to go but the pain from this is much less than it has been. Occipital neuralgia often accompanies a CSF leak as the fluid irritates the nerves. When I look back now I realise that the occipital neuralgia was the first sign of trouble.


Although an epidural blood patch could potentially cure me if I could heal myself and avoid the need for the ebp I would be more than happy. For treatments of a CSF Leak please click on this link

I have stopped having the caffeine infusions as the head pain is manageable. My husband can tell how much I have improved of late as I am not asking him to pick me up high caffeine energy drinks anymore and I am no longer going through three bags of freshly ground coffee a week. We have been able to spend time together and have watched quite a few films in the afternoons when he has been day off. Something that hasn’t happened for a very long time. I am also managing to sit up until 7pm, which has been unheard of for over a year.


I still have photophobia but I am no longer having to wear sunglasses indoors on cloudy days. Car headlights at night still hurt and bright sunny days are a nightmare but considering where I was, it is a massive improvement. I still have headaches but instead of them being an 7 or 8 out of 10 by the end of the day they have dropped to a maximum of 5. I am no longer being incapacitated for days on end. It’s actually quite a strange thing to get used to, after being so ill for a year. Last year felt like my life was just on hold whilst I waited for either my condition to improve or to get the treatment that would probably cure me (the epidural blood patch).


I really hope that this situation continues, that I heal myself and can start enjoying life once again. Obviously I am still limited by my other health conditions but last year made me realise just how lucky I was when things could just be so much worse. Fingers crossed that I don’t manage to dislodge the seal that’s stopping my leak by sneezing, coughing, bending or lifting. So although I can now be upright, I still for the time being am acting like I am made of glass.


I wrote this piece several weeks ago and was too scared to publish it because as I said earlier in my post, when I do post an improvement within 24 hours whatever it was I said had improved will start up again. It’s now March 9th and I still have only had two days where I have had to spend a day lying down since December. I am really hopeful that my leak is almost healed, I haven’t had a caffeine infusion since January nor occipital nerve block injections. I still have to be careful with bending, as that does cause sharp pain in my head. The photophobia is slowly subsiding, I still sometimes have issues with car headlights at night but it’s no longer as if someone is holding a hot poker to the back of my eyes. I have been forced to take it easy due to contracting shingles back in February, my body still hasn’t recovered. I am easily floored by everyday things and it’s quite common for me to have to have a nap in the afternoon. I am also sleeping, some nights over 12 hours. I would love to say I wake up feeling refreshed but I don’t.


So I am hopeful for the first time in ages that I may have finally started to self heal and that this CSF leak will be a thing of the past. Touch Wood!

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