Managing OI with ORS

orthostatic_intolerance

After reading and researching the Oral Rehydration Salts (ORS) trial being conducted at New York Medical College, I decided to share with my doctor what I know about ORS and asked him if he felt comfortable with me giving it a try now, since we’ve had no real luck solving my own problems with Orthostatic intolerance (OI), which I have long felt is one of the two things which keeps me homebound and unable to maintain any level of regular activity or employment.

Orthostatic Intolerance is a complex condition. Really, it’s more of a condition category in which you can lump a bunch of patients whose bodies react poorly to returning to or maintaining an upright position. However, the reason for that intolerance varies and involves multiple, interconnected bodily systems. Medscape provides a very good overview of orthostatic intolerance here. Phoenix Rising does a nice job of describing NHM and POTS, the two different kinds ME/CFS sufferers generally get here.

What Phoenix Rising doesn’t mention, nor have I seen anywhere else is that the two kinds most frequently acquired by ME/CFS sufferers can occur at the same time in the same person. I know this because I have both kinds. Of course this hasn’t been confirmed through actual testing because I live nowhere near an actual ME/CFS specialist and none of my doctors have been willing to go through all the rigmarole of testing (none of them knows how), but I would lay money on it based on the frequency and timing of my symptoms.

Another thing I cannot stress enough, especially if you didn’t look at the Medscape overview because you already think you know everything there is to know about OI—or worse, you think you don’t have it and haven’t bothered to raise the question with your doctor—is that most ME/CFS patients also have OI. It is absolutely mind boggling the number of symptoms OI can cause and how many overlap with known ME/CFS symptoms, so many that it’s sometimes impossible to tell which illness is causing what. At its worst, it’s nearly as bad as having ME/CFS itself because it can be just as hindering and produce so many similar side effects. The fact of the matter is that it’s almost impossible to know if you have it unless you’ve been properly evaluated and/or treated for it.

I started my journey to fix this problem only last August. It began by being struck down by my rheumatologist and sent to my GP instead. My GP agreed with my diagnosis and put me on Gatorade and knee high compression socks to begin with. He didn’t know how to officially diagnose which kind of OI I have, so he charted my condition as orthostatic hypotension and decided to try a few things with me before sending me to a cardiologist.

With the use of compression socks and Gatorade, I saw what I felt were acceptable improvements. The most noticeable and immediate improvements were no more dizziness on standing and a noted decrease in nausea: However, I was still unable to stand longer than 15-20 minutes without breaking into a heavy sweat and feeling like I was having a hot flash, being struck with nausea, heart palpitations and something that feels like an anxiety attack, which is really your autonomic fight/flight response kicking in for no apparent reason. It comes with a nice dose of adrenaline and causes the shakes, too. What I gleaned from this experience is it helps with NHM, but not POTS, as the latter symptoms go along with POTS.

In addition to the compression hose and Gatorade not working well for POTS, it seems as though the NHM got wise to the tools being used against it and worked to overcome these new constraints. As time went on, the dizziness upon standing started to return on occasion and I had to add more and more Gatorade to my daily regiment. My GP and I decided to upgrade to thigh highs as well, but being the plus sized queen I am, I couldn’t wear the thigh highs even though they said they would fit my measurements.

Then the ORS trial came along.

I admit, I was nervous about introducing the idea to my GP. I’ve never asked him to prescribe me anything untried, and my rheumatologist shoots me down every time, so I was prepared to be rejected, especially since I’ve had kidney disease and doctors tend to want to treat me like glass for that reason alone. To my delight he agreed readily enough and it only took him a week to respond to my email with a big thumbs up to start out at the suggested dosage.

After only day 3 on ORS, I realize what a Grade A idiot I have been. I should have been pushing the subject years ago, when I read my first OI article and study and I should have insisted on a full work up with a specialist. How differently my life could have been these last several years. Or so I suspect. Of course I try not to get too hung up on such ideas. Life is way too short to trip on regrets, especially when I feel as good as I do with ORS.

So every day when I get up, I pull on my compression knee highs (20-30mmHg) and mix up a packet of ORS in one quart of water and 3 tablespoons of orange, lemon or lime juice. It tastes like a big ol’ glass full of armpit without any flavoring. I also mix in my D-Ribose, Miralax or any other soluble I need to take for the day.

On day one, I noticed an immediate difference. Zero dizziness at any stage, slightly more energy (ikr?!), nausea rating of 3 (on a scale of 1-10), no drastic changes in cognitive function, but I’m feeling a little brighter, more alert, and a little happier for no apparent reason.

The problems I face with this therapy on day one are about taste (seriously, this crap tastes just like sweat!) and timing (should I chug it all at once, drink it in two batches, time it or what?) rather than side effects and consequences.

On day two, I wake up feeling refreshed and ready…. Wait. What? No. Really. I feel great! I mix up my drink, add 1 tablespoon lemon juice and 1 tablespoon lime juice. Finally, it’s drinkable! I decide to drink it in 4 8oz servings. I drink it in gulps by the fridge and forget it as quickly as I drank it and I’m pushing my husband about “What are we going to do today?” “Let’s go to the park” I say and just as quickly change my mind to a walk by the Ohio River and then I’m on to shopping, which finally sticks.

Usually what happens during some point in the process of me washing up and fixing my hair, putting on my make-up and getting dressed is that the OI kicks in: I become exhausted and shaky. I begin to sweat so bad my hair and make-up are destroyed. I begin crying and cursing and there’s nothing left for me to do but crawl back into bed and dream about the day out we might have had.

The knee highs and Gatorade mostly put an end to that last summer except during flare ups, but still I have my days. Even simple infections like Sinusitis can keep me from such trips. However, my doctor even diagnosed me with sinusitis last Wednesday and put me on yet another antibiotic. Did that hold me back on Saturday?

Not only did I make it out of the house, we spent two hours shopping and decided to go back out again after dinner to listen to some live music and have a few drinks! I did not use my wheelchair or my cane or request assistance or even sit down once the entire time we shopped. I did break into a light sweat, but that was the worst of it.

Since day 2 (I’m now on day 7), I’ve put myself through a number of interesting and sometimes unpleasant tests. Yes, I still suffer from post-exertional malaise—I found this out on day 4 after pushing myself almost as hard on day 3 as I did on day 2. It cost me a series of migraines complete with auras, light sensitivity and nausea, and some pretty heavy fatigue and muscle soreness for a couple of days.

With shorts and swimsuit season bearing down on us, I also couldn’t resist trying a day without my knee highs. Unfortunately, it had me seeing stars by dinner and took me another day before I was feeling good again.

The perfect combination, at least for me, is to wear the knee highs and drink one liter of the ORS per day. I do wonder if a time will come that I need to up the amount I drink as I had to do with the Gatorade or if I will need to adjust it based on my activity levels, but since my body is still subject to the constraints PEM puts forth, I will likely be staying at the one liter per day dosage unless my body makes its own natural adjustments.

As with anything I share on Disability Depot, if you’re thinking about giving ORS a try, please talk it over with your physician and make any necessary adjustments for your own personal health concerns. I’ll continue to post any new and updated information on this topic as it becomes available. Best of luck!

Related Articles: Get Up, Stand Up: New Study Financed For OI Sufferers.

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