Is standing tiring but not dizzy when you stand up? Get tested for treatable OI!

[Sasha]

For years I've noticed that I find standing still more tiring than walking, even though I can walk very little, and that I have to sit with my feet up as much as possible because it's tiring when they're on the ground. This weird observation is common with CFS, but I didn't connect it with any of the "orthostatic stuff" - orthostatic intolerance, postural orthostatic tachycardia syndrome (POTS), or neurally mediated hypotension (NMH) because I don't feel dizzy or lightheaded when I stand up from sitting; or indeed, however long I stand.

However, I read that difficulty standing for long is strongly suggestive of OI and that these other symptoms aren't always present so I did Dr Bell's "poor man's tilt test" (you take your heart rate at intervals first supine then standing for up to 30 minutes) and if your rate increases by over about 30 beats/minute, it indicates OI (POTS and NHM are subsets of OI).

My heart rate went up 30 bpm so I went to my doctor for proper blood pressure measurements as well as accurate heart rate measurements while repeating the test and I got the diagnosis confirmed. I've been posting alot about OI in the last week and quite a few other people also said that they had no idea that they had OI until they got tested, again because they don't feel dizzy on standing and misunderstood about this being a major or even necessary symptom.

OI is partly treatable! This is why it's important to get yourself tested if you suspect (from your difficulty standing for long) that you might have it. Treatments include raising the head of your bed, increasing your salt and water intake (under medical supervision), wearing medically prescribed compression tights, eating small, frequent meals rather than a few large ones, doing certain strengthening exercise to get your blood to where it needs to be, etc. There are also drug interventions as a next stage. Cort, as always, has produced an excellent information page on it.

OI is basically about the body's failure to apply the mechanisms to keep your blood volume from shifting down into your legs and abdomen due to gravity when you stand. Astronauts get this when they come home from space and there is lots of research on it. There's a huge overlap with CFS - on it's own, OI is severely disabling and causes exercise intolerance. One estimate I read talked about 66% of CFS patients having OI, so I think it's worth us doing the test!

I'm all excited about having identifed a potentially treatable (though not curable) part of my CFS and am looking forward to trying the various interventions over the next few weeks. I'd like to encourage everyone to consider testing - I'm beginning to think it should be done as standard when we're diagnosed.

 

[HopingSince88]

This is interesting, Sasha. I never considered OI for myself because I don't get lightheaded or dizzy. I share with you that it is easier to walk (albeit slowly) rather than to just stand in one place. I will test myself on this tomorrow. Thanks for that heads up!

 

[Abraxas]

Thanks for the info Sasha. I've definitely noticed standing more tiring than walking too (at the time of the activity), so I might give the poor man's tilt test a try. Apart from more accurate BP measurements, was the test your Doc carried out the same procedure that you did yourself at home?

 

[Sasha]

Thanks for the info Sasha. I've definitely noticed standing more tiring than walking too (at the time of the activity), so I might give the poor man's tilt test a try. Apart from more accurate BP measurements, was the test your Doc carried out the same procedure that you did yourself at home?

Pretty much - I had been lying on a couch in a side room waiting for my appointment for 20 mins when he came to find me so I just stayed lying down while he checked my pulse rate with a finger pulse measuring thing and took my blood pressure (just the usual inflatable cuff, nothing fancy). Then I stood up and he did pulse & BP again; then 5 mins later; then 5 mins later; and then I took my pulse every 5 mins with the finger gadget until he came back when I'd been standing for 30 mins and took my BP again (he was constantly in and out of the room because he was seeing other patients at the same time).

I measured my pulse at home just with my fingers on my pulse, looking at a digital timer with seconds, and counted my pulse usually for 20 seconds and multiplied it by three (otherwise I lost count, if I tried longer measurement intervals!) so his finger gadget would have been more accurate than me.

I read somewhere (I think it's in that Dr Bell link) that heart rate at least is best measured in the morning because there's a circadian variation in OI in terms of heart rate but not BP. So best to get checked in the morning or early afternoon if you can (I was tested at 5pm and still met the criteria, though!).

 

[Dr. Yes]

Hi Sasha... I inserted my comments in purple into your text (energy conservation on my part!):

For years I've noticed that I find standing still more tiring than walking, even though I can walk very little, and that I have to sit with my feet up as much as possible because it's tiring when they're on the ground. This weird observation is common with CFS, but I didn't connect it with any of the "orthostatic stuff" - orthostatic intolerance, postural orthostatic tachycardia syndrome (POTS), or neurally mediated hypotension (NMH) because I don't feel dizzy or lightheaded when I stand up from sitting; or indeed, however long I stand.

When they do a tilt table test (don't remember if you said you had one), they ask you not to move or shift around as movement of your legs in particular can reduce the effectiveness of the test... I think the idea is that the movement of leg muscles reduces some of the venous pooling in the legs and thus reduces the effects of OI (slightly). That may explain why some with OI have less difficulty walking than standing still.

However, I read that difficulty standing for long is strongly suggestive of OI and that these other symptoms aren't always present so I did Dr Bell's "poor man's tilt test" (you take your heart rate at intervals first supine then standing for up to 30 minutes) and if your rate increases by over about 30 beats/minute, it indicates OI (POTS and NHM are subsets of OI).

Btw, that would be indicative of POTS, but not of NMH, which does not involve an increase in heart rate.

My heart rate went up 30 bpm so I went to my doctor for proper blood pressure measurements as well as accurate heart rate measurements while repeating the test and I got the diagnosis confirmed. I've been posting alot about OI in the last week and quite a few other people also said that they had no idea that they had OI until they got tested, again because they don't feel dizzy on standing and misunderstood about this being a major or even necessary symptom.

There may be another factor to consider in our cases, along with OI/dysautonomia.. as Bell in particular has pointed out, many ME/CFS patients appear to suffer from low total blood volume - often extremely low. OI is related to blood volume regulation, but that is a different (and less severe) matter than actually lacking normal total blood volume to begin with! Amazing that no researchers have really followed up on this finding.

There's a huge overlap with CFS - on it's own, OI is severely disabling and causes exercise intolerance. One estimate I read talked about 66% of CFS patients having OI, so I think it's worth us doing the test!

Many viral infections can cause OI or other dysautonomia (usually, but not always, temporarily). This fact alone should make physicians investigate the possibility of these conditions in CFS patients.

I'm all excited about having identifed a potentially treatable (though not curable) part of my CFS [...Really? I hadn't noticed! ] and am looking forward to trying the various interventions over the next few weeks. I'd like to encourage everyone to consider testing - I'm beginning to think it should be done as standard when we're diagnosed.

Yes, at least a "poor man's tilt test" should be done routinely! And the low total blood volume findings really demand further research.

Okay it's back to :In bed: for me for a while... good luck everyone!

ETA - Btw, have you seen the Dysautonomia Information Network website? It has a lot of basic info on dysautonomia, esp. POTS:

http://www.dinet.org/index.htm

 

[OurDayWillCome]

Just a word of caution... increasing salt intake is NOT recommended with the Hyperadrenergic type. It pays to know which type one has because secondary POTS often has an underlying disease that needs to be treated.

About hyperadrenergic type: (note mast cell problem)

http://hyper.ahajournals.org/cgi/content/full/hypertensionaha;45/3/385

 

[gracenote]

Sasha (and Dr. Yes), thanks so much for this. You have made this topic very understandable.

I took my pulse after having been semi-reclined on the couch for a couple of hours, and it was 62 bpm. I then stood for 5 minutes (the thought of standing still for even 10 minutes sounded like torture so maybe could be diagnostic in itself), and my bpm had gone up to 81. That's enough of a trial for me.

My doctor has been wanting me to try Proamatine and/or Mestinon for over a year. I tried a little bit last year but have kept putting it off. The Proamatine made my scalp feel tingly in an irritating way (although that didn't last very long). Yesterday, I took one 60 mg tablet of Mestinon and this morning I took another (about two hours before this little experiment!). I don't quite know what to think. For some unknown reason I feel very resistant to taking these meds, although I don't necessarily have a hard time with medication. We'll see. There are other variables in play right now so it may take me awhile to figure it all out.

 

[Dr. Yes]

My doctor has been wanting me to try Proamatine and/or Mestinon for over a year. I tried a little bit last year but have kept putting it off. The Proamatine made my scalp feel tingly in an irritating way (although that didn't last very long). Yesterday, I took one 60 mg tablet of Mestinon and this morning I took another (about two hours before this little experiment!). I don't quite know what to think. For some unknown reason I feel very resistant to taking these meds, although I don't necessarily have a hard time with medication.

:Retro smile: Hi Gracenote,

I know what you mean. The web site I linked to above has a "What helps?" page that lists some therapies for POTS, including blurbs on Proamatine (Midodrine) and Mestinon that you may find interesting: http://www.dinet.org/what_helps.htm

Keep us posted on your experimentation. :Retro wink: Oh, btw, can you check your own blood pressure? I really recommend you get a blood pressure cuff if you are going to try things like Midodrine (or any med for POTS, really). Midodrine can cause high blood pressure as a side effect, at which point you will probably have to reduce the dose (at least). It is still a commonly prescribed drug for OI, though.

Btw - OurDayWillCome (I hope so), I also found this on the same page:

Beta blockers should be used with caution, if at all, in those with mast-cell activation disorders (Shibao, Arzubiaga, Roberts, Raj, Black, Harris & Biaggioni, 2005). Beta blockers may trigger mast-cell activation.

 

[gracenote]

:Retro smile: Hi Gracenote,

I know what you mean. The web site I linked to above has a "What helps?" page that lists some therapies for POTS, including blurbs on Proamatine (Midodrine) and Mestinon that you may find interesting: http://www.dinet.org/what_helps.htm

Keep us posted on your experimentation. :Retro wink: Oh, btw, can you check your own blood pressure? I really recommend you get a blood pressure cuff if you are going to try things like Midodrine (or any med for POTS, really). Midodrine can cause high blood pressure as a side effect, at which point you will probably have to reduce the dose (at least). It is still a commonly prescribed drug for OI, though.

Thanks doc.

Here's the quote from the link you posted:

Mestinon (Pyridostigmine Bromide) has traditionally been used to treat myasthenia gravis, but is now sometimes being used to treat POTS patients (Grubb, 2002). Mestinon works by inhibiting the breakdown of acetylcholine. Acetylcholine is the main chemical messenger of the parasympathetic nervous system. Some POTS patients may have immune systems that are mistakenly making antibodies that are plugging up acetylcholine receptors (Grubb, 2002). Mestinon works to unplug these receptors by allowing more acetylcholine to remain at the neuromuscular junction. Mestinon is particulary useful in patients who have the postviral, paraneoplastic or autoimmune forms of POTS. Mestinon is usually started at 30 mg orally twice a day, titrating to 60 mg orally twice daily, if necessary (Grubb, Kanjwal & Kosinski, 2006).

I'm surprised that the dose my doctor recommended was 60 mg and only once a day. It didn't make sense to me. (I found other places recommending 60 mg twice a day). I like the 30 mg twice daily recommendation and think I'll try that. Unfortunately, I don't have a blood pressure cuff. That sounds like a good idea.

 

[OurDayWillCome]

Dr Yes.... thanks for pointing out the issue with BBs in this type. This is my type (primary) and I cannot handle BBs.

And if anyone is near Vandy and wants to take part in a study, there is one ongoing:

Purpose

The investigators propose to test the hypothesis that the sympathetic nervous system contributes to the cardiovascular and inflammatory abnormalities present in the chronic fatigue syndrome (CFS) and, in particular in the subset of patients characterized by postural tachycardia syndrome (POTS). CFS and POTS are seen mostly in otherwise normal young women, and are the cause of significant disability. A substantial proportion of patients referred for evaluation of POTS met diagnostic criteria for CFS and, conversely, a subset of patients referred for treatment for CFS have POTS. The investigators hypothesize that sympathetic activation underlies the pathophysiology of patients in whom CFS and POTS overlap (CFS-P).

http://clinicaltrials.gov/ct2/show/NCT00580619

 

[Dr. Yes]

Thanks OurDayWillCome..

You can also post that study information in the "Active Clinical Studies" section in the "ME/CFS News" forum.

 

[gracenote]

Here is another quote from the site Dr. Yes recommended about Erythropoietin also known as Procrit or Epogen. Procirt is what Dr. Peterson prescribed to Corinne see link and quote at bottom of post.

http://www.dinet.org/what_helps.htm

Erythropoietin raises blood pressure and red cell mass. Red blood cell volume has been found to be low in POTS patients (Raj, Biaggioni, Yamhure, Black, Paranjape, Byrne & Robertson, 2005). Erythropoietin is also a potent vasoconstrictor and is quite useful in the treatment of orthostatic disorders (Grubb, Kanjwal & Kosinski, 2006). There may be an impairment in erythropoietin production and/or function in some individuals with POTS. Erythropoietin reportedly works in 80% of patients (Grubb, 2002). One study showed that erythropoietin administration led to dramatic improvements in some patients with orthostatic hypotension (Hoeldtke & Streeten, 1993). However, a later study of (only) 8 patients with orthostatic tachycardia reported that erythropoietin did not help the tachycardia (Hoeldtke, Horvath & Bryner, 1995). Erythropoietin is not commonly used because it has to be injected and is expensive. Procrit is a common medication that increases erythropoietin, which in turn increases red blood cell mass. Patients treated with erythropoietin may need iron supplementation as their hematocrit rises.

Prior to starting erythropoietin, a complete serum blood count (CBC) as well as a serum iron, total iron binding capacity, and ferritin level should be obtained by one's physician (Grubb, Kanjwal & Kosinski, 2006). Erythropoietin can be employed as long as the hematocrit (HCT) is less than 50, and patients appear to achieve the best hemodynamic effect when the HCT is in the low to mid-40 range. The usual starting dose of erythropoietin is 10,000 units injected subcutaneously once weekly, and it usually takes 4-6 weeks to see the full effects of this medication (Grubb, Kanjwal & Kosinski, 2006). Patients should have their HCT checked monthly to make sure it is below 50.

When I was on Interferon for treatment of Hep C, my red blood count kept dropping and so my doctor prescribed Epogen. I loved it. It is one of the few things that has ever made me feel noticeably better right away. However, unless your blood count goes below a certain level, it won't be covered by insurance and it is very expensive. I would gladly pull out my needles and start injecting Epogen again if I could (and I'm not too fond of self-injection). EPO is one of the things they test for in professional bike racing (I think).

From A Visit to Dr. Peterson: Part IV: Spinal Tap, Costs and On the Road Again by Corinne

http://forums.aboutmecfs.org/content.php?22-A-Visit-to-Dr-Peterson-Part-IV

Treatment so far has been limited to Procrit (Im assuming with the hopes of raising my RBC volume and my blood pressure). Dr. P. said that some patients find great benefit with it, but he also told me to just try it without having any expectations. So far it hasnt done a whole lot physically but it has improved some of my numbers. For me it just feels good to be trying something. It isnt overly expensive ($120/month), but isnt covered by my insurance.

 

[kerrilyn]

I'm thrilled at the thought of SOMETHING (anything) being treatable. I didn't think my heart rate was ever an issue because I don't have chest pain or palpations so I didn't realize it was actually raising. Standing has always been difficult and I don't get dizzy immediately upon standing. I get lightheaded when I climb stairs, sometimes the symptoms are dramatic and feel like I could faint (which I never understood). I just thought I was deconditioned and likely I am, but I watch shows like The Biggest Loser and I think how come these participants aren't fainting upon exertion? I know I would be.

I watched Dr. Cheney's 3 hour video presentation a few years ago and I didn't think that pertained to me. But his theory is diastolic dysfunction and when I did the poor man's TTT my diastolic reading was all over the place. I just watched his video and and it's making more sense now. I need to do the home test again because I did shift my weight a bit. My HR didn't get up to 30 pbm before it (and my diastolic bp) started to fall and I had to lay down. I bought a HR monitor today to hopefully get some more info.

There are so many things that can cause similar symptoms http://www.dinet.org/what_causes_pots.htm. I keep having doctors tell me it's adrenal insuffiency, but I'm not convinced.

 

[kerrilyn]

I tried out my new HR monitor. I didn't move my legs at all during this test.

Resting rate was 60 bpm, immediately upon standing went up to 95 bpm very briefly and then back down to 75. Then gradually it kept climbing. After 10 mins it was back up to 95. Just before 20 mins standing it maxed out at 109 and then it started to fall rapidly and within a minute or two it was down to 66 and I had to lay down because I was going to faint. Even laying down it bounced back up to 95 bpm and then gradually came back down to 65 and I started to feel better.

My HR doesn't seem to get as high as POTS patients I've read about. And just like with the home BP test it falls rapidly when it's reached it's max point. So, is this a sign of POTS or NMH?

 

[Lesley]

Kerrilyn, POTS is usually defined as an increase in heart rate of 30 bpm within 10 minutes of standing, so I think you've got it. You may also have NMH depending on how much you blood pressure fell. Isn't it amazing that something so dramatic can be going on and you don't even realize it? And if you don't complain about rapid heart rate, dizziness, or lightheadedness, a most doctors will never take the simple step of taking heart rate and bp lying down and standing.

 

[kerrilyn]

Lesley, I love my new HR monitor Thanks for the link in the other thread too BTW.

When I did the poor man's TTT my diastolic pressure went up almost 30 points after standing 30 mins but systolic pressure stayed the same. And then it dropped rapidly 20 bpm and I had to lay down. It seems odd that just the one fluctuates. And if I'd only taken my pressure supine and then again after standing 35 mins the diastolic wouldn't have looked like it changed much. But it was the climb and then drop, combined with climbing and then falling HR that made me feel like fainting (I think). Does that sound like NMH?

This HR test was more accurate for me. I could stand less time before symptoms started and they were more severe. I think because doing the poor man's TTT I was shifting/fumbling with my automatic BP machine.

 

[Lesley]

It doesn't sound like NMH, but I don't think it's normal. Here's what Dr. Bell wrote about different types of abnormalities they found:

There are five separate abnormalities than can occur during quiet standing:

1. Orthostatic systolic hypotension where the upper number (systolic) blood pressure drops. The normal person will not drop BP more than 20 mmHg on standing up. One patient I follow with CFS had a normal BP lying down (100/60) but it fell to 60/0 on standing. No wonder she was unable to stand up - a blood pressure that low is really unable to circulate blood to the brain. In any ICU they would panic seeing a BP like that. And she was turned down for diability because she probably was a hypochondriac.

2. POTS stands for postural orthostatic tachycardia syndrome. A healthy person will not change their heart rate standing up for an hour. In a person with POTS, the heart rate increases 28 beats per minute (bpm). Some experts say the heart rate should exceed 120 bpm to have POTS. But either way, this increase occurs frequently in CFS. I think the increase in heart rate is linked to the decrease in blood volume. (Orthostatic intolerance has been called Idiopathic hypovolemia in the past)

3. Orthostatic narrowing of the pulse pressure. The pulse pressure is the difference between the lower number of the BP from the higher number. For example, a normal person with a BP of 100/60 would have a pulse pressure of 40. It is actually the difference between the upper and lower number of the BP that circulates blood. If the pulse pressure drops below 18, it is abnormal and blood would not circulate in the brain well. We routinely see in our patients with CFS blood pressures of 90/80, thus a pulse pressure of 10. The current record holder is a young woman with CFS whose pulse pressure fell to 6 mmHg before she passed out.

4. Orthostatic diastolic hypertension. The lower number of the BP often reflects the systemic resistance, and while standing many persons with OI and CFS will raise their lower BP number (diastolic) in an attempt to push blood up to the brain. Sometimes this is dramatic. One patient being followed with CFS had a low blood volume, about 60% of normal. While lying down, his BP was 140/80. After standing, his BP rose to 210/140 before we made him lie down. His pulse went up to 140 bpm. He felt rotten but refused to sit down by himself.

As an aside, everyone thought he was a fruitcake - a healthy looking man who said he felt poorly and couldn't work. He was denied disability as usual. Yet when we did the test, he was so determined to stand up I was afraid he was going to stroke out and croak. But he was standing with a BP of 210/140 and a pulse of 140 bpm. He is definitely not a wimp.

After the test, we gave him a liter of saline in the office because he didn't look too good and his blood pressure fell to 90/60 after an hour or so. It is important to note that we had measured his volume the day before so we knew he was hypovolemic. Normally you would never give saline to someone with high blood pressure, it just makes it go higher. In the future, orthostatic testing will require being done in an intensive care unit because these numbers are so scary. Now it is ignored, and patients with CFS called fruitcakes!

6. Orthostatic diastolic hypotension. This represents a fall in the lower number of the BP, and seems to be the least frequent abnormality in patients with CFS I have tested.

Maybe #3?

The article is here: http://www.pediatricnetwork.org/medical/CFS/bell-commentary/oi-intro.htm It's 10 years old, but I still think it has a lot of good information.

Now stop testing yourself and rest!

 

[leelaplay]

I just noticed Cort's ad for the CAA webinar on blood flow "Trouble Standing? Trouble Thinking?" - and thought it fit well with this thread.

I have another doc appointment and don't know if I can make it back in time for this on Thursday, but it looks good. I hope someone will listen and report back.

Just remember that you have to register for it.

Going With the Flow -- Blood Flow, That Is
Thursday, March 18, 2010 12:00 PM - 1:00 PM EDT

It has long been established that many people with CFS experience symptoms like light-headedness, dizziness, difficulty breathing and sweating associated with upright posture, broadly called orthostatic intolerance.

Is it possible that these symptoms could be connected to impaired blood flow, ultimately reducing the amount of blood that flows to the brain? That's what researcher Marvin Medow, PhD, and his team at New York Medical College are investigating with their grant from the CFIDS Association of America.

Dr. Medow is a physiologist and associate director of the Center for Hypotension at New York Medical College, where he works with Julian Stewart, MD, a longtime CFS researcher.

At this webinar, Dr. Medow will describe his study and the techniques his team uses to measure blood flow and chemical changes that may explain many of the symptoms experienced by CFS patients. You'll learn more about orthostatic intolerance, tilt table testing, transcranial Doppler and microdialysis. Suzanne D. Vernon, PhD, scientific director of the CFIDS Association of America, will moderate the program.

This program is the third in the CFIDS Association's 2010 webinar series. To learn more about webinars in general, please visit http://www.cfids.org/webinar/what-is-a-webinar.asp. Past Association webinars are described and archived at http://www.cfids.org/webinar/series2010.asp.

Thu, Mar 18, 2010 12:00 PM - 1:00 PM EDT

 

[spindrift]

I take some people can actually stand still for 30 minutes? Wow!!! I felt like fainting after 5 minutes. Walking
works way better.

My diastolic BP goes from 72 laying to 137 after standing for 5 minutes. With it jumping up 64 mm Hg I definitely
qualify for orthostatic diastolic hypertension.
Also qualify for POTS pulse increase of 39 after 5 minutes.

This seems to be worse in the mornings and gets a little better during the day.

Talked to my doctor and he said he would read up on it, because he only knew POTS.

Deos anyone know if orthostatic diastolic hypERtension is treated in the same way as POTS?

 

[kerrilyn]

Some people have delayed OI. I fall into that category. That's why taking my BP and HR sitting and then immediately upon standing (which I did years ago), shows nothing abnormal, only a TTT would.

I found a video illustration about baroreceptor reflex control and blood pressure regulation. It explains how things are suppose to work - for anyone who learns easier visually. http://highered.mcgraw-hill.com/sit...eceptor_reflex_control_of_blood_pressure.html