Fainting Not Due To Tachy

[masumeh]

Hi all,

I got back from my vacation to the US, and have some interesting things to share from my appointment with University of Iowa Hospital and Clinics.

Some background: I set this appt up like 6 months ago, and traveled from my parents' home in VA to IA in order to to see this Autonomic specialist neurologist and his colleague who specializes in epilepsy. As some of u may recall, I have had POTS for 7 years, was basically bedridden the first year and slowly recovered after that to a semi-functional level and now I'm almost fully functional. Nobody really can tell that I'm sick, but I still have episodes that resemble siezures. In February, a neuro did a new EEG and diagnosed me with generalized epilepsy. He told me that my EEG was so bad, he was sure he would see a lesion in my brain; however, the MRI was --thankfully-- clean and clear of lesions or any evidence of brain damage. My POTS specialist in VA is a cardiologist, and I felt I needed a neuro to review my dual-diagnosis of POTS and epilepsy. I refused to take the AED (epilepsy drugs), until hearing from a nuero who understands POTS too. Anyway, that's the background behind the visit to UIHC.

The Neuro at University of Iowa had the same EEG on cd that the neuro in Riyadh used to diagnose me with epilepsy...the MRI films also. He also reviewed my Tilt Table Test results from 2006, and EKG stress test, and other orthostatic testing my POTS specialist/cardio used to diagnose me with POTS.

The neuro in UIHC really shocked me. He spent two and a half hours with me, taking my history in detail, testing my blood pressure and heart rate in various postures, and conducting a test that used isometric grip exercise to test my autonomic reaction by taking my blood pressure. He said that although my heart rate does fluctuate, it is nothing odd or dangerous. If I just sit between laying and standing, he doesn't get the increase in HR that we got before with my POTS cardio specialist....which was like 65 jumping to 150. Just the normal 10-15 beat increase. He also said that my blood pressure does exactly what it is supposed to do, pushing up slightly in the diastolic (lower number) when standing. So--according to him--if all I need to do is sit for a couple minutes in order to stand up, that's fine and I don't have POTS. He especially stressed that my blood pressure stability contradicts a POTS diagnosis. He said that the fact that I have episodes in my sleep, and laying down, and in every position (rather than only when standing from a laying position) likewise contradicts a POTS diagnosis. Unless my blood pressure drops, he said, a high heart rate can never, never cause fainting...according to his human and animal research. In conclusion, according to him, I do NOT have POTS. I was puzzled.

He also reviewed my EEG, and had a colleague who is world famous in his electro stuff work review it. They both independently concluded that my EEG was totally normal and that I have no epilepsy whatsoever. They also said that the way my body twitches and convulses during fainting episodes is a neurological phenomenon known to specialists in epilepsy that is harmless, not indicative of epilepsy, and called "myoclonic twitches" or something like that. Anyway, all normal.

So I was like, "OK, I don't have POTS or epilepsy....why do I pass out, why am I always tired, why can't I tolerate exercise or normal daily life?" Basically, he couldn't pinpoint a cause, but said that maybe my breathing changed in 2002 when I suffered a Pulmonary Embolism...but reiterrated that pulmonology was not his specialty and that was just a guess.

He did tell me that my blood pressure increases dangerously, as does my HR, when I exercise. My blood pressure, which is normally low, rises to 150/90 and my HR goes up to 150 with only a few minutes walking, or just sitting and holding something heavy. He said that this indicates very poor cardiovascular health, and I should see a phsiotherapist who works with chronic illness to try to return to normal muscle and cardiovascular health. He said it seems that my health took a turn for the worst in 2002, when fainting started, and just never came up to normal. He said that I faint because of hyperventilation, and that he never told a patient that they're breahing too fast except they replied that they were NOT breathing too fast. He said that some people only need to increase respiration rate a very little bit to screw up their carbon dioxide levels enough to mess up their blood flow to the brain and produce all the symptoms I feel: fatigue, brain fog, dizziness, and fainting. He explained the syncope as totally an effect of hyperventilation, which I have not percieved.

In the car, driving around Iowa after the appointment, I joked with my mom that it looks like he want to change the name POTS to the name Chronic Hyperventilation Syndrome. I didn't really believe a word of it. But he seemed so sure. And his recommendations were very simple, for how to stop the fainting. He said just make sure I do not breath more than 4-6 times per minute (like wear a watch and track it, do biofeedback or whatever)....and also he said that when I feel warning signs (which I used to call auras)--ike the visual changes (things get blurry) or heaviness in my calf muscles or numbness in my fingers--to cup my hands around my mouth and nose and breath that way for a few moments or until I feel better. He also emphasized that it's important not to let others know how I'm feeling, because their reactions would make me hyperventilate more.

I tell you, I really did not believe that this would have ANY benefit. But I have been trying for a month or so--in all the situations where I generally get tired and dizzy, such as taking a hot shower, exercising, after a large meal, and when I pray (because we physically prostrate during prayer). I haven't fainted since! Not only that, I can exercise! After 5 minutes on the eliptical bike, I usually start to get visual changes. At that point, I do the breathing into my hands thing, and then the visual stuff clears up and I can exercise another five minutes, then I do it again and can go on another 5 minutes, and so forth. I can do 30 minutes that way! I can take a hot shower! I can pray longer prayers! And since I'm able to tolerate exercise, I've been getting stronger leg muscles and I'm really feeling a lot like my old self, my self before getting sick in 2002!

I'm not saying that there's no such thing as POTS. I wonder if he would have found the same results in 2002 or 2003, when I was bedridden and constantly dizzy and couldn't walk without touching a wall. (Believe me, that was a sudden twist; I had been an athlete, and very, very active socially and at college before getting sick...and I had mono at that time, and noticed dramatic deconditioning in my legs, and couldn't focus or read a book...y'all know the drill, just POTS symptoms invading everything in my life.)

But I think we DO need to consider what this doctor's research indicates....namely, that the heart rate issues do not in and of themselves cause the fainting. Rather, it's a blood flow issue, and the blood flow can be disrupted by carbon dioxide levels dropped (which closes or opens blood vessels), and therefore hyperventilation is the real mechanism rather than the tachycardia (even something not noticable, something that just happens all the time because we are all the time breathign a little too fast for our system to maintain enough Co2). This is not true for those who's blood pressure drops when they faint, however. Their blood pressure dropping can cause insufficient blood flow to the brain and that would cause a faint. Blood pressure stability, however, is the difference between POTS and NCS. So those of us with a POTS dx and not an NCS dx should try this, I think it's worth a try.

Since I started doing the breathing into my hands, I realized that I do breath too fast in general. I mean like always, not when I'm anxious or excited or stressed....I just always breath a bit too fast. So I've been able to slow that down over the past month. Now I hardly ever need to do the breathing into my hands, except on the eliptical bike, but still not as often.

I'm still gonna watch this and see where it goes. I've been through a lot of ups and downs, flare-ups and relapses I guess, over the past 7 years. But this is truly the first time I feel like I'm on solid ground...like I am "back to normal".

It helped seeing an autonomic specialist who was able to convince me that there is NO perminent damage to my nerves, including autonomic nerves. He spent a long time talking to me, reassuring me by various evidence that in fact there is no perminent damage. He tested both sympathetic and parasympathetic nerve groups and was able to get normal responses, if a bit fast or a bit slow, still normal. I CAN function normally, my nerves ARE there after all, I just might need to change a few things or avoid overstressing my system. He emphasized that I am coming out of chronic illness and should not push myself hard...but should take a gradual approach, and not the "no pain, no gain" approach of my older, athletic days. So he was NOT saying "it's all in my head", rather just that at this point I could get better if I do three things: 1) stop breathing too fast; 2) recondition my leg muscles; and 3) stay hydrated. He told me not to drink water alone, but to increase electrolytes and fluids together. He said it's not clear why I got sick, but it's clear that I can get better now--without any medication. He said not to take any more Midodrine (which I had stopped because I was having bradycardia episodes and going unconscious for several hours at a time with HR into the 30's) and never, never to take any AEDs (epilepsy drugs).

I'm still really thankful to my cardio POTS doctor. The vasopressor (Midodrine) he gave me three years ago helped enormously to enable me to live a semi-functional life. It helped me become more active, and gave me something to rebound off of, some energy and good blood flow to start getting some muscles back. But it didn't address the cause of my vascular laxity. I'm still wondering whether I have EDS, or something else underlying that initial failing of my viens to sustain a normal recovery course after the bedridden years. I dont' know. If I find an opportunity to test that, I will go for it.

I do think that the hyperventilation has more of a role than most pro-POTS dx schoolers want to acknowledge. I think the doctors in UIHC are doing good research, and that Mayo and Vanderbilt researchers should integrate their knowledge with that insight.

[kayjay]

Your post is interesting to me in that it is the reverse of my situation. I even took special breathing courses and read books on breathing before I was diagnosed with POTS ( I am not a fainter but get very short of breath). Anyway the breathing thing did not help and later I was diagnosed with POTS. I thought reading your post is that you are better YEA!! but you got into some bad breathing habits when you were sick and that fed into you still having symptoms. I know that my body has "learned" to overreact to stress because of my adrenal involvement. I have to calm myself down when I am startled b/c it feels like an adrenal surge but it is not. Does that make sense? Anyway I'm glad that you are better and you have found things that help you. I wonder if you had POTS, got better, and then had to adjust your breathing patterns... just a thought. KayJay

[futurehope]

Very interesting. I may have breathing as a mechanism also because I'm not a fainter, just orthostatic intolerance, feel bad and heart rate increase. If I get a chance, I may monitor my breathing.

I wonder if breathing into your hands (which gets more CO2 in), helps with the orthostatic symptoms I get? My symtoms are not exactly like yours. I'll try it.

[bjt22]

I'm a long time Lamaze veteran, so I happen to put a lot of stock into breathing. Without even consciously thinking about it, I do practice methods of controlling breathing all the time. It is helpful. I know another gentleman with a severe case of NCS who went to a therapist to help with these methods, and sure enough, hyperventilation was contributing to his fainting. It wasn't the cause of his NCS, but when he worked on his breathing, he did have some improvement. It's very easy for the body to start trying to suck in more air as blood pressure bounces around and plummets. That could definitely make syncope much more likely.

None of this is to say that our problems are caused by simple hyperventilation. Hyperventilation is just probably one more screwy coping technique that some adopt without realizing it. Learning to recognize this and efforts made to control it can only help.

However, I cannot do too much of the deep breathing stuff. I will pass out.

[futurehope]

I am curious. Is breathing 4 - 6 times/minute the normal rate? I have no idea. Or is this deliberately slowing it down? I breathe about 14 times/minute at rest.

[flop]

The normal range for respiratory rate in adults varies a lot depending on where you read it. 8/min was the lowest I found and 20/min the highest on a quick google search. On average I think about 10-14/min is normal.

To slow your breathing try to count to 3 whilst breathing in and count to 6 whilst breathing out.

Flop

[ana_22]

It helped seeing an autonomic specialist who was able to convince me that there is NO perminent damage to my nerves, including autonomic nerves. He spent a long time talking to me, reassuring me by various evidence that in fact there is no perminent damage. He tested both sympathetic and parasympathetic nerve groups and was able to get normal responses, if a bit fast or a bit slow, still normal. I CAN function normally, my nerves ARE there after all, I just might need to change a few things or avoid overstressing my system.

great to hear this is helping you! i also have the dizziness and tachy but never faint. im going to try and slow down my breathing.

just a few questions for you.

did you get visible blood pooling in feet and legs?

and how did they test the autonomic nerves, para and sympathetic?

thanks so much!

[tinkerbella]

i'm very happy for you. .... pots has a happy ending for many young people, although i do not know your age. i was taught the same thing this year by my plummy. he also suggested the use of a hand fan or a small fan. i found a small battery operated one to wear around my neck very helpful. i also use it when the wave of heat hits me, before my body is telling me i want to drop to the ground for safety sake. i have also been called a herperventerlator by high and almighty er docs who tell me they are very highly trainned to see this, only to be sent elsewhere to the top hospital in our city where stress test came back congestive heart failure, neuro muscular disease, then ttt pots.

i pray that you stay on the road of good health. it's sounds interesting.....

i do believe in miracles.

blessings,

bellamia~

[erik]

Congrats. It does sound like all the advice is consistent with POTS management plus the breathing issue is interesting. Not sure what to make of it all.

Any explanation for the profound disagreement on the EEG analysis? I have read that simple-partial seizure is really tough to spot without intercranial probes... so they go mostly by symptom and are just lucky to sometimes catch something on EEG.

[pat57]

that was interesting , thanks for taking the time to fill us in.

I wish you continued success.

[futurehope]

He said that some people only need to increase respiration rate a very little bit to screw up their carbon dioxide levels enough to mess up their blood flow to the brain and produce all the symptoms I feel: fatigue, brain fog, dizziness, and fainting. He explained the syncope as totally an effect of hyperventilation, which I have not percieved.

Masumeh, you mentioned that when exercising, you have to stop and breath into your hands and then you can resume. Obviously, normal people do not have to do this.

Well, everyone breathes more rapidly during exercise. Is it possible that you are more sensitive to changes in CO2 levels in the blood than the average person? Maybe it is not a matter of the breathing rate, but a sensitivity to changes to CO2 level? Also, as time goes on, will you have to do the "breathing into the hands" less because you are retraining your brain?

Just a thought. Maybe we all have a form of this? Sensitivity to changes. I know I'm sensitive to changes of any kind in anything.

[ramakentesh]

Your doctor is quite disturbingly wrong - although it may not be the heart that is at fault:

The neuro in UIHC really shocked me. He spent two and a half hours with me, taking my history in detail, testing my blood pressure and heart rate in various postures, and conducting a test that used isometric grip exercise to test my autonomic reaction by taking my blood pressure. He said that although my heart rate does fluctuate, it is nothing odd or dangerous. If I just sit between laying and standing, he doesn't get the increase in HR that we got before with my POTS cardio specialist....which was like 65 jumping to 150. Just the normal 10-15 beat increase. He also said that my blood pressure does exactly what it is supposed to do, pushing up slightly in the diastolic (lower number) when standing. So--according to him--if all I need to do is sit for a couple minutes in order to stand up, that's fine and I don't have POTS. He especially stressed that my blood pressure stability contradicts a POTS diagnosis. He said that the fact that I have episodes in my sleep, and laying down, and in every position (rather than only when standing from a laying position) likewise contradicts a POTS diagnosis. Unless my blood pressure drops, he said, a high heart rate can never, never cause fainting...according to his human and animal research. In conclusion, according to him, I do NOT have POTS. I was puzzled.

In hyperadrenergic POTS blood pressure responses to orthostatic stress are often hypertensive. Excessive sympathetic activity and or Norepinephrine levels results in a state of excessive orthostatic vasoconstriction, increased peripheral resistance and either cerebral vasospasm and reduced cerebral perfusion or hypocapnia from baroreflex unloading which results in again cerebral hypoperfusion, hypoxia and fainting - all while blood pressure systemically is maintained, and is often even elevated.

The Baker Institute in Australia, Dr Stewart at the centre for Hypotension in New York, researchers at Vandy and Dr Grubb at Toledo have all found in published and unpublished data, significant reductions in cerebral blood flow in Hyperadrenergic POTS without a reduction in blood pressure so this opinion is quite dissappointing.

Secondly, some of the abnormalities apparent in POTS are apparent at all times and are only clinically testable when standing. So experiencing symptoms while lying down is VERY common in POTS.

Please either refer your neuro to work by Dr Stewart or Dr Grubb, or private message me his details so that I can send him so information.

I mean these are often the same doctors that 10 years ago would have told you it was all in your head - then they have obviously read one article on it and assume its the same as postural hypotension - the mechanisms are VERY differnet in some cases.

[ramakentesh]

The hypocapnia in some forms of POTS is more likely the result of abnormal sympathetic activity than from hyperventilation in an otherwise normal patient.

[mjan]

OK..Ok.. I AM trying to take DEEP...slow breaths....cuz I found these docs advice to you so wrong. It just felt wrong. Sorry.

They have knowledge yes..research..yes. But I go back to MY own theory that if these docs went through what the patient has been experiencing...they would think differently. There may be some truth.. but I feel strongly they are lacking the knowledge that lead you to this condition. If only it were hyperventalation.. you would simply change your breathing and be ok..whalla..no more symptoms. I just do not feel this is the case for you each and every time. Hyperventilation does not cause you to be so sick you are bedridden..does it? Yet paying attention to our breathing patterns..yes.. a good thing.

MEDICAL PERCEPTION based on their experiences with patients..(legit) and based on their training and expertise(also legit)..

BUT its can be limiting. There are so many other things to consider.

Think of those here who have seen many different specialists. I have seen 4 neurologists..2 Rheumatologists..now a Pulmonolgist..GI and multiple PCPs. They are all trying to figure me out.. and agree its complex and very chronic. Everyone of the neurologist had a different opinion. BUT at least a couple did not make up their minds.. one especially monitoring me for MS.. says he never rules things out or in.. he waits and monitors. FINALLY he ruled MS out..but left me hanging.

IT took someonere HERE to help me just recently to check on periodic paralysis related to potassium changes in the muscle. What looks like fainting.. (I am awake..can hear) but I cannot move. It always starts out with autonomic symptoms. I was lead to an expert MD (who also HAS this condition) to help my PCP figure this out. Here we are on the phone then my PCP and me are on our computers reading this web site.

I get aura's too with this..and cannot move..I also used to have what looked like seizures.. I have time to get somewhere safe..I don't just fall down. But still I am going to have a sleep study to see if I have narcolepsy with cataplexy (loss of muscle tone).

I am truly grateful for these docs...trying so hard to figure me out. My POTS doc said he'd be the consultant to those MDs who know nothing much about Dysautonomia.. as he told me you have more thant POTS..its more complex than that alone.

Keep a diary..foods..stressors.. anything you can figure out happens before..during..and after you have these episodes.

I hope you are guided to the right docs who can help you figure this out.

Warmly Jan

[erik]

I don't get hyperventilation at all, but I DO have "shortness of breath" and sometimes a hair-line trigger to feeling suffocated if I hold my breath. I used to be able to hold my breath for a while... now periodically, I get immediate powerful drive to breath just a few seconds after holding my breath. This is not the same as hyperventilation but does hint at a similar skewing in things.

I hunted though symptoms, disorders, theories a while back to find any sort of "subtle" explanation or connection, particularly between simultaneous kidney and breathing tendencies. Didn't come across any smoking gun with my amateur digging. I looked deeply at "acid-base imbalances", because it is CO2 that drives breathing impulse more than O2... and CO2 is simultaneously pushing hard on the body's acid-base sensing & interactions. The kidney must slowly balance acid-base issues in contention with blood volume needs! Was hoping to find a more subtle issue than the first-line suspects of renin-angiotensin-aldosterone-vasopressin. Breathing does rapid managing via CO2 levels (a key drive to "breathing impulse"). Other things tie in too (maybe even sweating... I get phases of weird smells which I plan to ask about in a different topic

[MomtoGiuliana]

Interesting. I agree with ramakentesh that something is fundamentally incorrect in his statements. Everything I have read indicates POTS is diagnosed by hr changes and has nothing to do with bp instability, for one thing. As far as what he observed with your heart rate when examining you, keep in mind that hr changes can be more pronounced one day than another. I know my specialist has told me that he diagnoses based on both hr changes and symptoms, anyway.

Interesting that he says your bp goes "dangerously high" when exercising. Is 150/90 dangerously high? This is something I have wondered about. I know when I have flare ups I have highish bp that increases when I stand and I wonder how concerned I should be.

[iheartcats]

I almost went to the U Iowa Autonomic Department but moved from the Midwest. I was still considering heading back there next year..but now am wondering if it's worth a trip across the country.

150/90...hmmm. I know blood pressure goes up even in healthy people exercising. I was personally told not to worry about anything between 90/60 and 140/95 by my former EP on my current regime. Maybe anyone wondering can ask their doctor if there's a normal 'safe range' with their symptoms/treatments they shouldn't fret about. I know it made ME feel better!

I don't know what to think about this.

Do you think your POTS has just gotten better? It's been 7 years since you 'got' whatever caused it and my EP says a lot of people have it for 5 or 6 years and it goes away or gets a lot better. I've only had it for about 2 and am not as bad as I was a year ago (with meds). Not so great without meds.

Just trying to make some sense of your situation. I don't know how it could all be linked to breathing.

[yogini]

My understanding is that tachy never causes fainting - it is the lack of oygen to the brain that does. That is why many/most POTS patients never faint - while those with NCS are more likely to.

I think docs that don't treat POTS all the time - no matter how smart and reputable they are - tend to get things confused sometimes. I've been to some of the "best" drs in NYC that didnt have a clue. Maybe this doc is confused, or maybe you have a different form of dysautonomia. POTS involves tachycardia, but dysautonomia could also mean dysregulation of BP.

Not enough is known about the mechanisms of POTS at this point and I'm all for anything that helps...especially something as benign as slowing down breathing. I know it has helped me a lot - doing breathing exercises and using the Resperate breathing device. People in general breathe too fast, and breathing properly is beneficial to health in many ways. Just because something so simple helps, it doesn't mean you DON'T have an underlying medical condition.

[chipper]

Dr. Grubb told me that it had been proven that EDS causes dys. Most of you already know this, but I did not know it had been proven The tilt at CC proved I still have a problem. I am still dizzy and sick after any activity. Standing will always be a problem for me even though my blood pressure is much better. I hope you continue to improve. If you have EDS you will always be at risk for a backslide. We can never forget the things that make us worse. It is great that you have found a way to cope and feel better!!!

Mary

[ramakentesh]

I agree that not enough is known, but enough is known and heavily publicised that the mechanisms of POTS do not always result from reduced blood pressure - hyperadrenergic POTS can result in postural hypertension and these patients still have documented reductions in cerebral blood flow.

[masumeh]

Firstly, thank you all, all of you who read my post, and all of you who posted responses. I've always found this forum to be extremely supportive, full of sympathetic, intelligent, and experienced members all sharing a common goal of trying to understand their medical condition, cope, and perhaps recover.

Secondly, for those who were upset with the UIHC specialist's views of POTS, I totally understand. It's so very frustrating, more than words can express, not to know what you have, doctors giving up or telling you it's all in your head, or just not able to help. Having the POTS diagnosis, which I got in 2006 (4 years after falling severely ill), was a great relief and boosted my self-confidence that I knew something was wrong all along (something more than my head).

I think what the UIHC doctor is saying, however, isn't that there's no such thing as this disorder, but that it is not accurately understood by those promoting the POTS diagnosis. He kept saying, "It doesn't make physiological sense." He said it just makes people feel better to have a word to call it, but it isn't a good word because it doesn't accurately describe the problem. He told me that POTS has to be diagnosed very carefully, and mentioned that a person MUST have hypovolemia in order to receive a true diagnosis of POTS...but even THEN, he said, the mechanism of fainting for a POTS sufferer is hyperventilation rather than the tachy itself. Tachy exists, but it is not in and of itself dangerous to the person; rather, it's the hyperventilaiton that comes along with the tachy that causes the fainting. So if biofeedback or breathing in more CO2 by cupping the hands around the mouth and nose reduces hyperventilation, then this will stop the fainting even if the person's HR is still sky high. This, as he said, is true IF the blood pressure is stable, according to him that means it does not drop (and doesn't matter if it goes up).

I don't know why he seemd to consider the hyperventilation outside ANS problems...like, I was thinking maybe I hyperventilate from ANS damage, but he assured me again and again that I am not damaged in my ANS. He used blood pressure responses in various physical positions and while exercising with an isometric grip thing to assess my ANS reactions....he explained that there is a more accurate and related way to judge the ANS reaction but that involves inserting something into an artery in my arm and it unnecessary because the blood pressure is a sufficient indicator.

I challenged him about his views on POTS, which is one reason the session with me took 2.5 hours. I asked him, "What about my TTT? It showed 75% blood flow deficit to my brain when I stand." He said a TTT is a false way to diagnose POTS, that research supporting it is biased, and that researchers in UK and US used very fit soldiers on a TTT and 30% fainted. He said the TTT places a person in an unnatural position, and because they are suspended rather than actively standing, their leg muscles are not assisting in venus return and their blood isn't getting to their brain (much the same as if you have very poor leg muscle tone from deconditioning, which he suspected was the core of my problem).

I also asked him, "What about the feeling of blood pooling in my lower legs?" This is something that I previously thought confirmed that the tachy meant my blood flow was out of wack. Blood clearly pools in my lower legs and in my stomach. I can see my stomach bloating, and I feel the heaviness and discomfort of pooling in my lower legs. He said, yes, it pools, but that is not BECAUSE of the tachy. He traced it back to deconditioning, especially cardiovascular unfitness. He also said that some pooling is normal, especially if the person squats and cuts blood flow (like when gardening, he said). Anyone would feel a bit light headed, but their body would quickly adjust and recover. And he said, the pooling does not mean that blood doesn't reach my brain...and that my blood pressure stays stable, and that if blood pooled enough to deprive my brain of oxegen by that mechanism, then my blood pressure would have dropped. I had to admit, that this makes sense...how can blood pooling not cause blood pressure change?

He did say that my tachy might be related to dehydration, and recommended that I be very careful to stay hydrated.

He was totally unconcerned about my low resting blood pressure, which he had a firm understanding of and actually he predicted my past blood pressure accurately... I used to have blood pressure as low as 60/30 and normally was 85/40. Now it's more like 105/70...and he told me, "I bet your blood pressure systolic used to be at least as low as 85 when you were younger." I was like, "yup, how did you know?" He said it's a sign of longevity, and it's genetic and will never cause me to faint as long as it's stable (stable whatever, high or low, but not bouncing around and dropping suddenly).

He said in his animal research, they manipulated blood pressure and heart rate (and he said he did some human research too, but obviously could not push the numbers as far), and found that tachy alone with normal respiratory rate will never, never cause fainting. Only lowering the blood pressure, in his research, could induce fainting. That point was the most convincing to me, because I know that my blood pressure is stable (all my POTS doc's orthostatics never showed a problem in blood pressure, and I've followed-up with him for 3 years now). I know also that my HR is sometimes NOT high when I'm feeling dizzy. And also sometimes it's low, bradycardia.

All this said, what the doctor did NOT prove was that I hyperventilate. He did not observe that. He did observe that I have clear signs of cardiovascular unfitness, that I need to recondition, and that my blood pressure doesn't drop. Then he basically used process of elimination to conclude that it was hyperventilation. I would have been much, much more comfortable with his hypothesis if he had proven that I do indeed hyperventilate.

However, as I said, I took his advice about the breathing and I have found that my breathing has slowed down a lot over the past month. I never realized that I was breathing too fast before....all the time, even when resting. I think I had a high baseline respiration, and an unacceptably high respiration rate when working, studying, exercising, etc. Now that I'm breathing slower, I feel much more comfortable, especially in my head but also all over my body. It's difficult to describe. But basically a lot of the sick feeling all over has washed away.

It really, really helps that I've been able to exercise and recondition my legs. I feel a lot more energy.

I have to acknowledge, however, that I am extremely cautious about this improvement. I am not at all sure that whatever caused my initial downfall in health is gone...rather, I'm very suspicious that 7 years of really debilitating illness could not have been caused by hyperventilation alone (which is not what the doctor was saying, but he said it's been disrupting my health since AFTER becoming ill, from what he did not know). I want to look into EDS. I don't know how to find a good doctor to assess that for me. I also want to keep researching about why the CO2 helps so much. Maybe, as someone commented (don't recall the name), reversing hyperventilation is a mechanism that can help even though hyperventilation is not the mechanism that is actually causing the problems.

The doctor at UIHC basically said, we don't know all the answers, and especially we do not know why I became sick to begin with....(I still think it was a combination of factors, but mostly the EBV or mono was the culprit...he thought it had more to do with the deconditioning, weight loss, and pulmonary embolism that occurred at the same time)....but he was very sure that I could become better, and that there was no perminent ANS damage. Like, I guess he was mostly concerned with ruling out neurological causes, since that is his area of specialty...he mentioend that maybe I should see a pulmonologist because of the history of PE, and that maybe my breathing patterns changed at that time, but reitterated that pulmonology was NOT his field and that was only a guess.

I will look into what another member mentioned here about hyperadregenic POTS causing blood pressure spikes that reduce Ox in the brain by themselves.... The doctor at UIHC was very warm and welcomed further communication and questions. He sent a letter to that effect after the appointment. So I am mulling over his recommendations and statements, and compiling my questions. I really highly value all of your ideas too, here in this forum. We are, in the end, the ones who actually LIVE with this condition and therefore have intiuition and experience about it. I know he's aware of most research out there about ANS related phenomenon because he referred to a lot of it, and specific researchers with whom he is ideologically at odds at Vanderbilt and Mayo...though he also indicated that although they disagree they are really working toward the same goals and have a friendly relationship with each other.

Just to clarify, he is an autonomic specialist. His colleague whom he consulted about the epilepsy dx is an epileptimologist. They both said that the EEG was totally normal. I think what happened there was that basically the doctor here in Saudia doesn't really know his stuff. I have no other explanation, because they were all 3 looking at exactly the same EEG test. The UHIC doc was at the very least thorough, and consulted others on his team about both the EEG and MRI, just, as he stated, to make sure he doesn't miss anything.

Thank you all again for your comments, ideas, and concern. I will keep everyone's advice in mind...I'm not done searching for answers.

[firewatcher]

Masumeh,

Has this doctor published? I would like to read his research.

[Maxine]

I think tachycardia can make someone pass out. If the heart rate is too fast it can not pump blood efficiently-------thus causing syncope if it gets high enough.

It sounds like this doctor has his own therories, and they sound a little odd to me.

Sometimes I get a little anxious and hold my breath. This is usually when I get the adrenaline rushes from the POTS. A simple thing I did was remember to breathe in an out in a normal rhythm-----------------nothing fancy. I try to think of it as a child breathing in thier sleep. This helps me a lot. I would think breathing as this doctor suggests would cause lack of oxygen and cause more problems.

I'm glad your feeling better, but this doctor sounds like he's a little misguided in his thoughts on this.

As far as being deconditioned goes, my CRASH came when I was very active in my life. I was by no means in tip top shape becuase I was very busy, so I exercised when I could that last year before the crash. However, most of my life I was always exercising doing something. POTS comes first, then some of us become deconditioned due to limitations. It's best to move as much as possible when we have the opportunity, but I don't buy his views on being deconditioned, and this being the cause of blood pooling and tachycardia.

Maxine :0)

[tinkerbella]

I also starting reallY crashing as an areobic instructor back 10 YEARS AGO.... My heart rate was so fast I could not even count it..... I know I've told my story before..........then finally someone figures the puzzle out! I was in great shape tone and muscle wise. now i'm can't believe how much i've changed since then.

the slow progression has finally caught up with me. I will see what I can do on a local level to help people with pots.

i'm needing some real hugs these days...

BellaMia~

[Kyler]

We are taught in the medical field that a normal Respiratory rate is 12-20 or old school 12-24 breaths /minute. We also learn that your body breaths (unless you are a COPD(like emphysema) patient) to get rid of CO2 not to take in oxygen-all driven by baroreceptors in your spinal fluid and other places-it's rather complex. I can tell you for certain that every patient (over 10 yaers) I have seen breathing less than 8 times/minute was blue and Unconcious or nearly that way - 4-6 breath /minute is not enough to sustain life for most normal humans. 10-12 should be the slowest.

That being said it is all connected to the nervous system and the brain. It makes sense that POTS-being a disorder of the nervous system could affect breathing as well.

My son's cardiologist said that he has "air hunger" - explaining it as a shortness of breath not related to the lungs malfunctioning- because his heart doesn't have enough blood in it to pump enough oxygen to his brain and if he exerts himself his brain takes notice and tries to fix it. He measured his left ventricle and his inferior vena cava with ultra sound lying and then standing and both of them shrunk significantly when he stood up. I can only imagine that even without a change in CO2 levels that this could cause a person to "hyperventilate" to actually fix a gas exchange imbalance in it's earliest stages.

It all seems very related to me. So maybe you breathing into your hands helps to fix it but it is still POTS related? Just a thought. The only thing that I would say was COMPLETELY out there was the 4-6 as a respiratory rate. Scary.