Saturday, July 4, 2015

the lowest of the low.

I had a draft all ready to be posted this week about how to deal with things when you are feeling at your lowest, most frustrated point with your illnesses.. and then this past week happened.

I've talked on here before about how I get migraines.  Since I was in middle school, I have gotten what are referred to as basilar, or ocular, migraines -- instead of the "typical" migraine, I get ones where the entire (usually left) side of my body goes tingly and then numb, starting with my fingertips and progressing up my arm, through my face/mouth and down into my trunk and leg.  I also get an aura in that eye that starts as a blob but eventually leads to a complete loss of vision on that side.  I also have the "typical" migraines people get, with the auras and intense pain, and I get sinus headaches. 

This is what my aura looks like when I first start getting it, and then it turns completely black with no lines.

About three months ago, after switching birth controls, I started getting the migraines more frequently again.  I take Topamax and have been using Relpax as a rescue med, which had taken them down significantly, but after the switch I was getting the regular migraines about 3-4 times a week, and the really bad ones about 3-4 times a month (versus maybe 1 of each per month or less).

Two weeks ago, I was out shopping in the evening when I started to notice an aura in my right eye.  I was in a brightly lit store and at first thought it was from glancing at the light, but when it started to grow, I realized I was getting a migraine and quickly left.  Within 20 minutes, that eye was completely blacked out, my face, tongue, hand, arm, and into my trunk were numb, and I was kind of freaking out because I was all alone and wondering how I was going to get home.  I sat there for another 15 minutes and then suddenly, something happened that had never happened before -- over the course of a minute, everything completely disappeared.  The aura went away and I could see, my numbness was gone and I felt fine, except for some odd sensations in my face. 

This week, I went to see my neurologist on Monday.  I explained to him my more frequent migraines and my weird episode and he told me something I never thought I would hear...  What I thought was a migraine wasn't one at all, but it was, in fact, a transischemic attack (TIA), or a stroke.  Yep.  28 years old, and I had a stroke.  I have heard a lot of diagnoses that I never thought I would hear, things I would never think someone at my age would have to be dealing with, but this was something else altogether.  Unfortunately, that was just the start of my day.

He tells me that I need to have a brain MRI and a stroke evaluation to determine the extent of the damage that was done.  I will need a carotid artery and heart ultrasound to look for any blood clots or arterial sclerosis (blockages) to determine the likelihood of another stroke.  He wants to test me for any blood clotting disorders as well, so I head down to the lab where they draw 10 vials of blood. Ugh.  He changes me from Relpax to Maxalt, another triptan, to try and control the pain of the headaches, and sends me on my way.

Then I'm off to my next doctor's appointment, my rheumatologist, where I'm told nothing can be done about my increasing fibro fog, the random tingling in my fingers and toes (non-migraine related), and the fact that my shoulders have decided to join the ranks of the joints rebelling against me.  Also, hey, why not test every single trigger point "to make sure they're all the same"?!  Oh no, just kidding.  I was faking it!  You got me.  

The fibro fog has especially been frustrating to me since I have always had an exceptional memory and now I will put something down and can't remember where it is two minutes later.  I find myself sitting, staring off into space blankly more and more, something that is not like me at all.  But since it's just another symptom of the fibromyalgia, there's not really anything that can be done.  My current muscle relaxer isn't working very well, so they switch that, order more bloodwork (4 more vials, baby!) because at the last visit, my inflammatory indicators were high (I wonder why...), and off I go.

I get home, mind reeling, and finally eat an early dinner.  I'm exhausted after 3 hours of sleep the night before and all the delightful news I've gotten.  I take a nap and wake up, only to feel the telltale grumbling in my stomach.  I feel an overwhelming sense of nausea and soon I'm hanging out in front of the porcelain god with a stomach bug I can only describe as the devil himself trying to exit my body through my esophagus.  

Now, as you people with chronic illness know, we have a whole other pain scale than normal people.  Our pain tolerance is built up through daily exposure and what someone else may consider intolerable, we just shrug our shoulders at.  Keeping that in mind, this was excruciating.  I thought I knew pain when I was on a procedure table, having a rigid cystoscope shoved into my urethra without any pain medication, but this just took things to a whole new level.  I threw up until I had nothing left in me, and then I crawled to bed, my dogs staring at me like I had just been exorcised.  (To be fair, I felt like I had been, too.)

So I got some sleep and felt better and life was fine and dandy, right?  NOPE.  I could only lay perfectly still on either side, or else this ripping pain just coursed through my body.  From all the throwing up,  I had developed a migraine (thankfully only the "regular" kind, but still.. the pain, ow!) and with the lack of fluids, peeing felt like flamethrowers were coming out of my urethra.  I kept dry heaving throughout the night and each one felt like someone punching me in my sternum and gut at the same time.

I woke up the next day at 4 pm and choked down some yogurt and crackers.  Things were fine for about an hour until I got hit with a wave of the most intense stomach cramps I have ever had.  I thought about forcing myself to throw up just to get it out of me, but my throat hurt so bad from throwing up the night before that I didn't want to.  Laying in bed in the same position for so long had cramped my joints even more than usual, so I put heat pads on each hip, but since I already felt feverish and still nauseous, I ended up having to alternate throwing the blankets off and pulling them up, shivering, all night.  I suffered the rest of the night with the stomach cramps, pee fire, and migraines, passing in and out of a fitful sleep.

Thankfully, the next day I was able to finally get down some plain jasmine rice that seemed to soak up the rest of satan that was chillin' in my belly.  I still felt a little queasy for the next few days and couldn't eat much, but man.  I thought I had known pain, and known my lowest point so far with all of my illnesses, but that day definitely took the prize.  It was one of those days you just wonder if you can actually go on, because you truly don't know if you can take the pain anymore.  I honestly can say I have never been at that point before.  It's a scary place to be and I hope I never have to experience it again!

I am still planning on doing a post on staying positive at your lowest times because I have had plenty and I'm sadly sure I will have more in the future (just hopefully not this bad).  I just wanted to have a little health update before I did.  As always, I would love to hear from you, so please leave your comments below!

1 comment :

  1. Oh Gabbi I'm sending you a big, gentle hug. I get it and I always hope no one else could possibly be going through life like me. You really have had the week from hell. I wish I could say it will get better but... I am here for you though. I won't go into all my stuff (you can read it in my site if you want to?) as you have enough to deal with. It is horrible (not strong enough word) when you're dealing with pain EVERY DAY to then have more piled on top. TIA - did that not scare the bleep out of you? I don't know what else to say except hang in there. You will get through this, somehow. Do you have someone who keeps an eye in you - partner/mum/friend?? Is it worth changing your birth control, or coming off it completely. I'm sorry you've probably asked yourself this a million times before. I hope today is an easier day (better is a joke when you have fibro/migraines). Sammie xx


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