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Postural Orthostatic Tachycardia Syndrome (POTS)/Need to increase sodium
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(cross posted from the main forum...since POTS occurs mainly in women, it might have been better to post it here in the first place)

Has anyone ever had any experience with this? I was diagnosed with this yesterday after 5 months of trying to figure out what has been going on with my body.

For reference, some of what started going on is here: http://forum.slowtwitch.com/...rch_string=;#2076481 and here: http://forum.slowtwitch.com/...rch_string=;#2175212.

Further info on POTS is here:
http://en.wikipedia.org/...tachycardia_syndrome
http://www.ninds.nih.gov/...ycardia_syndrome.htm
http://home.att.net/~potsweb/POTS.html

Thankfully my case does not appear to be as severe as it could be and the dr doesn't know what set off my symptoms so quickly, as he said I have probably had it all along.

For now, the treatment plan is to increase my sodium intake to 5000-6000 mg a day! I recently realized I was probably borderline hyponeutremic as I have always had over a gallon of water a day, but starting with my allergy diet in the fall and even moreso since the start of the new year, I have been averaging way less than 1000 mg of sodium a day.

I also am supposed to wear compression socks now for biking and running. I just wish I could get some printed with "I have a heart problem" so people don't think I'm some wannabe out plodding along at a snail's pace at the park wearing $60 compression socks.

If my symptoms don't improve, there are a few drugs they can try to make my kidneys retain salt in a better way, and beta blockers. Beta blockers are apparently total hell to be on, so I'm crossing my fingers that I do not have to go down that route. (also secretly hoping 5000-6000 mg of sodium doesn't completely wreck my status in the Biggest Loser challenge at work!).

Has anyone ever been diagnosed with this? I have found barely any info at all regarding POTS in athletes. I'm also trying to figure out the whole compression sock thing. I have to wear them while bikng and running now. I wear the injinji socks on my long runs and don't want to have to give those up. I did find that injinji actually has tall compression-like socks now, but I don't know how much compression they offer (they are in the mail now). I am also trying to figure out what to do about racing. I've read some of the other posts regarding the sleeves, but for medical purposes, you really need the compression down into your feet, not stopping at your anlkes. I did find some toeless medical compression socks I will try out as well, hoping I may be able to swim in those.

Lastly, does anyone know of any salt tablets that have more sodium that S! caps? That is the highest I have found so far and at that I would have to take 15 caps a day! I have been eating healthier than ever and seems like I have to change my diet for the worse to get more sodium. I do not want to increase the calories I have to eat in order to take in more sodium because at the same time I'm trying to maintain my weight/lose ~3-4 lbs for race season. I'm afraid the 5000-6000mg is going to make me the michelin tire man instead.

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Kathleen
http://kcwoodhead.blogspot.com/
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Re: Postural Orthostatic Tachycardia Syndrome (POTS)/Need to increase sodium [KWTriGrl] [ In reply to ]
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K, I have to ask you this, have they Dx'd with with SIADH also or have they even checked that possibility? Also is your BP real low when you move around, get up, etc? That could be why you are getting tachy, your body is in a feedback loop and trying to correct itself back to homeostasis aka baseline.

Definitely take it easy on the water consumption. Maybe have G2 or a water with an electrolyte mix instead of straight H20 for awhile. Since you are in on some sorta biggest loser competition with co-workers really look at what your diet has been previous to this Dx and now. Make sure you are getting enuf cals and aren't shorting yourself, which can also play into your hypotensive/tachycardiac state(s).

I'm thinking the docs want you to wear compression socks because you may be prone to a DVT (blood clot) in your lwr extremities, also helps combat major swelling which you may have from being hyponatremic since your lymph system is having trouble draining all the excess fluid. When running, I wouldn't worry about finding a whole sock that covers your foot. It is more your ankles on up that they worry about. I've never had a pt that had clots that had formed in their feet and traveled up, tho I'm not saying it couldn't be impossible, just haven't seen it or heard of it. Don't be worried about what you look like with compression calf sleeves and/or tights. If you are worried about covering your feet, get some TED hose from a medical supply place or even your MD ofc. and wear them when you aren't working out.

Again check your diet out. Lots of foods that you would never realize have substantial amount of salt in them. Start counting salt Gms in everything. Most of us get way more daily salt than we need and that is just when we eat normally.

Good luck.

N~
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Re: Postural Orthostatic Tachycardia Syndrome (POTS)/Need to increase sodium [KWTriGrl] [ In reply to ]
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If someone is hyponatremic the current standard is to place them on a fluid restriction. Liberalizing salt in the diet is not that helpul, as table salt(NaCl) is only 50% sodium.
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Re: Postural Orthostatic Tachycardia Syndrome (POTS)/Need to increase sodium [kitkat] [ In reply to ]
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I am not sure what SIADH is, so I'm not sure if they checked for that...

As far as diet, etc, the POTS was an issue before my recent diet changes. It may have come on due to a diet change I had to make starting last September (allergy diet, was told no dairy, yeast, mushrooms, cinnamon, or olives for 3 months). I started eating cleaner because of that and stopped eating many processed foods, but I also still had my fair share of chinese, etc, so I think I was still getting plenty of sodium then. I do not think it was the reason for the POTS.

More recently (start of the new year) I have been trying to lose a few lbs (~5-8 lbs, about 2-3 more to go) so I really cleaned up my diet and started eating lunch and dinner every day from a place we have in town called My Fit Foods - they prepare food using no preservatives and most meals have under 100mg sodium. My breakfast consists of fruit and an english muffin usually, and the english muffin probably has the highest sodium content of anything I eat in the day, just aroudn 200mg. I only started to think about the water/sodium when a neurologist brought it up during some testing. I think any hyponeutremia was a recent thing, in other words, not necessarily related to the POTS. When I did start to add up my sodium I was shocked to see how low it was on a daily basis. I am better on the weekends when I take in infinit, etc for my longer workouts, but I don't use anything but water on my shorter ones. I started using G2 or taking a salt tablet before my weekday workouts a week or so ago when I started to put everything together, but before I got the dx of POTS.

The first thing my dr said yesterday was that I was going to have to hydrate as much as possible. I told him I drink over a gallon a day and he said that was good, and that now I just need to add sodium to that to help regulate my blood pressure and thus my heart rate. If the plain sodium does not work, they will try drugs that will help my kidneys retain the sodium.

The compression socks are supposed to help regulate my blood flow/blood pressure, and he said my feet are critical in that process which is why I am needing socks more than the sleeves.

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Kathleen
http://kcwoodhead.blogspot.com/
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Re: Postural Orthostatic Tachycardia Syndrome (POTS)/Need to increase sodium [pookie87] [ In reply to ]
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They haven't diagnosed me as hyponeutremic, just as having POTS. The hyponeutriemia thing is more something I realized when I stopped to look at how much water I was drinking and how little sodium I was taking in. I haven't had any serious problems directly linked to the hyponeutremia, just realized I may be bordering not ok in that department, if that makes sense.

Regardless of whether I was bordering hyponeutremic or not, I still have been told to take in 5000-6000mg of sodium a day now to try to help my POTS. My dr seemed to think the gallon or so a day of water was ok - because he started the conversation off with "you are really going to have to make sure you are drinking plenty of water."

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Kathleen
http://kcwoodhead.blogspot.com/
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Re: Postural Orthostatic Tachycardia Syndrome (POTS)/Need to increase sodium [kitkat] [ In reply to ]
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Ok - looked up SIADH. My blood electrolyte levels have not been checked since October (when I first started having symptoms and when they were the most severe), but at that time they were all normal. So I'm thinking no, not an issue, but then again I have learned through all of this to never say never.

After a normal echo and ekg I had my adrenals looked at (CT scan, blood work) and all was normal there too. I was expecting the cortisol to at least be somewhat off because I was still convinced some of this had to do with overtraining and I thought that would show up there, but didn't happen that way.

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Kathleen
http://kcwoodhead.blogspot.com/
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Re: Postural Orthostatic Tachycardia Syndrome (POTS)/Need to increase sodium [KWTriGrl] [ In reply to ]
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Hmmm, sounds like you have a few more underlying issues other than low salt in your blood work. Tho salt is a major electrolyte so if that is off even a little bit it can cause big problems. I assume that your rapid HR is just that- tachycardia, no atrial fibrillation occurring? Your doc is worried about your blood pooling and unless you have SVT that happens frequently or A-Fib or even abnormal blood clotting issues I'm not really sure why he wants you in compression from the feet up at all times. Also, why a neurologist if you don't mind me asking? If you are indeed hyponatremic it makes no sense that he would tell you to drink lots and then just add mega tons of salt to your diet to offset things. Yeah, I know that I'm probably not getting the whole picture, but you do have my curiosity up.

N~
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Re: Postural Orthostatic Tachycardia Syndrome (POTS)/Need to increase sodium [kitkat] [ In reply to ]
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No other apparent heart issues going on - according to echo, I have the "heart of an athlete." But that is what further perplexed the cardiologist...structurally fine, but not acting the right way.

I have not been diagnosed with hyponeutremia - that may be causing some of the confusion. My sodium levels have not been tested since October, but they were fine then. I had just come to the conclusion on my own, before getting this diagnosis, from talking to a few other people that I might not be getting nearly enough sodium compared to the amount of water I drink on a daily basis. It was almost conincendental that when I got my diagnosis I was told to increase my sodium consumption. I think even if I had been eating closer to a normal amount of sodium, the first line of treatment (5-6g sodium/day) would have been the same.

He is more concerned about compression (circulation) during exercise than at rest because most of my issues come about during exercise.

The neurologist was who performed the autonomic function testing. There are only 30-40 similar labs in America that do that type of testing. I had 5 different autonomic tests performed, including the tilt table test. One of the tests measured sweat rates as well and apparently I had abnormal results in my lower leg for that one as well. So, neurologist to test autonomic system, which proved to be the issue here, not my actual heart.

When you read about POTS, the first line of defense is to increase hydration and increase sodium consumption.

Does my 100% unmedical explanation make any more sense?

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Kathleen
http://kcwoodhead.blogspot.com/
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Re: Postural Orthostatic Tachycardia Syndrome (POTS)/Need to increase sodium [KWTriGrl] [ In reply to ]
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Re: Postural Orthostatic Tachycardia Syndrome (POTS)/Need to increase sodium [KWTriGrl] [ In reply to ]
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So, your telling me that you are more or less pretty healthy other than this POTS syn? Yeah, POTS is a new name for something that has been around for awhile without the name.

I also caught your thread on using inhalers? Are you still using inhalers and have asthma related symptoms?

There are some very well known athletes that have reoccurrent bouts of SVT (supraventricular tachycardia) and they ended up having to have AICDs placed (pacemakers essentially). Otherwise they are healthy from all that I've read about them.

I still don't understand why your MD would want you to increase your sodium intake and continue fluids as you are with a low blood serum sodium level, unless you are on diurectics or something slightly similar where you need fluid replacement.

Anyhow, good luck. Sounds like you are getting the tests you need.

N~
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Re: Postural Orthostatic Tachycardia Syndrome (POTS)/Need to increase sodium [KWTriGrl] [ In reply to ]
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I have tried to read up on your past posts and had kind of a hard time, what I was trying to figure out was if you had a positive Tilt Table Test?
I have and one thing they tried with me was THEOPHYLINE. Its a medication that actually is used for lung problems but is now being used for what you are describing. The main reson for my post is to let you know that this drug, Idon't even know if it would have worked, will have some crazy side effects, including a bad metallic taste in your mouth.
I was actually diagnosed opposite of you with neurocardiogenic syncope and, eventually, 2nd degree heart block. Since are heart rates are opposite its is kind of odd but my initiall treatment (only for a couple of days) was increased salt intake and water intake. I choose to just eat more salt rather than tablets. Its odd to explain to onlookers when you are healthy and you tell them you have to eat salt.
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Re: Postural Orthostatic Tachycardia Syndrome (POTS)/Need to increase sodium [wickedcheezit] [ In reply to ]
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Yes, I did fail the tilt table test. I had that test along with 4 others as part of a full "autonomic function test." The other one that came back abnormal was a sweat rate test - I'm not sure how to read it, but I know the sweat rate in my lower leg was considered abnormal.

Haven't tried any drugs yet, will probably be a while before I do because it will be a while before I know if the sodium/compression route is working. The sucky thing is the autonomic tests are the only thing that finally pinpointed an issue, and I can't exactly get that testing done on a regular basis to check up on my progress. I think it sounds like there will just be a lot of finger crossing, waiting, and hoping.

I agree about the salt part. I bought 4 cups of ramen the other day at Walgreens when I was picking up prescriptions for other stuff and I was embarassed to be checking out. I almost felt the need to tell the pharmacist my whole POTS story just to justify my purchase!

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Kathleen
http://kcwoodhead.blogspot.com/
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Re: Postural Orthostatic Tachycardia Syndrome (POTS)/Need to increase sodium [kitkat] [ In reply to ]
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No more inhalers - I haven't been back to the ashtma/allergy dr since September, so she doesn't know what all is going on, but I stopped most of my asthma/allergy drugs at the end of December. So far I haven't had any problems. I am supposed to go back to see that dr soon so I will bring a full report and see what/if she has anything to say. I just hope I don't get any huge allergy/asthma issues any time soon. I don't think now that the asthma drugs were causing the problems, but I did for a while and I'd still rather be off as much medicine as possible.

Oh, and sodium serum level has not been tested since October, at which time it was normal, if that helps make any more sense. If they had tested it recently it may have been low, due to my low intake, but my intake was fairly low at the time it was tested as well, and it came back normal, so I'm not sure how huge of an issue it is (i.e. if I was really not having enough...even if I was eating a normal amount of sodium, the treatment plan for the POTS would still have been to increase my intake to 5000-6000mg if that makes sense).

...as I eat my sodium-laden slim jim.

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Kathleen
http://kcwoodhead.blogspot.com/
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Re: Postural Orthostatic Tachycardia Syndrome (POTS)/Need to increase sodium [KWTriGrl] [ In reply to ]
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My advice to you, is if you don't have a cardiolgist on board GET ONE ASAP! If you do, question him/her because none of what you are saying is making alot of sense at this point. You have had all of these tests, they want you to wear compression socks at all times, you are not on any cardiac meds?, etc. It is strange to say the least. If you have any type of bundle branch block ie: heart block, then your said cardiologist better be on board and very active in your care. To me being a lay medical person, it sounds like they are waiting for the other shoe to drop more or less. Remember you are your own best advocate. Unfortunately the internet is somewhat safe in finding your answers, but it is only 10% or so. Either get your butt into your doc or get a 2nd opinion ASAP.
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Re: Postural Orthostatic Tachycardia Syndrome (POTS)/Need to increase sodium [kitkat] [ In reply to ]
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I think you misunderstood, I have heart block, not the original poster. It sounds like she acutally has the opposite problem.
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Re: Postural Orthostatic Tachycardia Syndrome (POTS)/Need to increase sodium [KWTriGrl] [ In reply to ]
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How are things going with the POTS? I'm actually pretty familiar with it. Sodium is definitely a great relatively benign way to help. Hope you're doing well!

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You have to expect things of yourself before you can do them. ~Michael Jordan
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Re: Postural Orthostatic Tachycardia Syndrome (POTS)/Need to increase sodium [ironmoe] [ In reply to ]
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HUGE knock on wood....but I think things are going well.

I'm doing IMCDA in 11 days and think this is the best/easiest on my body training I have done for Ironman (this will be my 3rd). I have also trained quite a bit more for this one than the previous two. So....am I better? I have no idea. I hope so, but I am also aware POTS can seem to come and go as it chooses, so we will see.

I backed off the salt a month or two ago - honestly just got sick of doing it. I never really got to the 5-6g that was recommend either, just usually ended up at about 3-4g a day. I am probably back down to ~2 a day now, maybe less, when I'm not counting. I will slowly up it next week though leading into the race just to be safe. I'm still wearing compression socks on my long stuff but have started leaving the socks at home on my shorter stuff too. The heat in Houston is getting almost unbearable, but it does not seem to be taking any worse toll on me than anyone else, so who knows.

I look back and can't belive how far I have come from being so sick 6 months ago and I'm very grateful, I am also remaining cautiously optimistic about it all though too.

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Kathleen
http://kcwoodhead.blogspot.com/
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Re: Postural Orthostatic Tachycardia Syndrome (POTS)/Need to increase sodium [KWTriGrl] [ In reply to ]
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That's great to hear! You know, if you never got to the 5-6 grams, it obviously means that you know your body better than any out of shape doctor dreaming up ridiculous guidelines (and I'm allowed to say that, lol, I am one - just hopefully not that out of shape!).

I am moving to The Woodlands later this month from Tampa, Florida. Not much change in heat and humidity. Good luck and enjoy the taper! I'll keep an eye out for your results.

Maureen

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You have to expect things of yourself before you can do them. ~Michael Jordan
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Re: Postural Orthostatic Tachycardia Syndrome (POTS)/Need to increase sodium [ironmoe] [ In reply to ]
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Wow! I know this thread is ancient but someone has to say something! My daughter has had POTS for 7 yrs now. It is complex and devastating. According to her doctor at Mayo, where they very literally wrote the book on POTS in adolescents, there is absolutely no upper limit on sodium intake for POTS patients. They are instructed to take in as much of it as possible, along with plenty of fluid, to help manage their symptoms. This recommendation is NOT ridiculous. What is ridiculous is that a layperson would criticize the advice of the OPs doctor, who has already shown a high level of skill by even knowing to look for this disease, which is notoriously difficult to get diagnosed at all. Many sufferers are told that they are crazy or faking and see many doctors over the course of many years before they find help. Some are misdiagnosed and subjected to harmful procedures with irreversible damage. I know a young woman who has to spend her whole life flat on her back or she'll pass out because a cardiologist fried her heart's electrical system in a misguided attempt to treat her tachycardia. HOW DARE YOU BE SO PRESUMPTUPUS!
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Re: Postural Orthostatic Tachycardia Syndrome (POTS)/Need to increase sodium [Potsmom] [ In reply to ]
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Hi Postmom,
This post IS ancient!!! And I understand your frustration. I'm sorry your daughter has to deal with this. I've been down a road since my last post, for sure. I've also become a certified sports nutritionist (in addition to a doc who had the amazing pleasure of learning from Blair Grubb). There really isn't an upper limit on sodium for most athletes, actually. At least, not one they'll hit. And I've also recently had an experience with a friend/patient not trusting her doctors and going willy nilly down all kinds of crazy paths, rather than closer to a real solution. Frustrating! Thanks for taking such good care of your daughter and for posting.

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You have to expect things of yourself before you can do them. ~Michael Jordan
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Re: Postural Orthostatic Tachycardia Syndrome (POTS)/Need to increase sodium [ironmoe] [ In reply to ]
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I realize this thread is old but I'll put a bit of extra information on boosting sodium levels or other things to help out with POTS. I have a few friends with it so I thought I may as well share a bit of what they learned so as to make someone's life a little easier.

The low-calorie way to get to get in a lot of salt is through via canned chicken/beef/vegetable broth or tomato juice, adding extra table salt to savory dishes (1 teaspoon is 2300 mg sodium) or via a low-sugar electrolyte replacement drink like Powerade Zero or G2. Nuun tablets that dissolve to make a fizzy drink have been really helpful as well as Saltstick capsules, as they contain a mix of electrolytes rather than just sodium. One Saltstick capsule is the electrolyte equivalent of half a Nuun tablet. Drinking more liquid is important too. Eating big meals or sugary foods can make things worse as can hot weather. Paradoxically, some people with POTS have hypoglycemic swings and should carry some dextrose tabs with them just in case.

As mentioned previously, the Mayo Clinic website has some great information, especially for adolescents.

The compression socks are meant to help keep prevent the pooling of blood in the lower extremities thus maintaining the amount of blood circulating to the heart and brain. I hope the OP got through her race alright.
Last edited by: PumpkinEater: Apr 7, 14 21:18
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Re: Postural Orthostatic Tachycardia Syndrome (POTS)/Need to increase sodium [PumpkinEater] [ In reply to ]
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I'm glad to see this pop up again. I was DXed with POTS in December after 6 months of very frustrating symptoms. My cardiologist (electrophysiologist) is recommending 7-10g of salt a day, which does help (although I don't really ever get up to that high, but I try.) Interesting about the hypoglycemia because I definitely get hypoglycemic symptoms very easy. I find it really helps to eat small, frequent meals which prevents the nausea issues I was also having (and which I think is a common symptom.)
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Re: Postural Orthostatic Tachycardia Syndrome (POTS)/Need to increase sodium [LoDewey] [ In reply to ]
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Funny I have a whole new set of issues I logged into search about and I saw this!

I can say...I think for the most part....my POTS isn't really that bad these days. However, I just got full blood work showing my DHEA is way way low and my CRP (inflammation) is way high. Also T3 a bit low. I don't go to the dr to discuss until April 14 - and this is a "nutritional medicine" doctor that conveniently isn't covered by insurance. Yet she is the one who asks for the tests that show there is a reason I feel like crap and don't recover and have also put on 15-20 lbs that won't go away. My GP runs "full panels" every year and they always come back normal. Anyways, I don't have much of a point right now other than to complain :-)

I am curious to see how everyone else's POTS goes. I'm always curious too to know if my POTS would be way worse if I didn't train the way I do. At first I always said I wouldn't have known I had it if I weren't running and noticing an awesome 190 HR to run 11 min pace but the more I have learned about it makes me think maybe it would be way worse - because they have "seen vast improvements with rigorous exercise regimes"....which they define as like 20 minutes of cardio a day.

_________________________________________
Kathleen
http://kcwoodhead.blogspot.com/
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Re: Postural Orthostatic Tachycardia Syndrome (POTS)/Need to increase sodium [KWTriGrl] [ In reply to ]
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POTS has pretty far-reaching implications for fatigue, sleep, appetite, etc. If you haven't already, please have a regular dialogue with a cardiologist who knows POTS really well.

POTS can definitely get worse with inactivity, so do what you can.
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Re: Postural Orthostatic Tachycardia Syndrome (POTS)/Need to increase sodium [KWTriGrl] [ In reply to ]
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I thought I'd follow up.

After 6 months of salting everything including water (with Nuun tablets) I was still having symptoms. I'm now on midodrene and florinef (I tried each of them separately but they didn't do enough alone) and while those two together did resolve most of the dizziness, I'm still having problems related to the elevated HR/low BP (chest pains, lightheaded at times, shortness of breath, weakness in muscles and SLOW running where my HR is 165 when I'm at an 11:30 pace!) My HR is still over 95 when just standing quietly (sitting HR is 55-60, resting HR is <50). I've just been slogging through my workouts because I know that inactivity will make it worse.

Just went to the cardiologist again on Friday and he upped the midodrene to 5hcl 3x/day, which is currently giving me weird "skin crawling" sensations but hopefully that will go away soon. I did one bike ride on Friday evening and my HR was so low I thought my HR strap was malfunctioning (which it may be!) Didn't ride yesterday due to T-storms, but will test it out today. I did ask my doctor if I just needed to accept that this was my "new normal" and he said no, there are still things to try and that he's not giving up. That was the best thing to hear because my PCP (who I dropped because of this) had basically given up and told me I was "getting older and things slow down." Bite me! So I'm glad to hear the cardiologist say that we are not at the end of our options and he can get me back to feeling normal. And I found a new PCP (who is a locally respected D.O. with a great manner) that is also supporting this.
Last edited by: LoDewey: Jun 8, 14 6:47
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