Hi guys, Prepare for an essay!
I'm a university student and over my exams at the end of may I had some pain in my neck. This pain got increasingly worse and was relieved when I was lying down, I was then diagnosed by my doctor with a trapped nerve and sent home. The pain then got worse and felt like the base of my skull was swollen and my head was being tugged back everytime I sat/stood up, the pain had gotten so bad that anytime I was in a position other than horizontal I was vomiting, I was then referred to a headache specialist and put onto the highest dose of epilepsy tablets that were supposed to prevent migraines (which I was previously prone to), I also took very strong pain killers. I was then sent home, I was then in so much pain even lying that I was constantly vomiting. It got to the stage where I was vomiting nothing but blood, my friends said it looked like something out of a horror film! I visited the doctor many times after this and was rushed into resuss/major and A&E 4 times... each time they sent me home for bed rest and said I had a headache. I had been tested for Lymes disease, HIV and numerous blood tests but yet to have a single test on my head. I finally got sent for an Mri but this came back normal, it got to the stage where I couldn't even move an inch for pain and vomiting and I hadn't eaten or drank in days. My dad had had enough and said I had to go to the doctors again, I couldn't move so he had to dress me (a new low point for an independent 20 year old women) and I managed to get to the doctors vomiting around 10 times on the 5 minute car journey there. I had to see a temp doctor as my regular doctor was on holiday, she instantly rang the hospital and booked me a bed... something my own doctor should have done 4 months ago! Once I got to hospital I was put into infection control as I was still vomiting and they took blood samples for tests, I was the told again that I was going to be sent home with pain killers as it seemed I didn't have meningitis. My dad at this stage said he would not take me home and that I was staying until I was better (from an incredibly shy parent I could he ment business!), my blood results finally came back and showed that I was incredibly dehydrated and had liver abnormalities and so had to be kept in to be treated for this, phew. The next day I got to speak to my neurologist for the first time, he asked me a few questions and then exclaimed 'why are you just being treated here? You haven't been able to stand for almost 5 months? That isn't normal you should have been in here straight away! You won't be leaving until you are better.' I can't stress how amazing those 8 little words were to hear. 'You won't be leaving until you are better' Finally!!! I was then pumped full of fluids and the next day they performed a lumbar puncture, I was already feeling a little better by this point and could begin to move my head and had a belly full of food which makes everything seem better! Now, being needle phobic and already feeling like the world was going to end having a cannula I think it's fair to say the lumbar puncture was not my idea of fun, but if it would make me better I'd do anything! They caught a nerve on the way in and it HURT but after a few seconds it had stopped again, whilst she was tapping the fluid out I asked her, 'is the pressure high like you thought?' she replied, 'no... it's actually one of the lowest I've ever seen.' It then took about 15 minutes to get enough fluid for a sample as the pressure was so low. After looking at my results a few days later my neurologist then came to tell me that I had an incredibly low opening pressure and that I had blood in my CSF and he believed that I had a spontaneous CSF leak, finally a diagnosis! I was then kept in hospital with complete bed rest and being pumped full of fluids for a few days and was feeling like new again! Although I must admit after being moved from my own room in infection control to the Acute neurology ward and having the women next to me loudly and painfully die the first night whilst another patient ran around screaming, I couldn't wait to get home! A few days bed rest and I was able to stand again! I managed to get extraordinary university exams and passed them allowing me to return to uni and carry on as normal or so I thought... I made the first week of lectures and haven't been able to attend since. After days in bed without eating I realised it was time to return home so my father could look after me once again... I've had 2 more Mri's, with and without contrast both showing a healthy brain and nothing else. I am now awaiting a standing Mri, lumbar puncture and my first blood patch procedure which is taking incredibly long to arrange as my neurologist says he needs to find someone capable of doing it as he knows none of the neurologists do :/
Tbh I should of written on this page months ago for support as I have really struggled with accepting I have this condition, being an independent highly social 20 year old who's stuck in bed being nursed by her father for 6 months wasn't what I had planned for the year.
I'm really relying on this blood patch working but as not even my neurologist seems to know of my condition it's hard to feel confident about anything anymore... I just want to be me again.
I'm just looking for any advice or experiences people have had with anything similar and how they have coped.
Thank you.