My Psuedotumor Cerebri Story

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If you’ve read a few of my other posts then you will know that I battle with a few chronic illnesses.  However, I haven’t really elaborated in those previous posts about those illnesses.  So today I’m going to share one of my chronic illness stories with you.  Ladies and gents grab a drink and a seat cause this may be a bit of a lengthy one lol.

Before I go any further with this post I would like to insert a little disclaimer:

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**I am not a medical nurse or physician, nor do I have any more medical knowledge of this illness than my own personal experience and what I have learned from my own doctors and tons of personal research.  Everything that you will read in this post are things that I personally have experienced (i.e symptoms, medications, hospitalizations, procedures, etc..)  If for any reason you think that you or someone you know may be suffering from this illness you are more than welcome to ask questions and I’ll be happy to give you a personal experience type answer HOWEVER, it is always best to contact your physician or a medical facility right away if you are experiencing strange symptoms that you classify as abnormal for you.  Again, I am more than happy to help in any way that I can BUT please keep in mind that I am not a medical provider of any type and these are my personal experiences ONLY.**

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One of the chronic illnesses that I battle with on a daily basis is Pseudotumor Cerebri-PTC (aka Benign Idiopathic Intracranial Hypertension-IIH).  If you have never heard of this illness you can find more information here.  I was diagnosed with PTC in May 2015; however, my symptoms started in November 2014.

The weekend prior to the day that my symptoms started I had started a new blood pressure medication called Losartan.  The first few days that I was on the medication I felt fine (started the meds on a Saturday).  Tuesday morning I woke up and felt fine, completely normal.  Went to work, and worked an entire shift.  Got in the car and as I was headed home I suddenly felt faint.  I started seeing black spots in my vision and felt very light-headed.  I immediately pulled over to try to gather myself.  Thinking that possibly my blood sugar levels had dropped once I gathered myself a bit I drove a little ways up the road to grab a candy bar and some apple juice.  I called my husband telling him that something wasn’t right that I didn’t feel like myself.  Because we only have one car, he couldn’t come and pick me up so I had to try to make it home and I had about another 20 mins or so to drive.  After I made it home I sat and rested and still felt quite funny in the head, BUT not as bad.

The next morning I woke up and thought I felt better, got to work and it was a total different story.  I started feeling faint again and kept feeling like my heart was racing and I noticed that I couldn’t walk very far without getting very short of breath.  I couldn’t eat either.  I called my cardiologist because I thought it had to be the medication.  He told me that it wasn’t and to keep taking it.  But because I knew in my heart that it was,  I stopped taking it any way (I had only taken about 4 or 5 doses by this time) and told him that I refused to keep taking it.

3-4 days later I was still feeling awful and my symptoms were only getting worse.  I was starting to have numbness and tingling down the entire left side of my body and felt like I was slurring my speech and I had the worst headache.  And on my left temple it literally felt like there was something moving around in there.  Like a little worm or something.  I thought maybe I was having a stroke or a brain tumor or something.  So my husband took me to the ER.  I was admitted for 3 days and after having a MRI and CT scan come back normal they told me that I was having a  Hemiplegic Migraine.  I was released to go home and was told that I would make “a full recovery”.

Fast forward several weeks.  I had yet to make a “full recovery” and I was having daily migraines and by this point I noticed that my vision was starting to be off a little.  I wasn’t able to focus on small objects.  Having difficulty telling the difference between some colors.  I starting noticing these flashing black and white spots and was feeling pressure behind my eyes.  By now I had seen about 3 different neurologists crying to them telling them that something was seriously wrong.  That I knew my body and that what I was experiencing was not just normal migraines w/ auras.  But no would take me seriously.  I had been in and out of the hospital because there were times I could barely walk because I could barely move my left side or didn’t have enough strength to put one foot in front of the other.  I constantly felt like I had an ice pick drilling through my head and like my head was just filling with fluid…like a water balloon ready to burst.

So one day about 6 months in I went into my original Neurology office for an appointment and he said the magic words ” so how are things going?”  I just burst…all of this emotion came pouring out and I told him I need another MRI or something.  This thing going on with me is more than just migraines and I know it.  I’m going blind and having a lot of daily pain and something is seriously wrong! PLEASE JUST LISTEN AND HELP ME BEFORE ITS TOO LATE.  He looked at me asked me to tell him everything all over again from beginning to end from that day in November.  I broke it all down to him and the first thing he said was PSUEDOTUMOR CEREBRI!  I was so scared because the only part of that that I heard was TUMOR.  Then he broke it down for me.  He told me that I needed to have a spinal tap to check the spinal fluid pressure in skull to see if its higher than normal and that if it was I would need to start treatment immediately since It has already begun to affect my vision.

I was so angry with him but so thankful all at the same time.  I wanted to punch the man for not listening to me for the past 6 months when I kept telling him that something was wrong and not doing this test sooner.  But I was so elated that he was FINALLY listening and doing more for me now.  So 2 days later I returned to the office for my spinal tap.  Once he was able to get to the fluid my pressure was definitely elevated!  Very elevated!!  I began the medication called Diamox that day and have been on it ever since.  My doctor explained to me that the excess fluid surrounding the brain can cause compression on sensory nerves that are in the brain causing the weakness and lack of movement in certain body parts. I finally was able to put some of the pieces together to this gigantic mystery puzzle of mine. 

Currently I am on a very high dose but still battling very high levels of pressure in my skull!  I have residual damage around my optic nerves from the elevated pressure on my optic nerves causing a permanent loss of vision.  My left side is still weak.  Some times weaker than others.  But I try not to let all of this bring me down!

This illness has robbed me of so many thing.  But the most important thing that it has robbed me of is time with my children.  There are days that I am bedridden due to PTC.  When all I want to do is spend time with my family I cant. But I’m grateful for an amazing husband who has stood by my side through all of this and who has held my hand the entire time and very blessed to have the kids that I have that look past mommy’s flaws and only see the loving mommy that I want to see.

I guess the moral of this story is. GO WITH YOUR GUT!  If you feel that something is going on with your health or anything for that matter but someone else keeps telling you different,  BE PERSISTENT!!! DONT BACK DOWN!  Only YOU know your body and only YOU can tell what YOUR normal is and what is not!  If I wasn’t persistent I may be blind today or worse!!

It wasn’t my time to sink and its not yours either











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