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No exercise intolerance and no chronic fatigue, but POTS diagnosis and orthostatic dizziness+headache. What should I do?


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Hey guys, I'm trying to gauge my POTS presentation here.  I've been diagnosed for 5 years now, symptoms virtually unchanged since onset.  Orthostatic dizziness, tachycardia, and headache.  All immediately relieved upon lying down.

One of the hallmarks of POTS patients is that they all have dizziness and exercise intolerance.  However, for me, since onset I've been pretty fit.  I exercise for 3-4 days a week.  I can run 5k's regularly, climb for 4 hours at the bouldering gym, lift weights, etc.  I also do not feel any fatigue.  I can go through my day and the only thing motivating me to lie down is the increasing dizziness and head pain.

What gives? Is this just due to being male, and the female presentation of POTS is skewed towards the exercise intolerance and fatigue?  Any thoughts here?  Should I be pursuing a differential from my doctors?

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I think autonomic dysfunction exhibits differently in different people.

I have had life-altering POTS for the last six years, but only in the last six months have I been diagnosed with Chronic Fatigue Syndrome and started experiencing exercise intolerance. I have continued exercising throughout, with a slight reduction in stamina and ability as time wears on, then suddenly a big reduction. Even today, when I often can't perform simple errands or sit with my family at the dinner table, I still sometimes experience a boost from exercising rather than a drain.

I guess I would just say as one exerciser to another, to be very careful not to overtax your body so that you don't eventually lose your ability to compensate with physical conditioning. You want the conditioning but not a cortisol dump.

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Is your HR high when you feel worse/dizziest? Does it go above normal when you exercise?

 Interesting that your doctor chose midodrine (increases BP) and not a beta blocker if your chief symptom is tachycardia and your BP is normal.  

Though more women have POTS, I am not aware that gender plays a role in the type of symptoms a POTS patient might have.  I also think there are other patients that are able to run and be athletic like you - though rare - I'm not sure it's true that everyone has exercise intolerance.

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It's not a guy/gal thing at all. Nope.

How are you defining exercise intolerance?

Some people can have more or less reactions to activity, especially if you are not used to it. I've been working with a PT for almost two years, just got back from a session, and I am hardly wiped out anymore from them. It's part of the therapy I do there--to have more endurance. I think it's great that you can do physical activity, I exercise and walk everyday--there are a lot of us who do. There are some forums where discussing exercise is practically tabu but there are other places where it is encouraged and discussed--we don't all hide in the dark, there are some dysautonomics that do encourage others to exercise and we have our forums. After a while you learn not to talk about it on the other forums because it stresses out people who don't have the physical capacity yet to do much activity.

 

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Thanks for the reply guys.  It's interesting to see the variety of responses here.  RE: shan1212 and WinterSown, it's good to know there are some others out there who can also exercise without much difficulty.  RE: Yogini, my tachycardia is compensatory for the lack of blood in my brain upon upright posture.  My symptoms aren't caused by the tachycardia, I believe the dizziness and headache are primarily from brain-blood equalization issues.

I got the information about exercise intolerance and fatigue from this POTS talk: 

https://vimeo.com/244851345

It seems like the whole syndrome has such a large array of symptoms and presentations that it's not good to live by any hard and fast rules.  

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For me, I think fatigue and exercise intolerance relate to both the position of the exercise, and deconditioning secondary to having POTS.  I can ride for half an hour on my recumbent bike at resistance level 7 (when I first bought it I used to pedal at level 4), and my arms are also becoming stronger as I use a self-propelled wheelchair. I can only walk for a few minutes and am in real difficulty though, and if I carry a bag up a flight of stairs I am close to cardiac arrest! 

Although I can exercise on my recumbent bike, I feel I am generally weak and deconditioned compared to my previous healthy self 3.5 years ago, or even compared to the average sedentary person, as I spend about 23.45 hours per day sitting or lying. A person who is able to stand without presyncope does small things all the time that they don't even count as exercise, around the house, going out etc that maintains a certain level of fitness that cannot be maintained when chair bound. 

I too am not concerned about "tachycardia" as a symptom - my heart rate would never have been measured by me or anyone else if I had an adequately perfused brain. I believe I am tachycardic on standing due to volume depletion. I have a blood volume test arranged in a nuclear medicine dept in January.  

 

 

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Empirically a lot of people feel better by taking medication to regulate their HR even though the HR might be compensating for lack of blood flow to the brain. The mechanism of POTS is very complicated.  Not telling you to follow any particular path, but I also wouldn't rule out any path or dismiss any symptom, especially if you are seeking improvement.

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The way it was explained to me by my cardio is that tachycardia is usually compensating for low volume / pressure which is good until a certain point. He said there is a point the heart beats too fast for it to properly fill with blood before it beats again. This partial fill means decreased pressure, signalling a need for faster beats to compensate for the sudden decrease in pressure, which then causes the heart to fill even less, triggering even faster beats, again less blood in the heart during the 'fills', etc, starting a downward spiral. The result is syncope.

He said even though it seems counterintuitive, breaking that cycle is imperative in controlling POTS and Neurocardiogenic Syncope. 

This approach made sense to me. The beta blocker didn't solve my problem, but it was a helpful tool for me. I'm not sure if we are talking about the same issues or not. Different types of POTS may work differently.

Brain profusion is a different issue and one I haven't figured out for myself yet. We also took a look at my red blood cells. Mine were at the very lowest number in the 'normal' range in the U.S. My cardio wanted to put me on a drug that increased RBC because as he explained it, 'they are what the O2 rides on. You barely have enough, then due to low pressure, they don't go very fast, so demand is greater than your body can deliver.'  Insurance denied the med and it was too expensive to pay out of pocket with everything else I take, so we never found a solution.

If anybody figures this out, please let me know.

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Beta blockers made me worse, which makes sense as they reduce cardiac output & cerebral blood flow. Once I get my blood volume sorted out, I may consider ivabradine if still symptomatic, but what worries me about that is it is contraindicated in resting bradycardia - my resting HR can be in the 50's. That is awake, probably goes lower when I sleep. Ironically exercise lowers the resting HR, and mine did seem to reduce after I started using the recumbent bike!

I recently saw a good cardiologist & we discussed ivabradine, but he took my point when I asked if he were in a car accident on the way home and lost a significant amount of blood, would he prefer a medication to suppress the compensatory tachycardia, or replacement of the lost volume. Of course that may not be the full issue for me, & not even the issue at all for other patients - not all with POTS even have low blood volume - but I fit the clinical picture of hypovolaemic shock to a tee. I hate how many doctors have forgotten from the physiology lectures in medical school that in the initial stages of shock BP can be normal/high as the SNS goes into overdrive. 

Kim, I am guessing the drug your doctor meant was some form of injectable erythropoeisis stimulating agent like procrit or similar. How long ago was that? There are newer alternatives out there now such as Mircera which is longer acting, & the price of some of them may have significantly come down now there is more competition. If you were paying out of pocket there are also reputable pharmacies in other countries which may be cheaper and will take your prescription and ship your medicine.

I also looked at these, but I would need to know I had adequate plasma before increasing RBCs - otherwise too many RBCs and not enough plasma = blood like treacle which has killed a number of cheating cyclists - and they were healthy to begin with! I think increasing plasma volume may be all I need to do even if mildly anaemic, given how much better I feel in the late evening. Plasma volume is highest in the evening, but RBCs take much more than a day to change significantly. 

 

 

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It can be helpful to keep the perspective that a person’s dysautonomia can evolve over the years. 

My symptoms began 17 years ago. Initially I could still do my favorite sport (fencing). Things gradually changed and I switched to ballroom dancing. After 12 years of that I shifted to non-aerobic water exercise. 

Whatever a person’s particular exercise abilities at the time, if our body changes it can be (in my opinion) helpful to pro-actively seek other options. 👍🏻

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On 12/28/2017 at 12:55 AM, KiminOrlando said:

The way it was explained to me by my cardio is that tachycardia is usually compensating for low volume / pressure which is good until a certain point. He said there is a point the heart beats too fast for it to properly fill with blood before it beats again. This partial fill means decreased pressure, signalling a need for faster beats to compensate for the sudden decrease in pressure, which then causes the heart to fill even less, triggering even faster beats, again less blood in the heart during the 'fills', etc, starting a downward spiral. The result is syncope.

He said even though it seems counterintuitive, breaking that cycle is imperative in controlling POTS and Neurocardiogenic Syncope. 

This approach made sense to me. The beta blocker didn't solve my problem, but it was a helpful tool for me. I'm not sure if we are talking about the same issues or not. Different types of POTS may work differently.

Brain profusion is a different issue and one I haven't figured out for myself yet. We also took a look at my red blood cells. Mine were at the very lowest number in the 'normal' range in the U.S. My cardio wanted to put me on a drug that increased RBC because as he explained it, 'they are what the O2 rides on. You barely have enough, then due to low pressure, they don't go very fast, so demand is greater than your body can deliver.'  Insurance denied the med and it was too expensive to pay out of pocket with everything else I take, so we never found a solution.

If anybody figures this out, please let me know.

Hi Kim,

Thats exactly how Dr Grubb explained it to me as well. The increased heart rate simply becomes less efficient as it pumps faster without sufficient blood to pump. It's literally pumping a fraction of the normal blood volume each beat. By itself the cardiac muscle uses a lot of energy and oxygen itself, so I'm sure it contributes to fatigue and shortness of breath. 

I recently started on Ivabradine, and it's been a wonder drug so far. It slows the HR without the accompanying reduction in blood pressure that a beta blocker delivers. Essentially my heart has more time to fill up with blood between beats and isn't wasting energy pumping inefficiently. My standing HR went from 140-155 down to the 90-115 range in addition to strong symptom reduction.

I too want to try EPO to deliver more oxygen per unit of blood delivered to tissue. My hematocrit is 40% and I feel like a boost to 50% would aid me greatly. Unfortunately there is no way my insurance will pay for it in this case, and it's indeed quite expensive :(

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On 12/26/2017 at 2:23 PM, kaevne said:

I’m on Midodrine and salt. Hr was at +29 in two TTTs.  BP unchanged so it was not OI and I was given a POTS diagnosis, which seemed consistent with my symptoms.

I think this explains it right here. +29 is right on the edge of a POTS diagnosis. Even if you do have POTS your HR is far lower than most people here who experience 40-80+ beat increases. I went from 68 to 148 on my last poor man's TT.  I'm not discounting your symptoms or condition at all but your HR increase is at the very low end of the POTS spectrum. 

I do think there could be something to the male/female differences, however. Anecdotely it seems to me women report greater degrees of disability from POTS. I'm also the rare male with POTS and even with my 70-80 typical increase I can still work full time and even do moderate hikes outside. Men have a higher cardiac output to begin with, larger blood volume, and a higher hematocrit on average so we have more tools in the body's arsenal to fight POTS. There may be other physiological differences in the various blood pressure, RAAS, and vasoconstrictive responses in the body between the two sexes. 

POTS is like 90%+ female so it's interesting to hear from other guys.

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I was similar and able to do 5k runs, cross country cycling for a number of hours each week for a long time.

 

Sure my heart rate raised on standing by 70bpm and Id feel a bit dizzy from time to time but it didn't really worry me too much. My resting HR was down in the 40s so a rise of 70 only took me to 110 but I was used to sitting at an average 155bpm for 3 hours when riding so 110 felt like nothing.

 

Then I think my body ran out of things to throw at it over the course of a few months and it wasnt actually the heart rate rise symptoms that took me to the docs. It was the other symptoms of wacky stuff going on with my pupils and suddenly being totally exhausted from mowing the lawn.

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7 hours ago, m@t said:

I was similar and able to do 5k runs, cross country cycling for a number of hours each week for a long time.

 

Sure my heart rate raised on standing by 70bpm and Id feel a bit dizzy from time to time but it didn't really worry me too much. My resting HR was down in the 40s so a rise of 70 only took me to 110 but I was used to sitting at an average 155bpm for 3 hours when riding so 110 felt like nothing.

 

Then I think my body ran out of things to throw at it over the course of a few months and it wasnt actually the heart rate rise symptoms that took me to the docs. It was the other symptoms of wacky stuff going on with my pupils and suddenly being totally exhausted from mowing the lawn.

Me too. I was in excellent shape too before the sickness, and I did a 120 mile trek at 15,000+ elevation in Peru three months before I started getting dizzy just sitting at work or in the car. Looking back I was abnormally exhausted and my performance wasn't quite what I expected so I think my blood pooling was starting and the symptoms didn't really manifest as noticeable for a while.

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