Dr. Bell's 5 subtypes of OI

[kerrilyn]

Not sure if this is in the right section, and I was talking about it in another thread - but I think I was hijacking that thread and have some other specific questions so I started this one.

I've been trying to understand orthostatic intolerance and found Dr. Bell's info about 5 sub-types:
http://www.pediatricnetwork.org/medical/CFS/bell-commentary/oi-intro.htm

I did the poor men's tilt table test today and found that I can stand for 30 mins. After that, I quickly feel dreadful and need to sit IMMEDIATELY or feel like I could faint.

I had to make a chart of my BP readings and heart rate (taking every 5-10 mins) to make sense of it all. Nothing showed up immediately upon standing, that's why I've never thought I had POTS. And POTS is the easiest to find info about.

My systolic rate stays the same throughout, but my diastolic rate is all over the place. It is working it's butt off to keep me standing (ping ponging up and down). The longer I stand the higher my heart rate climbs, then finally it starts to drop again when the the diastolic rate drops more quickly.

I can fit in POTS category if I go by Dr. Bell's info:
"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)"

My heart rate only got up to 90 bpm (not 120) and I was starting to feel pretty awful. It only went up 25 bpm before I really wanted to lay down and then it started to fall as the diastolic rate fell too.

But I think the HR raising is because it's trying to compensate for the diastolic hypotension. Dr. Bell said "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."

I was wondering does anyone else on the forum have this particular OI problem?

What is Neurally mediated hypotension then in his listings, because he doesn't use that term in his article. But NMH and POTS are most 'popular' when searching the net, I couldn't find a lot of info about Orthostatic diastolic hypotension alone for example.

 

[Kati]

Thank you so much Kerrrilyn, this helps-

I have as far as I know systolic hypotension, just from my rheumy's test in her office, which consisted laying down, getting a BP done and then standing up, getting a BP done. Results: 140/80 and 110/80.
In a different dr office, my standing BP was 64/45 and she didn't believe it, took it again and it was back to normal. I didn't feel too good at 64/49 but she didn't believe me.

I would like to be formally tested because at times I notice that when I sit up and exert myself mentally, I get a bout of OI, and have feelings of passing out, chest pain and I feel I can't think anymore (I feel really stoopid). I really wish some doctor- anyone- could understand that.

 

[kerrilyn]

Glad it helped you Kati, it's interesting to see the sub-types info I think.

Today, when I was lying down it was 110/51 (when I finally relaxed), the highest it got standing was 109/80 (after a 1/2 hr) and then 10 mins later (still standing right before I laid down) it was back down to 108/63. My diastolic just bounced around up and down with each reading. Now I'm not even sure if it's diastolic hypo or hyper primarily and which way my body is trying to compensate for it, but the drops were most dramatic. I didn't necessarily notice symptoms by that rate bouncing till the higher my HR climbed in the process while the diastolic bounced low again, then I definitely felt much worse.

Since I was a teenager and had even lower BP than I do now, every doctor has just been thrilled that is was not high. But what good is a low BP if you feel like crap all the time? And amazing none of them checked mine more than once, always sitting.

 

[kerrilyn]

Kati, I was doing more searching and read that if your BP drops when standing it could be a sign of adrenal fatigue/insufficiency. Some sites specify it is more likely if the systolic number doesn't go up 4-10 points, or if it drops upon standing. It's called Ragland's sign or Ragland's test (take BP laying down and then stand up and take it again), you may want to look into that further.

 

[Sasha]

Thanks for posting this, kerrilyn, it's a very interesting thread (I think the thread you were worried about hijacking might have been mine but don't worry, I certainly didn't feel that way! I don't think I answered the comment you put on it very well though!). That Dr Bell reference is very interesting and helpful.

 

[spindrift]

Type 4

I have been having real bad OI. So this morning I took my BP while laying:
110/64, pulse 74

I stood up and after 1 minute:
153/104, pulse 90

After 5 minutes:
170/127, pulse 97

at this point I started seeing little white dots everywhere, so I laid back back down and stopped
checking.:In bed:

It would be interesting to see how others do on the poor mans tilt test.

 

[kerrilyn]

Spindrift,
That is interesting, you and I have very different results for example.

In the last paragraph of Dr. Bell's article he writes "In the next segment I will describe the results in the first twenty new patients I have tested and how it documents disability. This is important as it will directly measure treatment responses with something other than symptom improvement."

That would have been in the June 2000 Lyndonville Newsletter. Unfortunately that pediatric network site skips over that link. Does anyone have the article he mentions?

This is 10 years old now, but I found another link that mentions the sub-type variations too. http://aboutmecfs.org/Trt/TrtOIIntro.aspx and at the bottom of that article are links to other articles, which are very good at explaining OI. Maybe I'll finally start to understand all this info soon.

 

[spindrift]

This might be a bit crazy, but I'll do just about anything to function a bit better.
I ordered myself a g-suit.

http://www.oiresource.com/gsuit.htm

I'll let you know how it works once I have tried it.

 

[kerrilyn]

I don't think anything is crazy if it helps you feel better. Good luck. I definitely want to hear about it!

About 15 years ago I had a few years really severe leg cramps - I thought I'd lose my mind. And docs had no idea what was causing it. Now, I think it was from excess blood pooling. I bought these crazy massager 'pants' that you slipped on and they filled up with air and pulsed. They didn't seem to help with my leg cramps much so I gave them away. Now I wish I'd kept them because maybe they would have been useful for OI.

Sasha, I just had some different questions that I didn't want to bury in your thread

 

[kerrilyn]

Spindrift,
That site you listed has some GREAT links:
http://www.oiresource.com/oiinfo.htm#S8 If you click on the number beside the information it takes to you more detailed research info.

 

[spindrift]

Spindrift,
That site you listed has some GREAT links:
http://www.oiresource.com/oiinfo.htm#S8 If you click on the number beside the information it takes to you more detailed research info.

Yes, that is an excellent website with incredible information.

I told a friend of mine who is pilot that I was getting a g-suit and he was very excited and
explained to me how they work for fighter pilots and his experiences when doing rolls in an
airplane. He volunteered to come and help me fit the g-suit when I get it

 

[Chris]

OI and BP

Hi--very interesting thread--thanks! One of my problems is periodic spikes of high BP with chest pain and general feeling lousy; so I tried the poor man's tilt, as follows:
sitting--126/76, Heart Rate 68
5 mins standing, 125/88, HR 80
10 mins standing, 118/85, HR 80; nothing exceptional there, I think. But:
20 mins later realized I felt agitated, had chest tightness and discomfort--158/101, HR 67.

So the little experiment had set off one of my spikes--not a big one, but there; a bit of breathing meditation began to bring it down quite rapidly, and an hour later it was 129/92. So I learned something--though I felt very uncomfortable and unstable while standing--don't think I would have lasted 20, let alone 30, mins, the real result came a bit later. So something I can take to a doc, if s/he will listen. Thanks! Chris

 

[glenp]

dysautonomia

If you google dysautonomia you will find many variatiions of the disturbances in the autonomic nervous system. My symproms vary and change.

glen

 

[kerrilyn]

Glen, I think mine vary and change too. At the very least they have changed over the years.

 

[Gingergrrl]

I am re-activating this old thread b/c I tried to click on the link (in the first post) re: Dr. Bell's five sub-types of OI but couldn't get it to work. Does anyone know if there is another website with this info? I tried a Google search but couldn't find anything.

When I stand up, sometimes my BP drops dramatically, sometimes it stays identical, and sometimes it raises (although even when it raises it stays pretty low.) I am not sure how to interpret this. All day today I've had shortness of breath and chest tightness again. I'd had 3-4 active days in a row with no SOB/chest tightness so I'd thought Midodrine was the miracle drug. But today I took it and my BP was still around 95/65 like it didn't work and my horrible symptoms were back.

I know I have some kind of OI but my symptoms seem all over the map. I'd love to find that link about the five sub-types. Thanks in advance for any info.

 

[ahimsa]

@Gingergrrl, I think the website OI Resource has the information that you're looking for.

Here's an extract:

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 [intensive care unit] they would panic seeing a BP like that. And she was turned down for disability 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!
   
5. 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.

Below is a listing of the abnormalities and the normal values taken from Dr. David Streeten's book Orthostatic Disorders of the Circulation. In the next segment I will describe the results in the first twenty new patients I have tested and how it documents disability. This is important as it will directly measure treatment responses with something other than symptom improvement.

Normal sBP: recumbent: 100-142; Standing (4 min) : 94-141; Orthostatic change: -19 to +11
Normal dBP: recumbent: 55-90; Standing : 61-97; Orthostatic change: -9 to+22
Normal P: recumbent: 54-96; Standing : 62-108; Orthostatic change: -6 to +27

Orthostatic systolic hypotension: fall in systolic blood pressure of 20 mmHg or more
Orthostatic diastolic hypotension: fall in diastolic BP of 10 mm Hg or more.
Orthostatic diastolic hypertension: rise in diastolic BP to 98 mm Hg or higher
Orthostatic narrowing of pulse pressure: fall in pulse pressure to 18 mm Hg or lower.
Orthostatic postural tachycardia: increase in heart rate of 28 bpm or to greater than 110 b/min.

Reference [of "Results"]: Streeten DHP. Orthostatic disorders of the circulation. New York: Plenum, 1987:116.

Not all doctors use the exact same categories. Dr. Blair Grubb has a different list of five types of response to tilt table testing in one of his papers on orthostatic intolerance:

Abnormal responses to tilt-table testing can be grouped into 5 basic types. The first of these is the classic neurocardiogenic (or vasovagal) response, which is characterized by a rapid drop in blood pressure (with or without associated bradycardia). The second pattern, which we have termed “dysautonomic,” demonstrates a gradual fall in blood pressure (with little change in heart rate) that ultimately results in loss of consciousness (usually seen in the autonomic failure syndromes). The third pattern, a postural tachycardia response, consists of a >30 bpm increase in heart rate (or a heart rate >120 bpm during the first 10 minutes of the baseline tilt). The fourth pattern we have called “cerebral syncope.”43 These individuals will experience syncope in the absence of systemic hypotension, associated with intense cerebral vasoconstriction (as measured by transcranial Doppler) and cerebral hypoxia (as measured by electroencephalogram). The last response is referred to as “psychogenic”; in this pattern, syncope occurs during tilt in the absence of hypotension or of any identifiable change in transcranial Doppler or electroencephalogram.44 These patients have been found to have psychiatric disorders ranging from conversion reactions to anxiety disorders and major depression.45 Individuals with conversion reactions are not consciously aware of their actions. A significant number of young people (especially women) with psychogenic syncope were found to have been victims of sexual abuse. Psychogenic syncope in the abused child or adolescent may represent a cry for help, a cry that should not fall on deaf ears.45

 

[Gingergrrl]

@ahimsa Thank you for posting that link and all the information and I am going to read it all as soon as my brain is working better! I hope to get the results of my TTT at my appt tomorrow and will compare it to what you have posted. I really appreciate it.