Foggy01

God I know that fright you can get when you see how high it is. Was 140/90 for me a lot of times. Just borderline on high.

Hey guys,

I'd like to thank you all for your responses in my other threads and I'd like to apologise for making so many but I feel like I need to make another and get a clear answer. I hope you guys won't mind.

So what's been happening with me has been pretty stressful. I've been in a noticeable decline for a few months and have gotten a lot more light headed and very weak and fatigued. Aches and pains I had for a while and now I almost feel the opposite, numb all over. Anyway none of these are really what has me so stressed. I've posted about it in another thread. It's this strange breathing issue where it's like you "forget to breath" as some have put it. The breathing sensation in the chest is gone and seems to be associated with an allround weakness and "out of body" feeling. It's very strange. Gets very disturbing sometimes and feels like you're suffocating. It can go on for hours (or days if you get a sinus infection like I just got).

Anyway I guess you can appreciate how I feel then, that I want to get out of this **** as quickly as possible!

So I hope I can leverage all your knowledge and I hope you have an answer for me.

So this state I think seems to be associated with low blood volume. I've spoken to others that have the most distressing symptom (the breathing sensation thing) and it seems to be associated with low blood volume. It goes away once one raises blood volume.

I've been exercising like crazy and drinking lots of salt water, but so far its the same. I feel like there's no discernable light at the end of the tunnel because I have no way of knowing if I'm getting close to expanding my blood volume back to what it was when I didn't feel this weird symptom.

So I'm wondering. Is there any way to gauge the blood volume? Like is there ANY way to tell how volume depleted I am? 5% of a normal person? 10%? 20%? 25%? Is there any way at all to know?

If there was some way I could also measure progress in increasing it and see how fast its going up and maybe have some idea of when I'll be out of this ****.

I have two ideas so far, I hope someone has another. I've looked for proper blood volume testing in my country but it appears to be nonexistent. It's where they inject a known quantity of a tagged protein or red blood cell and measure how diluted it gets in your blood. Sadly there doesn't seem to be such a thing here. But if anyone actually knows a place in Ireland that does it I'd appreciate the tip!

Anyway so my ideas are absolute Vo2max and MCV.

Levine in his studies says Vo2max is proportional to blood volume in the deconditioned pots type in his studies. I think from what they say I fit this type, so maybe I could use this relationship to figure out my blood volume. I had a vo2max taken before I felt like this so if I got one now I could compare and see the difference. And it could be used to track progress too. I'm sadly at a different weight now though, which complicates comparison but if I could adjust for that it would be useful.

Another that I heard from a doctor is Mean Corpuscular Volume. It's always been low for me since I got POTS. She said it was associated with blood volume loss, so a higher one would be a good way of knowing I'm on the right track.

If anyone has any other methods to share I'd appreciate it! I'm really pissed off it's so hard to find out something so important to our condition (blood volume). If anyone knows a place it can be tested in europe I'm all ears. Thanks for listening! Any input is appreciated.

Is this a good proxy for blood volume? Does anyone know? I've read in one of Levine's studies that it stayed closely proportional to blood volume for the patients in his study. I don't think it tracks blood volume as well for normal people, but it seemed to stay proportional in his studies. Does anyone know if this can sort of be used as a good indirect way of telling your reduction in blood volume?

Like the controls in Levine's study had 2.4 l/min Vo2max while the patients only had 1.9 l/min. This is a approximately a 20% vo2max reduction and closely tracks the blood volume reduction (-15%) and plasma reduction (-20%). Similarly when vo2max increased by 8%, blood volume increased by 7%.

Since blood volume testing seems to be virtually impossible to have done outside of certain places, does anyone think this sounds like a good way of ascertaining blood volume deficits?

I'm sort of thinking of using vo2max readings as a way of telling how volume deficient I am and measuring improvements over time in it. Anyone have any thoughts?

Also does anyone know what the relationship between fat mass and absolute vo2max is? A fatter person can have a higher vo2max (and blood volume) than even an athelete. I'm currently overweight and I'm trying to work out what my vo2max (and thus blood volume) would be if I were an average weight. Hope someone knows this. Thanks.

I also have dim or dark eyesight that gets worse when my symptoms are worse. It is like someone turned the knob on my internal contrast button. Bright colors in stores stick out like neon signs, also.

Sounds exactly like what I have. Thanks for sharing. Thanks to everyone for sharing.

Absolutely! Have very much the same situation as you describe. Has made me wonder if the tachycardia was a compensatory mechanism for something else going on and by getting that "controlled" it's made the something else that much worse. ???

My POTS doc says he sees this in a subset of his patients but doesn't have any explanations for it.

Oh god thank you for sharing your experience. I hate feeling so alone with these freaky symptoms. I'm glad there's not just one but many others out there with this (I'm assuming since your doc seems to have experience with this). By the way was your tachycardia reduced by beta blockers? Mine has gone down by itself but I feel worse.

Has anyone ever had their standing heart rate decrease from what it was before, supposedly an improvement, and yet feel worse?!

My standing heartrate is lower than it was a few months ago but I feel a lot worse. A lot more lightheaded and sometimes dizzy. I feel generally weaker, fatigued and more "out of it" and foggy. Things are going numb a lot more and going tingly and stuff a lot more but my standing heartrate is lower than it was a few months ago!

Has anyone experienced this? It's like I have more and worse symptoms of POTS but it's supposedly improved if you just went by the standing heartrate number! My resting heartrate is the same as always (high), so it doesn't seem like my heart has gotten any better (like a larger stroke volume or left ventricular mass).

I don't know what to make of this. Lol. Am I better or worse? Objectively I'm "better" but I feel a lot lot worse.

Hope someone else has experienced this paradox. I'm at a loss.

I'm also doing an exercise program following the Levine study. I find it necessary to have a rest day after every 2 workout days in order to prevent a total collapse.

I do Mon, Tues, Thurs, Fri.

I've been going for about three months now. I've definitely noticed an improvement in how hard & how long I can exercise (aka my general fitness), but my symptoms haven't improved. Actually things are worse since the exercise takes up all the energy I have and leaves me reeling. Still, doc said six months, so six months I'll do.

Hmmm that sounds disheartening, no pun intended. I was hoping you could answer a few questions about objective parameters that I hope your doctor took to measure your progress.

Did you have your stroke volume measured before and after the 3 months?

How far from the average for your gender did it start?

Has it improved over time?

How much away from the average for a healthy person is it still?

Did you have your vo2max measured before and after?

How far away from the average was it to begin with?

How much has it improved over time?

How far away from the average for a healthy person is it still?

I suppose you certainly haven't had blood volume taken since it's a rare test but if you have has it improved over time? How does it compare to the norm for your gender?

Hope you can answer these questions for me. I hope you're on the way to seeing a recovery and just are still outside the norm in these parameters still and need some more time. God bless. Take care.

I don't get this sensation, but bright artificial light bothers me. Also, if I close one eye, the vision in the other gets very dark, with lots of black visual snow. I wonder if that could be related to ANS issues?

It's hard to know. But since we're all sort of reporting visual disturbances of some sort, even if they aren't exactly the same, it's probably safe to say visual disturbances are associated with pots. I think the doctors might agree it's associated. It was mentioned in one article I think.

Silly question I'm sure - have you been checked out by an Eye Dr. just to be sure it isn't your eyes?

I'm fairly sure it's just related to the general problem I have with blood and flow and tachycardia and all that. Just was wondering if others with POTS ever got anything similar. What you describes sounds similar enough that I guess I've got that question answered.

Does it feel like everything is about to go black, but doesn't? It feels like my peripheral vision is about to close in on me and everything is going to go black. It does not accompany a feeling of being faint. It's very weird and is definitely worse when everything else is worse. Also, everything looks kind of hazy, not blurry, but hazy. This is very hard to explain to an eye Dr. when my vision tests perfect.

It sort of is like that. But it's also dark all the time now as well. But gets darker temporarily like you describe. I guess "dim" would be the word, not dark.

Hey I was wondering if people have had their vo2max done before and what it was. Anyone care to share? Just wondering how mine compares.

By the way does anyone know if absolute vo2max stays the same when you lose weight? I know relative vo2max obviously increases the more fat you lose (if you don't lose muscle), but does absolute vo2max stay the same or decrease with fat loss. Just wondering. Trying to make sense of the results I've gotten.

I've made a poll and it's anonymous I think so I hope you won't mind sharing.

Thanks.

By the way for comparison, average Absolute Vo2max for untrained male is 3500 ml/min and untrained female is 2400 ml/min.

Relative Vo2max for untrained male is 43 L/kg/min and for an untrained female it's 36 L/kg/min.

The mean for Levines study seemed to be between 25-30 L/kg/min. Also wondering if the community here is similar.

Does anyone notice their vision is sort of "dark" when they feel the worst with pots? My vision seems to be "dark" all the time now. It's hard to explain. Anyone kind of know what I mean?

I would just get the odd tingling. I don't even notice it anymore. Parts go fully numb the whole time and I'll only notice when I touch them off something.

Yeah and even a simple cold now seems to go down into my chest and lasts a month if I don't get antibiotics. Has happened again this christmas. What a life.

Wow sounds like a very scary thing. Protozoa clogging veins. God hope they're right about it just being the deconditioning for me.

It seems the highest anyone recommends is 6 days a week. So I guess I can assume 1 rest day is required. Thanks for sharing.

Hey,

The doctors said I needed to recondition my heart. The exercise prescription says 3-5 days a week. And 30-45 minutes at 80-85% of peak heart rate. I'm currently doing the upper max of 5 days a week and working up to 45 minutes.

I was wondering though, if I could go 6 or even 7 days a week and have 1 or no rest days. Has anyone who did Levine's protocol or some other sort of cardiac reconditioning ever been told it's ok to have no rest days.

What I'm wondering is do doctors advise to always have rest days (like 1 or 2 a week) or is it perfectly fine to have the cardiac reconditioning exercise every day. In your experiences have doctors said it would be deleterious to do it every day or that it would be beneficial (get you reconditioned faster)?

I just sort of wonder if exercising every day will set me back or get me back to health faster. Maybe it won't really have an effect at all. People who have gone through cardiac reconditioning, what has been your experience?

I'll be asking a doctor about this but I'm just curious in the meantime.

God that's terrible! I can't imagine how bad this must feel.Do you have a doctor you could talk to about this? At least he could tell you if this is something to be concerned about. Hopefully he would know how long this will take to pass. Maybe it's because of the zoloft cold turkey. You should tell him this is happening and he might suggest weaning you off it instead if its causing this. Hang in there.

Oh if you're talking about like an ultra strong sort of "skipped beat" feeling where the heart feels like it goes a lot slower but each beat is more powerful, well I get them a lot when I'm lying on my back.

I feel like I'm taking up too much air time - sorry about that. Foggy - small fiber neuropathy has been ruled in through skin biopsy (although one biopsy showed yes and another showed no) and he thinks my Valsalva test shows autonomic neuropathy. I think at the very least I do have sensory neuropathy based on symptoms, but can't say for sure if this is separate from POTS or causing it. I always get results that contradict eachother or might suggest things, but they're not sure. Like the standing norepi - it was very high once and totally normal another time. So HyperPOTS or not? I don't know - which is I why I wanted a tie breaker test. I did have an exercise stress test several years ago - maybe I can have him look at those results and tell me if it shows anything abnormal.

Hmmm sorry I didn't realise it was so complicated. You seem to be in complete limbo not knowing if you have neuropathy or not. If you do it would complicate matters in ways I couldn't guess. I think the mayo and others still think exercise rehabilitation can help even if one does have neuropathies, so you're on the right track investigating this angle even if you do. Really hope you can find someone to help you unravel all this soon and help you on the path to recovering some form of normalcy.

Btw my valsalva showed some form of "early autonomic failure" (can't remember the exact words) but when I went to the mayo they ruled out neuropathies, so the "primitive" test I had here at home may have suggested something but it was ruled out. (I think they referred to it as primitive or something like that ). So there's still hope you don't have a neuropathy even if your valsalva indicates something. More extensive tests might show you're ok.

But either way I hear exercise therapy can help those even with mild neuropathies. Hope you can find someone to help you along this route. Good luck. :-)

I haven't found anyone very good around here. All the primary care Doctors seem to mostly push you off onto specialists. I can go into the city and see the POTS neuro who diagnosed me, but it's hard for me to get there, so I can't be running into NYC every time I have a new idea. And in this case one of the things I wanted to look at specifically was deconditioning and the shape my heart is in. He is doing the echo, so I'm going to bring this up again when we meet to discuss results.

Hmmm if you could convince your neuro to do the cold pressor test and such and rule out neuropathies then he might be amenable to thinking in terms of cardiac deconditioning. He might know an exercise therapist or cardiologist that would be willing to look into Levine's research and prescribe something similar to Levine's for you, or would get in contact with them and register you so you could know what their protocol is and monitor you while you follow it. This is sort of the route I have followed and am trying to follow at the moment. If you can rule out neuropathies and get the name of a guy who would pay attention to the cardiac deconditioning angle (doctors would sort of know who out of their colleagues would be the best for this) then you could hopefully get better.

Btw an echo probably won't show up a small heart. Levine had to use MRI to calculate the mass. Also the size isn't seen as pathological to most cardiologists, so they will need to read up on Levine's research anyway to understand how this size can effect you in these ways. I don't really think you need an MRI or anything though. An exercise stress test with oxygen measurements should be enough to convince a cardiologist you need an exercise rehabilitation therapy. As long as you've got neuropathies ruled out a good cardiologist I would hope would recognise someone in need of cardiac rehab just by the exercise test. (no need for cardiac mri to measure mass)

Naomi I've found that general physicians and (to a lesser extent) geriatricians are far better than going to a cardiologist when you want them to pay attention to POTS and new research. Do you think it's an option for you to find one in your area?

Sorry I can't say I've had that particular feeling when laying on my left side, but I just wanted to say I have started to get weird sensations in the heart area when laying on my left side lately. Dunno why.

So I go see a local Cardiologist (first mistake) armed with articles (pointless) about hyperPOTS and deconditioning. I had two goals: get him to give me a prescription for laying and standing Norepinephrine and if positive again, talk to him about treating with Clonodine or similar medication recommended for HyperPOTS; have him help me determine if I'm deconditioned (based on criteria listed in article) and/or if I have a smaller than usual heart. If yes, ask him to send me for cardiac rehab. I figured no need for a far away specialist - a local Doctor could handle these requests.

Here's how it went:

"So you have orthostatic hypotension" (cliche` #1)

"No, I have POTS"

"I've never heard of that, what does it stand for?" (cliche` #2) At this point I knew I was in trouble and pictured myself running out of there like the roadrunner, leaving only a puff of smoke.

"Postural Orthostatic Tachycardia Syndrome"

All he hears is "orthostatic" and says, "You have orthostatic hypotension."

"No, I have orthostatic tachycardia"

"I've never heard of orthostatic tachycardia. So you have palpitations. How often?"

"Um, when I stand up" (hence the "orthostatic")

So he doesn't trust me that I don't have OH, and says "I'll be the judge of that"... even though I have just shown him tilt test results which shows OI, not OH. He makes me lay down and stand up to take my blood pressure.

"You don't have Orthostatic Hypotension"

"I know, I have POTS"

"What you have is very rare. No other patient in my practice has this." (cliche` #3)

"So anyway, Dr, there is this thing called Hyperadrenergic POTS. I was hoping to be tested.... they treat with Clonodine..." I break out the article and past norepi results.

He looks at past norepinephrine blood results which were 1001. And says, "I don't think this means anything, it's only slightly elevated."

I try to bring up deconditioning, break out the article - he's not listening, he has his own agenda.

"So here's what we're going to do - a 24 hour holter monitor and an echocardiogram." Standard Cardiologist protocol I guess.

So here I sit with leads on my chest, a heavy black box hanging from a strap around my neck that smells like old lady perfume, which I'm sure is residue from his poor last victim. Nice man, but if he would have just listened to me, took the time to look at the info in my articles, I would have met my objectives today. And I do blame myself- I should have known better. But the good thing is for the first time I'm not upset or angry - I'm actually amused and had to share with the only people in the world who would understand why.

Naomi I'm so sorry this happened. I've had similar experiences before. Please don't give up. What I think you need to find is a "General Physician", and maybe one who has dealt with people who have had chronic illnesses before and is used to sticking with people even if the answer isn't so simple. A nice doctor recommended me to a colleague of his that fits this profile. I hope you can find someone the same. A very specialised doctor I find (neurologist/cardiologist) frequently has little interest in something so systemic as POTs and its underlying cause. A General Physician I think would be far more likely to be willing to look at a systemic illness that effects so many things and most of all (the most important thing) be willing to learn about something new (such as new evidence on the efficacy of exercise therapy [Levine et al.] and how beta blockers are not a good option). You need to find a doctor willing to learn about new illnesses and take on board new science. I wish you the best of luck in this.

I think the first step would be to call your local medical centres and try and find a general physician. There aren't many left around. Everyone is specialised so much. But I think you can do it. Good luck. Let us know how it goes. I myself am trying to get a doctor to sign me up for Levine's treatment and I hope I can do it.

Has anyone NOT been told they are nuts? Every POTS patient I know has been told this.

Lol I actually wonder if any have ever escaped the psychobabblularity regularly unleashed by doctors.