Hello From A Pregnancy-Induced Pots Newbie Mommy W/ Eds

[Altruism]

Hello everyone, this is my first post here and I wanted to introduce myself. I'm Lucy and I (supposedly) suffer from pregnancy-induced POTS that started on Nov 6th 2012 after I gave birth to my beautiful son. I was on bed rest 2.5 months, had a HORRIBLE 48 hours back labor with indescribable pain despite the 2 epidurals and narcotics, I also had over 40 stitches and lost 1/3 of my blood volume which resulted in severe anemia. I am also hypermobile (seeing a geneticist next week to confirm EDS and find out which type I am and I also have a genetic component - mom and grandmom are hypermobile, but have absolutely no issues with dysautonomia). I'm super scared, confused and I suffer tremendously from all this. Having a newborn and being unable to leave my bed is horrible and wouldn't wish this to my worst enemy!!! My resting HR is 60-70 with occasional bradycardia 52-55. Sitting HR - 90/100. Immediately after standing - 120-170! I've been reading here all day long for the last month and I am glad I'm not alone, but I'm also terrified of how serious this condition is... What do you think is my prognosis based on the fact that I have EDS, but the actual onset was trauma (birth)-related? I know trauma and viral onset have a higher chance of recovery, but having EDS makes things complicated, right? Have you seen moms with EDS get better or worse?...I'm housebound, bedridden and very, very lightheaded, dizzy and have tinnitus. I'm hard of hearing as well, which makes my life real fun I guess (evil grin). Anyway, sorry for being unable to start a new paragraph, I don't know why but I can't. I have millions of questions, but I don't know where to start... Let me start with just sending hugs to every single one of you! We should be able to beat this!!! May the new year bring us symptom relief, remissions and plenty of good days (I have had 1 for the last 50 days, the rest 49 are pure surviving). English is not my mother tongue by the way, so I'm sorry for the mistakes.

[Altruism]

Some more additional info - my BP fluctuates a lot, but I have a really narrow pulse pressure. It' usually 98/79 or 100/80 or sometimes 160/140 while standing up. My symptoms are so severe that my neurologist said I can't do the TTT since I'm feeling HORRIBLE immediately after standing! Poor mans TTT is more than enough for me and wipes me out for days... I've had the cortisol test and my baseline was 25, 30 min later it was 32 and strangely 60 min later it was 38, not 50 as it should be, but the doctors said it's ok. Hmmm, is it? I have not received the results from my QSART, controlled breathing and Valsalva, but I know I failed the Valsalva big time as my BP overshoot to 190/120 an I only blew for 5 seconds, then almost fainted. Do you have any other ideas, what can I get tested for, where should I go? I live in Seattle, so Mayo, Vanerbilt and Ohio are too far away and flying is out of the question now as even sitting makes me symptomatic... I'm breastfeeding, is that a bad idea? I know MomtoGullianna felt better after she weaned her daughter off, but for most moms it's the other way round, so I'm terrified of the day when I'll stop breastfeeding my baby... will I get worse and how worse can this be? I suffer from adrenaline rushes in the am hours, non-stop spacey and foggy mind, lightheadedness, BP and HR are all over the place and I'm also going through the postpartum period. I'm scared I'm dying and I'm so glad I found this forum that helped me prove my doctors I'm not having " just a postpartum depression and anxiety".

[Mytwogirlsrox]

Hi, Im so sorry you're suffering! You are not alone! I too believe my pots was trauma and/ or pregnancy induced. I became symptomatic after I weaned my daughter. I'm sure your doctor advised you to drink a lot of fluids and salt load, especially if your nursing. I remember being so thirsty while breast feeding. hopefully with time your body will recover from the massive event you went through. It's hard enough on your body to have a baby (for normal people) throw in the complications and pots/eds.. It's rough! Just to reassure you, I had my daughter 12/10 and I was diagnosed 02/12 (quit nursing her 01/12), I was undiagnosed recently (I no longer fit the criteria of pots-- just mild orthostatic hypotension) I believe my body needed to heal from two hideous back to back pregnancies.. I have hypermoble joints, but I don't want to peruse it --to be honest, I'm too scared.

Anyway, hang in there! Have you thought about trying the usual pots medications?

[misstraci]

Hi and welcome. I just wanted to write and say that I am also a pregnancy induced POTS patient but that I don't know about EDS. I'm not sure if I can help with your questions as I'm feeling totally lost and uneducated about all of this (even though I've had it almost 3 yrs now) but my POTS started after I had my son and I lost a lot of blood and I think the stress on my body is what caused the dyautonomia.

You mentioned that you lost lots of blood as well. Have you been tested for Sheehan's? I was tested about 2 weeks ago. When we loose that much blood so quickly because of accident or whatever the case may be, it affects the pituitary and then it no longer can secrete the right hormones or amounts or something. Look into that.

[badhbt]

Sorry you are not doing so well. I live in Seattle too. I was diagnosed recently at University of Washington. They have a autonomic testing department there. Is that were you got QSart test?

I found a Neurologist in Everett that use to work at the University of Washington in that department. She is pretty good and is up to date on the treatment protocols. There was a wait to get into the University so I went with her.

I also know of a Mayo Doctor that does phone visits. Her name is Dr. Blitshteyn she will work with your neurologist if you want her to.

Hope that helps.... hope you start feeling better.

[Chaos]

Welcome! Sorry you are having such an incredibly hard time with all these things happening at once to you. Certainly a very challenging situation!

It seems like, to some degree, you room for hope for improvement in your symptoms with time and some bed exercises etc. You lost a LOT of blood and being on bed rest for that long-those are both things that can cause POTS-type symptoms in a normal person, let alone someone who has EDS and perhaps a genetic predisposition toward developing it.

I had 3 complicated pregnancies which required long stints of bedrest (worst being 5 months). That was before POTS, but it was still a challenge to deal with trying to get back to being able to tolerate being upright and having the functional strength and endurance needed to adjust to being up all day. It was nothing compared to dealing with POTS, but I'm just trying to say that having spent 2.5 months in bed, even for a "normal" person, it would be a challenge to get back on their feet. Add to that the blood loss you had and again, even a normal person would be having a hard time getting back up on their feet.

With you having POTS and EDS, the challenge for you to deal with these issues will be that much greater. However, it would seem like, hopefully there will be some natural healing with your blood volume being restored over time to a level more normal for you. And, although I know we all hate the dreaded "deconditioning" label here, bedrest is one time where people DO become deconditioned very quickly. Has your doctor discussed home health physical therapy with you at all? That might be helpful.

Hope you are able to spend some time enjoying your new baby! They grow up SO fast! It's hard when you're feeling so bad yourself though. Hope you can get some answers soon that will help you get on the road to feeling better.

[corina]

Hi Lucy, welcome to the forum! Wow that has been quite a difficult birth giving! I hope you're able to enjoy your son to the fullest but of course am sorry that you're struggling so much. There are more pregnancy induced POTS mommies here so I'm sure they can help you with questions! You said that English isn't your mother tongue so would you like to share where you're from? I'm asking because I'm working on composing a European doctors list and if you're from Europe (I am) you might want to share your docs name and address! Anyway, welcome at DINET!

[Altruism]

Hi again, thank you so much for the warm welcome!

Mytwogirlsrox,I am so happy for you being undiagnosed with POTS!! It must be the best feeling ever! As for your question - I was put on SSRI Zoloft and I'm taking Klonopin occasionally. I was put for 1 evening on Florinef 0. 1 and Metoprolol 25mg while being on the cardiac floor in the hospital, but I had high BP, dizziness and it did not affect my HR, so the cardiologist stopped them both. Do you think I should give it another try? Do beta blockers take some time to start working or I should see the effect immediately? I know Florinef takes some time...

misstraci, I am sorry you are suffering as well. I was tested for Sheehan's last month and it was negative. By the way, did you get POTS after giving birth or after weaning off your baby? I'm scared... I'm already nearly dead, suffering, bedbound and if things get worse when I wean my baby off... I can't imagine how much worse they can get and if I can handle it. I can't do this anymore..

badhbt, thanks for your response. I was tested in the UW Neurology/Epilepsy center and I had all the autonomic testing done there. I am seeing a neurologist at UW, but I'm not convinced her specialty is dysautonomia, so I'd love to have a second opinion from the neurologist in Everett you mentioned. Could you please give me their name? It takes FOREVER to see someone in UW, I'm sure you know this. It only took me 2 weeks for my 1st apt because my cardiologist referred me as a very severe case. I can't walk, I can't stand up for more than a couple of secs and I can't even do the TTT...

Chaos, thanks for commenting, I've read plenty of your posts as it looks like we have similar issues. I don't think I am deconditioned, because I was on bed rest from week 28 to week 33 and then started moving around as much as I can. Looking back, now I see some POTS symptoms in my ninth month - being unable to stand still at grocery lines, having "anxiety attacks" that were adrenaline rushes, etc. but it was all NOTHING compared to the **** I live in after giving birth. In terms of the blood loss - my anemia is gone and doctors said my blood volume should be back to normal 24-48 hours after delivery, is this true? I still think I'm hypovolemic, but I don't want to do the blood volume test due to radiation issues. What puzzles me is that saline IVs do NOTHING for me?! Is this normal/possible with POTS? Compression stockings and binders provide no relief whatsoever. I'm getting hopeless..

Anyway, was your POTS induced after you weaned your child off? Does it wax and wane? Have you ever been bedridden from it? Thanks!

Hi corina, I'm European as well (Eastern European), but I live in Washington (PNW) and I'm seeing local doctors for my condition. Sorry I can't help, but I wish you luck!

[misstraci]

I am so sorry, I know how rough this is in general but having just had a baby too, it makes it that much more difficult. I had severe weakness/faitgue and mild dizziness after the delivery on out but it was a couple months later when the blackouts/lightheaded/tachycardia began. I wasn't able to breastfeed. Glad that you checked out negative for sheehans'. I hope that you get some relief sooner than later!!!! Keep your head up, you aren't dying or going anywhere, that sweet baby needs you to take care of him/her.

[badhbt]

Altruism

The Doctor in Everett is Dr. Dinah Thyerlei. She used to work at UW and is knowledgeable about P.O.T.S. She isn't hard to get into because she just moved there. I tried to get into UW and like you said there was a long wait.

I really feel for you and hope you can get some relief.

[corina]

Thanks for letting me know Altruism! I just found a few docs in Slobenia yesterday so my day is good anyway! Hope youll find the answers you need!

[MomtoGiuliana]

Altruism

I sent you a private message today as well. We have a lot of similarities in our experience. I did find that IV Saline helped--but not a lot in those few months after pregnancy. Something besides blood volume was causing major dysfunction for me (and severe POTS).

To answer your question about beta blockers, yes they work instantaneously to lower hr and bp in my experience.

Have you read the book Spontaneous Healing by Dr. Andrew Weil? I found this book enormously comforting when I was very sick and I tried and still use the breathing exercises he describes that he says calm the autonomic nervous system--and find these help with reducing at least slightly the sensation of heart pounding that I experience.

Getting better can include a lot of trial and error, with help from your dr. I hope you find answers and relief soon.