Chaos

Alison- I think one reason that they might recommend bike shorts is that some research has indicated that for some POTS patients the tendency is for the blood to pool in the splancnic vessels rather than in the legs so some patients get better relief with using compression garments in that region than on the legs. Also why "to the waist" compression hose may work best for many people. Be well!

Hi Lynnie- Aerobic vs anaerobic metabolism is how the body utilizes glucose (basically). I may not get all the details exactly right as I'm brain foggy today but I'll try to explain... Remembering that when you eat, basically everything gets broken down and converted to either glucose, amino acids or fats and then gets processed by the body in some way. When you are in an aerobic state it means that the body is utilizing what's called the Krebs cycle to process glucose. Basically for every molecule of glucose you get roughly 36 ATP (units of energy) out of it. It is a highly efficient energy process but is relatively slow to go thru. Those 36 units of ATP(energy) are then available to the body to be used as needed. This is the state where most people "live" 90-99% of the time. When you are in an anaerobic state you move into a different manner of processing glucose (sorry name escapes me right now). It's much faster to produce energy but for every molecule of glucose you only get 3 ATP out of it so it's obviously less energy efficient and can't be sustained for long. Most people only get to this state occasionally and only by exerting themselves maximally- like running a full out sprint or power lifting weights. It's meant for short bursts of maximal effort. The anaerobic threshold is where you move from being in an aerobic state into metabolizing glucose in an anaerobic state. For most people that happens when they are exerting near maximally and with a high HR. It can be measured using a cardio-pulmonary exercise stress test (CPET) where they measure gas exchange rates along with EKGs, etc. What is interesting is that the researchers have found that people with ME/CFS sometimes have a very LOW anaerobic threshold- meaning that they move from being aerobic into an anaerobic state with very low HRs and with very little effort being exerted. So for example on the CPETs they have found that some ME/CFS patients are going into anaerobic metabolism with HRs as low as 85. If a person is going into anaerobic metabolism at a very low threshold like that, it means that they are in a very IN-efficient pattern (metabolically speaking) of utilizing glucose in their body. If you are only getting 3 units of energy (rather than the normal 36) out of every molecule of glucose, it's no wonder these people are tired all the time. It's basically taking more energy to process the glucose than it's giving them in the end. The confusion between aerobic and anaerobic exercise I think stems from the big "aerobics" push that came out starting in the 80's. It was basically a marketing term but the point was to get your HR up for a sustained period of time when you exercised for cardiovascular health. Since it focuses on getting your HR up it seems confusing to people, but the reality is that it's about being able to get your HR up to a level where you can sustain it for a long period (20-30 minutes) that means it's aerobic exercise, NOT anaerobic. They don't know WHY this is occurring in ME/CFS. Various theories are out there but none has been proven yet. Much more research needs to be done. Meanwhile, many of the ME/CFS docs are recommending that patients avoid sustained bouts of exercise as they generally seem to feel that the aerobic energy system seems to be "broken" in these patients. They are instead recommending that they do short bouts of exercise only if they can be done without exacerbating symptoms. They stress that the rest is as important as the exercise. They say to count your daily activity as part of your overall exercise, etc. They do NOT recommend lying in bed all day and doing nothing however. They want people up and moving but in a balanced manner.

My Fitbit allows you to set silent alarms on it. Since you wear it on your wrist, it's been helpful for using to remind me when to take my meds. I was using my phone to do that but the noise was jarring, I'd frequently have it turned off or it would go off and I'd then forget to take them anyway. Somehow the combination of having this on my wrist as a visual reminder as well as the alarm function helps. I've also found several apps for my phone that are helpful. One I'm using helps sort out food sensitivities/allergies that might be related to your symptoms. Another allows you to track pain along with many other symptoms and then prepares summary reports you can print out for your physician. Another one tracks HR/BP/Pulse/pulse pressure etc. These are much neater than all my paper notes I kept trying to keep to sort things out on my own.

Hi. Your symptoms sound familiar in some ways but each of us is individual and may present in different manners. Also, as galatea said, so many of our symptoms overlap with so many other diseases that it's hard to say for sure. One way that you might start to sort this out is a poor man's tilt table test (TTT). It is frequently said to be best done first thing upon waking but can be done at any time if you have a good period of lying down first, usually 30 minutes is standard I believe. Take your BP and HR while lying down (after this rest period or upon waking), then stand quietly at the edge of the bed, with as little movement as possible, and re-check your HR/BP at increments of 1,3,5,8 and 10 minutes. Record these and notice if you have a 30 beat per minute (or more) increase in HR. Also observe your BP as there are different forms of dysautonomia other than POTS which is defined by the HR increasing by 30 or more BPM upon standing and staying up, along with other symptoms like you describe. You might want to do this on several different days as some days may be more symptomatic than others. It's recommended you stay close to the bed so you can lie down quickly if necessary. Try to minimize movement as that is a compensatory pattern many of us develop which aids the muscle pump in returning blood to the heart. While that is helpful it may mask the ANS dysfunction you are trying to test. Start with these tests and see what happens and then you can move on to your other questions with more certainty. It's sometimes hard to get into the specialty clinics if you don't have some records to show that you have this problem or at least have something to show a suspicion for it.

As far as "moving", I know my doc hasn't said to be totally sedentary by any means but he counts all the activity you do in a day as part of your "exercise". In fact he had me get a fitbit and set a step limit to try to maintain every day. I'm supposed to try to hit that limit every day but not exceed it. Between the fitbit monitoring step counts and a HR monitor to not exceed anaerobic threshold, the idea is that over time you can increase your activity very slowly in a safe manner without having the extreme peaks and valleys of fatigue and symptom exacerbation that I was having before. Not trying to give the impression that people should be lying around doing nothing. It's just a different way of approaching exercise and gives you credit for being active throughout the day. I hear you though. I have become very weak and it's really frustrating. It's a vicious circle because when I try to exercise I end up back in bed, but I know if I don't that's bad too. Trying to find a balance point is a daily challenge. There are chair yoga classes and videos that you might be able to check into. At the studio where I taught (in my past life) we had yoga therapeutics taught by a PT who was really good at making modifications for all types of injuries so you might be able to find something like that near you. You'd probably need to look at a studio rather than a gym for something like that.

It's been awhile since I've been able to exercise strenuously lol, but I do remember having many of these reactions afterwards when I did. I would also have multiple people come up to me at the gym and ask if I was ok because I would be so flushed (red in the face) even while I was still exercising. Do you get migraines or notice an increase in headaches after you exercise? That was another thing I had happening as well.

Very true, especially in a normal patient population. With so many POTS patients having documented low blood volume it's probably less likely to happen with them, but still needs to be monitored by their physicians. Personally a liter 3x a week was a big help for me. Just got too expensive and takes over your life when you have to go to the infusion center that often. Over time it seemed to lose some of it's benefit, so now I find it more helpful if I do it for a couple weeks at a time and then give it a break. For others getting it every day is a miracle cure. Hopefully Becia, you'll find a good solution as you work with your docs.

I don't know if Peter Rowe is accepting new patients but you might check him out as well. He sees pediatric patients. There was a member on here before who was very active but hasn't been on for a couple years. Both she and her son had POTS. Her son was a patient of Dr. Rowe and she always had nothing but glowing reviews for him. Last I heard her son was off at college and doing well. Dr. Rowe is in the northeast part of the country but can't remember exactly where...NY? Baltimore? Somewhere over there. Haven't seen Julian Stewart. Think his research is brilliant. Not sure if they follow people or just do studies and evaluations. Hopefully Chrissy D will chime in with their experience with Dr. Chelimsky. I believe it was very positive. Good luck. Always hard watching your kids go thru health problems!!

Hi Lynnie, One of the benefits of aerobic exercise is that it's supposed to increase your metabolism even when you're not exercising and increasing your HR might be one of the things that occurs as a result of that. In a normal person that's not a bad thing as the increase usually still keeps the HR in a normal range. In your case, the HR increase appears to be happening more than it seems would be a good thing. Of course I'm not your doctor so you should check this out with him, but perhaps the exercise is not being as helpful as one would hope in your case. I was also told to engage in regular aerobic exercise and did it conscientiously for 2 1/2 years but my symptoms continued to get worse. My HR was getting more unstable with exercise but that was only one of the symptoms I was having. I was walking 4 miles a day at a fast speed but that was the only thing I could do all day and it was resulting in repeated "crashes" where I'd end up in bed for several days, only to start working my way back up again and the cycle would repeat itself. IF you indeed have ME/CFS and not just POTS, you might not be doing yourself a favor by trying to push aerobic exercise. It has been documented that people with ME/CFS frequently have a low anaerobic threshold and go into anaerobic metabolism at a very low HR- much lower than a "normal" person would do. (Think about a sprinter in the Olympics as an example of someone using anaerobic metabolism. Usually you have a very high HR to achieve this state. In ME/CFS for some reason it has been found that patients are sometimes in an anaerobic state at HRs in the 80's or 90's.) Anaerobic metabolism is very energy IN-efficient and very fatiguing. If you are in an anaerobic state just emptying your dishwasher or doing the laundry, it's no wonder people are exhausted all the time. The research on exercise and POTS seems to be strong so I'm not discouraging people from trying exercise. I'm a huge fan of exercise. However, in my case, as much as I wanted exercise to cure me, or at least improve my situation, it was making me worse no matter how slowly I built up, or how much I worked up to, or how I tried to switch things around to make it work. That's when I found some of these other articles (links below) and had the testing done which showed that in my case, aerobic exercise is exactly the WRONG thing for me to do. http://www.cfids.org/archives/2004/su04-workingout.pdf http://ptjournal.apta.org/content/early/2013/06/26/ptj.20110368.short Since there is a lot of overlap between ME/CFS and POTS, it may be that some of us won't respond as favorably to exercise as others will. Since all of the POTS studies so far have only done a 1 day exercise test, all the POTS patients tend to look deconditioned (not unlike the ME/CFS patients look on day 1). However, I think it would be really interesting if some of the POTS studies would do a 2 day CPET test and see how many of their POTS patients actually show this dramatic change on day 2, which is unknown to happen in any other disease so far other than ME/CFS. Even with the 2 day CPET results my POTS specialist and cardiologist continue to push aerobic exercise because that's what they know. My ME/CFS specialist however is adamant that it is not a good thing to be doing based on the research that is coming out in the past couple of years. There is currently research indicating that exercise actually triggers autonomic instability in ME/CFS patients and that in turn triggers immune dysfunction. There was a pilot study demonstrating this and I believe the doc received further funding to do a bigger study to confirm her findings. Hopefully we'll be hearing more about her results in the near future.

Good to hear from you. Glad you figured out one piece of your puzzle! 999 more to go Thanks for sharing.

I agree. Too bad insurance companies don't and several are starting to deny any testing for dysautonomia besides TTTs.

One of my medical providers told me that generics have to be within +/- 20% of the name brand so it's possible you are feeling that difference. I'm not a pharmacist so can't say if that's correct or not, but that's what I was told. One of my other docs said she always insists on her patients using name brand first so she knows how they respond to the actual drug before she lets them try generics and then they can compare results when they move to generic versions. Otherwise she says it gets too confusing with all the variability between generics.

Nice! Glad you are getting some answers finally and really glad he is finally getting some relief! Is your doctor helping you interpret these results at all or telling you what to do about trying to correct them?

Congrats! POTS is a pain, but cancer would be a real drag.

It has been very controversial, although I've been hearing more mainstream physicians talking about it recently as though they have accepted it as "real'. Not all of them certainly but seems to be gaining acceptance in many quarters. My daughter in law is in med school and was telling me about a lecture they had on it recently.

One of the theories related to dysautonomia is that there is "excess sympathetic drive" occurring in the nervous system. It would seem logical therefore to assume that we would be more "on edge" and faster to react to any perceived threat (real or imagined). I know I frequently have big startle reactions that are disproportionate to what's going on around me. Sometimes (for example) I will hear my husband walking upstairs and know he's coming, but if the door opening to the bedroom is abrupt or too loud, I'll still screech and jump and get that adrenaline rush. It drives me nuts because I knew he was coming so it wasn't a surprise and shouldn't have caused that kind of reaction but even though my rational brain knows all that, my sympathetic system is still in overdrive and ready to run no matter what. On the positive side, I have really fast reflexes so if I knock something over, I almost always catch it before it falls or spills. People look at me and say "wow, that was impressive". It seems to go in cycles though. When I'm more prone to being startled, my reflexes are faster. Other times, I'm a total clutz, running into everything, knocking over thing, dropping everything and I notice during those times that I don't have as much of the startle reaction thing going on then either.

I think some people on here have been seen by someone in Seattle who has a specialty in POTS. I was thinking maybe you could find a local doc who might not be a specialist but someone who might just be more willing to be an advocate and work with you. Someone who's willing to read articles, or order tests that you've done the research to find, etc. Obviously seeing a specialist is the ideal, but if you really can't travel, finding someone nearby who will work with you (more than what you have now) might be your best option. Since you prefer to avoid meds etc, have you checked to see if you have any integrative medicine docs in your area? They are typically MDs who were trained traditionally but also have additional training in alternative/complementary medicine options.

Congrats! That's super news. I had noticed you hadn't been on for a long time so I'm always hopeful that means people are out living their lives and doing well. Thanks for coming back to let us know that is the case for you. Hope you continue to progress and keep on getting better.

I can certainly relate to your frustration. Had a panel of labs I needed to have drawn from my specialist in California. Thought I should surely be able to get them done locally so I didn't have to fly cross country just for labs. Five trips to the lab, multiple phone calls to customer service to try to insure that they were going to be done right and 34 vials of blood later.....wa la....get my results and the tests were still done wrong. Really folks? And they advertise as being one of the "top 100" hospital systems in the country. Sometimes the fact that they can do the testing locally doesn't mean they can do it right, or that they will be able to interpret it once they get the results. If this doc isn't willing to put in a little bit of effort for you, then you might be better off trying to find someone who is more willing to work with you on trying to get you what you need. Since traveling cross country (to Mayo) isn't an option, could you travel to somewhere closer like another city in your state if you aren't having any luck with any of the local folks? Hang in there. This is just part of the joy of dysautonomia.

Thanks for sharing. Interesting to get your feedback.

Might be worth getting catecholamines tested if you can get them done correctly. Certainly sounds suspicious with your constellation of symptoms. I had them tested at both Mayo and Cleveland Clinic. The protocols were similar but not exactly the same. Basically they inserted an IV, then had me lie in a quiet, darkened room for 30 minutes, then drew blood thru the IV. Then they had me stand at the edge of the bed for 10 minutes and drew blood again thru the IV. Hope you have success getting this done.

Low Dose Naltrexone. There are threads on here about it as well as a lot on-line. Not a lot of "general" MDs are familiar with it, but some are. Integrative MDs, and docs who specialize in areas like fibromyalgia, ME/CFS etc prescribe it frequently. Best wishes!

I don't think I've ever had the flu, but I do know that every time I've had any kind of virus since I developed POTS my POTS symptoms have gotten much worse during and after the illness. Usually the symptom exacerbation has lasted anywhere from weeks to months afterwards. Last year I had pneumonia and it was a good 3 months before i started coming out of the nasty POTS flare it caused. When I've been sick I find that I sometimes fall behind on doing the basic things that are helpful like maintaining fluids, salt, some activity etc., so I try to make sure I'm still doing those as I can. I also use advil or aleve and gentle stretching etc for pain. Recently my doc had me add magnesium and turmeric for pain which seems to have helped also. I have a doc who has prescribed IV saline for me to use when I need it as well and flares like this would be one of those times when it's helpful. Don't know if any of those are options for you? This past year I started seeing a (specialized) immunologist who has found several defects in my immune system and that I carry high viral loads. He's had me on antivirals for about 9 months now. When I had a cold several weeks ago, my POTS symptoms were worsened but once the cold went away, I was at least back to my baseline which was encouraging. The other thing he put me on was LDN which is supposed to have some benefits for your immune system as well as helping with pain. The LDN is available thru compounding pharmacies if you can find a doc to prescribe it. Obviously seeing an immunologist etc takes longer and doesn't provide you with short term help now. Hope you feel better soon.

After reading this link- http://www.cortjohnson.org/blog/2014/01/03/bringing-order-chaos-health-rising-fibromapp-app/ I decided to get the App (currently only works on android phones). While it was designed for people with fibromyalgia and ME/CFS, it can be so highly customized that you can delete, edit or add anything you want for your own personal record. I am finding it very helpful for my own medical situation as well. It allows you to track meds/supplements, pain, symptoms, sleep, activities, aggravating factors, and what your symptoms prevented you from doing. It will also print out summary reports for you to take to take to your doctor. It doesn't track actual HR or BP but you can add journal notes with those readings. Since so many of us are so puzzled by how variable our symptoms are I am hoping this might be helpful for others as well. The more I play with it, the more I like it. I've been trying to track a lot of this on paper, but this is much easier.

I was told by my POTS specialist (neuro) that walking was a good exercise. My cardiologist (somewhat aware of POTS) recommends the recumbent bike etc. for the reasons that Might Mouse stated and because that's what most of the research says. Playing "devil's advocate" however, if you want to train the body for a functional skill, you need to do the activity you want the body to do. What you do in one position doesn't automatically transfer that ability to another position, e.g. doing exercises for a back injury in a lying down position doesn't teach you how to protect your back from injury when you are standing up at work. Using that same theory then, exercising in a compact position close to the floor doesn't necessarily mean that your increased cardiovascular tone will transfer over to being helpful in an upright position. That would be the theory at least when a normal autonomic nervous system is in play. If you have a risk of fainting, I'd definitely stay close to the ground. I have never fainted and a recumbent bike hurt my knees so I chose to do a treadmill along with other upright activities when I did a cardiac rehab program.