Ginger_

I only check my HR if I’m feeling symptoms or just did an exercise and am comparing results to what I used to have.  I don’t find that it causes anxiety for me.  Sometimes I will go by number if I’m feeling better but my number is still high I’ll hold off going to the next exercise but otherwise I go by symptoms and not numbers 99% of the time 

On 10/25/2023 at 11:57 AM, donaxemena said:

This is a really old post I am replying to but I wanted to update for me. I have Nuero/hyper andergenic POTS or Hyper POTS. I have slowly gained weight from 130 up to 288 regarless of diet. I have flares. I did not go down the path of medications for the weight because of all the feedback here. I was worried about having more POTS problems on top of everything else. But, now that I have ballooned up and no I do not eat a lot. I barely eat 800-900 calories a day. I am never hungry. I eat good food when I do eat but its not enough. It all started with that Keto diet. I did loose weight initially but then I flared and ended up stopping. Dietitian and md said it was because my body couldn't handle the ketosis state and I went down adrenal insufficiency hole and crashed. This became the story. I would stabilize with weight but each time it would go up a bit higher. Occasionally jumping 70+ lbs in a couple of months. It seemed that I had too much cortisol. all in all, the dysautonomia has affected my system terribly and POTs isn't the only problem from it. The entire endocrine system, all of the other processes have problems with working right on  a regular basis. Just when I feel stable and think I can start to do something to loose weight, I crash. My doctors only suggestions are to learn to love who I am at the moment and they prescribe the meds and I am very in tune with when I have to come down on them or go higher and I have a lot of them. My point here is phentermine is like any of the other meds if you have dysautonomia. It may cause problems sometimes and not others and you may have to try it for a few days or weeks and then come off it and then next time you try it will work great. Its not the meds but rather your system waxing and waning and if you can be in tune with yourself and have report with your doctors then you can manage your condition better. I have finally chosen to go down the path with a couple of stimulants because I also have narcolepsy and ADHD both are "intermittently expressed" and turns out I need the dopamine and serotonin boosts but not all the time. I have been stable for a month now and really wish someone would have told me earlier on that it will be trial and error and that I have to be more proactive with my body. keep notes, communicate with the doctor regularly via messages, and be consistent with everything. It helps to then when you try to tell them that you are continuing to gain weight but you only eat 900 lor less calories. They dont believe you but if its in black and white and in an app then they have to face that medicine may be failing you instead of the other way around. Good luck and enjoy life.

hello! have you tried contacting a dietician or nutrition coach for help? often doctors are not well versed in nutrition and it can be best to reach out to a specialist.  it is common in those who eat so little to have problems with weight.  the average adult has a basal metabolic rate that needs 1200-1500 calories daily depending on age and body composition.   eating less than this can downregulate the metabolism as the body thinks it is starving.  this can lead to high cortisol as you mentioned which can affect blood sugar, water retention, and weight retention.  the calories you DO consume the body will hold onto and store because your body thinks you will starve to death otherwise.

a downregulated metabolism can affect the thyroid as well as the thyroid produces the hormones responsible for metabolism regulation. 

i personally would avoid extremes of either high or low carb diets if I was in your situation and make sure that I was balancing what I do eat, making sure to have protein, fat, and carbs at every meal + snack.

i don't eat a specific diet, just as many whole, minimally processed foods as possible.  I simply eat in moderation.  too much highly refined sugar like a smoothie made from the fruit purees have so much added sugar I know I can only drink part of it or I will have a higher HR.  Similarly, I avoid excess caffeine.  2 cups of caffeinated black tea is my limit unless it wasn't full strength.  even just 1 cup of coffee is so much more caffeine I feel terrible after having it

increased sodium and hydration of course.

its all about balance.

Yep—if I’ve had too many carbs and too little fat and protein I’ve had this happen. It’s a fine balance

ive dabbled with macro tracking and it seems like 35ish grams of carbs paired with around the same of protein is safe for me. If I’m eating that many carbs I really need a good chunk of protein to handle it well

29 minutes ago, Sushi said:

For how long does your HR stay over 100? High heart rates for prolonged periods is something you might want to consult your doctor about?

Depends on if I overdo it or not. Today I was back below 100 after 15 minutes once the workout was finished.  Usually it is faster though. 
 

I have POTS so high heart rates are common for me, the duration just gets prolonged to varying extents when I overdo it.  My doctor did say that things can and will worsen if I overdo it, unfortunately it can be trial and error to figure out what exactly is overdoing it

So I was at the gym doing my PT, had a new workout to try and it just ended up being too much. HR went back to its old ways hitting 193 high and a 159 average (my new average is closer to 140). Took a while to bring my heart rate down, went into my zone out survival mode on the couch and could just feel the inflammation. 
 

Ended up using ice packs to help cool down which helped inflammation greatly and hydrated a bit with some Gatorade, still down a bit. 
 

anyone else basically shut down to survival mode when you’ve overdone it? And any tips/tricks for recuperating? 

I’ve been lucky enough to never struggle with sleep quality. I often fall asleep within 20 minutes of laying down and sleep straight through the night for 9 hours. 
 

i do find that with caffeine beyond mid afternoon can affect the time it takes to fall asleep, taking an extra half hour. Being on my phone (even in night shift mode) will also prolong how long it takes for me to fall asleep. 
 

recently I found I can tolerate melatonin supplements (2.5mg) and I will sleep even more soundly with that. Initially I could not tolerate melatonin at all, it would exacerbate POTS symptoms quite drastically, but my diet has since changed for the better and now I can tolerate it. 

I’ve had POTS for roughly 15 months now, greatly improved with salt and exercise thankfully.  I am wondering if i have another condition on top of it, perhaps autoimmune. 
 

I hadn’t been sick with anything since jan 2020, till September of 2022. Caught a random virus from a friend, a month later i got covid, then on christmas came down with pneumonia (mild case). While on antibiotics i developed white spots *in* my tonsils, which were swollen, and they have persisted since. And a rash developed in the jaw lymph node area.  Negative for strep, EBV, Cytomegalovirus, Herpes. Tried another round of antibiotics, stronger ones and prednisone, swelling came down some, white spots are still there but greatly reduced.  All bloodwork was initially normal in january, then a month later white blood cells were low. Went from a solid 7 to a 2.3. 
 

wondering if something autoimmune is going on since i usually am not sick this frequently. I occasionally do get flushed cheeks, today it looks somewhat like the lupus butterfly rash. 
 

i’ve heard there are correlations between pots and lupus or other conditions. 

34 minutes ago, Bailee said:

My sister keeps insisting that I try the natural route of medicine to cure my pots . I’ve been very apprehensive due to her inability to provide me with proper research regarding natural medicine helping my autonomic nervous systems in the same way midodrine and ivabradine does. I asked her what is a natural alternative to beta blockers she couldn’t give me an answer just that plants can provide same benefits as the synthetic medication I’m taking. I’ve tried to explain to her I’m comfortable with taking medication as it’s my body not hers but she won’t back down. Any advice? Has anyone cured their pots ??

I haven’t cured mine by any means, but i can say peppermint tea lowers the heart rate A LOT. it can bring my HR to stay 55-70 for several hours (before i started salt i would do this before work bc that’s where i’d be really symptomatic, and it would help a lot).

I think you have a much worse case than i do from what i recall, but salt, hydration, and physical therapy are what have helped me greatly.

Best of luck to you!

13 hours ago, Pistol said:

@Ginger_ fantastic news! Thanks for the Update, I am really happy you are finding exercise improves your symptoms! Many of us get to the point where we find exercise intolerable and therefore avoid it, but it really helps to push through, however slowly we can. Yes, my PT also started me out lying and sitting and then it didnt take long to be able to do upright exercises. Remember all the exercises, even write them down or ask the PT to give you a print out, so you can continue the regimen even after the PT has ended!

I have "graduated" to a rowing machine - I tolerate this really well bc I can exercise all my muscles at once while sitting down! Most days I am able to use it twice a day, and if I have a flare and end up in bed then I gradually start from scratch and increase the reps slowly. 

Again - thanks for the good news!

Thank you!
 

Yes! The PT is giving me a list of all the exercises. It’s amazing to me how much of an effect it had.

i had another win today!  there is a specific flight of stairs that always makes my HR hit 155-170 and today it only hit 120! My heart was pounding for a few minutes as per usual but I haven’t done that well in so long. 

@Pistola little update for what its worth

i started pt about a month and a half ago, loosely going off the chop exercise program (it wasn’t one designed for kids but all pots patients) but not at the same time lol. Most exercises are laying down or seated atm, and some kneeling are starting to be added in. The improvement is drastic, I actually had a period of about a week i only had symptoms once or twice, and i’m not feeling palpitations to the same degree if at all when strength training. Stairs are still my enemy, but i feel great when doing basically everything else! i even forgot to take my morning salt dose one day and worked a full day with zero issues. 

currently i’m on a 4 lead heart monitor for 30 days (todays day 3) for getting a second opinion. The past two days were my most symptomatic as i was very active, but i didnt have to stop working at all which would happen previously. I’m also finding people who are actually interested in helping me and researching pots to better help me which is amazing.
 

Thanks for the feedback! 
 

to be honest when the doctor recommended it, he didn’t explain his reasoning much. The script even just says to treat POTS.  I have no injuries or range of motion issues, mainly just intolerance to exercise.  I imagine this is mainly to help circulation to build up tolerance and stamina. 

My cardio just referred me to get PT and I have the evaluation appointment Monday.  The therapist I’ll be working with does have experience with treating POTS patients.  What’s are some of the questions I should be asking? And general expectations? 
 

I should note I’ve never been to PT before so I don’t know what to expect.

On 10/4/2022 at 9:52 AM, MikeO said:

Over the last few weeks i have noticed an uptick with my nose running (just after turning the heat back on). So that sparked me to do a thorough cleaning "carpet, bedding, dusting, replace furnace filters" not sure what else i can do either. I am finally going in for allergy testing this week. i am going to ask the same question. 

Ah that’s fair, I’m not sure if ours have been done yet.

interestingly I haven’t had a flare with it so far, quite the opposite in fact.  My HR has stayed the exact same walking around the house or while making the bed, when previously it would go up a noticeable amount with those activities.

it's the time of the year again where i can't tell if this is allergies or a cold coming on.  i know pots can flare with viral illness so any tips for preventing that or making it easier? i don't have a severe case of pots but I'd rather be safe than sorry with basic precautions

11 hours ago, Pistol said:

@Ginger_ are your feet pale or blue? I often experience cold and numb feet/toes when the ANS is trying to adjust to too much adrenaline being dumped in reaction to a trigger. When that happens I do also feel a numbness on the outside of my ankles. I have Raynauds syndrome. I often wrap my feet in an electric heating pad and after a while they warm up but the numbness may continue. 

No they weren’t at all.  Interesting, I didn’t have any triggers that could’ve caused it which was the weird thing.  I’m wondering if it is Raynauds as it runs in my family

I’ve just had the strangest occurrence.  Both of my ankles on the outer sides feel like they are burning from the inside.  At the same time, my feet are very cold and have some indescribable sensations.  I haven’t done anything strenuous to cause it.  I just elevated my legs to see if that helps, so far no improvement.

I’ve been having this issue as well.  When climbing stairs (more than one flight of 8 at a time) my HR can go from 75 before, to 165-175 during/after and sustain being 40+ bpm over the resting starting rate for several minutes.  It’s quite annoying, is there anything to help calm it?
 

I’m not de-conditioned so it doesn’t make sense.  I can swim 500 yards at a fast pace no problem, avg HR of 155 peaking for a moment at 165-170, yet on stairs it goes higher.  Does anyone else have similar? It seems like the horizontal position with swimming really helps, it’s just crazy the difference in intensity and the results.

1 hour ago, Pistol said:

This is what happens to me ( and is not uncommon for HPOTS ) when something triggers me and all of the vessels constrict due to an exaggerated SNS response ( too much norepinephrine ). Caffeine, prolonged sitting and a high-carb meal ( all of which applied to you in the event you mention in your post ) will likely trigger similar symptoms as what you describe in me as well. 

Good to know! I’m currently in the phase of trying to figure out what my triggers are.  Seems like I can’t have all three factors together. 

2 hours ago, Pistol said:

If you suspect POTS or HPOTS a TTT with neurotransmitter-testing may shed a light on a diagnosis. 

My doctor didn’t want to do a TTT as he doesn’t see them as 100% reliable.  He was leaning towards it being POTS, as was I, and he had me greatly increase my sodium, my water intake was already what he was going to recommend.  So far I’ve responded well, it’s maybe once or twice a week now I’m having a bad day.

thank you for your help, one other question I have is how do you figure out if it’s regular POTS, HPOTS, or another sub-division?  There doesn’t seem to be as much information out there on the sub categories as there are for POTS as a whole.

Hello all! I’m fairly new to the world of POTS.  I started to have issues back in December, and in July is when my cardiologist finally said he thinks it is POTS and started treating me as such, leading to much improvement. I just have a couple questions :’)

is leg pain in the calves/ankles normal? Unless I do something strenuous I formerly wouldn’t have this, but I find lately after a normal day my calves are tight for several days at times.  Can pots lead to overall joint pain? 
 

Can caffeine affect you at times but not always? I was sitting around for a Bible study last night, totally relaxed enjoying the discussion, and I went into tachycardia (100-115bpm but symptomatic with cold hands and feet, numbness in hands and feet, and sweating on my hands) for 30 minutes or so, then it subsided, then came back upon standing and moving around.  Squeezing my calves was what ended up helping in the end.  I had had some iced tea before going with a mild amount of caffeine, but I’ve been perfectly fine with the same tea before.  Can caffeine intolerance come and go? I’m wondering if it could also be that it was paired with pizza which is higher in carbs.
 

19 hours ago, Lily said:

I'm seriously considering embracing it and converting to a biphasic sleep schedule. Plan for 4 hours of sleep, then 1.5 hours of awake time in which I engage in mental prayer and rosary, and then another 4-hour sleep period. The down side is that I will need about 10 hours of bed time to account for the wakefulness period. Has anyone else tried this? I read that the medieval Europeans slept like this, and it is why monks and nuns had a Liturgy of the Hours session in the middle of the night.

i haven't tried it, however I have heard this is an actual thing.  I believe doctor mike on youtube has a video that touches on this.  it isnt as beneficial as the full 7-9 hours but you arent getting that anyway.  might as well make good use of the time :') whenever I wake in the middle of the night (rarely) i do the same

11 hours ago, MikeO said:

I would be a little concerned that you are getting symptoms while moving around. My Cardiologist keeps drilling into me that he wants to know if i start have chest discomfort outside of a resting state.

I would at least discuss what you are feeling with a Doctor.

Wish you the best!   

Why is that? Most of the time I do have symptoms I’m moving around.  My cardiologist hasn’t said anything that it would be of concern, and another physician only presses to know how long each symptomatic episode is.

10 minutes ago, keeponit33 said:

I certainly remember having a pressure or tightness in my chest area with past flares years ago, but I don’t remember it being this bad! 
 

The tightness will normally get worse either the longer I stand or how far I walk. 
 

Can anyone else relate to this? Do I need to just let the flare work itself out? Thanks! 

Totally! I used to get chest pressure/tightness a lot, it’s starting to be much less frequently (thank God!).  I don’t know why it’s getting less frequent but it is 🤷🏼‍♀️. 
 

I’m a fairly new potsie, so I’m not super knowledgeable on flares.  On a bad day I have to take a break from working or whatever I’m doing to get my HR back down, put my feet up, and hydrate even more than usual.  
 

i hope you feel better soon! 

melatonin is an absolute no go for me.  i tried it due to having caffeine and wanting to sleep through the night so i would be refreshed for the next day which would be long and busy.  I woke up in the morning having a terrible pots flare, my heart rate was high and wouldnt come down with standing and the neuropathy in my hands and feet came around, which only happens on very bad days.  

Loratadine aggravated my POTS a ton.  I took 10 mg daily and my HR would spike while simply reading or doing paperwork, I would have chest pain, and the rhythm was not normal.  Once I stopped taking it I saw such drastic improvement that I generally only have a pots flare from large postural changes or exercise.  My heart rhythm went back to mostly normal without it.