woohoo!!!

yesterday went better than expected :-D the sleep people have given me the go ahead to have my op woooo!! So seeing my consultant on the 16th and hopefully, fingers crossed, surgery will be before xmas :-D would be so amazing to start the new year with surgery behind me & hopefully get my life back on track!

Sleeeeeppppp

So shrek (my sleep mask) and I, have been getting on a lot better these days. I'm on the train to london now to see the sleep people & praying that they give me good news so I can have my op. Keep ur fingers crossed pretty please :-) I'm sitting on the floor coz there's no seats..so skanky haha!!

News just in...

The hospital called me today & I'm off to see my neuro on november 16th :-) this is progress woo!! Seeing the sleep specialists tomorrow so hopefully things will move forward now :-)

The morning after...

Well, the storm well and truly arrived in style last night. Luckily, this morning, there is very minimal damage and the sun is out now..still a bit windy but nothing compared to last night.

So, all's well that ends well :-)

Is it or is it not??

So there has been major hype about this storm that is approaching and gonna "batter" the south coast. So far, its quite windy and raining..apparently the worst is yet to come! Midnight is sposed to be when it "touches down" here. my head knows its coming, but im snuggled up in my lounge, in my onesie, in front of the fire...cant ask for more than that on a night like this :-) xx

Battening down the hatches

So today has been a bad head day...and to make things worse, this mahousive storm is due in the next 24 hrs. seems they want us to baton down the hatches, so I'm fully stocked up and planning a quiet couple of days!! See y'all on the flip side ;-)

Last night..

Well I went to my gp yesterday, who is the kindest, most caring gp ever!! I asked for something to help me sleep as my amitriptyline had stopped being so effective..so he gave me something else to take with it! Well...it did the trick coz not only did I sleep all night, my sleep mask stayed on all night too :-)

I've got a bad head today but yesterday I treated myself to some cross stitch stuff so I know wot I'm doing this week :-D

xx

Friday afternoon...

Well quite a lot has happened in the last few days..

I've been in contact with my neuro and my sleep apnea has to be as best as it can be before they do the shunt surgery. So shrek & I (shrek is the mask) - we are trying to work out this sleep thing. But the good news is, shunt surgery will happen. The bad news is, I don't know when it will be.

Also, one of my friends suggested I try cross stitching. Well, I am really enjoying it & its very relaxing!

So..just goes to show, if you find something you can enjoy, it can help take ur mind off the pain :-)

Just random...

This weekend has been eventful to say the least & I'm being a rebel tonight and sleeping without the mask ;-) it's so late so just a quick post. Night folks xx

3.15 Saturday morning update

Ok so things are going from bad to worse with this mask..its 3.15am and I cannot sleep. It's ridiculous how they can expect anyone to sleep with one of these on!!

So last night I went to my best friends dads wedding reception..the newly married couple looked amazing & it was a lovely evening :-)

I had a call from my local paper the other day..they are hopefully gonna publish my story in the next week..exciting!

anyway, I'm gonna see if I can get some sleep. Night folks xx

Night 1 of the mask...

So last night was eventful with the sleep mask and cpap machine. I fell asleep about midnight and woke up at 4am...the mask was off and on my bedside table!?! How does that even work?? I didn't know I had taken it off in my sleep! So I put it back on and got a couple more hrs sleep.

Feel very emotional - yesterday was an awful day. I just want to have this surgery and get my life back, seems my iih has other ideas :-(

One day at a time and all that..I've found something to keep my mind occupied for the next couple of weeks. I have to go bk to the hospital in 2 weeks to see how I'm getting on with the mask.

Anyway...time to disappear for the afternoon. xx

Another day, another appt...

So, I'm off to see the sleep specialists in london today. Hope they give me some sort of answers so I can get the surgery booked in. Will report back later x

Woohoo..I made it. First time I've been to an appt by myself. Got half hr to kill. You soon learn to get to appts early in case u can be seen early! x

Well I was seen early & not exactly had the news I wanted. Fed up doesn't even cover it right now. I'm off to raid the goody cupboard and see wot I can find. x

One of those days...

I can't even think straight the pain is so bad today. It's 12.30 and I'm still in my pjs...I know I need to get up but I feel awful. Think this describes it perfectly...

  
Hot bath is beckoning...xx

just another monday...

So, I didn't sleep very well last night, the pain has escalated in the last 24 hrs.I can normally find a way of dealing with it, but when the pain management isn't working & lack of sleep kicks in, it's not pretty. Dunno about you, but I could quite happily climb back into bed and hide from the world...if only eh! I have things to do today so for now, I will say goodbye & happy monday to u all xx

A rainy sunday

You know it's one of them days when you sit and type and delete several times over.

If I had a £1 for every time that someone said to me there are always people worse off than me, I would be a millionaire by now. I know it's true, but sometimes you need a day to just feel rubbish & have a good cry.

Days like today when the pain is really bad, I try and find things to occupy my mind with, doing some house work, listening to some music, snuggling up under the duvet with my favourite cheesy movie or talking to the iih crew.

The friends you make become friends for life. The turning point for me, knowing I wasn't alone, knowing that I had someone to turn too, was going to the annual iih agm. I finally got to meet a lot of the amazing people I had got talking too on the support group. That weekend was the best weekend I had had in such a long time. Definitely something that will become an annual thing for me :-). I came back with a renewed sense of life & that I wasn't alone & having made friends for life.

Friends & family are essential, without my friends & family, I wouldn't have been able to dig myself out of the depression by myself. There will always be days where you just want to hide away from everyone. I have plenty of them, but if you let iih become your life, it will get the better of you & you need to control it.

I've just stuck my onesie on & gonna curl up with a hot choccy, shut out the horrible weather...tomorrow is a new day as they say :-) xx

just another day :-)

Wow...never in my wildest dreams did I ever expect to reach such an amazing figure for my charity fundraising. Can't begin to explain how incredible it feels & also, it feels so liberating to have no hair. Everyone has been so supportive and I am so so proud of what we have all done! So..I guess I should tell you how much we have raised so far...

 £1500!!!!!!!

I'm so so proud & also, yesterday, I had a certificate from the Little Princess Trust to say thank you for my hair donation. This has been so amazing doing this & my local paper are printing my story this week coming...so exciting! 

I'm not having such a good day with the pain today, but you learn to live with it..everyone has a life to live and I still struggle to go out at times. I am only 14 months into my journey but you learn your limitations as you go along, some, you will find quickly, others will take time. The sun is out today, which makes the day seem a little easier. Everyone has good & bad days...I have found music that has helped me, lyrics that associate to how you feel on certain days. 

This t-shirt arrived for me in the post today..love my iih family :)

Introduction to me & IIH

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