Pots encouragement

[Alystew]

 I need encouragement. 

Anyone personally or know people who have mild pots and live a normal life? Kids, work, outdoor activities? 

My pots isn’t that bad and some days I question my diagnosis based on everyone else’s experience with it. 

High heart rate, especially in the mornings, is really my only symptom and I should just probably stay off google and stop checking my heart rate constantly and just live my life. But I’m scared. Everyone’s experience seems so much worse than mine and I’m just here almost waiting for it to get bad. 

Anyone have just mild pots and it’s stayed consistent? Anyone out there living life like as you always have? I just fear for my future and I don’t want to let this hold me back from truely living. I want to be able to do all the things with my children. 

 

 

[WinterSown]

2 hours ago, Alystew said:

I need encouragement. 

Anyone personally or know people who have mild pots and live a normal life? Kids, work, outdoor activities? 

My pots isn’t that bad and some days I question my diagnosis based on everyone else’s experience with it. 

High heart rate, especially in the mornings, is really my only symptom and I should just probably stay off google and stop checking my heart rate constantly and just live my life. But I’m scared. Everyone’s experience seems so much worse than mine and I’m just here almost waiting for it to get bad. 

Anyone have just mild pots and it’s stayed consistent? Anyone out there living life like as you always have? I just fear for my future and I don’t want to let this hold me back from truely living. I want to be able to do all the things with my children. 

 

 

My symptoms swing from better to worse but it doesn't matter, life must still be lived. I suggest you celebrate mild symptoms!!  I'd be doing the happy dance!

You can keep your symptoms mild as can be by practicing good self-management. Eat wholesome food, keep hydrated, exercise everyday for perfusion, and be creative and/or learn a new hobby--keep your sense-of-self as well taken care of as your body. Keep your hands and mind active with enjoyable activities, it's okay to have fun. Especially with your kids.

I don't do 'I'm scared' as an attitude anymore because I found it to be self-defeating. I switched it to 'I will beat this!' and I started to get better. I made a few changes in how I live my life and I can continue to 'live', to ENJOY life again. I know what I need to do to stay as healthy as I can. I accept I have dysautonomia and that its symptoms can swing in and out from a mere bother to full syncopal attacks. So what. I rule it, it doesn't rule me.  I control my self-management, I make decisions first about my care--I don't let dysautonomia rule me. My attitude is that I will improve and I will do it tooth and claw and I will fight for this. I will not lay down and give up. I may lay down when i need to but I get up with determination to get back to living my life.

[MomtoGiuliana]

It's hard to know what the future holds for anyone.  However I do not believe that having a POTS diagnosis is a reason to live in fear of permanent or severe disability.  It seems to be different for everyone for one thing.  Most people do get better and/or symptoms wax and wane.  Often symptoms improve with treatment.  I agree with Trudi that the best you can do is to take great care of yourself, stay hydrated, exercise as you can, and try not to worry about things you cannot control.  If you have a diagnosis and access to a specialist that is great step in the right direction.

[Pistol]

@Alystew - I certainly can understand where your concerns comes from. Yes - some people are quite disabled from dysautonomia, some constantly, some temporarily, for some it comes in flares and others yet it is progressive … these are many of the people on this forum because we need to share our experiences, fears and rely on support from others with these symptoms. However - do not let that discourage you. There is no " mild version " of POTS - there is YOUR condition and YOUR symptoms. Most people do just fine with dysautonomia and will not even post anything on this forum because they feel their condition dies not affect them all that much. I hope you are in that category. However - reading posts here CAN help you by giving you ideas and guidelines as to what to do IF your POTS gives you trouble. We are always open to anyone and you do not have to be severly impacted by POTS etc - but maybe you can find some sollutions to even some mild symptoms. --- I wish you only the best !

[StayAtHomeMom]

Mine is mild. I have had bad months in the beginning but now not so much. I felt like my symptoms were bad til I seen others experiences. Now I am happy with what I have. That being said I think I have had it since I was a teenager. Just a few years ago it got bad for some reason and it was brought to my attention by my body.

Never be scared of what is around the corner. You can't control the future. You can only control the present. Enjoy your family as much as you can. Your kids are young only once. I figure out my limits as we go. Took my boys to the fair this weekend. Even rode on some rides with them. Til my body got a little upset. They understood and were ok with it. My hubby went with them while I took pictures. We still had a blast. I don't regret going in the slightest. 

[amycooper]

I know what you mean.  I am still working and raise two young kids.  After some initial struggles, I am learning how to manage it but I fear it getting worse too.  But realistically, it may never do that!  People who have mild forms may never get properly diagnosed or if they do, may not see the need to reach out for help on a forum, so forums like this skew more towards those more severely affected.

[bombsh3ll]

Hi Alystew,

Everyone is so different so scaring yourself reading about the worst cases isn't helpful. My case was severe from the outset, which was very sudden. Prior to that I'd been completely healthy. 

From what you describe, ie your only symptom being a fast heart rate, and what I understand of the accepted medical definition of POTS, you may not even have POTS in the first place. 

POTS is not just a jump in heart rate of 30+ bpm on upright standing or tilt. Healthy people can have a fast heart rate when they stand and they don't even know it, they are just out there living happy functional lives. A diagnosis of POTS requires the heart rate increment AND chronic debilitating symptoms such as lightheadedness, syncope, presyncope, headache, tremulousness, non-psychogenic anxiety, weakness, nausea etc, in any combination, usually required to have been present for at least 6 months. 

A fast heart rate on its own with no other symptoms isn't POTS by most specialists' definition. 

I am not sure if maybe you do have other symptoms as generally people only check their heart rate or see a doctor, have ECGs etc if they are having symptoms, so what was it that led to you checking your heart rate? 

I am not saying this to minimize your problems but hopefully to reassure you that you may not even have an illness, just like every breast lump isn't cancer. 

Take care,

B xxx

 

[Pistol]

I disagree - the definition of POTS does call for symptoms of orthostatic intolerance in addition to an increase of HR of 30 BPM upon standing however- it does not indicate these symptoms have to be disabling. Many people have compensated for the increase in HR and are not necessarily aware of it. 

[katyroq]

I like to remind myself that "normal" looks different for everyone. So yes it's absolutely possible to live a normal life with POTS. I have a fairly mild case myself and can usually push myself to do anything that I really want or need to do (even if it takes more time than "normal" to recover). For me the key is to be present in the moment and not compare myself to others who seem to have endless energy, or even to myself on a good day. Getting POTS in my 20s has taught me not to treat my body as a machine that I can abuse and force to work constantly for me. Instead I have learned to listen to my body and to give it the things it needs to thrive. This is a valuable lesson I wouldn't have learned without being sick. 

I'm feeling pretty consistently good right now, so I can identify with the worrying about if /when things might get worse. But I try not to do that. Actually my flare last year led me to find a new and much better doctor and start on a medication that is helping me feel better than I have felt in my entire life. Even before the flare. So was the flare "bad"? It depends. 

Mild pots can be kind of confusing, but I encourage you not to think of your limitations or worry about your health. Live your life but do use the knowledge of your condition to do the things like exercise that help with it. Best of luck! 

[StayAtHomeMom]

7 hours ago, Pistol said:

I disagree - the definition of POTS does call for symptoms of orthostatic intolerance in addition to an increase of HR of 30 BPM upon standing however- it does not indicate these symptoms have to be disabling. Many people have compensated for the increase in HR and are not necessarily aware of it. 

When my oldest son was younger I noticed he would fidget like crazy. Never stand still. Hated sports or running. Now that he is 15 he is showing more signs and symptoms of POTS, including the heart rate jump. He mostly does ok. Just these last few months he has been getting worse so I need to confirm the diagnosis but for the past 2 years he has been managing without it bothering him too much. 

[marflo]

Just keep hanging in there.

[Alystew]

On 7/24/2018 at 10:06 AM, bombsh3ll said:

Hi Alystew,

Everyone is so different so scaring yourself reading about the worst cases isn't helpful. My case was severe from the outset, which was very sudden. Prior to that I'd been completely healthy. 

From what you describe, ie your only symptom being a fast heart rate, and what I understand of the accepted medical definition of POTS, you may not even have POTS in the first place. 

POTS is not just a jump in heart rate of 30+ bpm on upright standing or tilt. Healthy people can have a fast heart rate when they stand and they don't even know it, they are just out there living happy functional lives. A diagnosis of POTS requires the heart rate increment AND chronic debilitating symptoms such as lightheadedness, syncope, presyncope, headache, tremulousness, non-psychogenic anxiety, weakness, nausea etc, in any combination, usually required to have been present for at least 6 months. 

A fast heart rate on its own with no other symptoms isn't POTS by most specialists' definition. 

I am not sure if maybe you do have other symptoms as generally people only check their heart rate or see a doctor, have ECGs etc if they are having symptoms, so what was it that led to you checking your heart rate? 

I am not saying this to minimize your problems but hopefully to reassure you that you may not even have an illness, just like every breast lump isn't cancer. 

Take care,

B xxx

 

I just came back here because I am so confused on what has been happening with me. I actually just saw an electrophysiologist who didn't agree with my POTS diagnosis. My situation is so weird that i don't even know what to make of it anymore. I had health anxiety following the birth of my 3rd child (she's 8 months now). Nothing crazy but it was there. In April, I had a burning in my chest, not alarming but then when I took my daughter to ballet, I was sitting and felt like I was about to pass out. I knew it was probably lack of sleep, food, water, but my anxiety got the best of me after googling chest burning and lightheaded, and I went to the ER. Everything was fine, but I followed up with a cardio anyways.  He immediately jumped into POTS and told me to google it and see if my symptoms matched. 

This is when i started getting symptoms. I was checking heart rate for that spike obsessively. I was dizzy all of a sudden. Not from standing, just felt dizzy. My anxiety blew up, I was a wreck. I was so nervous for the tilt table and I failed it. 80 to 170. I was then officially diagnosed. Anxiety continued to grow, I was still obsessed with my heart rate but was noticing it was really only in the mornings where it got really high. I kept questioning it with my cardio who eventually sent me to the EP.  EP asked if that one lightheadedness was my only symptom prior and he doesn't think it's POTS. 

But the thing is, my heart rate for sure jumps in the morning. I go upstairs to get the baby and it's 160 sometimes. I'm still very aware of my heart beating, even if it's normal. I don't know what's wrong with me. I can't seem to get an answer from anyone. Is it possible to see large heart rate increases but not actually have POTS? 

 

[bombsh3ll]

Looking at the accepted medical definition of POTS,  the jump in heart rate with upright posture of 30+ beats AND symptoms such as lightheadedness equals POTS (provided no other explanation is found after investigation such as blood loss, endocrine disorders etc). If the lightheadedness only occurred one time though I can see why he may not think it is POTS. 

Lightheadedness is certainly my biggest symptom for sure! "Anxiety" can also be a symptom, but in POTS it is not psychological in origin, it is the result of high levels of noradrenaline as the body works extra hard to get blood up to the brain. 

Have you been given any treatment?

B x

[Alystew]

I’m currently breastfeeding, so my options are limited. My cardio had me try two beta blockers, I think the only meds approved for breastfeeding mothers, but I didn’t like the feeling of being on them. My ob prescribed Zoloft, so I’m going to try that. I don’t know if it’s pots, but I know I had anxiety prior and currently it’s my greatest challenge, so at least I can treat that. Hopefully in getting the anxiety under control, I can figure out if my heart rate issues. 

My anxiety stems from not knowing and it’s only getting worse from not getting answers from my doctor. Since I don’t have any symptoms associated with elevated heart rate, I just want to know that my heart is okay if it goes that high  and whether or not my hyper awareness of my heart beat is anxiety related or an actual problem. Cardio mentioned a 30 day event monitor, so maybe that’s the next step. 

 

[Always hoping]

Hello Alystew.  

My symptoms wax and wane and I am fortunate enough to live a mostly "normal" life.  Some people are able to determine ways to manage their symptoms and they find relief.  Just know that it isn't always a progressive disorder where things get worse instead of better.  Some teens have been known to "outgrow" it.  I know it isn't easy but try to be positive about things getting better instead of worse.  When I was first diagnosed I wore a Fitbit.  It actually gave me helpful information to determine what activities set my symptoms off.  For example, I found that showering in the morning kicked my heart rate into the 170s and set my symptoms off for the rest of the day.  I now shower at night before bed and can manage that part.  Once I had some information though and realized that I was then becoming anxious constantly monitoring the numbers, I took it off.  The added anxiety is only going to make it worse.  For the most part for me, the more information I got, the calmer I got.  The people and information on this forum are amazing.  While many things may not apply to your situation, some may and can help you find answers.  I believe if you keep monitoring, investigating and advocating for yourself you will find some answers and the right doctors to help you.  Be well.

[StayAtHomeMom]

22 hours ago, Alystew said:

I just want to know that my heart is okay if it goes that high  and whether or not my hyper awareness of my heart beat is anxiety related or an actual problem. Cardio mentioned a 30 day event monitor, so maybe that’s the next step.

You can ask for an echocardiogram as well. It will check the structure. You basically lay on a table and they ultrasound your heart. I had that done and it helped a lot for piece of mind. Even though my body is freaking out I not longer feel like it is just going to quit. If anything explain to the doctor that the unknown is not helping your anxiety and maybe they can help you explore that unknown to help you work your way through your problems. 

Once my PCP understood the way my brain worked she became much more willing to negotiate testing to help calm my nerves. I have RA testing done every year because my mom has it and I have some early symptoms. Just basic blood test and I don't worry about it because I know we will catch it if or when it starts. 

[DizzyPopcorn]

On 8/4/2018 at 9:57 PM, StayAtHomeMom said:

You can ask for an echocardiogram as well. It will check the structure. You basically lay on a table and they ultrasound your heart. I had that done and it helped a lot for piece of mind. Even though my body is freaking out I not longer feel like it is just going to quit. If anything explain to the doctor that the unknown is not helping your anxiety and maybe they can help you explore that unknown to help you work your way through your problems. 

Once my PCP understood the way my brain worked she became much more willing to negotiate testing to help calm my nerves. I have RA testing done every year because my mom has it and I have some early symptoms. Just basic blood test and I don't worry about it because I know we will catch it if or when it starts. 

So if an echocardiogram show your heart as structurally healthy, does that mean that pots in general (heart rate wise). Does not pose a bigger risk than say, anaerobic exercise?

[Pistol]

@whoami - an echocardiogram simply shows an ultrasound of your heart, it visualizes the structural components of the heart. Like the muscle, chambers, valves etc. It does not exclude or diagnose dysautonomia - it just shows if there is anything structurally wrong ( enlarged muscle, leaky valves - any anatomical defects or changes ). 

[Pistol]

Thanks @FileTrekker - I miss understood. 

 

 

 

 

 

 

 

 

[Lily]

On 7/23/2018 at 10:16 AM, Alystew said:

Anyone personally or know people who have mild pots and live a normal life? Kids, work, outdoor activities? 

Yes, I fit your request!  I'm a 46 year old tenured college professor (so employed full time +).  I have 2 cats, no kids or spouse, and my only limit on exercise is difficulty keeping up the habit of doing it.  I have never been bed ridden or house bound due to POTS.  Constant grinding fatigue, yes.  Inability to live normally, no. 

POTS sneaked up on me gradually rather than starting suddenly after an illness, and I suspect that the Strattera I was on for ADHD might have had something to do with it (or at least the hyperandrenergic part, as Strattera is a norepinepherine (NE) reuptake inhibitor and too much NE in the nerve synapse can leak out into the blood stream).  I thought last year that my POTS was getting worse, but now that I am on Adderall instead of Strattera I suspect that the Strattera was jacking up my sympathetic nervous system and complicating the POTS.  Or maybe the Adderall is helping my poor deficient veins to constrict appropriately.  Even though my plasma NE was very high during the tilt table test, the treatments that have helped me the most are the ones for increasing blood volume and controlling blood pooling.

My job requires at least some standing, but I have the flexibility to teach while sitting if I like.  Lectures are more sit-friendly than labs, but so far I have been able to make it do-able.  My research is primarily in salt marshes, which results in low level walking and carrying once in a while, followed by laboratory analysis.  I regularly work with my feet up on my desk in my office.  I am on several medications plus a high salt diet.  Compression hose helps, but not enough to make me want to wear it.  Abdominal compression alone actually works better (I just use normal high waisted panty slimmers, not medical gear).  Summer is a bit difficult when the heat and humidity are both high, but every building around here has air conditioning.  For exercise, I am capable of doing 60 minutes of low level cardio, but I prefer weighlifting, outdoor cardio, and evolutionary fitness.  My POTS doctor said I can do whatever exercise I like, as long as I exercise.  

In short, my POTS does not seem to be getting worse and I can live normally.  You are not necessarily doomed to getting worse either.  Also consider that if you search the internet a bit you can find some POTSies who run marathons and stuff like that.  It seems to me that the worst thing you can do when you have mild POTS is to stop exercising and rest a lot.