A healthy food & lifestyle blog specifically catering for & dealing with the symptoms & conditions of : Endometriosis, Polycystic Ovarian Syndrome (PCOS) & Intracranial Hypertension (IH).
Looking at healthy food & food alternatives- redesigning classic recipes & new recipes;
Dealing and living with chronic health conditions on a daily basis- & research about the conditions;
Alternative therapies & remedies, gardening, arts & crafts...
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Monday, 8 October 2012

What the @$#% happened to September...

The month of September came and went for me like a blip in the time of space. I pretty much spent most of the month in hospital, and the rest of the month and now this month recovery…
So what the @$#% happened??
Well on the afternoon of Monday 03/09 I was driving home after meeting with a potential Body Shop Party Host and while driving home I started to become agitated, confused, unable to focus on the road and I could smell whisky.
I got home I came upstairs and tried to just slow down, control my breath, bring my pulse down and focus on some music, but I could tell something was wrong.
Next I was trying to run to the bathroom to vomit. I threw my guts up and called out to M., luckily he was working from home that day!
I tried to stand up and walk to the bed but couldn’t, I kept falling to the left. I lay down, M. ran downstairs grabbed me some icepacks, and some pain killers. I tried to calm myself and rationally think my way of getting sicker, just taking it easy and slowing my pulse. But try as I might it just got worse, my head was pounding it was like someone was cradling my head in their hands with their palms at the base of my skull and they were pushing in… it effing hurt like hell to say the least.
I tried to sit up and have some water but I could not sit up unaided, I was just falling to the left. M. propped some pillows behind me and I tried to drink some water. I kept dropping the water bottle; I eventually tried drinking with my left hand.
At this point yeah I started to freak out, what the @$#% was going on???  M. rang my mum in a panic and asked her what we should do, I had no balance and I had dramatically reduced strength to the right side of my body. She suggested a shower, try to relax the muscles, otherwise call the ambulance.
I tried to get in the shower, but I couldn’t hold myself up. Not long after I was downstairs and the paramedics had arrived, I vomited some more and they were discussing with M. what could be going on.  M. told them I have IIH, Endo and PCOS, but also that I had a stent placed in my brain earlier this year. That is when the word stroke was brought up, I was having stroke symptoms!!

I was rushed to hospital, my eyes were becoming quite photophobic, and so I was the girl wearing sunnies in E.D. Also the constant pins and needles/ tingles that I had been feeling in the right hand/ arm for the past few weeks were going crazy.
A registrar came to see me and got a full medical history, I mean she asked me every question possible dating back so far to my childhood even, not just looking at my brain, but everything… they needed a big picture view to treat me as I am such a complex patient.
My blood and urine were analysed and came back normal, I was then taken for a CT, which was also normal. Meanwhile the Dr’s at Wollongong Hospital had been in contact with my Neurologist Dr P.
He wanted me to be transferred to Royal North Shore Hospital…. So I was, we arrived at 4am. It wasn’t the nicest ride, the ‘bed’ in the ambulance felt every little bump and each time you went uphill or downhill you had to hold on for fear of sliding off the bed.
When we got there M. and I were seen to by a registrar who went on to tell me that it was all in my head and it was nothing serious and that I would probably be going home within the next day or so. Well that upset me quite a bit… my neuro would not have me transferred me here just to be told that there is nothing going on and that I would be released!!!
Thankfully a few hours later in the day my neuro came to see me and he said that this was quite serious and I would not be going home for a while most likely.

Over the next few days/ weeks I was taken for numerous tests, I saw many Dr’s and specialists.
A few more symptoms reared their ugly heads- tinnitus, mainly in the left ear (also a full feeling in the left ear) and floaties in my vision.
Some of the many came back normal; others showed clear indications of what was going on.
My MRI came back normal; Where as I had 3 failed Lumbar Punctures (they grated bone and touched nerves, I have mild scoliosis so this make is harder, I did try to tell them this), and 1 successfully done under CT- is showed my cerebral spinal fluid pressure was above 36! Most peoples CSF should be between 8 and 16;
My OCT’s, Field Visions and other eye examination tests all showed the same thing, and they were not indicative of high pressure. My paps were on the high side of normal, my fields were reasonable good and my vision obscurities were pretty good. One thing we did pick up was that everything was worse of the left!
My Venogram showed that my stent was ok; there was no damage, or narrowing on either side of the stent. I do have stenosis in the left transverse sinus ventricle (same as last time), but the pressure within the stenosis was not high enough to warrant putting a stent in. Though that is something that has mixed opinions- I was started on high dose Diamox a few days after being admitted to RNSH, and this could have affected the pressure within the stenosis!

So the plan was to keep me on high dose Diamox, start me on low dose Topomax (a headache medication, which also helps some people to lose weight due to nausea) and gradually increase the Topomax over time, depending all goes well. Topomax can have some pretty serious side effects- glaucoma, loss of vision, extreme nausea etc.

I was told that I would not be let out of hospital until I could walk unaided, so in the last week I made it my plan to walk! Up until then I needed the help of others to walk, stand, and shower (unless a chair was provided). But I had figured out a neat trick while washing my hand after toileting… I tell my brain to lean slightly forward and a lot to the right and ta da I stand up straight!!!
While walking one day with M. I made him help me test my centre of gravity and we figured out that it is completely off… so by telling my brain to lean slightly forward and a lot to the right I am creating a new centre of gravity!  I tested it out with the aid of one of the nurses, I completely shocked her, she asked how I was doing it and I told her sheer determination and a hell of a lot of concentration!!!!
The following day I showed my neuro, I didn’t even tell him I was going to do it = P  He was gobsmacked to say the least. He made me do a few things to test just how well I was doing, walking on the heel of my feet- could do that; walk on my toes- could not do that; walk with my eyes closed- could not do that; walk stairs with the aid of a railing- could do that.
So in other words my balance was still really shit but a figure out a way to overcome it as long as I concentrated really hard!
Within the next few days I was let out of hospital , such a nice feeling to sleep in my own bed and to cuddle M. while I slept.

Since getting out of hospital things have definitely changed, I have some new symptoms that are a bit strange and I have met with my neuro again. He is unsure whether some of the new symptoms are medication based or if it is still because of high pressure!
I have really bad, noticeable vertigo- my eyes flicker in the test; but I cannot stand up, sit, and walk without concentrating really really hard! As soon as I relax I fall, and even when I do stand/ walk I drift and lean to the left… it is getting worse!!
I have been experiencing pretty bad nausea; it changes from day to day. Some days it is really bad and I don’t eat much and I do occasionally vomit regardless of the Pramin.
My vision has gone all wacky!!! I am having symptoms similar to macular degeneration- warping of my vision, kind of concave squiggly. 2D objects appear 3D, especially if it is off a digital screen. Rectangular objects look skewed. I have more floaties in my vision, and it is sometimes hard to focus on objects.
My depth perception is off, it started with me knocking things over, but things now appear closer than what they really are.
Also I have smelt the whisky smell a few more times as well. And my headaches haven’t overly eased, each day is different and there are two different types of pain- a background throb and then an acute throbbing pain that can last from anywhere between 5 mins and a whole day.

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