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Yhoun

New to POTS and new mom

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Hi, everybody - I’ve been lurking on the forum since I was diagnosed with POTS about two years ago, after I had episodes of dizziness that wouldn’t do away. I have been living a fairly normal life, but I do feel off-balance/woozy a lot of the time, which has decreased my overall quality of life, and I also feel less effective at work. I had my first baby three months ago, and I would really like to feel better so I can do more with/for her. Like, last week I felt faint while we were out running an errand, and I’ve felt uncomfortable taking her out by myself since then — which is very limiting. 

If anyone has any relevant experience having POTS as a new mom, or success stories re: decreasing episodes of lightheadedness, please share!

If relevant: I am not currently on any medications because of pregnancy/breastfeeding, though I will be switching doctors in January when my insurance changes, so I will be looking into that. I was on bisoprolol for a while, and midpdrine for a shorter period. I couldn’t tell how much they helped; neither was a miracle drug. I would love to find something that keeps me from feeling symptoms every day.  :(

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Lightheadness or dizziness? Lightheadness I drink vitamin water. Maybe some extra salt if I am craving it. Dizziness I use dramamine. It is an over the counter motion sickness pill. Not sure if it is safe while breastfeeding but half a pill helps my dizziness really quick. Luckily I haven't had too much issue with that symptom this last year. 

Currently I personally take midodrine and metoperlol and that seems to help me function most days. Honestly my metoperlol was my miracle drug and then the midodrine was added by my specialist and that helps symptoms I didn't realize were bothering me til I started taking it. 

By the way, congrats on the new addition. I am grateful my kids are older but I would never trade their younger years. Watching my boys grow to men is truly a wonderful sight. Hope you feel better soon. 

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Hi Yhoun and welcome - although I'm sorry you find yourself here.

Whilst I was fortunate to have the first blessed 14 months of my youngest child's life healthy and active with her before my POTS nightmare suddenly began, she was still a baby, just starting to walk by herself at the time I lost the ability to & began also feeling very unwell, so I can definitely relate to that. It is awful feeling you can't be the parent you want to be, and that your child deserves, and being afraid of passing out and putting them in danger. 

What I would say is it sounds like you have hope of things improving if you've only tried two meds (there are lots of different options), and are breastfeeding. That in itself can be dehydrating and I have seen others say their symptoms improved when they stopped. 

My issue is definitely lightheadedness ie presyncope(about to faint), not dizziness in the vertigo/spinning sense. Some people on here seem to experience both though. 

Something I find helps a little is a litre of electrolyte mix prior to getting out of bed and another in the afternoon in addition to my usual gallons of fluid & salt on food (I recently discovered Trioral - taste isn't nice but does the job) which only contains salt potassium and sugar so is completely safe for breastfeeding. I wear class 2 compression tights. The biggest thing that helped me dramatically for about a year before the effects waned was Licorice root capsules. I take 2 x 450mg swanson capsules daily (can buy from amazon).

I am not sure about these with breastfeeding, they are probably not advised (not due to any known harm but just lack of evidence they are safe), but something you could look into after that. I had been chairbound for 8 months and these allowed me to walk (not stand in one place, but at least be on my feet and moving) and sit upright comfortably with no or very little lightheadedness. The licorice root enabled me to get out with my daughter when she was little and go to playgroups and soft plays where I could sit and watch her. They also gave me a bit of a time loan in getting my kids to an age where they are more independent, can help me in the house and I can safely be at home with them without another adult, as they can get food & drink, use the toilet etc without me having to get up, and know how to call for help if I passed out. 

Safety wise, you have to plan things and have contingencies in place, for example I don't go out alone with my children. Rely on those who care about you who can and want to help. I read about another lady with severe POTS who had a baby, and when she was alone in the house with the newborn she set everything up so she could do it all on the floor, and used a pushchair to move the baby around the house rather than carrying her. Look into getting some kind of alarm that you could activate if you were unable to use your phone, get a relative friend or neighbour to call you at agreed intervals through the day to check you are OK. 

Try to enjoy the moments you can with your baby, the feeds & cuddles on the couch etc. Hold on to the fact she will not always be as dependent as she is now, and as time passes regardless of your own health you do at least gain more and more peace of mind regarding your children as they get older. Mine are now at school getting activities and social interaction & a life outside the home that I wouldn't be able to provide. 

Whilst I would have chosen not to have children had I known I was going to become disabled when they and I were young, we are where we are and can only do our best. I might not be able to go for walks or bike rides, but I can do stories, cuddles, movies, help with homework etc. Focus on the value you do bring to her life, not what you can't do. 

I hope things improve for you and you find something that brings some symptom relief.

B x

 

 

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Thanks, stayathomemom, I love being a mom already, and I'm so excited to watch her grow. And thank you for sharing your advice. I would say that I have more constant lighteadedness these days, and when I feel worse, I feel more dizziness. I think you're right, and I can't take a beta blocker while breastfeeding. I will have to judge continuing breastfeeding against possible improvement in symptoms. Do you mind me asking: Do you know what caused your POTS? Do you feel symptoms every day, or does your medication work well enough so that you don't?

bombsh3ll, thank you for understanding. Your advice is good -- I have to focus on what I can give her, not what I can't. And you gave me a lot of things to try -- I can easily start with the electrolytes and then work my way down the list.  I am new to the area and don't have a strong support system (though I have a great husband), so I am working on making more friends in the area. But of course it's been hard to get out and make friends when I haven't been feeling well. I keep trying, though. I'm sorry that you have been feeling so unwell. It must have been so disappointing to find something that worked well (licorice root), and then it just stopped. Did you ever find a cause for your POTS? Mine seemed to come out of nowhere.

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2 hours ago, Yhoun said:

Thanks, stayathomemom, I love being a mom already, and I'm so excited to watch her grow. And thank you for sharing your advice. I would say that I have more constant lighteadedness these days, and when I feel worse, I feel more dizziness. I think you're right, and I can't take a beta blocker while breastfeeding. I will have to judge continuing breastfeeding against possible improvement in symptoms. Do you mind me asking: Do you know what caused your POTS? Do you feel symptoms every day, or does your medication work well enough so that you don't?

No underlying cause yet. Because I belive my oldest son has it as well it is going to be something heredity. I am waiting for his TTT appt to confirm and then do some more digging. My symptoms are manageable. Most days are fine except for days I do too much and the days near and during my cycle. Without my meds I am d*** near useless. With them I can manage 20-30 hours a week at work plus cooking dinner most nights. When I first got sick it was rough but I have learned my triggers, limits, and the meds definitely help. 

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17 hours ago, Yhoun said:

It must have been so disappointing to find something that worked well (licorice root), and then it just stopped. Did you ever find a cause for your POTS? Mine seemed to come out of nowhere.

Yes, I really thought I was going to get to enjoy the rest of my life when I first discovered Licorice Root! I had accepted not being able to stand by that point but LOVED to be able to walk and sit comfortably. It is a pretty common phenomenon in medicine for a drug to lose effectiveness over time unfortunately, as the body just adapts to it ie develops tolerance. Same happens with pain meds and benzodiazepines, the dose that helped a person becomes less effective, they need to take more and then that no longer helps and so on. Tolerance is very variable though between individuals, conditions and drugs so that doesn't mean that every person on every drug will eventually need higher and higher doses and eventually have no effect. 

I live in the UK where investigations and knowledge re POTS is very limited, however I strongly suspect hypovolaemia as the cause of my POTS as I produce no renin, aldosterone or antidiuretic hormone - these help us hold on to fluid in our blood vessels. Why I don't produce these is a mystery. I pass large volumes of very dilute urine. Licorice root partially replaces the function of aldosterone which is why I believe it helped me so much. I couldn't take synthetic replacements of these hormones though with florinef and desmopressin due to side effects. I am also much better late evening, when blood volume is highest. I also have Ehler's Danlos syndrome, which is commonly associated with POTS but again I don't believe this would suddenly cause it at 34 years old, surely lax blood vessels would be present throughout life and onset would be gradual. 

My POTS also seemed to come out of nowhere, but I was completely well until I tried to blow up a water bomb that I thought was a balloon. I blew so hard, I passed out, and have been presyncopal ever since & could never really stand again after that.  I was 100% fit and healthy until that incident. I am waiting to be tested for a spinal fluid leak which could have been precipitated by it. There is some link between CSF leaks (which are commoner in people like me with connective tissue disorders than the general population, and can be triggered by a forceful Valsalva) and POTS. I recently came across this myself after seeing a Dr Ian Carroll talk on youtube, none of the doctors I had seen prior ever considered it. 

I hope you manage to find some relief. If you can, try to see an autonomic specialist. I am currently on Dr Grubb's waiting list and will travel to the US to see him. 

Best wishes,

B x

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I'm so sorry you are going through this. I had my third (and last) baby 7ish months ago. I started experiencing really weird and awful things during this last pregnancy and had a complicated and traumatic delivery. I knew something was wrong and everyone kept telling me that I had anxiety or post partum depression. I got my diagnosis about 5ish months ago. My doc just recently prescribed florinef, but I am also breastfeeding. In fact, I'm still breastfeeding my almost two year old toddler too. I actually saw a cardiologist and he ran some tests and didn't schedule me for a follow up because he "felt" my pots would go away after I stop breastfeeding. I've never heard of that so I cant help but think he's coo coo for cocoa puffs. Lol Someone mentioned aldosterone, and I did find out I produce little to no aldosterone, but when I saw an endocrinologist he said salt tablets can suppress aldosterone. Idk how it all makes sense medically, because my sodium always comes out a little low too. Idk! None of my doctors know much (if anything) about pots. I can say that I feel like an awful mom since this whole pots thing. I am certainly not the mom I want to be, and not even the mom I used to be because of my health. Two of my kids are special needs, and I'm determined to "get better". I need to find doctors familiar with pots. This forum has also been a huge help. Not just with advice, comfort, and reassurance, but just to know you are not alone. Sorry for rambling! Just remember you are not alone, and from what I hear it takes a lot of trial and error, but there is hope! 🙂

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I wish that I had advice for you but I am new to this whole thing myself and trying to sort it all out.  I really just wanted to tell you that when I read your post my heart went out to you.  I, too, have three small children and this is super hard!  I often do more than I should and yet still feel like I am not doing enough.  Did you ever wear an event monitor?  Is it possible that you are having more than just tachycardia, but having SVT or some other tachycardia that is not POTS?  Wishing you peace and comfort right now.  You are enough, because you are their mom!  Hugs to you.

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@Potsiebarbie, hello, I do not want to cause you any unneeded concern, and I do not know if I remember correctly, but I thought that I read somewhere that if you are breastfeeding, then florinef should not be used because it could cause suppression of aldosterone in infant/toddler. You may want to double-check with the pharmacy, the online PDR or package inserts. 

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On 12/9/2018 at 12:15 AM, potsiebarbie said:

I'm so sorry you are going through this. I had my third (and last) baby 7ish months ago. I started experiencing really weird and awful things during this last pregnancy and had a complicated and traumatic delivery. I knew something was wrong and everyone kept telling me that I had anxiety or post partum depression. I got my diagnosis about 5ish months ago. My doc just recently prescribed florinef, but I am also breastfeeding. In fact, I'm still breastfeeding my almost two year old toddler too. I actually saw a cardiologist and he ran some tests and didn't schedule me for a follow up because he "felt" my pots would go away after I stop breastfeeding. I've never heard of that so I cant help but think he's coo coo for cocoa puffs. Lol Someone mentioned aldosterone, and I did find out I produce little to no aldosterone, but when I saw an endocrinologist he said salt tablets can suppress aldosterone. Idk how it all makes sense medically, because my sodium always comes out a little low too. Idk! None of my doctors know much (if anything) about pots. I can say that I feel like an awful mom since this whole pots thing. I am certainly not the mom I want to be, and not even the mom I used to be because of my health. Two of my kids are special needs, and I'm determined to "get better". I need to find doctors familiar with pots. This forum has also been a huge help. Not just with advice, comfort, and reassurance, but just to know you are not alone. Sorry for rambling! Just remember you are not alone, and from what I hear it takes a lot of trial and error, but there is hope! 🙂

Thank you for replying. I am sorry that your pregnancy and delivery were both so hard, and now POTS, too. How are you doing day-to-day? I am moderately functional, but definitely feed impaired. I am trying to keep hope alive, and keep trying things to help myself feel better. in fact, I just made an appointment with a new doctor, so hopefully she will have some advice/ideas.

 

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On 12/9/2018 at 12:32 AM, MeganMN said:

I wish that I had advice for you but I am new to this whole thing myself and trying to sort it all out.  I really just wanted to tell you that when I read your post my heart went out to you.  I, too, have three small children and this is super hard!  I often do more than I should and yet still feel like I am not doing enough.  Did you ever wear an event monitor?  Is it possible that you are having more than just tachycardia, but having SVT or some other tachycardia that is not POTS?  Wishing you peace and comfort right now.  You are enough, because you are their mom!  Hugs to you.

Thank you for the kind words! I did wear a 30-day monitor a couple of years ago, that's when I first got diagnosed. The cardiologist saw those results and did a "poor man's tilt table" in the office. i had to move shortly after that and never got a title table test, but I have an appointment with a new cardiologist, and I'll ask her for the TTT and to help me investigate whether anything else might be going on.

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14 hours ago, Trying said:

@Potsiebarbie, hello, I do not want to cause you any unneeded concern, and I do not know if I remember correctly, but I thought that I read somewhere that if you are breastfeeding, then florinef should not be used because it could cause suppression of aldosterone in infant/toddler. You may want to double-check with the pharmacy, the online PDR or package inserts. 

I know. ☹️ I haven't even picked it up, because I'm not ready to wean. It's really hard, because if I knew for sure all my "issues" would resolve with this then I'd stop breastfeeding in a heartbeat, but at the same time if it was all for nothing I'd be devastated. I had my tubes removed, so this is it for me, and the breastfeeding bond (or whatever- lol) that I have with my girls is so special to me. My littlest actually gets mostly formula- it's my toddler that I feel I would have a hard time weaning. Idk. It all sounds dumb, and it's hard to explain. I did ask the pediatrician and she wasn't certain and said she'd look into more, but I'm just not willing to take that risk with what little info is available. 🙁

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10 hours ago, Yhoun said:

Thank you for replying. I am sorry that your pregnancy and delivery were both so hard, and now POTS, too. How are you doing day-to-day? I am moderately functional, but definitely feed impaired. I am trying to keep hope alive, and keep trying things to help myself feel better. in fact, I just made an appointment with a new doctor, so hopefully she will have some advice/ideas.

 

I really hope your appointment goes well. Please update! I am having a hard time finding doctors who know much about pots or have even heard of it. What things do you do to make yourself feel better? Right now I am trying to find the right combo of salt, fluids, and electrolytes. I also want to find more detailed info about compression garments. I have a couple pairs of compression socks, but that's it. Last but not least I found a compact affordable rowing machine on Amazon I'd love to get. I heard the rowing machine in particular is great for pots. As for day to day... I feel like I'm on autopilot. I feel like I'm slowly getting worse. I can take care of my kids, but I'm dying to just play with them and be carefree. I really took that for granted before the whole pots thing. Please let me know how your appointment goes, and good luck! Sending good thoughts your way! 

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@Yhoun - ask the pharmacist before filling your prescription, they will know exactly about the breast feeding while on florinef. 

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Thank you for the good thoughts, potsiebarbie, I will try and remember to update as soon as I have updates re: the specialist appointment. Since I’ve been pregnant, I’ve been doing fluids, mostly, and trying to stay as active as possible. Funnily, I’ve never been recommended to salt-load or drink electrolytes, but I will ask about that. I have tried compression socks, but I can’t feel much difference — I don’t know if that means I don’t have much blood pooling? I would like to try an exercise protocol that I’ve heard about (Levine or Dallas, I believe), and I’d like to try modifying my diet, but I want to consult with the doctor first, and make changes in a systematic way.  Like you, I really miss feeling “carefree”. I hope you can get that  rowing machine, and that it helps!

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3 hours ago, Yhoun said:

Thank you for the good thoughts, potsiebarbie, I will try and remember to update as soon as I have updates re: the specialist appointment. Since I’ve been pregnant, I’ve been doing fluids, mostly, and trying to stay as active as possible. Funnily, I’ve never been recommended to salt-load or drink electrolytes, but I will ask about that. I have tried compression socks, but I can’t feel much difference — I don’t know if that means I don’t have much blood pooling? I would like to try an exercise protocol that I’ve heard about (Levine or Dallas, I believe), and I’d like to try modifying my diet, but I want to consult with the doctor first, and make changes in a systematic way.  Like you, I really miss feeling “carefree”. I hope you can get that  rowing machine, and that it helps!

Try no bread and pasta. If you notice a difference look into a low carb. I spoke to my doctor beforehand and she gave me the green light. It has made a difference in my GI issues. 

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