Blood-Deprived Brains - What Does This Do To Your Health?

[comfortzone]

I've been reading about the notion that with pooling and orthostatic intolerance and POTs type things our brains can suffer from not enough blood flow and that means not enough oxygen. Is this really true? If it is it sounds really serious.... So the super important organ the brain is actually starving for oxygen?

What would the long term implications of this situation be? How about the short term symptoms of this.... Curious if this is what people refer to as brain fog ... Did your doctor who knows about POTS tell you about it and describe it as a normal benign occurence - even though it provides troubling symptoms? What are your symptoms of this and how did you find out a lack of oxygen to the brain is what caused the problem? Or is it a lack of blood and therefore glucose?

Has anyone had testing for dementia or alzheimer's or Mild Cognitive Impairment because of their brain symptoms? What happens if you do show a problem here ... is the treatment extreme like wearing O2 or nothing that drastic... maybe medications? Do the support hose and abdominal binders help your brain blood flow?

Has anyone asked their doctors for an MRI because of how troubling this type of symptom is? I think I asked something similar a year or so ago - but can't remember (duh!) what was discussed.

[issie]

Yes, seems that's the general thinking at the moment. I'm trying diamox at the moment to increase blood flow and increase oxygen to the brain. It also helps with CSF drainage and helps some with chiari - since part of the thinking is the drop of the cererbral tonsils affects the brain stem and also maybe decreases the amount of fluid that is allowed to drain from the head area. I also have to sometimes use oxygen - as mine gets low. I have sleep apenea and diamox is supposed to help central sleep apenea because it increases respiration. But, with central sleep apenea the brain doesn't tell you to breathe - so wonder what the diamox does to make the brain work better to tell you to breathe? Other than increasing blood flow and oxygen. So, some are being helped with this and I'm hoping I'll be one of the ones helped with it. You can read more about this on www.prettyill.com . I know it's not yet proven and is a very new thing to try - but, I've tried nearly everything else and it makes sense to me with my symptoms and EDS, MCAS and HyperPOTS. If the theories are even partially correct - this should help. It has helped my edema to be better and I have more energy and can stand for longer without getting as dizzy. I went to a store the other day and followed my husband around for at least 45 minutes to an hour without sitting. Towards the end - I started getting irritable and needed to sit down - so, we left to go do other things. Of course, it was something he was interested in and I was not so much - a sporting goods store. But, it was nice to see that I could do it without hunting the first available chair. So, I'd say there are improvements - however, so slight. But, any improvement I'll take.

Issie

[NMPotsie]

That is great, Issie. I would give a lot to be able to go to a store for that long. I got yelled at at a big chain do it yourself store for sitting on their ladder the other day, so I sat on the floor. It just *****.

[jangle]

I've been reading about the notion that with pooling and orthostatic intolerance and POTs type things our brains can suffer from not enough blood flow and that means not enough oxygen. Is this really true? If it is it sounds really serious.... So the super important organ the brain is actually starving for oxygen?

What would the long term implications of this situation be? How about the short term symptoms of this.... Curious if this is what people refer to as brain fog ... Did your doctor who knows about POTS tell you about it and describe it as a normal benign occurence - even though it provides troubling symptoms? What are your symptoms of this and how did you find out a lack of oxygen to the brain is what caused the problem? Or is it a lack of blood and therefore glucose?

Has anyone had testing for dementia or alzheimer's or Mild Cognitive Impairment because of their brain symptoms? What happens if you do show a problem here ... is the treatment extreme like wearing O2 or nothing that drastic... maybe medications? Do the support hose and abdominal binders help your brain blood flow?

Has anyone asked their doctors for an MRI because of how troubling this type of symptom is? I think I asked something similar a year or so ago - but can't remember (duh!) what was discussed.

There are people who've had POTS for many years and do not have chronic cognitive impairment nor do they show signs of brain volume loss or cellular death.

Alzheimers is now being viewed as an inflammatory disorder, not necessarily a cardiovascular one.

Brain cells do require lots of oxygen but anytime you're not getting enough blood to your brain your brain will let you know by having you pass out, in which case the blood flow will renormalize.

[HopeSprings]

Honestly, I don't understand why Doctors are not more alarmed by this. I had cognitive testing done early in my illness (I was 27 at the time) and the results came back impaired memory and trouble with analytic reasoning and information processing. The tester noted this was below expectation given educational achievement. I don't know how bad it is for others here, but I suffer a lot with this. I often feel confused, my memory is a mess, it's hard for me to process information, I have difficulty absorbing what I'm reading - sometimes seeing or hearing. It almost hurts to think because it requires so much effort - and it doesn't help that my eyes feel out of focus as well. I had one test recently -a Spect Scan - which showed low blood flow to certain areas in the brain. I don't know how reliable the test is, but it certainly showed problems in the right areas. Some of this can be relieved by lying down, which makes me think whatever blood flow problem I have is exacerbated by being upright. However, studies have failed to consistently show POTS patients having brain blood flow problems when upright.... so I don't know. There are times I wonder if I have something more serious going on... and other times I think no, it's POTS, but they (researchers/Doctors) aren't getting how severe the cognitive impairment can be with this illness. Do others feel severely affected in the way I described? Nowwhat! - the only thing I have found to relieve some of this is to lay down.

[sue1234]

I feel severely affected, and pretty much have the issues you listed. My memory is awful to me, but not sure how much of a medical issue it is or isn't(did that make sense?). It is scary to me to think I am probably repeating my stories to my family and they just don't say anything so as not to hurt my feelings. I don't know if my staying home 90% of my time for the last few years would "normally" make people repeat stories or if it is a true cognitive issue. My learning skills are nothing right now. I'd LOVE to take online classes just for knowledge, but I can't remember anything a few days after I read it(well, not enough to count).

I was thinking, yea, your body will faint when that critical point is reached for not enough O2 to the brain. But, what happens in us when it is chronic? Do we slowly lose brain cells, as in so slow that it is not measurable in days or months, but will be measurable in years? IF this would be the case, then how can doctors not take this seriously with us?

[Mytwogirlsrox]

Why is POTS so different for us all?

I don't feel the typical fatigue, brain fog etc.. I just don't get it!

I could be totally wrong, but I look at POTS as a compensatory response, low blood flow somewhere signals tachycardia which maintains BP and perfusion? Why then would cerebral perfusion be affected after the compensatory reaction, unless you have OH? Or vasoconstriction in the wrong spots (ie raynauds) maybe on paper or texts it's doesn't make a whole lot of sense to Drs?

I haven't read up on cerebral hypo perfusion so I could be totally waaaay off

[issie]

You might want to look up hydrocephalus - that's the idea behind the diamox treatment. It causes brain fog and issues with brain swelling and can cause all sorts of autonomic issues. The jury is still out on my trial - but, still sticking with it - so far - we will see. There are good things and bad things with it. I'm having a hard time keeping my body alkaline - it wants to go really acidic with this and that will make you feel bad too. But, I can tell it is having a drainage effect. One other thing I don't like is the ringing in the ears - it's bad. I've been told by some others that have taken it - to stick through the first month and things should start to settle out. So, we will see. My blood pressure is still way too high and my pulse rate is still up there. I can't tell that it's really helping POTS that much. Of course, I seem to be able to stay upright longer. And the pressure in my head is better. I was told it will take the brain a while to adjust back into place and to recover from too much pressure. Still trying to stay the course and see what will happen.

I think that some of our swings in blood pressure and tachy is compensatory - but, what is the compensation for? That is the million dollar question. That's what we have to figure out. Is it pressure on the brain stem - causing issues? Is it chiari and therefore - still pressure on the brain stem? Is it too much pressure on the brain causing issues with function? Is it lack of blood flow and oxygen above heart level and the blood pressure and heart rate is increasing to try to get the blood up to the most vital organ - other than the heart - our brains? That's a good possibility. But, why isn't the vascular system working properly above heart level? What's the problem there? Is there autoimmune issues at play here? Is there an attack on our bodies by our immune system - causing things to malfunction? Is it a genetic flaw in the NET system or some other system - yet to be determined? Is there mast cell issues and the degranulation in different organs is causing the malfunction? I can come up with a million other questions that we can speculate on forever . . .but, until there is more testing and answers to these and other questions ------that's all we get is a whole lot of speculation on our parts. Granted it's pretty educated speculating - but, we are not able to put these theories or hypothesis into action. We have to convince a doctor to look closer and deeper into these things.

It's so frustrating and the best we can do is mask whatever dysfunction is giving us the most grief. But, that causes other issues. I still don't think we've gotten down to the brass tacks of the problem. If there is cerebral blood flow and oxygen flow issues - then get the blood up there and give us a cannula with oxygen to breathe. If we have to go to an oxygen bar and breathe in oxygen for an hour or so ---would that help? I know the diamox is supposed to increase blood flow and therefore, oxygen flow to the brain and help with CSF drainage. It should help with these things if that's the issue. The experiment is on - people - I'll keep you posted.

Issie

[comfortzone]

I do have memory problems, irritibility, lose things daily, miss appointments, get lost easily etc... I've been telling my doctor this for nearly 2 years but it always took a back burner ... Well finally when all this time passed and all the other tests pretty much 'done' for awhile - I kinda begged to have cognitive testing done. So I went to one memory clinic in the city - and as soon as the lady saw I was a patient with chronic pain from EDS - she totally blamed the pain medication.... I was furious because her notes were untruthful.... I take one medication - the same one - for four years ... I have the option of taking another type of medicine as well - but do not. I read her notes and it says many times in the report how the patient is : on numerous potent pain medications and a muscle relaxer. I've only had one doctor prescribe me 'one' medicine that I take - I told my pain doc what this memory clinic said and they weren't impressed at all - yet not shocked at the prejudice and bias against treating pain. They reassured me that my medicine is not looking like an issue at all - but untreated pain can seriously be an issue as far as memory...

The preliminary testing did show Mild Cognitive Impairment - which is pretty much your first step toward Dementia .... The testing took less than an hour. Later when she explained why I got that diagnosis - she said I needed a full battery of testing - but that's when I decided to 'bale' ....

The problems were in the area of executive function which makes multi-tasking difficult - and that used to be my forte' .....

Okay back to the what makes anything and everything feel better? My answer is Laying Down flat on my back in bed..... This is the ONLY way I experience 'relief' of any kind. Not even pain medicine works that well - unless I allow periods throughout the day to lay down.

A 2010 MRI of the brain showed all these bright spots ... the radiologist said things needed to be ruled out like MS, ischemia, toxic exposure etc... - but the real live physicians just laughed them off .... UBO's or unidentified bright objects....

Another thing is that one doctor told me I needed a neck fusion on a couple levels - but I got second opinions - I guess my cord gets flattened mildly .... he said I'd end up in a wheelchair without the surgery - other doctors said no way - don't worry about that

So at a conference for EDS I heard 'all day long' people saying things like it was hard to comprehend the material in the lectures d/t brain fog - said d/t my brain not getting enough blood .... and I'm still confused ---- do we who pool truly have a lack of needed blood supply to the brain? Wouldn't that be very serious? Or is it not serious at all - but it does cause symptoms that make thinking difficult?

If we didn't get enough blood to our brains - on a daily basis - yet enough blood to keep you alive - and if maybe you have an issue with your spinal cord, or neck, or a chiari malformation - then is that fluid path compromised as well? So your brain takes yet another hit with either too much fluid stuck in the brain or not enough getting there?

Anyway - I am going to an entirely different place now for cognitive testing - to see if there is an issue proveable on a test - that matches my experiences in a day - but then if it shows up positive ... of course I'll want to know 'why'..... Hoping they can isolate that by where my brain issues are .... Maybe it's the mild sleep apnea - or my neck - or pooling - ? Thanks for allowing me to type this quandry out lol

[comfortzone]

LOL we were all typing at the same time - anyway thanks everyone for writing - I'm definitely not alone in the question asking part of this I see.... Issie I'm sure hoping the Diamox is a good tool for you ... I am so grateful to be living close to Mayo Clinic - it's no small thing to know in the back of your mind there is a high caliber medical facility just down the road - for no matter what happens.... Helps me sleep better .... squished cord or not, bloodless brain or not, fat head filled with CSF or not, early dementia or not -- having them there - is fantastic .... I'll be paying them for a long time to come - pricey describes it .... but at least no plane fare to get there anymore!

[issie]

I hear you, nowwhat. They are definitely pricey. Yeah, I saw we are both full of unanswered questions. We both are rather wordey - aren't we. LOL

Issie

[peregrine]

As in Naomi's case (in so many ways!) I have severe cognitive impairment from my POTS. In some ways it is less "severe" than the spaciness-while-walking or the presyncope, but rather than being episodic it is nearly constant. I am finding more and more that the reason I don't do as much reading, etc at work as I would like is not from lack of energy or motivation, it's from lack of cognitive ability. Never an auditory learner, I find I am thinking about screenreading software to help me read papers when my eyes aren't working properly. I would say that the spaciness and presyncope are the most disabling in activities of daily living, but the cognitive hit (I have issues with focus, reading/listening comprehension, and speech most of all) is a really big problem, and is the most disabling at work. I set aside the time from 5-7pm as nonproductive time because I've observed I am especially spacey and brainfoggy during that period, which has helped me pace some (worth keeping an eye on how your body and brain work over the course of the day).

I'm not sure of any long-term consequences - I do feel (like others) that doctors have generally ignored these "softer" symptoms and their effects on our lives in favor of the more obvious (and more visibly disabling) things like syncope and tachycardia and chest pain, which is upsetting as they're not always the most disabling ones. Something to talk with the new neurologist about in a month, maybe. We're thinking of maybe trying a stimulant (probably Ritalin) despite my bipolar disorder - just to see if it helps the spaciness (and maybe, by extension, the cognitive impairment).

[peregrine]

Ah, reading all the new posts! nowwhat, what you describe with missed appointments, etc is a "soft sign" that I often forget to mention in my own case. I am much more structured now - case in point, today my schedule got all messed up by other people doing stuff they hadn't announced while I was about to start my own experiments, and I just got so flustered, it was really bad. Or, I'll miss a thing in my schedule (volunteer shift, lunch with a friend) about once every week if I'm really busy, once a month otherwise, and then I just flail for the rest of the day. Everyone is so understanding but... augh, it's really annoying. I just can't deal with sudden changes any more, which is frustrating since life seems to be full of people who assume that everyone else is just as flexible as them :^)

[vemee]

I believe the brain has the same ability as the rest of the body to shunt blood flow from less vital areas to keep the vital functions of the brain going. I can't remember where I read that so I can't state this as anything other than my opinion. I have a high iq but with this condition I rarely function at that level. I can be just sitting and I feel like a drain has been opened at the base of my skull and I feel the life drain out of me. It just happened a minute ago. Afterwards I have memory problems, and am in a daze. Speach problems are also a problems as well as trying to write something.

[comfortzone]

I really do understand this rather harsh life scenario ... and maybe they won't be able to figure out the 'why's' of it .... But the fact that 'it' is ... is distressing. I will get the cognitive workup in about 3 weeks time .... after that I will see the doc in September to learn what if anything I can do about it.....

I was told to use my phone to help me with my appointments - not bad if you can find your phone - I use magicjack for a land line to help me locate it - and not bad if you remember to input the appt.s to the phone - I forget to do this - but I'm working on it.

It is crazy that there is less than a normal amount of easy to access information on this subject - lots of research on different causes of things in the elderly - like anti-cholinergics etc... But why wait until we are 'aged' to tackle this problem ... I attributed a lot of the distress from these symptoms to the stress of chronic illness etc... but when I got to the root causes of many things - this one symptom is ever present and not going anywhere....

I may be looking in the wrong places for the info perhaps - I think brain fog - didn't that come initially to the headlines under FM or CFS? Maybe they have researched this symptom in this population anyway? I'll do a search later today Thanks!

[Friedbrain]

Mytwogirlsrox, that is my understanding, as well-that blood pressure and heartrate work together to make sure blood gets to the brain. Either blood pressure goes up, or heartrate increases (or both). I have low blood pressure and, as I mentioned in a recent thread, my systolic number often doesn't increase in compensation. My biggest problem, in general, is hypotension. There have been periods in my life that, for whatever reason (different health state, but don't know why), I have experienced tachycardia (instead of dizziness) when climbing stairs etc. Last week I was experiencing tachycardia with a narrow pulse pressure (or my bp wasn't even measurable) upon doing things like climbing stairs. I was also experiencing severe brain fog one of those days where I couldn't even keep track of what I was doing, so I can't help but wonder if maybe my brain was starving that day in particular (this happened before, about 1.5 ys ago, too): maybe without the tachycardia, there was not enough pressure to get blood up there on a minute-by-minute basis.

Like I said, I had a bad year 2 ys ago (when I got diagnosed with dysautonomia) and had all sorts of problems. I can definitely tell that my brain is not as fully functioning now as it was before then. I don't know if it's age, or if damage happened (and at exactly what point), but my memory is definitely faulty now and I'm only in my mid-40s. I can't remember names and faces anymore; and when I read, I have trouble remembering characters (and don't get me started on trying to read for professional reasons-I'm afraid I'll never be able to do that again!). So there's definitely been a change for the *much worse* in my memory. But then again, that could be genetic. My mom-in her 70s- recently had cognitive testing done because she has trouble with word retrieval and also can't remember characters in books, etc (she actually makes lists as she reads, which I'm starting to realize is a smart coping mechanism I may have to resort to!) but they assured her it's not Alzheimer's. We overlap in a lot of our health problems, just that I'm experiencing everything 30ys before she does (so we are almost in parallel, which is really sad!).

[McBlonde]

Nowwhat.. Those are classic symptoms of cerebral hypoperfusion. Some days I am like the girl in the movie "50 First Dates" MANY times when this first start, I could watch a movie that I had already seen and not remember how it ended! Yikes! I thought I was getting Alzheimer's or dementia, but my doctor explained to me that what was happening was that I was loosing about 20% of blood to my brain when the hypoperfusion happens and when this is happening, there is not enough blood which disrupts the transfer from short term to long term memory. This can show up some times as white matter on an MRI.

[jangle]

I do think that POTS can cause cognitive impairment in the sense that hypoperfusion of blood will limit your working memory, attention, and ability to concentrate.

However, when we're talking about neurodegenerative illness in the sense of activating a process that leads to neuronal death, that is something else to consider. Given the fact that the cerebral hypoperfusion is

similar between POTS and IST patients, we can probably safely include data from both patient sets in our analysis. In both patient populations, it does not appear that they are at a significantly increased risk

of developing dementia than the general population, and there are studies that follow patients prognosis out for many years. Of course there is also the informal analysis that there are doctors who have patients who have had POTS or IST for decades, and if there was a strong correlation between such patients and neurodegeneration, I know they would have published on the finding by now.

[spinner]

This is the really scary and depressing part of pots that i choose not to think much about.

I have an o2 concentrator that i frequently use to oxygenate myself.

i can only hope that helps.

[yogini]

I wouldn't assume that you aren't getting enough blood to your brain unless a dr tells you so. Like another poster said, usually the body fights to get enough blood to the brain. The result of lack of blood flow to other parts of the body are the crazy symptoms we have: dizziness, digestion issues, nausea, insomnia, fatigue, etc. In terms of forgetfulness, etc, that happened to me more when my POTS was worse (and happens again during my flare ups). On most days I am back to my pre-POTS cognitive function. To date, there isn't any research that that shows POTS causes lasting damage. There are in fact many people here who were very sick/bedridden at one time that are recovered.

Edited September 13, 2012 by yogini

[Angela]

Issie, I was going to do the clinical trials for Dr. Driscoll but they were already closed with this round. I am scheduled for the next round of trials though (she emailed me this week) and I believe that her theory holds water. I hope everything calms down for you and you start feeling better. In relation to this topic, I just discovered I have a dva in my left temporal lobe (discovered in mri earlier this year and doc at that time failed to mention) which I would think ties in with Driscoll's CCSVI theory I believe so I am going to ask my neuro for cat scan of kneck and head to check out my veins, I mean, POTS is basically a circulatory issue with body trying to compensate (hr and bp) so if your veins are not working correctly and something is "abnormal" although, my fav phrase from docs is "unremarkable", then seemingly your brain is not getting proper blood flow. Gonna start a topic on this because I wonder how many people might have either DVA's or CCSVI that they know of.

[issie]

Angela,

I hope this works for you. There was good and bad for me. I used it for about a month. I found that it helped my head pressure and helped my eyes from the pressure and hurting they have. But, I started having more issues with shortness of breath, and more lack of muscle strength. The longer I took it the worse I got with that.

I was concerned when I started that I might have an issue with it because it is a sulphite. I think that is what caused the problem for me. I have been trying to do the sulphite/sulphate free diet and the more strict I am with it - the more I noticed the medicine issues. I stayed off of it for a few days and things got better with the shortness of breath and weakness - but, the head and eye pressure returned. I took 1/2 of a pill and it helped again with my head and eyes - but the allergy type symptoms came back again.

I think if I didn't have the sulphite/sulfate sensitivity it might would have been good. I will reserve it for if the pressure is really bad. It did seem to lower my bp and hr. But, towards the end - I was more dizzy - whether it was from the lowered bp or the med. ---I'm not sure. I haven't been able to get in touch with my doc yet to let him know what is going on - so will be interested to see what he says.

Issie

[E Soskis]

There are 3 organs that the body will protect in anyway it can - the body will shunt blood from all other areas just to perfuse the brain, the lungs, and the heart - it will even shut down the kidneys to allow for perfusion to these three vital organs. In a normal functioning autonomic nervous system, the brain autoregulates compensatory systems: especially blood pressure and heart rate. The sympathetic nervous system regulates itself primarily through heart rate. Those of us with dysautonomia have malfunctioning sympathetic nervous systems. So, if the body usually compensates for changes in physiologic status by the elevation of heart rate or the lowering of heart rate, then this system does not work properly with dysautonomia. I have AAG and my sympathetic system cannot elevate the heart rate. When my rate should go up, instead, it goes down. With POTS, the "brakes" for the heart rate are malfunctioning and therefore, the rate can keep climbing and get way out of control. The consequence of all these malfunctions is that the brain, heart, and lungs don't get the proper blood flow they are supposed to receive. Since blood carries oxygen and nutrients to the tissues, inadequate blood flow means inadequate oxygen and tissue perfusion....another word is "shock". When the brain experiences "shock", it cannot function correctly so...we have that "fuzzy headed" feeling, difficulty concentrating, cognitive impairments, and feelings of passing out - if not actually passing out!

I have a pacemaker to keep my heart rate up in order to adequately perfuse my brain. I have a friend with POTS-like dysautonomia that has a pacemaker to do the exact opposite - it speeds up when her heart rate is too fast and overdrives her rate by backing it down to a normal rate and level. I totally sympathize with everyone who has blood pressure and heart rate issues due to dysautonomia. This is a frustrating disease that takes day-to-day management.

Forgive me for being long-winded. I am often asked to teach on this subject and really want to increase the knowledge and awareness of dysautonomia: types, causes, and consequences. I guess I am carrying a torch to help my fellow medical community better understand dysautonomia so that people who come behind me receive the best possible care that can be given instead of that blank stare and gloss-over by "professionals".

I am a RN of 30+ years and a sufferer of AAG (autoimmune autonomic ganglionopathy)- I am blessed to have physicians who want to work with me to figure it all out and find treatments that will help alleve suffering and improve quality of life. Now, if I can educate other hospital staff about dysautonomia as well as other patients - perhaps those of us with dysautonomia can become not only better at our own medical management, but become advocates and activists for all!

(it only took me an hour to get this down - my brain is very foggy!)

[issie]

You did a beautiful job - even if it took you an hour. Good for you - being an advocate and and trying to educate others. I think that is the key - but, sometimes that falls on deaf ears too. We start to lose them somewhere along the line and we get that blank stare. They understand - but only - somewhat. I think unless someone is suffering with this they can't take as much of an interest in it - as we do. They don't and can't possibly understand the extent that this affects a persons life and they really don't have the time to look into all the complexities of it. I hope that one day this will be something that people will know about and understand. But, it will take us pioneers in this to make it happen.

Even our family members don't seem to want to take the time to completely understand the dynamics of this. They all want just surface knowledge. Maybe, that's how it is with some of the medical profession - they just want enough to be able to diagnosis it and say yeah - this is it. But, don't take the time to look into all the science involved or the complexities of the syndromes and we never get to the true answer for the solutions. Thank goodness for the docs that are trying to help us and are doing research. Hopefully, one day all this will come together and not be so complicated.

Issie

[jangle]

There are 3 organs that the body will protect in anyway it can - the body will shunt blood from all other areas just to perfuse the brain, the lungs, and the heart - it will even shut down the kidneys to allow for perfusion to these three vital organs. In a normal functioning autonomic nervous system, the brain autoregulates compensatory systems: especially blood pressure and heart rate. The sympathetic nervous system regulates itself primarily through heart rate. Those of us with dysautonomia have malfunctioning sympathetic nervous systems. So, if the body usually compensates for changes in physiologic status by the elevation of heart rate or the lowering of heart rate, then this system does not work properly with dysautonomia. I have AAG and my sympathetic system cannot elevate the heart rate. When my rate should go up, instead, it goes down. With POTS, the "brakes" for the heart rate are malfunctioning and therefore, the rate can keep climbing and get way out of control. The consequence of all these malfunctions is that the brain, heart, and lungs don't get the proper blood flow they are supposed to receive. Since blood carries oxygen and nutrients to the tissues, inadequate blood flow means inadequate oxygen and tissue perfusion....another word is "shock". When the brain experiences "shock", it cannot function correctly so...we have that "fuzzy headed" feeling, difficulty concentrating, cognitive impairments, and feelings of passing out - if not actually passing out!

I have a pacemaker to keep my heart rate up in order to adequately perfuse my brain. I have a friend with POTS-like dysautonomia that has a pacemaker to do the exact opposite - it speeds up when her heart rate is too fast and overdrives her rate by backing it down to a normal rate and level. I totally sympathize with everyone who has blood pressure and heart rate issues due to dysautonomia. This is a frustrating disease that takes day-to-day management.

Forgive me for being long-winded. I am often asked to teach on this subject and really want to increase the knowledge and awareness of dysautonomia: types, causes, and consequences. I guess I am carrying a torch to help my fellow medical community better understand dysautonomia so that people who come behind me receive the best possible care that can be given instead of that blank stare and gloss-over by "professionals".

I am a RN of 30+ years and a sufferer of AAG (autoimmune autonomic ganglionopathy)- I am blessed to have physicians who want to work with me to figure it all out and find treatments that will help alleve suffering and improve quality of life. Now, if I can educate other hospital staff about dysautonomia as well as other patients - perhaps those of us with dysautonomia can become not only better at our own medical management, but become advocates and activists for all!

(it only took me an hour to get this down - my brain is very foggy!)

E Soskis, thanks for writing this, I found it helpful and very clearly stated.

However, I do want to say that the issue of cerebral autoregulation is not decided in POTS patients. It might even perhaps be partitioned amongst the various POTS subtypes. You mention AAG, that is often associated with low blood pressure. For me though, my blood pressure actually goes up while I stand.

What I mean is, there was a study here: http://jap.physiolog...t/99/3/828.full

That said that cerebral autoregulation and brain blood flow is comparable to control patients. Now, there was another study by Dr. Stewart which had the opposite conclusion. The difference could likely be due to different types of POTS patients used in either study. I think if we're talking about POTS in the context of low blood pressure or shock as you mentioned, then hypoperfusion and subsequent syncope is likely.

For my POTS however, where I have not fainted, but yet still experience significant presyncope, I think it's more of excessive norepinephrine which is throwing off the proper autoregulation of the endothelial cells both in the brain and elsewhere which is causing the symptoms despite having normal/high blood pressure. This could be through a variety of mechanisms, probably both direct and indirect (excessive norepinephrine disrupting the renin-angiotensin-aldosterone system)