Same sh*t, different day

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”.

Never a dull moment

Last week I failed to produce a blog post as I had been completely wiped out due to a vomiting bug. That wasn’t the whole story but at the time I didn’t have the energy to explain further and I start to feel like my life is an episode from a medical drama. I wonder if people actually believe what I write or think that I just make all this shit up?


I have to say years ago if someone had told me all this medical bad luck would descend on one person, it would have received a raised eyebrow and a wry smile, with Klaxons sounding warning of an attention seeker. It is amazing how your attitudes towards chronic illness and medical problems can change when it is all happening to you.


I wrote in my blog post  “Excuse me whilst I sob quietly in the corner” click here about how bad my head and neck pain was, it took a turn for the worse last Thursday. I had woken up at 3am and the minute I sat upright the throbbing in the base of my skull and in my forehead started. I knew within seconds of sitting up I was in for a crap day. I could have never of imagined how crap. As hubby was up he helped me downstairs, whilst he took care of the dogs, I sat clutching my forehead not able to fully comprehend how bloody awful the pain was becoming. Normally hubby and I would sit and catch up on some TV together after he had walked the dogs at silly o’clock in the morning. That morning though I went back to bed in the hope that relaxing and having some more sleep would stop the head pain. I took some oramorph and went back to sleep.


My plan of waking up pain-free didn’t work, whilst lying flat I was relatively pain-free but on becoming upright my head began to feel like I it was going to explode. With every beat of my heart the pain pulsed through my head. I did what I always do and tried to ignore it and soldier on. I didn’t want  Jay to realise how bad things were as he was going to work and wouldn’t be home for a while. I don’t like sending him off to work stressed and my plan was as soon as he left for work I would crawl back to bed. I held it together for an hour, the whole time the pain was increasing. Every time I sat up or tried to stand the pain escalated to the point that without thinking I was holding my head in my hands.


By the time he left I couldn’t make it upstairs, so I lay on the sofa hoping that the pain in my head would subside. Stranded for several hours on the sofa my head did indeed lessen up a bit, so I decided to try to get up to bed. On standing my legs turned to jelly and the pain came back like I had been hit on the head with a shovel. Such was the intensity of the pain that my legs gave way and I hit the deck. Hubby had been in work 2 hours and now I was having to call him home. Something I am always loath to do unless it is a dire emergency. Thankfully he had the good sense to ring our doctors surgery and request a home visit before he had left the building. I rang my parents to explain to them that I thought I may need to be in hospital, something was terribly wrong and if I did go in could they come up.


Within an hour my own gp had rung me to find out what was happening concerned that it maybe meningitis. Although I was hot I didn’t have a temperature so meningitis was ruled out and he informed me he would be out to see me at lunch time. The rest of the morning up until his visit is a bit of a blur. I spent it sleeping, lying flat was the only way I could reduce the head and neck pain enough to make it bearable.


The next few hours before my gp arrived are a bit of a blur, I slept a lot. My head pounded every time I tried to lift my head from the pillow. I tried lying completely flat without a pillow but it made no difference. Lying down stopped the pain throbbing around my head with every beat of my heart, so it took the edge off a bit.


The gp arrived at around 2:30pm and due to lying flat the pain had eased considerably so I felt a bit of a fraud having a home visit. Despite the fact that I still couldn’t sit up without pain. I have no idea what PoTs was doing because on sitting up the pain in my head and neck was all-consuming.

We chatted about the pain, I was still convinced at this point that the pain was coming from a herniated disc, even though I was still comparing the pain to the post lumbar puncture headache I suffered in either 2009 or 2010. My gp took some bloods which was incredibly brave of him as everyone at the practice knows how bloody awful my veins are. He was under even more pressure as he only had one needle with him. Despite of all the pain he still managed to make me laugh, when he couldn’t find his tourniquet. The conversation went like this

GP “ I can’t find my tourniquet”

Me “ would a pair of tights do?”

GP “ I am not wearing any today”

At this point I was gasping for breath because I was laughing so hard. I replied

“I forgot it’s not dress down Friday”

Now both of us were giggling like a couple of idiots.


My gp got the blood first time mainly because he listened to me when I told him to avoid the crook of my arm and go for the back of the hand. The blood tests were to check my sodium levels. I drink litres and litres a day, around 7 or 8 a day as since I was born I have suffered with excessive thirst (polydipsia). I am on slow release sodium tablets 6 a day, plus the salt I add-on my food. Low sodium could be causing me to have low CSF pressure. Due to the headache my gp was convinced it was down to my CSF pressure, the give away was the fact that the pain was increasing on sitting and standing.


My gp wouldn’t be drawn on what was causing my low CSF pressure on Thursday but when I had to get my blood test results on Monday, he told me that he had been in contact with my consultant and they both believed that I was suffering from a CSF leak. I have to increase my salt tablets to 8 a day, there was a suggestion to increase my fluids but when I reminded my gp of my excessive fluid consumption, we both decided that it wasn’t necessary. He then informed me that should this not improve things in the next few days the next step would be an epidural blood patch. More information on Epidural Blood Patches can be found here


It has taken me days to get over Thursday, I am still struggling with sitting up for more than two hours, I am spending the majority of my time either in bed or lying down on the sofa. It is the only way to prevent the pain from over taking me as it can’t be controlled with painkillers. Nothing stops or reduces the pain. I am utterly exhausted all the time.

My mood on Friday was low as I just felt “what the fuck else is going to be thrown at me?” It all felt too much, I am ok now it was just an understandable wobble. It is no wonder I have been feeling so ill since the end of January when these symptoms first came on.
For more information on CSF leaks please  click here

I am also celebrating this week as this is my 300th Blog Post.