My struggle with Intracranial Hypertension
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I grew up all of my life suffering from headaches/migraines, pain. When I was younger my mum put it down to my hair being up to tight or it being too thick. By age 9 I needed glasses. By age 11, I became quite unwell, I couldn't have any light, my head was excruciating, I was vomiting and my neck was so stiff I couldn't bend it. The dr sent me straight to ED as he believed I had meningitis, a lumbar puncture was done and my fluid was clear of any disease at this stage no one checked what the pressure reading was and after the procedure I was no longer in pain so sent home.
Fast forward 12 years to July 2012 over the next month my health rapidly declines and my pain in my head is so horrific I don't know what else to do but to go to the ED. They did a lumbar puncture believing it was meningitis but csf was clear and they put me on endep saying I just had migraines. The released me a few hours later again no csf pressure reading and they didn't check my eyes. At the start of September I traveled for an event while away I got really sick and was rushed to hospital, the dr believed I had pneumonia and clots on my lung as my bloods on the clot indicator were quite abnormally high. They sent me for the special scan with radiation but my lungs were clear and no further testing was done. I was there a week as my oxygen levels were too low to fly home.
By the end of September I could no longer get out of bed and do normal daily tasks, the pain I was living in was 10/10. I had been back and forth to the gp and hospital with no success in anyone listening to me.
The start of October I was weak and could no longer keep anything down. My husband drove me to the doctor as I no longer could, it was a massive effort to even be able to walk. I told them what was going on, they told me I had gastro and that I just needed hydralite. The next few days my vision started going funny, I was seeing double and the all of a sudden I couldn't see anything out of my right eye. By this stage I was upset because I knew something was wrong and no one had listened to me. My partner drove me to hospital, this time I demanded to be listened to and that I wasn't here for drugs and wasn't leaving without answers. I got an amazing dr that night who listened to everything I had to say. She checked my eyes and freaked out as I had such a severe case of papillodema. She sent me straight away for further testing and scans. Ophthalmology were shocked by the degree my papillodema had gotten to and were unsure I'd get full vision back. In my visual fields test I was 90% unable to see anything with my right eye. My MRI came back and showed a substantial sized clot on my brain, trapped between two ventricles. My csf pressure reading came back at 46cms of fluid. It was then confirmed that I had IH and that I would be flown to another city to have an Lp shunt inserted.
My partner and I moved to Melbourne in December of 2012 and by January 2013 I was back in hospital with all the same symptoms. My shunt had shattered and they put in another. This happened again in March 2013 resulting in another shunt revision.
Since July of 2012 I have lived every day up until April of 2017 in excruciating pain, nothing was working, no pain relief or medication combo. I couldn't bend over or stand up without causing excruciating blackout pain. For those 5 years I felt I lived at hospital on lignocaine and ketamine infusions. In February of 2017 I was in hospital for the 7th time since the birth of my son in August 2016.
At this point in time I was over everything and I had hit my lowest point in life, I was so hard to cannulate that they ended up going with a pic line to do the infusion and for future infusions. I was in for three weeks with the pain not breaking, the pun specialist tried lignocaine injections straight into the nerves of my skull to see if that reduced it but it did not, I had my most recent MRI and it was noted that there was no longer a clot visible in my brain either.
While I was there I started struggling to breathe, my blood pressure was through the roof and uncontrollable and so was my heart rate. When I questioned the drs they said it was just because I was in pain. I knew something wasn't right but again I was ignored and no one wanted to listen to what I was trying to say. By the end of the three weeks I was discharged 2 days later I had excruciating pain down my left arm and it was really really red. I went to my gp and explained everything and he told me it sounded like a clot from the pic line and to go back to hospital. Turns out he was right not only was it a clot but it went the entire way from where it entered to 52cms long and fed straight into my left lung. I was put into warfarin and clexane and will be on it the rest of my life as my body goes straight back to clotting when off the meds.
I got out and by April knew I had to change something if I wanted to be involved in my children's lives. I gave up carbs and sugar and I swear it was the best thing I've ever done. I believe with the clot in my brain finally dissolving and changing my lifestyle I can confidently say that I am after living a life with chronic debilitating pain finally pain free! It's still early days but I believe that this is the start of my recovery back to health and redefining the system and going against the odds.
If anyone can do it, it's you.
@fatgirlfittt
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