It currently feels like I am stuck in a vicious cycle. I lie down I feel ok, so that makes me feel like a fraud. I get up within 30-60 minutes the pain starts and I end up lying back down again. It takes several hours of lying down for the pain to subside, the longer I lie down the better I feel and the more my lower back hates me.
I have managed to go out for a trip in the car for 30 minutes as I was starting to go stir crazy. Again this makes me feel like a fraud, as there are many people locally that read this blog and probably don’t understand what is going on with me, they can be very quick to judge unfortunately.
I have tried to explain to people what is going on but it is complicated for the layman to understand and I appreciate that. Many people won’t admit when you try to explain it that they have no clue what CSF is, so the explanation is immediately lost on them. Also people assume that this will get better by itself, there is a remote possibility that this could happen but it would take at least 8 weeks of complete bed rest for this to happen. The way my head / neck feel I don’t know if I could cope with 8 weeks of bed rest, plus my lower back would never put up with it.
I know people mean well, when they say “get well soon”, they really want it to happen, I want it to happen. However I feel like I am trapped in medical limbo whilst people who have no clue decide what is the best way forward. Whilst I am waiting and there is no change in my condition I feel I am supposed to just shut up and put up. I don’t want to be accused of moaning about it.
There are those who also like to minimise what you are going through, I have had this before when I first got sick in 2007, when someone helpfully told me “at least it’s not terminal”. As if because I wasn’t dying I wasn’t allowed to be ill or in pain. I was told by one person that they too “had a headache”, whilst headaches can be terrible things and very debilitating a headache is not a migraine and a migraine is not a low pressure headache. Anyone who has suffered a low pressure headache after a lumbar puncture or a CSF leak will tell you there is no pain like it. In 2009 (I checked my medical records as I was curious as to when I had my LP) I can remember lying flat in bed and starting to cry. Jay asked me what was wrong and I told him I was crying because I needed a wee. The thought of getting up and my head feeling like it was going to explode was enough to make me start crying. I will always remember the pain I was in it was agony and no pain relief touched it.
For the last 10 days I have been taking 8 salt tablets a day in the hope the extra salt will stimulate the production of CSF. It has had no effect other than to make me put on a couple of pounds in fluid retention and increase my already excessive thirst. I am ringing my gp today (Weds) and letting him know that it has made no difference. I have ordered myself an abdominal binder to see if this helps at all. I joined a CSF Leak group on Facebook and some of the members had, had good results with a binder. However it is dependent on where the leak is.
One weird thing I have noticed is that when the pain is bad my right eye seems to tear up constantly. I will be honest and say I am clueless as to what is causing this. Also before the pain really gets bad, I get a continual taste of salt / yuckiness. It is not enough to cough up or a feeling of a drip or something running down my throat it just seems to hit the back right hand side of my tongue. It really is grim and the only way to get rid of it is to continually eat or drink.
So that is the state of play at the moment, I am no further forward, things are just the same. “Same Sh*t, different day”.