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Study Points to More Effective Treatment than IV Infusions for Low Blood Volume in OI, POTS

Just in the nick of time, we finish October with a post for Dysautonomia Awareness Month! Back in March of 2016, the Zebra Pit published a post about an upcoming study of oral rehydration salts (ORS) as an effective therapy for dystautonomia. The study was finally completed and published in July of 2019, in The Journal of Pediatrics. Learn about the results of the study, how it was conducted and what it said about the use of ORS versus that of saline infusions.

What is ORS?

Oral rehydration salts (ORS) are a mixture of glucose, potassium, and sodium. ORS was developed by the World Health Organization in the 1940’s to use as an oral rehydration therapy, in place of IV administration. When mixed with water, ORS has been proven to be effective to replace necessary electrolytes that have been lost to acute diarrhea or vomiting caused by diseases such as cholera. ORS is an essential medicine of the WHO, and has saved countless of lives that would have otherwise been lost.

Study Findings

In recent years, studies are starting to show that ORS can also be used as a short term treatment for those with Orthostatic Intolerance due to dysautonomia as well. The study sought to understand the efficacy of ORS and IV saline and whether it could increase blood volume, thereby reducing the effects of OI in the short term. In 2016, the NIH announced it was funding the study conducted by Dr. Marvin Medow, concerning the benefits of ORS with ME/CFS patients who have OI.

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Dr Medow tested a total of 35 people with OI and ME/CFS between the ages of 15 to 29. A portion were given placebo, while others received either a litre of saline intravenously, or an oral dose of ORS. After administration, the patients were placed in a lying position, with the lower half of their bodies covered in an airtight chamber,also known as an LBNP tank. The patients were then subjected to varying negative pressure. The pressure was gradually increased until each patient reached particular levels of OI. The testing was grueling: Most of the patients passed out at some point. My heart goes out to these patients and their bravery, but it seems their hard work has paid off. Not only did they prove both IV and oral rehydration salts to be quite effective in treating OI, but they figured out that one is actually more effective than the other:

Changes in normalized orthostatic index (% of that measured without treatment in control (black bars) and subjects with POTS with orthostatic intolerance (gray bars) measured following no treatment (Untreated), after infusion of IV saline, and after ingestion of ORS. Neither saline nor ORS increased orthostatic tolerance in untreated controls (P = .46; n = 15), whereas both IV saline and ORS significantly improved orthostatic tolerance (*P < .05 and **P < .001, respectively; n = 10) in subjects with POTS.” Dr. Medow, et al.

The study revealed that both saline and ORS are effective in the short term treatment of OI. However, the ORS, with it’s combination of sugars, potassium and sodium, was proven to be even more effective than the saline. While simple sodium can help raise blood volume, ORS still seems to be the better option, according to this study. Better yet, ORS is readily available, as well as affordable and it doesn’t require a visit to an infusion center or the use of ports and is obviously much less invasive, providing fewer risks than any venipuncture.

These concerns were what led Michelle to conduct her own study of the use of ORS to improve her POTS symptoms. Michelle has been taking ORS to treat her Orthostatic Intolerance (OI) for nearly three years. It’s proven to us that it can be quite effective and has been a staple in our household for a few years now! I even take it to help keep my own low blood pressure from becoming a problem.

ORS Caveats

Before jumping on the ORS bandwagon, it’s important to note that there are also some potential drawbacks to its use long-term that weren’t addressed in the short term study. Potassium is a very important substance for heart health, and it’s quite possibly part of the reason why ORS is more effective than IV saline, along with the glucose that it contains. However, potassium is something that needs to maintained within a certain range, as too much potassium can also have terrible side effects and fatal consequences.

High potassium levels in the blood can cause kidney failure, type 1 diabetes, Addison’s disease, or heart failure. Before starting any regiment of ORS you should consult with your doctor about whether or not this therapy is right for you and conduct preliminary testing, in addition to doing occasional spot checks to ensure your levels remain within a healthy range.

How often you need to supplement with ORS will largely depend on the individual and may take a bit of trial and error. Intermittent testing can help you get to the right level. For Michelle, who gets more potassium in her diet, it takes a lot more sodium than potassium, so she only supplements 1-2 x per week with ORS, while drinking water infused with sea salt and a small amount of glucose daily.

Some people may also have a hard time adjusting to the taste of ORS. Lucky for them, there are oral rehydration salts that also come flavored. Either way, you get used to the flavor and really come to appreciate the effects. In the end, Michelle decided learning to get used to salty beverages is by far preferable to higher risk, more expensive IV saline.

Where to Find ORS

Oral Rehydration Salts are easy to find, but not with the correct amounts of sodium, potassium and glucose. They also tend to focus more on flavor than quality and are not true WHO approved brands. Trioral brand is the only one I’ve found that is WHO approved and is conveniently available on Amazon:

Don’t need the potassium? Try putting up to a 1/2 teaspoon of natural sea salt into your water several times a day and add a little sweetener, which helps the body to absorb sodium. If you supplement with salt alone, you want to make sure it’s natural and not iodized table salt. You’ll also find you run through it quickly, so it’s good to buy in bulk. We like these brands and types:

No matter how you choose to supplement, it’s important for people with dysautonomia to get enough salt, glucose and potassium. As the highlighted study shows, it can have a huge impact on blood pressure levels, which means fewer dizzy spells on standing, less fatigue and improved symptoms over all. Sometimes medications are also needed to help manage this complex condition, but the first line of defense should also include these important electrolytes, which should be monitored periodically through testing. Remember, any and all changes to your healthcare regimen should be discussed with your care team first.

Do you already supplement with ORS or a similar product? What are some of the benefits you’ve found?

Resources and Further Reading

David Curtis lives in Florence, KY with his wife Michelle, 2 Russian Blue cats and his many fish. David manages the pet department of a prominent retail chain in addition to caring for his wife, pets and home. In his spare time, he enjoys reading, exploring history, watching football, sci-fi, fantasy or comic book shows and film, along with fighting for truth, justice, and the human condition. Much like Tyrion Lannister, he also drinks (coffee) and knows things.

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Supplements and Safety: How Aloe Almost Gave Me a Heart Attack

Anything that goes into or on my body gets carefully researched first. I’m not speaking about only medications, supplements and cosmetics, but also foods, shampoo, chapstick, even what I wash my clothes and bedding in. This isn’t a brag about how I treat my body like a sacred temple; it’s something I’ve learn to do out of necessity because I’m a “trifecta zebra,” otherwise known as a person with Ehlers-Danlos Syndrome (EDS), Mast Cell Activation Syndrome (MCAS) and Postural Tachycardia Syndrome (POTS). If I fail to check a label, I could be facing days of hives and itching or I could end up with life threatening anaphylaxis. Reading labels and doing research is a matter of life or death for me. When it comes to using supplements for my health, these are all things I have to keep in mind, but there’s a great deal more to worry about with natural medications than if they’re going to cause me to react.

Whether or not you’re a trifecta zebra like me, if you’re using supplements without a complete understanding of what it is you’re putting into your body, you too could be risking your life. Take, for example, the rash of cardiac episodes I experienced recently. I now believe that had I taken the time to consider more carefully the ramifications of a simple supplement change, that I might have been able to avoid these episodes, and the ensuing angiogram, entirely. At the least, had I been paying better attention or working with either an integrated medicine specialist or naturopath, it probably would have been caught before resorting to an angiogram.

All Heart

Just under three years ago, my former PCP and I made the decision together to treat my POTS, then diagnosed as orthostatic intolerance, with Oral Rehydration Salts (ORS). There was a study going on about it and we figured we’d give it a shot and see how much it helped with my symptoms. ORS contains different types of sodium and a healthy dose of potassium. Since my potassium was on the low side when my PCP tested it, he thought the amount would be fine for me to take and I felt much better when supplementing with the ORS than without it.

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Though I’m now diagnosed with POTS and it is being treated with florinef and midodrine, I’ve continued taking varying doses of ORS daily to fill the gap in blood pressure that my medications still leave. While I experience almost no tachycardia anymore and few dizzy spells, my vascular cardiologist and I have been frustrated by my inability to tolerate upright exercise. I sometimes end up with shortness of breath and dizziness if I walk at what is really considered to be a normal pace or try to go up a slight incline. It seemed to happen only occasionally though, and since my other symptoms still had me mostly housebound, I was satisfied to take my exercise on my recumbent bike and take my time on my feet.

Then in October of last year these little attacks became more frequent and started to include terrible chest pain. There I would be, leaning against whatever I could get my mitts on, trying to inhale the world in one gulp, my chest feeling like it wanted to explode, head swimming. I happened to see my new PCP just after one such occurrence that scared me enough that I felt like I needed to tell him about it, though I’d been reporting the problem to doctors for some time. When my new PCP heard the details of these attacks, he ordered a stress test. It showed decreased profusion on the right side of my heart after exercise, indicating that something was blocking blood flow to the heart under stress.

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Capricious, Post-cardiogram

In the six weeks it took me to get in to see the cardiologist, things went from bad to worse. I was no longer having attacks during exercise; they were happening while I was working on the computer or watching TV. Since I’d bought a pulse/ox monitor, I got to watch fearfully as my heart rate dipped to just under 40 and my oxygen fell below 94%. Several times we vacillated over ER trips only to have my heart rate rebound after anywhere from 20-90 minutes. I don’t feel I’m overstating things when I say it sometimes feels like a miracle that I came through this experience unfazed.

When the cardiologist performed my angiogram, my artery began spasming as soon as the catheter entered it. They had to back it out and insert a smaller catheter, which helped, but didn’t prevent the spasms entirely.

Hematoma
My hematoma, still here 4 wks later!

They found no signs of blockage and since they actually got to witness the way my arteries spasm during the procedure, they felt quite comfortable diagnosing my problem as CAS, coronary artery spasms. CAS is often treated as “benign” by doctors: However, it can cause both heart attack and stroke and isn’t exactly rare in EDS.

I don’t want to get off on a tangent, but it’s important to understand that arterial spasm can happen anywhere and could easily be major contributors to my POTS and my migraines. Two things now strongly point to my migraines being caused by arterial spasm; the evidence that it occurs in other places in my body and the fact that verapamil is the only medication to effectively treat my migraines besides topamax. I’ve tried over a dozen other medications.

Once I had that information, I began reading up on CAS and heart dysfunction in general. I started thinking about the role of electrolytes in heart health and wondered if my ORS could be interfering. I reasoned that if it was potassium causing the problem, then it would be easy enough to test out by withdrawing that treatment for a while. I discontinued the use of my ORS for a few days just to see if the symptoms changed at all. I went off of it for 5 days and amazingly my symptoms gradually faded and died away. After 5 days, I drank a half liter of prepared ORS and sure enough, I had an event that day. I stopped using it entirely, switching instead to adding Himalayan pink salt to my water a couple times of day. The longer I went without ORS, the fewer the attacks and the less severe they became.

Why now?

wolf

What Changed in October that ramped up my CAS attacks? I started taking pure inner leaf aloe vera juice every night. One of the effects of aloe vera is that it increases absorption of nutrients. Since I’ve been fighting various deficiencies in vitamins and minerals for years, I have to supplement a lot of them, many at doses that make other people’s eyes pop out like a cartoon wolf’s eyes taking in a beautiful woman.

When I researched aloe vera’s properties, it was my own eyes popping when I read the claim that it can increase absorption by as much as 300%. I deal with supplements all the time. I see some pretty amazing claims, some of which I take with a grain of salt. In this case, I was hopeful that it was true, but my skepticism was raised; 300% is a huge claim. I decided to take it with a large grain of salt and a wait and see attitude. It was a mistake that could have been fatal.

If nothing else, my very expensive angiogram bill has taught me some very valuable lessons:

  1. Make sure you consider every angle when starting a new supplement
  2. Believe everything you read (that’s reliable) about a supplement (no matter how implausible it may seem) until you’ve proven otherwise
  3. No matter how long you’ve been taking something, it could still be affecting your health in ways you don’t know about.

This third item is important because I realize in retrospect that I was having these episodes before I ever began taking aloe. They were just a lot less dramatic and not so painful. In a way, I need to thank aloe for ramping things up and forcing me to examine the situation, because I truly thought what I was experiencing was part of my dysautonomia. I never dreamed it was medication related and that I’d tipped my potassium from low to where it was over-saturating my cells, contributing to an existing health problem of which I was never even aware.

I’ve written about this experience not to scare you out of utilizing supplements, but so that you use them with renewed deference for their power. We can all use an occasional reminder about respecting our herbs and remedies and apparently there are always new considerations to add. I have a procedure I follow for selecting and testing my supplements. I’ve been doing this for years, but I still have much to learn. Of course I’m not a medical professional; I have no degrees in integrated medicine or naturopathy or chiropathy. I and everyone like me would benefit most from utilizing such people, but not all of us have the privilege of being in the tax brackets that allow for such things and that shouldn’t mean we have to do without either.

You do have to utilize your smarts and be willing to do lots of research, in that case. Read and understand what supplements do and consider whether or not those are all good things for you. Check for contraindications for use, known side effects, drug interactions. See what research has been done on them. Talk to people who have used them or find articles written about them by people like me and see what their experiences were. Most importantly, pay careful attention to what your own body tells you about what you’re taking. For a full list of do’s and don’ts, check out Choosing Your Own Supplements.

Vitamin and Mineral Safety

Vitamin D

Some vitamins and minerals accumulate in the body until they reach toxic levels. Potassium is one example. Vitamin D is another. Since my potassium was so obviously being affected by my use of aloe, I felt it was best to decrease my vitamin D. I’m glad I did. I tested in the high normal range 2 weeks after cutting my dose in half. We also retested my sodium and it’s no longer too high (it was just borderline high two days prior to surgery), however it is just under the bar for high, which means I can cut back on my salt intake as well.

Whatever you supplement, be sure you understand whether the excess is simply passed through the kidneys (and how hard the kidneys have to work to do that if they are at all compromised) or if it’s a substance that gets stored in our cells. If it builds up in the cells, it’s imperative that these levels be checked occasionally and that you’re aware of what the symptoms look like in the event of overdose.

Many people know that electrolyte imbalances can be dangerous, but most don’t know why or understand how potassium works. Potassium can be tricky as far as testing, so knowing the symptoms and paying attention are particularly important. When I discussed my ORS experiment with the cardiologist, he was amazed. I asked him if we could test to confirm. He told me that I’d already performed the best tests I could. He explained that what they test is the saturation of potassium in the blood and what was at work was a buildup of potassium in the cells. One can easily have a normal or high normal potassium test result (mine was in a high normal range two days prior to my procedure) and still have oversaturated cells. By the time its high in the blood, most people have already had a heart attack.

Related: Learn more about the signs, symptoms and management of Low Potassium Levels and High Potassium Levels from Cleveland Clinic.

When I saw my PCP a few days after the cardiologist, he had a great theory about my saturation levels. He posited that we all have our “sweet spots” when it comes to nutrients and that’s why there’s a scale of what’s normal. Just because I started having CAS attacks with a potassium serum level of 4.5 doesn’t meant everyone would. It’s just too high for me personally. He really has an excellent point which I’ve seen demonstrated in so many ways. It’s not just being spoonies that make us unique. No two people have the exact same DNA and therefore we’re all a little different. We cannot be fixed like computers on an assembly line. This is one of the reasons why I constantly advocate for listening to one’s body and using one’s intuition rather than relying solely on textbook knowledge when it comes to the healing arts.

Such experiences can be scary and disheartening. We’re taking supplements, vitamins and minerals to feel better; of course we don’t want them risking one iota of our precious health. While some would be tempted to give up supplementation and treatments that are considered holistic, I look at this experience as an opportunity to learn and grow. After all, supplements didn’t cause my CAS. I simply made a mistake by not heeding the absorption potential of aloe as a warning as well as a benefit and giving it the respect it deserved. Natural medicine has given me far more than it’s ever taken.

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Paroxysmal Dystonia

paroxysmal_dystoniaOne of the things that has kept me away from my blog for so long are fits that I have self diagnosed as paroxysmal dystonia.  At this point, they are self diagnosed because my Neurologist-make that FORMER Neurologist-thought it was simply sufficient to put me through an EEG to verify that I wasn’t having epileptic seizures and shrug his shoulders (even though I was having several a day) without diagnosing me at all. So, as I am often forced to do with my army of lazy, incompetent doctors, I did my own research and diagnosed myself the same way they do, based on symptomology and the process of elimination. If I’m wrong, I will let you know. I have a consultation with a new neurologist at the end of July. Hopefully this guy knows his stethoscope from his asshole.

I have gotten to where I can feel these attacks starting to come on, first and foremost in my diaphragm, high in my abdomen, under my ribs. It begins to tighten, like I’ve been punched in the stomach. During these attacks, one or more muscles or muscle groups (usually an arm, leg, and/or my neck and almost always my diaphragm) begin to spasm and jerk, flailing uncontrollably, while the rest of my body is stiff and unresponsive. My diaphragm causes my trunk to bend and jerk and forces the air from my lungs. I am aware the whole time, though I feel a bit spacey. At some point, I begin to have tachycardia, sometimes it starts beforehand, sometimes during. I sometimes make noises, but they are completely involuntary. Toward the end or just after, my limbs feel heavy, my extremities and face go numb and a headache blossoms in my forehead. On my worst nights, I will have 3 or 4 in a row. I rarely ever have them during the day.

Here’s another case study that’s interesting, if you want to read further: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3002546/

I strongly suspect that these fits are exercise induced, though I cannot confirm this for sure. My first fits happened some 3 or 4 years ago and happened only twice afterward in the intervening years until this spring. Then they began to happen everyday, several times a day. They began at the same time I experienced severe post-exertional malaise from attempting to do some very simple physical therapy exercises to try to build up some muscle tone and stamina.

I’ve been in the severely ill category for a couple of years now and I finally got my PoTS under control and was hoping to advance further by adding some exercise. It backfired terribly. I either ramped up my exercises too quickly or just couldn’t handle it over all. I knew I was getting tired, and I put myself on total bed rest right away, thinking I’d be fine in a few days. Since I was on total bed rest, I decided not to drink any ORS and for the first few days I didn’t wear my compression hose. I figured I was laying down, what would it hurt?

This is when the paroxysmal dystonia not only came to visit, it moved in. It occurred to me after two weeks of total bed rest that they had tapered down to one or less a day when I went back to wearing the compression socks and I began to wonder if the PoTS might have something to do with it, so I put myself back on the ORS. Sure enough, the attacks, decreased yet more. When I went on the curcumin at the beginning of June, the paroxysmal dystonia ceased altogether, though I still feel a tightening in my diaphragm sometimes, which I take as a warning that I might be doing more than I should be since I’m up and around a bit again.

I’m honestly not entirely sure how this all goes together, but I know it does in some way or another. Some of my doctors think I’m somehow hair-brained or perhaps just imprudent to make such judgements, but exercising muscles and having those muscles go rogue on you when you have a neuro-muscular disorder makes a supreme sort of sense. And since the body is made up of 80% water, having low blood volume has to fuck with you so many ways it makes my brain hurt to even contemplate (but then everything makes my brain hurt, anymore…literally).

I’m massively curious to know if others with ME/CFS and/or Fibromyalgia have these fits as well. I did read in one place that these are sometimes a precursor and/or comorbid to MS, which is about as surprising as how often ME becomes MS. Mostly, I just want to know that I’m not the only freak out here flailing around like a fish on dry land, painfully aware and endlessly frustrated by my doctor’s inability to care.

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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.