Thursday, February 04, 2010

Orthostatic Intolerance and ME/CFS

Copyright: fberti / 123RF Stock Photo
(Updated on 8/21/19)

What Is OI?
Orthostatic Intolerance (OI) is a condition that affects over 97% of people with myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS) - in other words, almost all of us, though you may not even be aware of it, and it also occurs in many patients with fibromyalgia or Ehlers-Danlos Syndrome (EDS), or Lyme disease and other tick infections. OI is an umbrella term that means an inability to maintain a steady blood pressure (BP) and/or heart rate (HR) while upright and includes different conditions, including the two most common in ME/CFS patients: Postural Orthostatic Tachycardia Syndrome (POTS) and Neurally Mediated Hypotension (NMH). Both of these conditions exist outside of ME/CFS and are generally understood by some cardiologists and other medical professionals (though the term OI is used more often specifically in ME/CFS). Some people with ME/CFS have just one or the other, but many of us (including both of my sons and me) have both. And some patients have rarer types of OI conditions, where BP goes up or HR or BP jump up and down. It's all OI, an inability to hold blood pressure and/or heart rate steady while upright.

POTS occurs when your pulse rate goes way up when you are upright (standing or even sitting up). NMH occurs when your blood pressure drops while upright. Some people with severe POTS and/or NMH actually faint or feel dizzy or lightheaded, but for many of us with these conditions our "usual" symptoms just get worse and we feel sicker.

Why Does It Matter If I Have OI?
Even if you don't know you have OI, it is underlying many - sometimes most - of the symptoms you associate with ME/CFS (or with fibromyalgia or EDS or tick infections), including Post-exertional Malaise (PEM). It is a big part of what makes those with ME/CFS "crash" or worsen after too much exertion, and it makes all symptoms worse. The good news is that treating OI often results in improvements (sometimes dramatic ones) in all symptoms, allows you to be more active without crashing, and can greatly improve your quality of life.

Our Experiences Diagnosing OI
I read about OI during the early years of my own illness and shortly after we realized that our oldest son probably had ME/CFS as well, but I didn't think that either of us had OI. Neither of us had ever fainted or even felt light-headed, so I assumed it didn't affect us. Besides, both of us had normal blood pressure during routine office exams. I was very wrong.

My son and I went to see Dr. David Bell, one of the world's top pediatric specialists in ME/CFS, now retired, in December 2003. During our visit, he officially diagnosed our son with ME/CFS and confirmed my diagnosis (I'm lucky enough to have a family doctor who recognizes and understands ME/CFS). Then, he told me about OI. I told him I'd read about it but didn't think it applied to us. He was almost certain it did and asked if he could test my son in his office.

I was stunned by the OI test. Although a tilt table test is the formal method most often used by cardiologists for diagnosing both POTS and NMH, they can also be detected in a simple office test (which is quicker, far less costly, easier on the patient, and studies show may even be more accurate, since it mimics real-life conditions). He had my son lie down for 10 minutes, and a nurse took his resting blood pressure and heart rate. Then he asked him to stand up and stand perfectly still, leaning against a wall, without moving at all or even fidgeting or wriggling toes. The nurse took his blood pressure and heart rate every minute. Within less than 10 minutes, his feet turned purple (that's the blood pooling in lower extremities instead of circulating properly), he complained he was very hot (in western NY in late December!), and he started to feel sick. His blood pressure plunged, and his heart rate went way up. Dr. Bell ended the test after about 8 minutes; he said if they kept going, he would probably faint. He also said he wouldn't test me because I'd probably feel too sick to get the two of us home, but he was certain the results would be similar for me.

This is how OI often affects those of us with ME/CFS. Some people do feel dizzy or lightheaded (some even faint), but for many of us, being upright simply makes us sicker; OI worsens all of our symptoms. In fact, for many people, OI is behind most of our worst symptoms.

ME/CFS messes up our immune systems, endocrine systems, and nervous systems. The dysfunction in the autonomic nervous system (the part that regulates basic bodily functions) results in lower than normal blood volume and difficulty regulating our blood pressure and heart rate. Without adequate blood volume, our bodies have difficulty circulating enough blood to our hearts and brains, resulting in many of the symptoms we identify as ME/CFS.

How To Diagnose OI
As I mentioned above, many doctors diagnose POTS and NMH using a tilt table test (TTT), where the patient is strapped to a table that mechanically raises his or her head, a little at a time. Though the TTT is often considered the only way to diagnose these conditions, it has several drawbacks. It's very expensive, requires special equipment (and often traveling to a hospital or clinic), and is artificial, not reproducing exactly what happens in real life. It can also make patients very, very sick because you are intentionally triggering OI.

In contrast, an in-office standing test like Dr. Bell did for my son is quick and simple and can be done in any doctor's office in about 30 minutes or so. According to one study, it may actually be more accurate because it mimics real-life conditions, and the doctor can easily stop the test (as Dr. Bell did with my son) when the patient meets the criteria and/or gets too sick to continue (which is also meeting the criteria). Here are some very simple instructions for an OI standing test, developed by NASA, that you can take to your doctor. Just be aware that in some ME/CFS patients, OI can take a bit longer to show up and 10 minutes may not be enough. Dr. Bell's instructions and tips provide some extra guidance for this test, focused specifically on ME/CFS patients.

Finally, be aware that OI testing is not fool-proof. In fact, a study recently showed that OI testing only caught 47.5% of the cases of POTS in a single test. The study's authors recommended multiple OI tests. For this reason, it is very important for the doctor to observe and record the patient's reaction, as well as the data on heart rate and blood pressure. In my son's case, the purple feet, sweating all over, and general feeling of sickness would have proved he had OI, even if his HR was a few bpm below the criteria for POTS or his BP didn't fall quite enough to meet the criteria for NMH. Dr. Rowe said that a study in his clinic found that it took an average of 29 minutes for NMH to completely show up in ME/CFS patients. So, ask for the in-office test, but be aware of its limitations, and be sure the doctor observes your response to standing. And if you don't meet the criteria during testing, ask for another test on another day (share that study of the inaccuracy of OI testing with your doctor - it found the most accurate results with morning testing).

For more information (including more medical study references to share with your doctor), see my article on the ProHealth website, What is Orthostatic Intolerance and How to Diagnose It.

You may also find another blog post useful, Challenges in Diagnosing OI, which goes into even more detail on some of the problems you might encounter in trying to diagnose your OI and how to overcome them. It covers topics like what kind of doctor to see, how to conduct the test so it is most accurate, and tips for both doctor and patient.

How To Treat OI
The good news is that treating OI is fairly easy and often brings dramatic improvements in all ME/CFS (or fibro or EDS or Lyme) symptoms. It's been life-changing for both my son and I, allowing us to live more normal, active lives again with few post-exertional crashes. Two ways to treat OI are to increase blood volume and/or improve constriction of blood vessels to help circulate blood better. The easiest way to increase blood volume is to ingest HUGE amount of salt and fluids. I can't emphasize this enough! Sodium and fluids are critical for people with ME/CFS (check with your doctor first to be sure you're not one of the rare people with ME/CFS who has high blood pressure).

Next time you feel particularly sick or have a racing heart, drink a large glass of V-8 or other tomato or vegetable juice (lots of sodium!), Gatorade, or even a glass of water with a 1/2 teaspoon of sea salt in it (it's not so bad with lime in it). It won't cure you, but it helps. I always drink a big glass of V-8 juice before I go to the store to help keep my blood pressure and heart rate steady while I'm upright. My sons used to rely on Gatorade, but when the sugar and artificial colors started to adversely affect them, they switched to GU Brew tablets - they are sweetened with stevia, have no artificial colors or flavors, come in different flavors, and you just add them to water to create a balanced electrolyte drink. My sons also both took salt tablets while they had ME/CFS (one is recovered now and one still takes them). We have always used Thermotabs (we buy the 3-pack to save money) but I've also heard from many patients who are happy with SaltSticks - just be sure to take salt tablets with food because some people get nauseous taking them on an empty stomach. See additional links below for all of these products. This is just another crazy aspect of ME/CFS - the rest of the world is trying to reduce sodium intake while we need to intentionally try to make ourselves bloat!

Kids and teens often respond very well to a prescription medication called Florinef (fludrocortisone) (it rarely works well for adults, though it is worth a try). Its sole effect is to help the body hold onto more salt and fluids, and it is used in tiny amounts. Florinef, in combination with LOTS of salt and fluids, was like a miracle for my two sons. In 5th and 6th grades, our oldest son was bedridden over 50% of the time; he had a home tutor for two classes and made it to the other three about 60% of the time. After starting Florinef, he was able to return to school full-time in 7th grade, rejoin band, and play soccer again. For our younger son, whose ME/CFS was much milder, Florinef plus salt and fluids left him symptom-free about 90% of the time; he rarely even had post-exertional crashes after starting Florinef.

A couple of helpful hints with Florinef: you are supposed to start with a low dose and gradually increase, and you may not see any effect at all until you get to the right dose for you or your child. Some children I know started with too high a dose and had side effects but did well with it once they started low and gradually increased. We did that but were ready to give up on it after several months with no effect when Dr. Bell advised raising the dose one more time, to 0.2 mg (2 pills) daily - it was like someone had flipped a switch! When our son got older, he again increased his dose to 0.3 mg daily. Also, Florinef only works with large amounts of sodium and fluids. Our boys drank 2-3 liters of Gatorade every day (now the older one drinks about that much water with GU Brew in it). If one of them skips his electrolyte drink or doesn't drink enough, he feels worse the next day. Finally, Florinef alone isn't enough for some people; Midodrine (a vaso-constrictor) is sometimes added.

Unfortunately, Florinef almost always helps kids and teens and rarely works on adults, but there are other medications that may help adults (and kids, too), particularly low-dose beta blockers. Beta blockers work by blocking certain hormones in order to keep heart rate down and stabilize blood pressure. The first time I took one, my heart rate decreased about 30 bpm in the very first hour, bringing it down to normal levels for the first time in years! That alone allowed me to be more active without going over my limits and causing a crash/relapse. Starting beta blockers was another life-changing treatment for my older son and I (read more at the link). They have allowed us both to be much more active, without post-exertional crashes. To learn more about WHY this works and how to use a heart rate monitor to help quantify your limits, read my post on Heart Rate and Post-Exertional Crashes in ME/CFS. Both my son and I now rarely crash from over-exertion and have greatly improved physical stamina. I can now walk for over an hour...with no crash after!

Some medications that you may take for other reasons help OI: for example, birth control pills and SSRIs (a type of anti-depressant) help increase blood volume and decongestants (particularly pseudoephedrine aka Sudafed) are vaso-constrictors. In fact, if I have something to do in the evening (when my beta blockers are wearing off), I sometimes take 2 Sudafed to help with OI.

Besides ingesting more salt and fluids and trying medications, some simple adjustments help, too, like moving your legs around when you have to stand still. I may look strange standing in the grocery store line flexing my leg muscles, standing on tiptoes, and otherwise fidgeting, but it helps to keep the blood from pooling in my feet. Just being aware of OI can help you. This is why you feel better when lying down than when standing up. Keep your feet elevated while sitting whenever possible (we now have 6 recliner seats in our family room, between chairs and couches!). You can also help to improve blood circulation and prevent pooling in the pelvis and legs without medication by wearing compression garments like knee socks (plain or in cool colors), tights (women's and men's) or compression shorts (Spanx work great!) - in addition to the links here, there are more at the end of this post for more options.

For more information, see my article on ProHealth,  How To Treat Orthostatic Intolerance, and for more detail and lots of tips from experience on how to make treatments (especially Florinef and beta blockers) work best for you (they can all take some trial and error), see my blog post, Challenges in Treating OI.

More Information on Orthostatic Intolerance
A wonderful pediatric ME/CFS specialist at Johns Hopkins, Dr. Peter Rowe, first discovered OI in his pediatric ME/CFS patients and pioneered its treatment. There is an excellent article on diagnosing and treating OI written by Dr. Rowe that I highly recommend you read and share with your doctor. The article covers both diagnosis and treatments, including medications, sodium intake, and lifestyle changes. There is also an excellent summary of OI on Phoenix Rising that includes most of Dr. Rowe's information. Dr. Rowe is an amazing person - although he's rarely able to take on new patients, he's very willing to work with your own pediatrician or doctor through e-mail and phone calls. He spent hours on the phone with our sons' pediatrician, helping her to become comfortable treating OI in ME/CFS; she's now our own local expert! Though I highly recommend the article, especially for sharing with doctors, you can also watch Dr. Rowe's webinar on OI. And I wrote my own 2-part article on Orthostatic Intolerance for the ProHealth website that includes the research studies the information is based on, so you can share that information with your doctor (click References at the end of each article to view and print them) - Part 1 is on Diagnosing OI and Part 2 is on Treating OI.

And even with all that, I wrote two more blog posts on Orthostatic Intolerance because although almost all of us have some form of it, it's not always simple to detect it or to find exactly the right treatment(s) for you, so check out Challenges in Diagnosing OI and Challenges in Treating OI, both filled with loads of useful tips based on research and personal experience (from both my family and other patients).

Well, I think that covers the main points, but I urge you to read some of the extra information linked to here. Treating OI can result in great improvements for ME/CFS, fibro, EDS, and Lyme patients. It's one of the top areas that should be addressed, along with correcting sleep dysfunction and immune dysfunction.

Ironically, as I was sitting up on the couch typing this (in 2010, before I started beta blockers), I began to feel hot all over and sick, and I realized my own OI was acting up! I finished this post lying down, with my laptop on my lap. Once you understand OI and recognize its symptoms, you have more control over your ME/CFS. OI symptoms are your body's way of telling you that it can't circulate enough blood to the brain and heart and that you need to lie down. I think I'll also drink a V-8 before I go to pick my son up. Cheers!

NOTE: That last paragraph was written back in 2010. Now, with beta blockers, I am easily able to sit up all day without my symptoms increasing and no longer need that pre-store V-8, though I still sometimes use that strategy if I'm feeling poorly or will be especially active. With low-dose beta blockers, I can even exercise now! I have worked up to being able to manage up to 90 minutes (sometimes even 2 hours!) of walking or hiking at a time - wearing my heart rate monitor to stay below my AT - and am planning to walk a 5k later this year!! I can also do some weight training now, which has further improved my condition overall. Crashes due to over-exertion have become very rare for both my son and me.

For more information, see these resources:

Dr. Rowe's OI Summary Brochure (good for sharing with doctors)

My own 2-part article on Orthostatic Intolerance, published on ProHealth (also good for sharing with doctors, as it is footnoted with scientific references)

Heart Rate and Post-Exertional Crashes

Challenges in Diagnosing OI

Challenges in Treating OI

Tips on Using Beta Blockers and Finding the Right One for You

Note: This post contains affiliate links. Purchases from these links provide a small commission to me, to help offset the time I spend writing for this blog, at no extra cost to you.

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Toni said...

Terrific post, Sue. No wonder you win health blog awards! Now I know why Florinef didn't work for me. I was stubborn and kept taking it for years even though I could sense it wasn't doing a thing for me. Then I titrated off it just to see difference.

I'm lucky that I have very low blood pressure so I just salt my food as much as I can bear and drink a lot of water...and always have a chair nearby.

Lori P said...

Wow what a great article! Last night we were discussing something, I don't remember exactly, but it had to do with something you've had all your life but weren't aware of. Anyway, Jes told my husband that it was like her neurally mediated hypotension. She had it for as long as she can remember, but thought that it was normal and that everyone who stood up suddenly "blacked out". We can laugh about it now.

She actually craves salt and yes, the Florinef plus LOTS of salt help tremendously.

Thanks again for the post.

Sue Jackson said...

Lori -

Funny what you think is normal, huh? Jamie was like that when he got his glasses - he thought everyone got headaches when they watched TV!

A teen girl with CFS who lives near us has POTS so bad that she was fainting multiple times every day! Florinef and Midodrine have helped a lot.


Sue Jackson said...

Toni -

Same with me! I knew I'd forget to mention something in this post...I tried Florinef, too. I went up to the typical maximum dose and saw no effect (other than gaining 7 pounds in water weight!!). Dr. Rowe says he doesn't know why Florinef rarely works in adults, but I wonder whether we just don't get to a high enough dose, after our experience with Jamie. He's now at 0.3 mg, which is above what's typically given but approved by Dr. Rowe for Jamie.

I think just understanding OI helps a lot....knowing when to lie down, when to wiggle your leg muscles, etc. You gotta know when to fold 'em, know when to hold 'em, know when to walk away, know when to run...

Ok, I'm getting silly now - I should get the kids and myself to bed!


Dominique said...

Excellent post! I have been having these kinds of problems for years and new they were part of CFIDS but didn't have a name to it. Now I know why I crave salt.

I love Dr. Bell. He is an incredible human being and an incredible doctor and defender of CFIDS sufferers.

I grabbed the other two articles and will read them later. I actually am feeling light headed at this moment! So time to lay down.

Thanks again for taking the time to share all of this!

Dusty Bogwrangler said...

That is so spooky. I was just thinking to myself yesterday after I saw it mentioned - well, what is this OI anyway? So thank you for answering my question perfectly.

My blood pressure is a little high actually and I don't get the dizziness. However, I do have problems with temperature fluctuations and balance so I'm wondering if they are connected. I've been taking an SSRI for ages and have recently increased the dose and am certainly feeling better physically.

Hmmm, interesting.

San said...

Great post! I am on this diet followed up by a doctor specialised in ME/CFS here in Belgium and I have to eat a lot of salt and drink an enormous amount of water per day. I just never realised why exactly. You have certainly clarified a few things here! I can't eat any spices or herbs. So you can imagine what my life looks like when I go out for lunch somewhere: 'No herbs/spices... And salt, please...'. I even have waiters lecturing me about how bad the salt-intake is for my health. I already knew it had a good effect on me and now I also know why. Cheers!

At Home on the Rock... said...

Hi Sue -- I've 'seen' you around blog land and am glad to find your blog. Thanks so much for this post! I am a fairly new CFS patient (dx in Dec. 2008) and am slowly making my way through all the available info out there.

Hmmm...I am one of those people who didn't think POTS affected me....but after reading this post, I'm not so sure. I do know, it bothers me terribly to stand up for too long, although I'm not sure why...I never really thought about it more than to think it makes me tired. I am going to pay attention to this and see exactly 'what' I am experiencing/feeling and why standing bothers me so much.

I do know I have a very bad salt craving (I've had to fight the urge to eat salt right out of the salt shaker) and have never understood that either. I've got something to work with and look into.

Thanks again. :)

Never That Easy said...

Great post - you covered so much here! For me, the TTT was the worst of all the procedures I've had so far (including a biopsy, which, at least they knocked me out for), because the person who was running it didn't trust the first readings and kept me upright until I passed out.

I'm so glad you mentioned that Florinef doesn't always work, because my POTS is still uncontrolled, but not because I haven't tried everything that the doctor's have suggested - it just didn't work for me.

Sue Jackson said...

So glad everyone is finding this helpful!!

Yes, good point that I forgot to mention - a full tilt table test will almost certainly cause a severe crash for anyone with CFS. That's why Dr. Bell didn't test me that day - I still had to drive us to Buffalo, fly with Jamie to Philly, then drive home to Delaware and he was afraid I'd crash too badly to get us home. Dr. Rowe often says if you have the history (CFS) and the symptoms, go ahead and try treating OI.

To At Home:

Sounds like you're right where I was before we saw Dr. Bell! Give into those salt cravings - your body is trying to tell you something - and now you have an excuse to eat salty snacks! Seriously, pretzels, potato chips or salted nuts in between meals help a lot. I used to hate salt (pre-CFS) and cooked very low sodium. Now I love salty stuff - your body adjusts!


Renee said...

Hi Sue
This is really good and I am so glad you wrote it for all of us. We have been trained to avoid salt and I never salted anything b/f seeing my LLMD nor added salt to anything. lately I have been craving salt...I use sea salt and have once or twice just eaten it "straight". Now I know body wants it! I am fueled with info now on this and realize it is important for my health to manage it. Thank you Sue.

Kerry said...

Fantastic and thorough explanation of Autonomic Dysfunction in CFS. Thank you Sue as it is a major part of the you said a part that IS understood by the medical community...yet few understand it.

I have had both tilt table test (fainted) and heart monitors which tested positive for POTS. I was on bedrest during my last pregnancy due to these conditions causing such a skyrocketing HR.

Do you find that salt water actually tastes good to you? I do, which makes me know my body needs it. Sometimes I even crave it. Along with V-8 pickles are an awesome salt source.

I appreciate your gift of research and communication--awesome OI/POTS educational post!

Kerry said...

Sue--Want to ask you about the leg thing...making sure we move and wiggle them, know when to hold them and fold them and all that fun stuff. Do you get pain in the bottom of your legs, or have you heard of that with OI/POTS? I've recently developed severe pain in one leg that includes electric shock sensations--no swelling and not restless leg syndrome. CFS doc. is leaning towards it being nerve pain. The pain lessens when I'm on my feet or moving wondering if in your reading you've heard of such symptoms in connection with Autonomic Dysfunction.

pS--Know you are not a doctor, so no disclaimer necessary...but you are quite the resource!

Sue Jackson said...

Kerry -

I'm not familiar with the kind of leg pain you're describing, though I have heard of it from others with CFS. I only have the classic-CFS type of leg pain - flu-like achiness in my legs and hips.

As for the advice to move your legs around, Dr. Rowe's article includes a much better explanation than I managed here, with lots of specific tips - I highly recommend you take a look. Maybe he even mentions the kind of pain you're having (it's a long article - I don't remember all of it).

My own doctor always tells me - "Never ignore new or changed symptoms! Even though it may be "just" CFS, you're just as likely to develop other medical problems as anyone else." Always check out new symptoms with your doctor, as you're doing. Maybe a neurologist could help diagnose?


Pamela said...

Excellent post, Sue, thanks for spelling it out! I've had orthostatic hypotension for as long as I can remember and fainted a LOT as a young adult. A doctor suggested that I eat more and intake more salt. It's interesting that at that time I didn't have (or at least know that I had) CFS yet. My aunt, a nurse who also has OH and a vasal-vago response, suggested a tilt table test, which I've never had done but I'm pretty certain what the result would be. Like you, I'd prob be too weak to get back home!

Dominique said...

Sue - if you have a moment, I have a question. Does the OI also affect our arms. I have gotten to a point where I cannot raise my arms above my head for more than a minute before it feels like everything has just fallen downward.

I can't hang curtains, can't paint, nothing that requires me to lift my arms upward.

No rush to answer...I've just been thinking about your post today.

Have a wonderful weekend.

Sue Jackson said...

Hi, Dominique -

I don't know if OI affects arms, but I guess it makes sense that poor circulation and low blood flow would affect all limbs.

I can't do much with my arms raised either. I've always just chalked it up to poor stamina in general, but it's quite possible it's due specifically to OI. Seeing how dramatically my kids improved with OI treatment tells me that Oi affects almost every aspect of CFS and underlies many of our symptoms.


Lala said...

Ladies it’s not exactly on to the point of discussion, but if you allow..
I wanted to ask if any of you tried this famous lightening process or Ashok Gupta therapy?
Seems like a reasonable thing especially the latter.

Thank you

Sue Jackson said...

Jana -

I'm not familiar with either of those treatments.


Three Chord Monty said...

It definitely affects my arms, and raising them is difficult. Similar to how most activities that incorporate anything resembling aerobic exercise seem to affect me. Perhaps it has something to do with requiring the heart to pump blood a further distance, given that it seems to be difficult to begin with just to get it to one's head when standing or sitting upright.

I was curious if there was a source for the 90% statistic? OI does seem to be one of the most commonly found physical abnormalities in CFS/ME, and one, I would think, that skeptics would least be able to question. Yet figures seem to vary and I haven't seen much beyond Dr. Rowe's Johns Hopkins study and one involving twins that was presented to me as a refutation. Since Peter White has advised NICE that tilt-table tests should not be performed on UK patients, I'm hardly surprised it's not easy to find a ton of studies on it. This isn't exactly a burning area of interest in medicine.

The Lightning Process and Gupta's Amygdala retraining are both looked upon with no small skepticism by fellow patients. Both claim cure rates and offer testimonials, but, both being UK-based, one would guess there are more than a few patients diagnosed with "M.E." whose primary diagnosis perhaps should have been depression or another psychological or psychiatric condition known for, and capable of, producing CFS-like symptoms, including severe fatigue. It would seem, not coincidentally, that a tilt-table test would be a handy tool for distinguishing between the two.


Gupta speaks more specifically towards CFS/ME sufferers in language that we would generally understand, and on the surface it probably seems the more credible of the two. Of course, there is always the possibility that either or both therapies/techniques have helped people who are correctly diagnosed. However, I would be interested in seeing a study that dealt with efficacy in patients who came up with an abnormal result on...a tilt-table test.

Based only on reports from the internet, both involve a requirement that people repeatedly talk themselves into trying to believe that the power to heal themselves is within, and thinking positively is a major key. Gee, thanks, fellas. No sh*t. Sign me up.

Of the two, the Lightning Process has been described as being more 'mercenary' in certain ways. Patients are bound by confidentiality, and there has been much criticism that it's an expensive therapy offered to an extremely vulnerable population, much of which depends on government assistance.

I would not counsel anyone to not pursue treatments that may be helpful, but given that this is a post about orthostatic intolerance and tilt-table tests, I can't imagine thinking of the Lightning Process or Amygdala retraining as 'reasonable' options.

Anonymous said...

I can always think better lying down and need to lie down about 12 hours a day in order to keep from getting more ill. I have a new very small laptop that is light enough to sit on my stomach so I can read/study lying down. I think this will make doing my school work less draining. I've felt faint many times in the past while standing or sitting, which has made it difficult to do presentations or work that requires standing. Yet, I'm reluctant to add much salt to my diet.

Do you still take LDN? Thanks for your blog, it is wonderful.

Sue Jackson said...

Three Chord Monty -

Thanks for the extra info! Yes, I got the 90% figure from Dr. Rowe's study at Johns Hopkins, but also both he and Dr. Bell have told me that almost all of their CFS patients have some form of OI. From readings, I think it's the same for the other top CFS docs (Cheney, Peterson, etc.) though I haven't talked to them personally.

By the way, your intolerance to aerobic exercise is yet another aspect of CFS but has more to do with problems at the cellular level (something known as oxidative stress) than with OI (though treating OI can help to improve your stamina) - maybe that's the topic of my next informative post!!


Sue Jackson said...

Anonymous -

It sounds as though you have severe OI - treatment of it might help you quite a bit. You should at least talk to your doctor about it.

Yes, I still take LDN and am planning to post an update soon.


At Home on the Rock... said...

Hi Sue

It's me again :)

I just wanted to leave another comment about this post. Wow! I have read it as well as the links you've provided here and am shocked. I cannot begin to tell you how much all of this has helped me!

Standing in lines made me light headed, dizzy, winded, swollen (legs, arms, abdomen) and feeling like I was going to faint. I thought it was because I was really out of shape.

We have a pub style kitchen set (higher chairs with feet up off of the ground to eat). I could hardly get through a meal and then needed to get to a bed or a regular chair. Again...light headed, feeling faint and swollen... I thought this was a digestion problem.

I craved salt...all of the time. I was 'swelling' and thought I needed to cut my salt intake further.

After reading your post/links...I've implemented a lot of the suggestions. Wow! I'm amazed at how much better I feel (and it's only been a couple of days). I do not swell nearly as much. Moving my feet and legs at the dinner table enables me to stay for the whole meal...and no swelling or lightheadedness ( that a word?)

I went shopping today (didn't brave the time though) and I kept flexing my feet, legs etc., whenever I found myself standing still. Even when I don't stand in a line, I usually leave the store feeling really crappy. Not was amazing.

Thanks again for this post and all the info/links you provided.


Sue Jackson said...

Linda -

What wonderful news!! I'm so glad to hear you're doing better. Just understanding OI helped us, too.

And you're right - sitting with your legs dangling is horrible for OI! I have to remind my doctors of that when they expect me to sit on the exam table while we talk. I just sit up there during the actual exam. We have stools at our kitchen counter, too - I keep a footstool under one to rest my feet on.

With such dramatic results from simple adjustments, you may be one of the people who will respond well to OI treatment with medication - might be something to discuss with your doctor.

Hope the improvement continues!


Anonymous said...

It's me again... Thanks. I'll at least start drinking V-8 and see how it goes... at least I don't need to cajole a prescription to do that. :)

Best of health to you and your family.

Ginny said...

Hi Sue,

I've read your blog for a long time but I don't believe I've commented before because I'm not a sufferer of CFS. I do, however, have POTS and this was an excellent summation of a frustrating condition. Taking a low-dose SSRI and upping my salt intake has made me functional again; I love salt so much I will even drink olive juice straight out of the jar. We're beginning to suspect that my son may have or is developing OI. He attends Catholic school and becomes ill at every mass; specifically when he has to go from sitting to kneeling or standing to kneeling. He feels faint and hot and nauseous. I can't attend mass for the same reason. We have an appointment with his pediatrician on Tuesday and I'd like to print out your post to take along so I can remember our talking points. Thanks again!

Sue Jackson said...

Hi, Ginny -

Thanks for introducing yourself and taking the time to comment! POTS sufferers are welcome - we have a lot in common, even if you don't have CFS.

Yes, church services are tough with OI, especially Catholic mass!

It does sound like your son also has POTS or maybe NMH or both - did you know that it often runs in families? Like I said in this post, Florinef often works like a miracle for kids. We waited a long time before having our younger son offically diagnosed with CFS (he was very young, and we didn't want him to take on the label of "sick kid" before he had to), but it was a huge relief when he started Florinef and went from missing 45 days of school a year to only missing 12-15 now!

Good luck with getting your son diagnosed and treated.

Your comments are welcome here anytime!


P.S. I LOVE olives!!

Anonymous said...

Hi, Here's an article about the importance of balancing sodium with potassium, that put me at ease about adding a bit more salt to my diet, at least in the form of vegetable juice, which has equal amounts sodium and potassium. Hope it is useful to someone else.


Sue Jackson said...

Great point about potassium!

Dr. Rowe now makes it standard practice to prescribe potassium supplements for anyone on Florinef.

And V-8 does have a nice balance of the two.

Thanks -


Unknown said...

Thanks for the link, Sue. I might look into this- I can't stand for very long and when I do my legs and feet ache like crazy and I get like what I call a hot flush (!) and feel clammy. I've just put it down to CFS, but might ask my doctor about it. I've noticed lately I feel slightly better if I've drank loads.

Thanks for posting this!

Unknown said...

Fab post Sue thank you! Wow, no, I didn't know any of this and I did faint recently and it has been very bad and I have never known what it was, apart from just another CFS symptom! Thanks for keeping up with my site too. Hope you're doing well. Keep the great posts coming! :-)

Sue Jackson said...

You're welcome, Sophie! So glad you found this information helpful. Read that article by Dr. Rowe that I linked to and share it with your doctor.

LOTS and LOTS of salt and fluids and you should see an improvement in your symptoms. In fact, I can tell my OI is acting up this morning (heart palpitations), so I'm going to pour myself a big glass of V-8 juice now!

Good luck - I'll be interested to hear how it goes for you!


Anonymous said...

Thanks for sending this great post of yours my way, Sue. You are right, I probably do have OI, but seem to have maybe a mild to moderate dose of it. I drank a V8 before going to the gym this morning! I think it helped!

Sue Jackson said...

Glad to help, Judy!!

Some experts think that OI is really behind many of the symptoms we associate with CFS.

Hope the V-8 helps!


mto said...

You needn't drink a glass of salt water if you don't like it plain! Just keep chicken or vegetable boullion cubes or packets with you (low fat is ok, as long as it is NOT low sodium!), and just ask for a cup of hot water (like for tea). Chicken soup is good for EVERYTHING!

Anonymous said...

My grandfather fought in WWII in Papua New Guinea and they were required to take salt tablets every day to prevent dehydration. He could not kick the salt habit even after he returned. I can't help wondering whether his salt habit somehow got passed down, because I have OI and am struggling to control the symptoms. Will give the veg juice a try and see what happens. Thanks for the tip.

Anonymous said...

Wow - I can relate to so much of this. Thanks for posting this and the link to the article by Dr. Bell.

I have ME, fibromyalgia, and possibly endometriosis. I also have a high sitting resting heart rate. I have not tested my heart rate at other times but I will now! I also get an overly strong heart rate sometimes. And of course, I have problems with being able to increase my exercise beyond low amounts.

It often gets dark when I get up too quickly. I fainted into a litter box once when I was in my early twenties as well as other fainting episodes.

I have a terrible time standing too long, being upright too long, sitting at a desk and computer too long. I will get exhausted and nauseous from it. I feel much better laying down propped up by pillows. Even going and lying down a few times in the day at work help me. As well as doing some stretching and walking and movements on breaks at work.

I've had major issues with hormones and nausea and exhaustion - taking the birth control pill continuously has helped greatly.

I also love salty foods. I've also noticed that salty, savoury food helps me when I'm nauseaus and exhausted.

Knowing about this is a huge help - thank you!!!

Sue Jackson said...

Glad you found this post so helpful!! I know just what you mean - learning about OI really explains a lot about CFS, doesn't it?

Just thought you might also be interested in a couple more recent posts on monitoring your heart rate to avoid crashes:

And on my use of beta blockers to reduce my heart rate:

Hope these help also!


Ginny said...

Hi, Anonymous. One good thing to keep in mind is that there are many variants of OI and POTS and what works for one patient can be disastrous for another. I have the hyperadrenergic variant and beta blockers were horrible for me. I've found a small dose of an SSRI keeps my symptoms controlled on all but the worst days. Good luck to you!

Sue Jackson said...

Ginny -

Good point! Dr. Rowe's article talks about SSRIs, too, and I know some people who've been helped very much by them.

Also consider that there are many different varieties of beta blockers, and my doctor thinks I'm doing so well in part because I'm on very low dose, short-acting ones.

I added a note to my blog post on beta blockers about exactly this point - that I'm only writing about my own experience and you must check with a doctor before trying anything. I sometimes forgot to spell that out, but it's an important warning - I'm no doctor!


hayleyeszti said...

Thanks for linking me to this, very insightful

Unknown said...

When I do yoga I can't lift my arms up and look up without feeling faint and I can't come from having my head down to raising my arms up and my CFS isn't too bad. I have adapted yoga to suit. Noticed that I can swim and keep my heart rate down as I am horizontal my heart rate goes up more getting out of the pool!

Sue Jackson said...

Yes, that is definitely OI, too, Alice! I am OK with raising my arms now, with beta blockers, but when I do yoga, I still avoid any standing poses - standing still for too long is definitely bad for OI! I focus mainly on floor poses instead - sitting, kneeling, lying down, etc. Great that you have found some activities you can manage!

Hannah said...

Question: Does everybody not black out momentarily when they stand up? I thought that was something that happened to everyone. Head rush and all that.

I mean, I get that the whole getting dizzy and nauseous and heart rate going wild and passing out thing is CFS/OI related, but is the vision blacking out thing?

Sue Jackson said...

No! ha ha That's not normal - it's OI. I mean of course healthy people occasionally stand up too fast & get lightheaded for a moment but their bodies quickly compensate. But no, it's not normal for it to happen regularly - that's OI.

That's the thing with many of our symptoms, especially if we got sick at a young age - it just seems normal to us & we think it's that way for everyone.

Nicky said...

You don’t understand how thankful I am to find this article! I have CFS and I have every single symptom of OI! Dr’s couldn’t figure it out. No one would help me. I can’t thank you enough!!! ����♥️ I get super bloated in my stomach, what can I do to make that stop? Gonna try those compression tights?