Hello everyone & welcome to my blog,
I have set this up to help others in my situation, because at the beginning of my journey, I felt very alone and felt I had no one to talk too. I will just point out that this blog will not be used to name any drs or neuros or hospitals that I was/am being treated by/at. So I'll start from the very beginning...
My name is Leanne & I'm 26 years old. It was July 2012 & I was working full time and thoroughly enjoying my job. My parents had recently gone their own ways and the family home had been sold and we had all moved. So when I started getting hurrendous headaches/head pain, I put it down to stress and being over tired. I was being sent home from work because I couldn't focus on the computer and I was getting nausea/sickness with it too.
You might question why it took me a month or so, to see my gp. The reasons are as above & I had been given antibiotics to see if it was a sinus infection...I can honestly say they didn't do anything! It was only when I went into work one morning, that my colleagues knew that I needed to see a gp. I called and got an emergency appt and my colleague from work drove me there. Once at the gp, you might call this fate, but I saw a gp who I had never seen before and never saw again...but he gave a potential diagnosis of cluster headaches and referred me to a neurologist. I think I gave my mum a slight panic that evening, she was away on holiday and I sent a text saying I was being referred to a neuro...not a good idea when your mum is in a foreign country and can't do anything lol!
August & September passed by and the headaches/head pain was getting more and more frequent. I was muddling my way through but it was becoming more and more apparent that I couldn't carry on at work anymore. We had moved house by this point and I was registered with a new gp. Luckily for me, I had stumbled upon the most caring and kind gp and I sat and cried in his office while I tried to explain everything. By this time I was resigned to the fact that I needed to take some time off work, but I wanted to hear what the neuro had to say before I made such a decision. I had managed to get an appt for 1st october with the neuro at the hospital near us, so I was counting down the days & weeks.
So..1st October 2012, my appt was at 9am so me being me, I was there early. Eventually I was seen by the neuro, he gave me a potential diagnosis of benign intracranial hypertension. I had no idea what this meant, but he sent me away having told me that he could see swelling behind my eyes - dunno about you but I panicked when he said that. I was due at work after and it was just around the corner, so I drove to work and promptly burst into tears when I got to the office. This was the final straw for me and I knew I needed to take some time off. I called my gp and got an appt for the next day and was signed off for a month or so.
I can honestly tell you that I was so depressed by this point but I muddled through. My neuro had sent a referral to the specialist neuro hospital and at the end of october, I had an MRI scan and a lumbar puncture. I remember that day like it was yesterday, one of my best friends came with me cause I was a bag of nerves. An MRI is necessary with a diagnosis of intracranial hypertension as the condition mimics a brain tumour. So I had the scan and was sent back to the waiting room. The 20 mins between getting back to the waiting room and getting the results of the scan, felt like an absolute lifetime. Eventually the dr came round and said the scan was fine so they did a lumbar puncture to measure the pressure around my brain. Can honestly say that it was a horrible experience but they become a common occurrence. An hour of laying flat later, I was sent home to recover.
Unfortunately for me, I was sent home with no pain relief so I spent the next few weeks trying to get hold of my neuro. I was taking paracetamol & cocodamol like it was going out of fashion. I have since discovered that normally a neuro will give you pain relief on the day of your first lp. So I eventually saw my neuro at the end of november and given some medication (topiramate or otherwise known as topamax) to try.
So december rolled around and I was getting bored at home. I asked my gp to give me a medical certificate so I could do a gradual return at work. It was the couple of weeks over xmas and new year. It was evident, very quickly, that the pain was defeating me yet again. So on new years eve, I was signed back off work.
A week into the new year, I was back at the hospital having another lumbar puncture. It confirmed that my pressure was increased and the topiramate dose was increased. I spent much of January faffing around with the hospital to try and get some more pain relief but it was at this point, that I had had enough of arguing with them. I wasn't sleeping because of the pain and I was horribly depressed. So I went back to my gp who gave me amitriptyline, it has helped me get some much needed sleep over the last 12 months. At this point, I was considering all sorts of stupid options to end the pain so my dr referred me to a pain management team. sadly, my appt took until september but as u will see later, i am in a much better place now and didn't really feel the need but i went anyway..it would be useful if you are in a bad place!
It was fast becoming obvious that I needed to change neuros/hospital. So my parents took me to see a neuro at a london hospital and that was the best thing that could ever have happened. The following day I went to my gp and arranged a referral to the neuro onto the nhs. He wanted to do further tests in hospital (icp bolt and lumbar drain). The following months were an absolute nightmare, the pain was getting so bad and my referral was lost a couple of times. Eventually I got an appt and in August of 2013, I went to my appt. My new consultant confirmed what treatment he wanted to do (as above) and I went away feeling like everything was going in the right direction.
In september of 2013, I was admitted into the hospital for the tests that were so necessary. The icp bolt was done under local anesthetic and stayed in for 5 days. This confirmed that my pressure was far too high, so my neuro decided to do the lumbar drain. This was useful and confirmed what my neuro thought. After discussions with him and my parents, it was decided that a vp shunt would be inserted, but not on this admission. After 10 long days, I was discharged and sent home to recover properly. There is nothing like your own bed to recover in and within a few days, I was feeling well enough to go out for a while.
Before I left the hospital, I spoke with my neuro, who said that because of the shunt op required, I would lose a lot of my hair. So I realised that I could make something good of a bad situation. I set up a justgiving page and on october 5th, I had my hair shaved off for charity. The current total stands at roughly £1470 and the amazing support from everyone has been absolutely amazing. I asked the charity to do a press release for me and my story has been published by a local paper...
http://www.worthingherald.co.uk/news/regional/woman-loses-her-locks-for-hospice-1-5567564
I am currently waiting for another paper to publish it next week, so will post the link when they do. This was the best thing I could ever have done because it has made me feel so much better about the up-coming op. I am currently waiting for a date for admission so will keep you all posted.
What I have failed to mention in all of this is, I found an amazing support group on facebook called IIH Support UK. I have met the most amazing people and friends through all of this madness and would be utterly lost without any of them. They have got me through every single day and they mean the world to me. They say there is a silver lining in everything...I have to agree!
I can honestly say that I have come out of the depression and I am working 2 afternoons a week currently. My work have been nothing short of amazing & so incredibly supportive. I know how lucky I am to be in a job that I love and also for them to want to help at every single part of the journey. I am so grateful to them and so grateful to all of my friends who have supported me so far. It's true what they say about finding out who ur true friends are of times of need. I have lost some friends but have gained some even more amazing friends & would be absolutely lost without them.
You see, the journey with IIH is incredibly hard but there are always people out there who care. What I would say is, if you have family & friends who are trying to help, don't push them away. I was a nightmare to live with for the first 6 months of my diagnosis. Now I have accepted what is going to happen, I can mentally deal with it and you learn to live with the pain eventually. IIH is a condition most will not have heard of but my true friends, my family & my new friends have been so amazing in helping me with everything. I shut myself in my room for months on end when this started..people will say to u to go out etc but only u know how u feel. Someone told me that we own the pain, the pain does not own us...and I can see that now, it's hard to start with but day by day, week by week, month by month, things become easier mentally.
I will update this again once I know when my surgery is and when I'm having it done. If you want someone to talk too, my email add is missleannebarnard1987@gmail.com . If you're reading this and your journey is only just starting, don't panic, there is always someone to help u through the hard times. xx
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