Tuesday, September 13, 2011

Solving Medical Mysteries

I crashed out again physically over the weekend, but right now I'm feeling elated.  I have been spending my time off researching Myalgic Encephalomyelitis, and all the crazy, mis-matched jigsaw puzzle pieces of my health that I've been struggling with for the past 8 years are finally falling into place.  I cannot begin to tell you how satisfying that feels.

For example, you may recall that one year ago my doctor prescribed Imovane (a.k.a. Zopiclone) to see if it would provide me with a more refreshing sleep, which would lessen my fatigue.  I took one half of the lowest possible dose, and had a truly horrible reaction.  Guess what?  ME patients are expected to react badly to benzodiazepines, the family of drugs to which this medication belongs.

And say, do you remember that time I ended up in the emergency room last November, with a scary-fast heart rate?  I figured that one out too.  According to the sources I've read, around 90% of ME patients have a condition known as Orthostatic Intolerance.  I found this wicked cool online document which explains it very clearly.  In a nutshell, it means that one's heart rate goes up and blood pressure goes down upon assuming an upright position, which includes standing up and even sitting up.

When a normal person assumes an upright position, the body releases small amounts of norepinephrine and epinephrine (a.k.a. adrenaline), which cause blood vessels to constrict, forcing blood to circulate all the way up to the brain. When an ME person assumes an upright position, the same process is initiated, but the blood vessels do not respond properly.  Therefore, the body produces more hormones in an attempt to compensate.  Norepinephrine and adrenaline/epinephrine are part of the body's fight or flight reaction.  Although the blood vessels may not constrict, the ME person's heart reacts normally, resulting in a rapid heart rate and feeling of excitement or anxiety.  There may also be lightheadedness or faintness if insufficient blood is circulating to the brain.

There are several aggravating factors for Orthostatic Intolerance, including low blood volume due to dehydration and/or insufficient salt intake.  Sufferers are advised to drink plenty of fluids, and to supplement with drinks containing sodium, such as sports drinks or tomato juice, as required.

My story started with a stomach flu.  For around a week after the first nasty 24 hours, I ate a very simple diet in order to go easy on my digestive tract.  I ate unseasoned veggies, plain brown rice, and baby food.  There was almost no salt in my diet.  I had never heard of OI.  I didn't know that I was setting myself up for a fall.  My symptoms can be summed up as a severe OI reaction.  It gives a whole new dimension to the jingle "I should have had a V-8!"

The mechanisms of OI explain why I often feel speedy and jittery just before a crash.  The OI symptoms are probably always there to some extent, but not so that I'd notice them on good days.  When I'm starting to get over-extended, the norepinephrine and adrenaline factors increase, but because I have never felt dizzy or faint I haven't taken that as a signal to slow down.  I have always ridden the adrenaline wave to the bitter end, in an anxiety-fueled whirlwind, trying to relocate my feelings of calm and well-being by getting to the end of my to-do list.  Starting from now I'll know that those jitters are an early warning signal from my body, and I have to do the non-intuitive thing in the middle of my fight-flight reaction: stop and rest.

I'm planning to experiment with wearing a heart rate monitor, as a quantitative measuring device for my body's stress levels. I'm often too busy to pay attention to small, subtle cues.  Perhaps if I actually have an alarm beeping on my wrist that might make me take notice.

Anyway, I'm feeling better today than I did a couple of days ago.  It's obvious now that a lot of my emotions, including my anxiety about my health and my future, are triggered when my body is overtired.  When I rest, I feel calm and centred.  When I'm too active, I get all hyper and freaked out.  It's the adrenaline talking.  I don't feel horrible today, but I'm still pretty speedy after even slight activity.  I think I'll give myself another day to rest.


Warped Mind of Ron said...

Glad you are find pieces of the instruction manual for your body. Hope it helps you to avoid those crashes in the future.

Jameil said...

This is soooo exciting! I can't wait for you to see some of these things resulting in fewer down days!!

Lynn said...

Golly - that's a lot to deal with. Glad you are figuring it all out and hope things are better soon.

Granny Annie said...

I will never forget my best friend calling me to happily announce, "I have MS!" She was thrilled to know she had Multiple Sclerosis because she had been going to doctors for a few years searching in vain for her illness. She too was diagnosed with everything from mental illness to early menopause. Finally she went to an urgent care facility when her vision failed her and met with an intern who asked, "Have you ever been tested for MS?". They saw that she started the process and diagnosed her (as well as MS can be diagnosed) and began treating her properly. While I feel for you having this disease, I know that you are pleased to finally be on track for getting some help for you ME.

Jenski said...

Early warning signs would be great to identify...and sounds like a heart monitor would force you to listen. It may even be interesting to see if you have any daily patterns in your heart rate that you can manage to help keep your energy up. Good for you for continuing to be proactive and find solutions to help stay healthy!

Pixiebaby said...

I'm glad that you're finally able to put together some pieces of the puzzle. While we may not feel better, at least we understand what is happening and that's a huge relief in and of itself. I can't tell you how thrilled I was to be able to put a name to mine too. Take good care of yourself Spark...get some rest. *hugs

DarcsFalcon said...

It sounds like there has been so much discovered about this - to me it'll always be CFS - ME since I first heard about it in the late 80's. I'm so happy to hear that! Hopefully one day they'll even find a cure. Living with a chronic illness like that really ... sucks.

Good for you for finding ways to take control of your symptoms and be proactive about it. I know it's not easy, but so far you seem to be doing a great job, Spark. Hang in there! Hopefully they'll continue to find treatments and maybe even a cure. :)