My Mayo POTS Treatment Plan

My Mayo Clinic Plan for Feeling Better…

At Mayo Clinic in 2012, they created a plan specific to my case to help me feeling better. I am planning on monitoring my progress with the plan on my blog. The doctor said I will need to do most of these things for the rest of my life, or once the POTS symptoms get better, they will come right back. What would be recommended for you or patients in the future may be much different.

Sodium: consume more

My sodium levels were low despite drinking 3 servings of Gatorade a day and dousing my food in so much salt other people cannot even stand to eat it. I never would have thought my sodium levels were low! I think the reason I was having trouble is because I rarely eat canned or processed foods. The solution is to drink a few servings of commercial tomato juice. The manufacturer adds so much salt that one 4 ounces serving provides 1/3 of your daily sodium needs. Another option is salt pills which have about 10% of your daily sodium per vitamin sized pill. Personally, I would rather drink 4 ounces of tomato juice than take 3 big pills for the same effect.

Fluids: drink less

Most POTS patients get told to drink more fluids in order to increase their blood volume. I had been told this as well and was obsessed with making sure I drank enough. I was drinking at least 3 liters of non-caffeinated fluids a day, yet was always thirsty. You can imagine how much I run to the bathroom! The doctor said the reason I am so thirsty, despite drinking so much, is because my sodium levels are low. Without enough sodium, my body cannot hold onto the water and it just runs right through me. Since my body is unable to hold on to the water, I am indeed thirsty. If I consume enough sodium, 2 liters of fluid should be enough. I was told getting my sodium and fluid levels in a happy balance is very important to feeling better.

Compression Stockings: wear them

I already wear compression stockings and I need to continue doing so. It squeezes my leg making it more difficult for blood to pool in them. They aren’t the most comfortable or attractive things, but they do help a lot. Also, they make some that look a lot like normal stockings and I can wear with dresses. The level of compression I wear is 20-30 mmhg. This isn’t the lightest compression level, but it isn’t the heaviest either. At first it took me awhile to get them on, but I have gotten better with time. Someday, I won’t have to wear these!

Exercise: 5-6 days a week

I was given an exercise plan that is a combination of strength and cardio. The doctor told me this is something I will need to do for the rest of my life. The doctor said down the road, once the POTS symptoms are better, I may be tempted to skip workouts. She said the symptoms would rapidly come back if I did this. It is kind of intense to hear you need to exercise 6 days a week FOREVER, but it would have been more intense to hear I’ll feel this crappy forever.

Here is the exercise plan…

Aerobic Exercises: 2-3 times per week

  • recumbent (level to the ground) cycle
  • rowing machine
  • phase in upright exercise, such as walking, once 30 minutes of this type of exercise is tolerated

The target heart rate range will be 128-133. Please make sure you consult your doctor if you are going to start exercising because your target heart rate range will be different based on your baseline rate. The good news is, he said your heart rate can go up to 220 and nothing bad will happen! On a scale of 1-20, the percieved exertion goal is 12-14. This is called the “somewhat hard” range and falls between “fairly light” and “hard”.

Strength Training: 2-3 times per week

  • On a leg press machinedo leg presses, toe presses, leg curls, and leg extensions
  • do 8-15 repitions (whatever in this range is best tolerated)

He said I can modify these to do them with resistance tubing and bands, but it won’t have the same impact as a machine does. The doctor recommended using a physical activity monitor in order to be aware of my activity level.

Gameplan

  1. Warm up 5 minutes at an easy pace.
  2. Starting out, do 5-10 minutes of cardio or whatever is tolerable. Do 2 sets of 8-15 reps of each strength exercise. Start out at whatever weight is strenuous, but not so hard I can’t complete the set of reps. As a certain weight becomes easy, I need to increase the weight (I know, some of this stuff is “duh!”). I don’t want to overdo it starting out because this will make me VERY sick.
  3. The goal is to get up to 45 minutes of working out.
  4. Cool down for 5 minutes at an easy pace. It was emphasized I must do this. It is healthy for everyone to cool down, but especially crucial for people with POTS. My blood pressure will rapidly drop (as it would for anyone), and this can make me more suspecptible to feeling symptomatic and even fainting.

Midodrine & Beta Blockers: wait and possibly try in 2 months

Midodrine increase blood volume which helps people with POTS quite a bit. My doctor said sodium and fluid levels need to be in excellent balance before messing with the volume level with a drug like Midodrine. He said we should wait a few months because that will give me time to implement my new fluid intake/sodium intake plan and get the levels balanced. At this point we will consider this drug as well as beta blockers (lower pulse).

48 thoughts on “My Mayo POTS Treatment Plan

  1. How is your exercise program going? I started working out late last year, it took me a while to get going with a few false starts (I kept overdoing it) but it has finally started to take and I’m starting to feel a bit more like my old self.

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    1. It was going okay, but progress was WAY slower than my doctors has predicted. After 3 months, I’d only been able to increase my exercise time by 5 minutes. Any day I exercised, that was it for the day. I was terrible at exercising over the holidays because all the events/traveling was making me sick. I’m back at it so we will see! I’m happy it is working for you!

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      1. I’ve been trying to get back into it for a while and I didn’t think I was ever going to get anywhere, it was so frustrating. I ended up splitting up my workouts into two sessions on workout days instead of one to spread the load a bit and not overdoing it even if I felt ok, I seemed to get a bit of traction just having those few hours break in between.

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  2. Exercise….this is something I’ve been thinking about but am wary cos of ME/CfS fatigue and myalgia. I manage a little gentle yoga most days and notice I feel much worse (dizzy, blood pooling, racing heart all worse) with standing poses compared with lying down and seated poses. How do you find post exercise malaise following these exercises?

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    1. I have to slowly work my way up with exercising. If I don’t, I will get terrible post-exertion malaise. At times like right now where I am in the midst of a terrible flare, I don’t fit in much beyond stretching and a few minutes here and there on the bike. It seems like every time I finally get myself built up to a decent amount of time exercising, something (an event/sickness/bad symptom day) strikes and my progress is lost. I have accepted that this is how it is for now, and just keep starting over from square one. I have had to completely change the way I look at exercise. I’m not “weak” or “giving in” if I cannot do as much as I would like, I am being smart and listening to my body! At the same time, with where I am at health-wise, exercise never really feels good, but I still have got to try and force myself to do a little bit of something.

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  3. Guess, our Dr must have got her training with the Mayo Clinic. This is our treatment plan almost to a “T”. Although, there are a few differences. Not so much exercise. No walking. Stationary bike was suggested along with swimming. My girlie is very tired and weak right now. We are not pushing to hard right now.

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    1. I agree on definitely no walking! I cannot wait until the day I can graduate to upright exercise, but right now it’s out of the question. I wrote a post awhile back that talks a bit about the importance of exercising our bodies are parallel to the ground as possible. https://lethargicsmiles.wordpress.com/2013/01/10/my-zany-heart-on-grocery-shopping/

      Your daughter is lucky to have a Mom like you who understands and a doctor who does as well! If you’re new to this, I recommend asking about testing for what type of POTS your daughter has. Not all hospitals are equipped to do this which is where Autonomic Clinics come in handy.

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  4. I have been recently diagnosed with orthostatic intolerance at the Mayo Clinic and now that I’ve returned home I cannot find a doctor to follow my care..I’ve gone to two cardiologist, neurologist and rheumatologist and all said its not somthing they manage. I’ve been removed from payroll on my job pending termination. Not only do I need a doctor just to monitor my care but also need a letter to give to my company listing the many limitations I have or things to avoid to see if they can accommodate my position. The Mayo doc does not do follow up care so once you leave they expect you to find a doctor in your hometown. Does anyone have advice and has anyone filed for disability for this condition and what was your experience? I’m a single mom and sole provider… This has been th greatest challenge of my life and that says something considering things have never been easy. Help please!

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      1. Hi there thank you so much for replying! I moved from Michigan for a job here in Atlanta, GA and need a doc here at least for the next three months. Then I’m moving back to Michigan, if I’m not completely recovered ..Im realizing I’m not going to be able to hold a job, as I am, and will need to live with someone. My life has come to a screeching halt and am losing everything and all with dealing with a health crisis..with little support from anyone. My family acts like they don’t believe me because no one ever heard of this condition. My cardiologist That was treating the tachycardia said he couldn’t even support the diagnosis because I wouldn’t be able to sit and stand in his office without passing out which for me my symptoms are greatest during the night and the morning hours I’m unable to sit up and stand in the night to use the bathroom and forced to use a bed pan. Some days it can take me an hour to an hour and a half to go from sitting to standing in the morning without triggering a traumatic heart episode. There are list of things like certain positional changes, heat, certain exercise, picking up heavy items and even stress that are complete triggers. I have low blood pressure that runs around 95/60 and again because the cardiologist said my blood pressure didn’t drop upon standing it couldn’t be pots however for me my heart rate skyrockets from 60s to over hundred from sitting to standing in seconds and depending on how high it goes and how long it lasts can be very traumatic. During my menstrual cycle I’m pretty much bedridden for 2 to 3 days. I have the treatment plan from Mayo which does give me some improvements but it’s an all day job to monitor my sodium and water intake prepare meals throughout the day and keep up with the exercise program. Im very discouraged as I am a single mother and have no way to support myself without a job I’m conceened that I won’t get disability if I start that process just because of the reactions I received already from my cardiologist and a few other doctors because they said I should be more symptomatic througout the day and should be able to capture a blood pressure drop. Do the doctors not understand that I’m on a heart medication now that helps to block the tachycardia and with all my efforts of sodium and water intake my events are not brought on as easily during the day at least. The Mayo doc was very clear that the tilt table test and just taking blood pressure is not fool proof because those changes happen so quickly it’s the increase in heart rate and classic symptoms alone which can make the diagnosis. Btw..I’m so grateful you have written this blog I need to connect desperately with people that have this condition or I would feel completely lost. I am reading all of the information you posted as I am desperately looking for things to try or improve my condition. I’m extremely frustrated as several weeks ago my company has removed me from payroll and demanding a letter from a physician stating what I can or cannot do. I have a diagnosis and I have a treatment plan but I don’t have a document stating the list of things that bring on my episodes or things to avoid to try to save my job because I cannot find a doctor that believes the diagnosis… it’s unreal. I’m so sorry I am writing so much but this is the first time I’ve communicated with anyone regarding my condition …one more thing do you know anything about air travel it seems when I have driven in higher elevation areas I become very lightheaded and extreme pressure my chest I may be required to fly in an airplane and I’m very concerned if this might trigger some catastrophic event, let me know if you have any research or it. Thank you again so much for your blog and responding back to me ..may God richly bless you and your family with peace health and happiness always!

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        1. Hello. I’m 15 and I just wanted to let you know I understand your struggle. It took me many years for a doctor to tell my family and myself what was b wrong with me, and we are still on the process of finding out how to treat it. I’ve seen many doctors, prior and after my diagnosis, that says that there is nothing wrong with me, it’s psychological, and even. That they just simply cant help me. I just want you to know that there are people who understands what you’re going through. I know this process of finding what fits for you individually, as a single mother and with no support system, may seem discouraging. But I am here to let you know everything will get better with time. There is always a bad storm before you’re able to see the the rainbow and blue sky. Stay strong hun~💚

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          1. My son is 14 and going through the same things. I’ve never been more frustrated. We’ve been dealing with this since April. July he got diagnosed with POTS then had a tilt test blood pressure didn’t change so maybe it’s not POTS, but he continues to pass out frequently, is exhausted hardly can get out of bed and has only been to school 6 days. He’s sad and depressesd and scared.

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            1. I am so sorry to hear what your son is going through.

              Blood pressure is not part of a POTS diagnosis. A POTS diagnosis is made when going from supine to standing, heart rate increases by 30 beats in adults, 40 beats in those under age 19, and it stays that way until the person either passes out or is laid supine, and the person does not have severe hypotension.

              Nothing will make coping with POTS easy, but a good counselor can help so much with coping with the fear and sadness that comes with such a life altering illness.

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    1. Probably between 3-4 grams of sodium Just in case you are not aware, salt is only 40% sodium so 1 g of salt supplies 400 mg sodium. I start each day with 2.6 grams of sodium. The best way to find the optimal level is how you (or the POTSie) feels and holds on to fluids and a 24 hour urine collection. Blood is not an optimal way to check sodium levels for the purposes of sodium/fluid loading.

      I talk more about sodium levels and my fluid/sodium routine here: https://lethargicsmiles.wordpress.com/2013/05/16/breakfast-of-champions/

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  5. When I originally commented I seem to have clicked the -Notify me when new comments
    are added- checkbox and now each time a comment is added I
    recieve 4 emails with the same comment. Is there a way you are able to remove me from that service?
    Thanks a lot!

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  6. Hey you are very inspirational and this helps a lot because I’ve been trying to get better again with my POTS. A lot for me is mentally knowing I can do this. Going from a college football athlete to this has been very rough for me and my family especailly having a 14 month year old daughter. How do you handle the weeks where you are not feeling well? What helps make things better for you?

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  7. I am a 53 year old guy and have had POTS (or POTS symptoms) as far back as i can remember. For most of my life I have been very active (run five miles daily, swim couple miles a day, bike everywhere). The exercise definitely helps and you will regret it if you start to feel good and cut back or stop. I am still quite active and look young for my age, which is odd cause POTS is so draining. Anyway, exercise, regular sleep, follow your own sleep patterns (don’t try to be a lark if you are an owl), yoga, massages, chiropractic (HUGE help, sometimes hard to find a good doc), proper sodium/fluid balance, good med balance (we are all different, i take Adderall, klonopin, and ambien), self employment if you can do it (it gives you the flexibility you need for bad days), good sleep environment, cool comfortable air temperatures, small amounts of caffeine (that can be tricky because it has to be when your body is receptive to it), avoid alcohol, direct sunlight, too much time in saunas or hot tubs. Avoid large meals and eat a little extra protein than normal. Avoid gluten (pasta/bread) and/or sugar as much as possible (Ben and Jerry are not your friends). I have more but those are the ones that seem important. A understanding doctor (sometimes you HAVE to teach them), and an understanding partner, family, or friends are really critical too. And make a list of the things you like to do or want to do and find a way to do them. It just makes you in charge of your life, and not the POTS. Its tough going, but you can find a way. Most people don’t get it, and unless its matters, don’t expect them too. Who cares as long as you do? POTS runs in families sometimes and you can help each other. Hope this helps someone, good luck to all.

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  8. My 15 year old was diagnosed w POTS. She is ALWAYS dizzy despite increase in fluids, salt and excercise 3 days a week. Any suggestions?

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    1. Does she experience hypotension or orthostatic hypotension? If so, maybe you could ask the doctor about Midodrine.

      Compression stockings aren’t very comfortable but can help if she has blood pooling and most people get used to them. I do thigh high 20-30mmhg. My favorite for how they feel is Jobst brand Opaques. In black, they look just like tights.

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    2. Hi I am 15 years old and I have the same problem. My POTS is not to the point of fainting, but I am constantly dizzy no matter what. I have tried Florienf, Gaterade, salt tablets, exercising, and increasing fluids. I am on home bound now for school and I am so tired of being at home all day unable to do anything, see my friends, etc. Has your daughter gotten any better? What have y’all done to improve dizziness/cope with POTS? My doctor has prescribed me beta blockers, but I am scared to take them because I don’t want it to mess up my blood pressure because I do not have low blood pressure. Has your daughter tried any medicines? Any tips would be appreciated- I am desperate. Thanks!

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      1. I am not the person with the daughter, but I wanted to suggest talking to your doctor about Corlanor (AKA Ivabradine) if you aren’t comfortable with beta blockers.

        It lowers heart rate without affecting blood pressure. It has been around in other countries for years and was approved in the US this year. Prior to its approval in the US, many US POTS patients were prescribed it and ordered it from Canadian pharmacies. It tends to have less side effects compared to beta blockers because of its mechanism of action — it is more specific in its target.

        Alternatively, you could give the beta blocker a try on a day where you have people around to help if needed and no plans. If they lower your blood pressure too much, just discontinue using them and check them off the list.

        Some people are prescribed stimulants (Provigil, Nuvigil, Concerta, Adderall, Vynase) to help with the lack of focus and fatigue that comes with POTS. It seems some patients experience an intolerable increase in tachycardia while others do not, or do experience it but think it is tolerable/worth it. I had slightly worse tachycardia at rest when first taking stimulants, but it went away with time.

        If you don’t already do it, anything you can do to manage stress is hugely helpful since stress exasperates neurological issues. It won’t “fix” you, of course, but it can make a big difference in how bad symptoms get on any given day. Meditation, music, spending time with people you love, painting, writing, yoga, scrap booking, working out anything on your mind that is worrying you with some one you trust or a therapist…. there are loads of options and it is worth the energy it takes.

        Best wishes as you try and sort everything out.

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  9. Anyone looking for compression hose I recommend checking out Ames Walker hosiery. They have all the major brands but also their own brand in a lot of varieties and a MUCH lower price. Made in North Carolina. Very easy company to deal with! Good luck…

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  10. Hi, I have been diagnosed with POTS and CFS/ME, it has been two years and I have made no progress, I’ve had better weeks and worse weeks but as I learn more about POTS, thanks to blogs like yours ! I realize most if not all of my symptoms are actually from the disautonomia, but I think many parts of my nervous system are affected not just blood flow, it’s making me question if I have CFS at all, my question for you is do you know why exercise is suppose to help? Other than not deconditioning, how does it help heal the ANS?

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    1. POTS is a type of Dysautonomia which means a malfunction of the autonomic nervous system, so it is more than an issue with blood flow. Anything involuntary is up for grabs. Exercise is supposed to help because it will make the muscles stronger which will result in improved circulation and improved response to posture changes due to an ability to pump blood back up rather than it pooling in the legs. For some, it helped, however for many patients, it is not a cure.

      Good luck!

      Many patients, myself included, are diagnosed with CFS before finding out they actually have Dysautonomia, so you’re not alone.

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    1. Some patients find salt tablets helpful. I personally did not because they hurt my stomach (I was recommended Thermotabs which are buffered) regardless of if taken with a meal or not. They have 180mg sodium per tablet which is not very much when how much sodium I need to consume is considered. I find it easier and more affordable to drink my sodium. Here is a link on where I get my liquid sources of sodium:
      https://lethargicsmiles.wordpress.com/2013/05/16/breakfast-of-champions/

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  11. Jackie,

    Bravo to you!!!!!!!!!!!!!! I have asked for clarity on what “liberalize your sodium” means and you made it easy. I do not like salt and but salt free potato chips and nuts. V-8 will be the new drink of choice (ok, no Vodka in it) I have complained to everyone that when it is really bad I can urinate every 15-20 minutes. They say “maybe you have a urinary tract infection”. Ugh! I have had a sore throat for 5 weeks and find your conversation regarding swollen nodes enlightening.

    I am a 52y old fat Black female in Chicago who has finally been given a diagnosis of hyper- adrenergic state of POTS. This after traveling down a long and winding road that included cardiac arrhythmia, Mal de Disembarkment Syndrom, ANXIETY (if someone says that to me again I will scream. Of course there is anxiety, but the symptoms cause the anxiety not vice-versa. Anyone who thinks they are going to fall or pass out is going to get anxious). and more.

    YES……..Exercise helps. I received the Dr. Levine protocol and over the summer did an altered version under the direction of a physical therapist. I could do some walking when I started it; and rode the recumbent bike. Due to bilaterally shoulder injuries I cannot do strength so we added stretching and isometrics.

    I improved to the place where in September 2015 I traveled alone to Philadelphia to see Pope Frances. During that trip I walked 32,000 steps a day (yes thirty two thousand). November 06 I was out dancing.

    I came home, got lazy and now can barely make to the curb to get in a car. My house looks like the devil and I want to go shopping and dancing.

    Beta-blockers dropped my pulse to 40; so last nite I started on Clonidine but it too dropped my pressure/pulse.

    Jackie, I just love you. You were GOD sent into my life today!!!!!!!!!!

    Bless you because you make us old birds remember there is hope and a light at the end of the tunnel.

    Lanise
    The Windy City (Chicago)

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  12. I am a 17 year old female, and was diagnosed with POTS a few months ago, so im trying to put my treatment plan into action. I know how to workout, like with what machines and such, but i’m in highschool and im wondering what time everyone or anyone has found is the best to exercise?? i’m worried that if i work out at 7;00am before school, it will worsen my symptoms all day at school. But if i don’t work out then I dont have to blood flow going that you are able to get after exercising that is supossed to help. SOS im just a confused teen!

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    1. The best time will vary for everyone, although I do seem to notice most people don’t do their best right after waking up. I think this might be because medication hasn’t kicked in and we need rehydrated.

      I think the best way to figure this out may be to try different times and variations of your routine and track your symptoms. Maybe try your complete routine on a day off, then try and sit up how you would need to at school for as long as you would need to at school, and see how it goes.

      Perhaps you could try doing a small amount of physical activity before school rather than your whole routine?

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  13. I am 43, recently diagnosed with dysautonomia after almost two years of debilitating symptoms. I am now under the care of an excellent neurologist, my first neurologist simply did not take my symptoms seriously. It is very difficult to be believed initially as a lot of the symptoms (dizziness, headaches, coat hanger pain) are just that, symptoms, not signs that can be immediately confirmed upon examination by a physician. Anyhow, they don’t know the source of my autonomic dysfunction, still searching. I am struggling the most with sleep. For some reason that is where I have been hit the hardest. I have central sleep apnea, diagnosed through a polysomnography. I knew I had this as I was dreaming that I was choking in my sleep or holding my breathe, and I would wake up literally choking or holding my breath, very scary. Of all my symptoms this has been the worst. Does anyone else have sleep apnea or any serious sleep issues linked to their Dysautonomia? I am scared because my neurologist said this is not as common and can be linked to MSA or Parkinsonism, although he tried to reassure me this is unlikely, just a rare possibility. As to exercise, like the rest of you, it was out of the question for a long time, but I am doing better now and I honestly feel the exercise is helping tremendously. I am experiencing less dizziness and my blood pressure is less labile, plus I am getting fewer headaches and less fatigue. I feel like one of the ‘lucky’ ones who is able to exercise. Anyways, any feedback or info is welcome.

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  14. This is excellent help! I’m 17 and I have POTS and stupidly I went straight into exercising for hours once, I nearly died. I am writing your gameplan down and I can’t wait to see how it goes for me. luckily I am not completely bedridden and can walk, but with great discomfort. I’m so lucky to have stumbled upon this page! Best wishes! ❤

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    1. Phew! It must have taken a lot of mental strength to get through exercising that much right off the bat. Keeping conditioned is very important in order to avoid getting worse, but not if it is at a great expense to your health. (that’s my non-medical opinion anyway)

      Let me know how this works out for you. It ended up being too much for me, but that is because we hadn’t addressed the underlying, root causes of my issues. So, those issues were continuing to get worse while I carried out the exercise plan.

      I hope you find a good balance soon, and hope you keep that amazing attitude you’ve got going for you!

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  15. My concern is swimming, zi sm liable to an increase in BP ⬆️As well as ⬇️Drop in the same if I a bit exhausted. Am soeaking if a drop to 90/66 or shoot up to 145/76, so is swimming good for me ir a risk? Kindly let me know on email below

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  16. I’m so grateful I found your blog! After over 3 years and 47 doctors in three states, this finally seems like the right diagnosis, though I’m on a waiting list until February to see a specialist – so in the meantime I’m researching like crazy! I’m grateful that you’ve shared your experiences, knowledge, and tips. Thank you. I’m curious if you’ve taken immunosuppressants (steroids, biologics, low dose chemotherapy) and if those have helped your POTs symptoms or made the symptoms worse?

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    1. Congratulations on finally getting an accurate diagnosis! I hope this leads to more stability for you.

      Thank you for letting me know my blog has been helpful to you. Feedback like that is what keeps me going. I would like to write a whole bunch more, but lately haven’t been able to.

      I have taken immunosuppressants to treat my autoimmune disease, which is the cause of my POTS. You’ve probably read about how if the underlying cause of POTS is autoimmunity, treat the autoimmune disease can sometimes improve symptoms. Steroids help my autoimmune symptoms (fever, swollen lymph nodes) and because they result in fluid retention, help my blood pressure. Otherwise, I don’t notice an effect on my POTS. Plaquenil didn’t affect my POTS much, although for some reason I did faint easier while on it – not enough to discontinue it. This is unusual and I haven’t encountered any other POTS patient who had the same issue with Plaquenil. I discontinued it because it was ineffective for my autoimmune symptoms.

      I currently am trying to get IVIG, which if you search, you will see I have written about quite a bit in the past two years or so. 🙂

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  17. Thank you so much for sharing. I am newly diagnosed with POTS and peripheral neuropathy. My doctors plan was similar but vague. He said I need to increase my fluids, my salt and exercise. I’ve been feeling so crappy lately, I had no motivation to do anything but sharing your plan has motivated me to do what I need to do to start feeling better.

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    1. I hope it helps you! It turned out not to be what I needed to get back to fully functioning, but it helped a little since deconditioning can make POTS symptoms much worse. Was your doctor able to identify a cause of your peripheral neuropathy?

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      1. Jackie..First I would like to thank you. I was so excited to see a workout plan, that I didn’t notice it was over 3 years old. May I ask if you are doing any exercise now?

        I am very newly diagnosed after looking for answers for 3 years. I have read many of your posts and I can only imagine how many lives you have helped by sharing your journey.
        No, the doctors do not have answers for my peripheral neuropathy… but all (neurologist, rhemotologist, and cardiologist) have told me that many times they don’t know why.
        I am so new to “all of this” and most fearful about how this illness progresses as it does seem to be advancing. Have you heard of or experienced a burning numbness on the back of your legs… as well as arms and feet? No doctor is able to give me any answers. The last 3 days have been the worst, so far… and having no answers makes it all worse and scarier.
        Thank you again, Randi

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        1. Yes you may ask! I try and be an open book. Also, thanks for your appreciation!

          What I ultimately found is that while exercise is incredibly important to avoid POTS getting even worse, it cannot stop the nerve damage, which is what is causing POTS in my situation (and it sounds like yours). Therefore, while I did increase my muscle tone, it didn’t result in any improvement in symptoms since I was not deconditioned at that time.

          Unfortunately, I now AM deconditioned because of bouts of my autoimmune and autonomic diseases flaring up so horribly that I couldn’t exercise AND meet my daily basic needs (like eating). I am slowly working on regaining strength because I know I would feel a little better than I do if I weren’t deconditioned.

          As for my exercise habits now — I do not do as intensive of an exercise routine. I try and do 15+ minutes of strengthening exercises 3-4 days a week, and stretch for 20 minutes every single day. I also take care of our house as best as I can, so that adds activity. My advice would be that if you can do an exercise routine, do it. It can only help, and I think the worst thing a POTS patient can do is become inactive because it is difficult to become active once you’re deconditioned. Also, deconditioning itself can cause a host of symptoms.

          Burning and numbness are very typical of small fiber peripheral neuropathy. It is important to try and identify the cause of peripheral neuropathy if possible, because if that can be treated it can stop further damage, and sometimes symptoms will improve. Autoimmune disease is the cause of mine, which it sounds like you have already been checked for since you see a rheumatologist. I am not sure if you are medicating already, but there are meds (Lyrica, Topamax, Gabapentin) you can try to help with the burning if it gets to be intolerable. Mine isn’t constant, so I prefer to go without the meds since they can affect cognition. What is right will be different for each patient! Sometimes I find if I put heating pads on the limbs that are bothering me most, that even though the heat does nothing for nerve pain, the heat is sort of distracting from the pain.

          If you haven’t seen it already, go to the post I am about to link and scroll down to “New Nerve Pain.” I talk a bit about neuropathy and the underlined words are links with all sorts of information. https://lethargicsmiles.wordpress.com/2016/06/18/lack-of-posts-brought-to-you-by-poor-health-and-insurance-companies/

          Don’t give up. Keep seeking out information! I think it’s the most difficult at first. The more you learn, the easier it gets to assimilate new information into what you already know. Take mental health breaks as needed. 🙂

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