Othostatic Hypotesion- And P.o.t.s

[jenglynn]

Hi,

I have been reading and hearing that P.O.T.S is the absence of Orthostatic Hypotension (But you can have Orthostatic Intolerance). How do I know if I have OI or OH? I was diagnosed with P.O.T.S but I am confused by some of the research I have read which states that if I have OH then I can't have P.O.T.S. I have MANY of the symptoms of P.O.T.S as well... most of them actually. I have a lot of the symptoms of Ehlers Danlos Syndrome- very hypermobile, still at my age at 37. One of my daughters was born with a hole in her heart and a heart murmur (which she still has). I was born with the same "defects". She didn't sit up or crawl until after a year old because she was so "floppy". The doctor said she had some kind of connective tissue issue but wasn't sure what it was (but she is almost 14 so this was more than 13 years ago) But she was so flexible and still is. She has already had 3 syncope incidents in the last 2 years (before my symptoms became severe). My first syncope episode occured at age 13. Doctors could find nothing "wrong" with her when I took her to be checked out after all of her episodes. She was always standing for an extended period of time when they occurred (at least 10-15 min). We both can "pass" all of the hypermobility tests that you can find online. I don't know how important the hypermobility is to the diagnosis of EDS but we both meet a lot of the criteria.

So it isn't possible to have Orthostatic Hypotension and POTS together? It seems like a lot of the members on this forum have low blood pressure issues so I am just looking for an explanation as to the possibility of me having both or what is could be even though I have all of the POTS symptoms. If one just have OH does that mean that they CANNOT have POTS? This has never came up with my doctors and I have a hypotension diagnosis but also a POTS diagnosis. Any insight would be great!!! Maybe I am not the only one confused about this!! Thanks so much for sharing your knowledge!

Jen

[icesktr189]

OI= Orthostatic Intolerance which is the same thing as Orthostatic Hypotension. I have both POTS and OI. Because my blood pressure drops when I stand, my heart rate has to increase dramatically to keep up. Others dont have the drop, but still have the increase and then you have others that have bps that go high upon standing. Its just all a part of dysatuonomia.

You can for sure have both POTS and OI (my cardiologist diagnosed me with both)

[jenglynn]

*Thanks for the response. I've heard it said that maybe POTS is the tachycardia with the absence of Orthostatic Hyotension. I am also diagnosed with both. My blood pressure drops pretty significantly when I stand.. when lying down low normal 85/60 or maybe a little lower or higher with a bpm of 65-75. If I stand for 30 seconds to 1 min it will lower to 50/40 or lower.. lowest recorded in the hospital was 38/20. My pulse will increase to anywhere from 150-190 if not higher. There is a pretty large change. But a lot of the time I am technically "hypotensive" just while sitting. It is usually hard for the nurse to get the initial reading on me while I am waiting to be seen. Obviously, these low numbers are the reason for the constant syncope.

I have just seen a lot of contradicting information on this topic and was curious if anyone had the same issues as I do. Thanks!

[icesktr189]

Well since the diagnosis of POTS is an increase of 30 bpm when standing, bp really has no factor in it, it just varies why each person has the increase. Some high have NE levels that contribute to it...ect.

Mine hr has been above 200 bpm so I really doubt that because I have OI that I dont have POTS lol.

Obviously when my bp gets more controlled, my hr does better because my body doesnt need to compensate as much, but I have had decent reading of bp and horrible hr's. Its just a wonky nervous system

[caroline]

Dani, orthostatic hypotension is not the same as orthostatic intolerance. Mayo Arizona diagnosed me with oi but not orthostatic hypotension because my blood pressure does not drop when i stand, it stays quite high. However, I do show an increase in heart rate that is characteristic of POTS. In other words there is a kind of "intolerance" that doesnt involve low blood pressure. Caroline

[Katybug]

I believe OI is the blanket that covers all of things we are discussing...POTS, Orthostatic Hypotension, or Orthostatic Hypertension. And I'm pretty sure you can have combinations of them (i.e. POTS + Ortho. Hypo., just POTS, POTS + Ortho. Hyper.) I think the distinctions of which you have are important to treat properly even though they seem to result in very similar symptoms.

[toddm1960]

In March of this year the top experts in the field released this definition:

http://www.ncbi.nlm.nih.gov/pubmed/21393070

Here is an overview of each:

2. Orthostatic hypotension

2.1. Definition

Orthostatic hypotension is a sustained reduction of systolic blood pressure of at least 20 mm Hg or diastolic blood pressure of 10 mm Hg within 3 min of standing or head-up tilt to at least 60° on a tilt table. Orthostatic hypotension is a clinical sign and may be symptomatic or asymptomatic. In patients with supine hypertension, a reduction in systolic blood pressure of 30 mm Hg may be a more appropriate criterion for orthostatic hypotension because the magnitude of the orthostatic blood pressure fall is dependent on the baseline blood pressure.

3. Neurally mediated (reflex) syncope

3.1. Definitions

3.1.1. Syncope and transient loss of consciousness

There are several different mechanisms that result in transient loss of consciousness. Causes may be traumatic or nontraumatic; the latter include syncope, epileptic seizures, metabolic disorders, and very rarely a transient ischemic attack in the posterior circulation. The term syncope indicates a specific pathophysiology and should only be used to describe a transient loss of consciousness and postural tone resulting from global cerebral hypoperfusion with spontaneous and complete recovery and no neurological sequelae. When the cause of unconsciousness is not clear the episode should not be called syncope.

4. Postural tachycardia syndrome

4.1. Definition

The postural tachycardia syndrome (POTS) is characterized by a sustained heart rate increment of ≥ 30 beats/min within 10 min of standing or head-up tilt in the absence of orthostatic hypotension. The standing heart rate for all subjects is often ≥ 120 beats/min. These criteria may not be applicable for individuals with low resting heart rates. For individuals aged 12–19 years the required increment is at least 40 beats/min. The orthostatic tachycardia may be accompanied by symptoms of cerebral hypoperfusion and autonomic overactivity that are relieved by recumbency.

[icesktr189]

My cardio told me OI was just a different name than OH? Most reports I have read used them interchangibly (sp?)

[jenglynn]

Now I am confused more than ever So if my blood pressure drops TOO low but I have all of the POTS symptoms and even a POTS diagnosis then I can't really have P.O.T.S. then? What is it then? Any ideas???

[icesktr189]

Jenglynn-

I know that the report says that "in the absence..." but I have seen two cardiologists who told me you can definently have both at the same time. I was a caregiver for a woman who had both also

[mully2014]

OI is the same as OH. I have them along with NCS and POTS. If you have been diagnosed with POTS but have the symptoms of other OH/OI things it probably means you just have that along with the POTS. It most likely isn't going to change how they are going to treat you if you have the OI along with it. Hope this helps.

[toddm1960]

That's the reason this group was put together, to update the last definition which had been in 1996. Doctors are all over the board on definitions and diagnosis, if they even know about dyysautonomia at all. I didn't post this to get anyone upset about their diagnosis, just more information out there.

[HopeSprings]

Sorry if I 've confused you. Whenever I read definitions for POTS, it always said "in the absence of Orthostatic Hypotension," so I wondered what it meant if you had BOTH tachycardia upon standing(POTS) AND a rapid drop in BP upon standing (OH). I've been searching for answers to clear this up and it appears that some Dr's feel that OH and POTS can occur together, while others feel that it cannot. Looks like Dr Grubb (reputable and knowledgable Dr.) feels they CAN occur together. So I guess there isn't a clear cut answer on this and will depend on the Doctor. Like Todd said, definitions are all over the place.

This is from Dinet's list of POTS Symptoms:

• Low blood pressure upon standing (Grubb, Kosinski, Boehm & Kip, 1997) (Some physicians feel orthostatic hypotension is a separate entity from POTS)
  

[MomtoGiuliana]

Maybe things have changed in 9 years (hopefully so--eg more is understood) but when I was diagnosed I was told I had OI and more specificaly POTS. I was told that OI is a blanket term for the various orthostatic conditions including POTS, OH and NMH, etc.

With POTS some patients have low bp and others don't, from what I understand. The definition of POTS is the change in hr on standing of at leat 30 bpm. BP is independent of that.

[HopeSprings]

MomtoGuiliana- that was my understanding too.

There are also other forms of dysautonomia that feature OH as a primary symptom, like PAF, MSA and NCS - BUT with PAF and MSA, they talk about supine hypertension and with NCS they talk about bradycardia - none of which you mentioned. I wondered if your tachycardia was in response to the OH, but when I read up on just OH, there's no mention of tachycardia anywhere. So what's left? POTS. Hopefully this Doctor you're seeing tomorrow will have more definite answers.

[icesktr189]

I didnt mean to offend anyone either I think its all just under the dysautonomnia umbrella

[jenglynn]

Oh my goodness, NO offense taken at all!!! I have read all of the articles/journals you have all referred to so that it where the "in absence of" confused me. I am just grateful to have this forum to be able to discuss this! I know that my OH is pretty drastic but I DO have tachy, which was mentioned before, is not included in the OH definition. My tachycardia is very pronounced...usually at least doubles within 10 seconds of standing, if not triples.

I am hoping for some answers tomorrow. But it seems like the doctors are all over the place on this too... so we just helping each other through this and nagivating the material we have. Thanks to each and every one of you who responded. I will keep everyone posted when I (hopefully) get home tomorrow. There are been mention of keeping me inpatient but it is 2 hours from home so I am really hoping that doesn't happen. I am NOT a hospital girl and would MUCH rather be home. This is just SUPPOSED to be a consult.

Jen

[toddm1960]

I think there two reasons they've added "in absence of hypotension" First is for research, patients with orthostatic hypotension react very differently than people with orthostatic hypertension. This way they can study each group separately. Second is because many doctors still today think you can't have POTS if you don't pass out.

Good luck at your appointment tomorrow Jen, let us know how it goes for you.

[Chaos]

It is a normal reaction for the body to have an increase in heart rate if your blood pressure drops. That's the body's way of trying to keep blood to your head. That's why it is noted as being an abnormal situation for POTS patients to have a increase in HR without a drop in BP.

Physicians at both Mayo and Cleveland Clinic have told me that Orthostatic Hypotension is different from Neurally Mediated Hypotension (NMH) or Neuro Cardiogenic Syncope (NCS). They've said that you CAN have both NMH and POTS, but you can't have OH and POTS. I believe that's what the DINET web pages say as well.

I think the term Orthostatic Intolerance is being used as a blanket term to cover all the various sub-types, similar to how the term "dysautonomia" is used. Since it appears that none of the "specialists" can even agree on definitions of sub-types (hyper vs Low Flow vs etc etc....) the term Orthostatic Intolerence is probably a good one to use. No matter WHAT they call it...we all have the basic problem that we can't tolerate being upright for various reasons.

Also I like the term OI because it seems to be "broader" and covers more symptoms. For example, when I see the cardiologist, he thinks "POTS" so when my HR and BP seem stable to him, I'm obviously better, right? Well, no actually because there are a whole other set of symptoms that still occur when I'm upright but which aren't addressed by the definition of POTS or NCS or OH. Thus the term OI seems to allow for a greater variety of symptoms occurring when you are upright...not limited to just what the HR and BP do.

Todd- thanks for posting the link to that article!

Jenn- Good luck with your appointment tomorrow! Hope the drive over doesn't wipe you out. Let us know how it goes. Sounds like you and your daughter both could have EDS or some type of Hereditary Disease of Connective Tissue (HDCT). For EDS diagnosis it seems that the Beighton score is one of the major criteria and then you need to meet some minor criteria as well. So your flexibility is a MAJOR factor in the diagnosis.

[rubytuesday]

In my case my cardiac specialist in dysautonomia told me that had he seen me a year ago (having all the grafts of my BPs and HRs) he would have concurred that I had POTS. More recent graphs from summer and test at his office that day gave dx of Orthostatic Hypotension (under umbrella of OI). My BP typically runs on low side but if standing, bending, stooping, reaching, lifting, heat, etc. may cause me to faint--sometimes with, sometimes without warning. Specialist explained to me that my autonomic nervous system was failing and I would have fewer warning signs so his aim is to get me hypertensive, then work on the hypertension. Salt is a restriction for me as I am now retaining blood/fluid that pools in my legs (guess that goes with the dysautonomia). With my OH episodes, my BP bottoms out still but the heart rate now ususally hangs in low 60s when that happens. Specialist told me I'd probably need pacer down the road. I still will occassionally have a swing where I have the BP plunge with the tachycardia, but the tachycardia is not nearly as fast as it was when I was in POTS state. So I have both, only moreso the OH at this point.

[HopeSprings]

Also I like the term OI because it seems to be "broader" and covers more symptoms. For example, when I see the cardiologist, he thinks "POTS" so when my HR and BP seem stable to him, I'm obviously better, right? Well, no actually because there are a whole other set of symptoms that still occur when I'm upright but which aren't addressed by the definition of POTS or NCS or OH. Thus the term OI seems to allow for a greater variety of symptoms occurring when you are upright...not limited to just what the HR and BP do.

Yes, exactly!