Birth Control, Pregnancy, Pots

[dizzygirl]

hello folks--

i've been thinking over the past week or so after my last dr;s appoint.. and the discussion that we had.. and have had a few times in the past about.. pots and pregnancy..

I have been debating wheather or not to post about it b/c it upset me.. and I know that this topic has come up before... but I really need to get this off my chest. this is what my docsa re telling me about my indivudual case of pots.. and how a pregnancy would be for me.. its different for everybody..

Like I said I had a pcp app. and we were talking about birth control options.. and more speciafically. that we need to get a grip on my non exsistant periods..b/c I mean like I dont have them hardly ever! i mean areal period that is.. (and most of the time not even spotting).. and can go about 15 month or so with out one..

but getting to my point.. I can NOT use birth control pills b/c of my BP and HR and stuff.. a chance that we are not willing to risk .. and the "store bought" birth control cant use that either..

my doc went on to tell me for the 100th time.. and really drove it home.. that it is very unsafe for me -not to mention a fetus- if i got pregnant.b/c my HR and BP and POTS ingeneral is very unstable(Spiking BP's.droping BP and very unstable HR's).. and that I can not go off my meds b/c chances are that I would get totally non functional.. and would mostly likely spend a pegnancy in the hosiptal.. and that if I stayed on my meds that it could cause some serious birth defects in a fetus-- that is if my body didnt naturally abort...

not to mention that docs think that it is very unsafe for me to get pregnant b/c of uncertainty of what the stress of a pregnancy would do to me... its rough on healthy women..

I guess it really hit home with me today.. my best friend since childhood gave birth to her 4th child last night.. a beautiful baby boy! so very cute.. and the reality hit me that i may not get that chance to be amother..to carry a child.. something that i want more then anything in this world..I'm very happy for my friend.. she is a fantastic mom!.. but it makes me feel sad too..and i cried..

i feel as POTS.. and whatever else is going on that they are able to identify yet.. is going on that it is robbing me of a life.. robbing me of my dreams.. I guess in part i am feeling sorry for myself... but I keep getting worse and worse.. not better...

POTS has taken so much from me..my shot at a carreer to build s table future financially.. education.. and sometime I wonder waht i've done wrong in my life to have to live with such suffering...daily... i was a good girl growing up.. and in general-I normally have a better outlook on this.. considering that i've lived with it my whole life.. but today i do not..

I then think that maybe for now its best that i dont have children b/c i cant provide the kind of life for them that I would want my child or children to have.. not living on disability.. and that how would I care for a infant. the toddler years..the teenage years when i can barely get off the couch to pee ...

I guess that i felt that if i couldnt work or go to school then i could raise a child.. maybe i was unrealistic to think this.. but i did and have..

and i dont know who to talk about this.. other then you guys b/c I know that you all will really get what i am saying. and feeling..

[calypso]

Linda,

If you have any doubts about your doc's opinion on whether it's safe to have a child, get a second opinion. If having a baby is a goal you have, don't rule it out. On the other hand, if you know if your heart you are not feeling anywhere near well enough to have a child, and are having serious doubts about getting through a pregnancy, then consider adoption, foster care, surrogacy. All are great options.

I have one child but developed POTS shortly after having her. The pregnancy was my POTS trigger. I want another child but know I will probably pay for it physically. I have accepted that I may not feel well during the pregnancy, may not make it to term, etc., because I have decided that I have to try -- I have lived my whole life wanting many children, and I think it will work out how it's supposed to. If I cannot conceive or carry long enough for a viable baby, I guess we'll look into adoption more.

So just make sure you have all the info you need so you can make an educated decision. Good luck. I totally know how you feel.

Amy

[dizzygirl]

Amy-- hi--I do not have doubts of what my doc is telling me.. and based on the little bit of info that i have found on pregnancy and pots.. I know that she is speaking the truth.. its just hurts ya know?

I have thought about adoption.. and may start that process eventually..

but i need to vent about this.. as it was bothering me!

hugs to you and good luck!

[sally]

I'm very sorry your doctor informed you of this news but maybe when your condition stabilizes a bit better; could it not be possible at that time to have a child? Is this a specialist that you have spoken with regarding pregnancy and your condition?

He is probably thinking of how your body would react under the stress of pregnancy and is on the side of safety.

Everyone is different I know and I don't know the severity of your situation medically but I do know that some people have had children while having this condition. Me included. I didn't know though what the problem was back then, I only knew I felt like I must have had some terrible disease that no one was finding. Pregnancy for me was a blessing, it was the only time I felt normal in my life but soon after birth the condition re-appeared to stay. Didn't understand that either and caring for children while ill was another huge challenge that required a ton of support from my husband. And, unfortunately I passed our condition on to both our daughters as it is genetic. Unknown to me at the time.

Maybe when things get a little better for you physically, it will be a better time for you then. I am very sorry. This is one of the harsh realities of chronic illness that really stinks!!. Our oldest has this same realization before her due to her illnesses and meds that cause severe birth defects as well, so I do understand where you are coming from.

Wishing you the best and good luck and I hope you feel better soon.

[joiedevivre516]

I know that I'm only 18 and that I'm probably too young to know what I'm talking about, but I saw this thread and I had to post. I am SO very sorry about what you are going through - it breaks my heart and terrifies me at the same time. One of the first things I was scared about when I first got sick was the possibility that I wouldn't be able to have children. Of course I'm in college now and I'm not even thinking about starting a family, but, like you, I want to eventually be a mother more than anything else.

My mom went through more than five miscarriages and rounds and rounds of fertility treatments before she finally had me - at age 40. I know how much pain she went through, thinking that she wouldn't be able to have a baby, so my heart just aches for you.

The very fact that you want a child so much shows what an amazing mother you would be. I hope with ALL of my soul that you CAN have beautiful children, and that everyone else on this forum who wants kids and fears they won't be able to does to.

Please let me know if there's anything I can do - I'm very good at moral support.

I don't even know how to articulate what I feel at reading this, but I hope you know that it's nothing but empathy and hope.

Please don't think that you're sick because of something you did. No one here is a bad person, and yet we're all sick. Sometimes things just happen, and maybe the reason is because that we CAN deal with it, and other people might not be able to. Maybe it's also so that we can become stronger and eventually help other people. I know that sounds trite and that it probably doesn't help, but I just want you to feel better!

[Dizzy Dame]

Oh linda I've been having the same diologue with my doctors recently too. They have all told me that unless I improve, even adoption isn't an option as I'm too sick many days to care for myself let alone another person. It has broken my heart.

I keep holding out that it will get better, that I'll improve enough to at least be able to adopt, even if I can't carry a child of my own.

And dear, don't ever question if you did something to deserve this! You are a wonderful, caring person who has done NOTHING to deserve being sick. I hope you don't forget that, even though I know it can be very difficult. I too have nights where I wonder what I did to deserve my lot.

I wish I could hug you and cry with you right now, typing these words seems less caring than saying this person to person. Just know you're not alone in your fears, and hopefully all of us who are too sick to have a family, will improve and be able to one day.

((((BIG HUGS))))

- Lauren

[1pl8ump]

just to give you some quick background: my wife was dx w/pots in dec '03 after a very long 9 months of daily syncope (prior to the spells, she gave birth to our 2nd child/boy in jan '03). she did a 3 week guinea pig study @ NIH in bethesda for indural/propranolol w/the neurocardiology dept. tilt tables, many wire hookups, etc. which brings me to last year. in may, she had complete left-side paralysis that put her in the hospital for a week. the following week, same thing for 1 day, didn't stay in hospital. memorial day weekend went to her ob-gyn to discuss other forms of bc (vasectomy was his 1st choice!) mind you when she was in the hospital for the "stroke-like" symptoms, the neuro-nerds she saw, felt she was embellishing her symptoms and basically, she was crazy. back to the ob, she told him she hadn't had her period and was expecting it @ the time she was in the hospital. he said he was not worried since her body was so out of wack anyway. he drew a blood test for pregnancy just to be sure. his office closes early on fridays and we went out. they called the house w/no message and she got worried. didn;t find out until tuesday a.m.: BOOM! positive. pregnant w/#3. ended up seeing a paranatologist throughout the entire pregnancy and jan 06, c-section was performed. i had called the dr.'s back @ NIH, to ask about your very question and they told me that typically pots people that become pregnant tend to do very well because of the increased blood supply/production/flow for the baby. unfortunately, closer to the end of the pregnancy she had 9 spells between t-giving and xmas along w/sporadic spells throughout the summer (the heat mostly). being on the propranolol produced a smaller weight baby than our other 2, but trust me he has caught up quickly w/his eating habits. so to answer your question, it can be done, but proced w/caution. we were not trying to have another, but then again do you ever really plan your babies? hopefully, this helps you. if you need more info, let me know, i have tons of info. (after doing some recent research, it looks as though she has hemiplegic migraines vs. having had a TIA). oh by the way, she saw/sees a hematologist who put her on heparin shots during the pregnancy because of the unknown paralysis.

i'm sure you will do the right thing. and yes, you're right it is hard to care for a newborn and 2 toddlers w/a potsy mom.

[bttrflyamby1981]

Hi Linda,

My heart goes out to you!! I was told that I would never get pregnant, but two children later I proved that doctor wrong. If you want it this bad, don't loose hope. You are young and I hope you will be well enough to have your own children before too long. Adoption is always a great option so maybe that's what your ment to do when your well enough.

No matter what happens, I wish you the best.

Amber

[AJVDK]

I want you to know I am thinking about you. I feel so bad for you, and what you are going thought. The one thing I do want to say is if you want to have a child don't give up. Talk to another doctor. I was on bedrest from 19 weeks on with my son, and my water broke at 29 weeks. I can not have antmore children. My husband and I where thinking about adoption,( my husband is adoped). Now I am thankful for my son, but I know there is know way I could handle anymore with being sick all the time. I am hoping later down the line things will change.

The one thing I would like to say is don't give up on anything. When I first got sick, I thought POTS was going to take my hole life, and for a while it did. I can no longer work, but I am starting to find ways to be happy with my life now. I know its not what I wanted, but I have just found a new life.

I wish you the best, and you are in my thoughts.

[Guest Belinda]

Really look into adoption...I was adopted as an infant look how nice I turned out ..I am sorry your feeling this sweetie..I have children but can understand the about letting things that matter to us most disappear!!

You really neede to get your hormones under control..it wil probrably help your body to normalize and baseline...

I know you know that..just reinforcing the issue!!

Ask about the bio-identical hormones they are more gradual..

Belinda

[Stace915]

Hi that has all been a major concern for me since I got sick as well and all my doctors say that they don't know if I would get worse or really what would happen if I went off all meds etc. Its definately hard and I also always wonder, did I do something wrong, why did this happen to me, but if it doesn't kill you it makes you stronger and you and all of us have survived thus far and I really do believe we are stronger than most people. Good luck and keep your head up!!

[corina]

linda,

i am very sorry that your doc told you this and think that when you would feel some better (maybe after some more years????) you could get a second opinion like calypso suggested.

you have reason enough to be mad and sad because you're so young and it really doesn't seem fair.

i have two wonderful boys who i love so very very much but i've felt so very guilty when i wasn't able to help them or when i couldn't drive anymore so i couldn't take them to the cinema's or the beach or whatever and there are lots and lots of moments that i was so mad about being sick because it effected them so much. i didn't know about the dysautonomia when i got pregnant, it was there now and then and hit me when our youngest son was 5. but: knowing that you have a chronic illness could help you arrange things so that having a baby would be possible.

what i want you to know is that maybe in the future you could have a child (your own or adopted) don't let the pots rule your life. try and rule the pots.

love,

corina

[Guest sonotech]

I would certainly try and meet with a MATERNAL FETAL MEDICINE (MFM) doctor. They specialize in "high risk" pregnancies and many times have alot more updated information to give you. You can schedule a "pre-conception" consultation. I worked for these docs for many years and we saw lots patients who were told the same things as you were told and the docs were VERY WRONG. Most of these women were able to have very healthy pregnancies under close supervision.

My experience is that all 4 of my pregnancies went perfect and had normal deliveries (POTS and all) and there are lots of meds that are safe to take when pregnant, but only a specialist can help you there (MFM).

When a woman gets pregnant, their blood volume increases and most women with cardio problems (even MVP) feel 100 times better when pregnant and are asymptomatic (like I was).

Don't give up on your dreams and try and meet with a high risk doc, you might be very suprised.

Laura

[Guest Julia59]

I'm so sorry your sad Linda. You may be able to adopt one day. My husband and I thought about adopting an older child---maybe 6, 7, or 8 years old. Right now, I have to get my health straight/stable---whatever you want to call it.................

I am fortunate to have a son. I gave birth to him when I was 22. He is my life----everything to me. My pregnancy went very well---I never felt better. It was after he was born that changes started to take place in my health. I was fortunate to have fairly decent health---other then the tachycardia spell, and a couple bouts of CFS---otherwise fairly normal life. The birth was difficult, and I was surprised that I couldn't push him out----a forceps boy--- Broke my tailbone, and knocked my pelvis out of place.

A Doc told me once that folks with EDS have easy births---WRONG! Not if your pelvis is too narrow---and you have a 7 pound baby with a 5 pound head--------I had one of those that grew into his head---LOL---now he's 6ft. 2in. I had an x-ray of my pelvis----and it showed that is was extremely narrow.

My son Michael was from my previous marriage, so Ron and I tried to have one of our own. I was never able to conceive-my progesterone levels were almost non-existant. I took progesterone treatments---but my levels didn't change. I could not maintain a pregnancy. We gave up after I crashed with my POTS at age 41.

Your young, so I know it's especially heart breaking for you, but the good news is things may change for the better with your health----and even if you can't actually have one of your own, you could still adopt, and be able to take care of a child.

You would make a great MOM.

I think docs needs to take a closer look into our hormones.......

Hang in there dear.......................

BIG HUGS,

Julie :0)

[lthomas521]

Hi Linda:

I was relieved to see that you are only 24 years old. You have plenty of time!

Did the doctor figure out why you aren't having periods? There are several possibilities. Since you have had at least one period in the past, that rules out a lot of the rare conditions. The most likely explanation in someone your age is polycystic ovary syndrome (PCOS, also known as Stein Leventhal syndrome). In women with PCOS, the egg-containing follicles within the ovary stop their development at some point before ovulation, so you can see all sorts of little cysts in the ovaries when you look at them by ultrasonography. PCOS interferes with fertility, because the women with the syndrome ovulate only a few times per year, if at all. No one really understands PCOS, but it is associated with excessively high levels of insulin and male hormones. Women with PCOS tend to be overweight and have excessive facial hair.

There are several approaches to treating infertility in women with PCOS. Some studies have shown good results with weight loss and use of metformin for control of blood sugar. Women with PCOS can also use follicle-stimulating hormone to induce ovulation.

Even if you don't want to become pregnant right away, the doctor should really figure out why you aren't having periods. If you have PCOS, that means that you are probably at higher risk for blood lipid problems, diabetes, and heart disease in the future. If you are overweight and/or your blood sugar and blood lipids are high, you might want to ask for a referral to a nutritionist. The dietary interventions can make a huge difference, but doctors tend to have little confidence that their patients will actually adhere to them. They might also tell you to exercise, but I would be very cautious about following that advice. A woman in her early 20s should not be having unstable vital signs. If she does, then the problem is definitely more than just inactivity. Exercise probably won't fix the problem and overexertion could make it worse.

Best of luck.

[MomtoGiuliana]

You are so young and I cannot see any reason why you should have to give up on your dream to be a mother. It does sound like you have several health challenges that have not be addressed adequately yet. Also, can you talk to a specialist in high risk pregnancy? They may have a different perspective.

Take care,

Katherine

[shannon]

Hi Linda,

This is a topic I have spent a lot of time thinking and crying about too. In fact, I cried just reading the messages on this post. I want to be a mom someday too...I've even thought of ideas for baby books! But like you, I don't know if it is going to happen for me. I think we should both remember that POTS is a dynamic illness. Maybe someday you will feel well enough to have a child....either with a pregnancy or adoption.

If you ever feel like venting about this, feel free to PM me.

Take Care!

[dizzygirl]

Hi folks.. I wanted to drop in real quick and let you know that i have read the posts and that you all made me teary eyed!! love ya all!! your guy's support and encourage means so much to me...

I want to reply more and explain things a bit better.. but pots is kicking my butt right now.. and i gotta keep it short.. so you'll all be hearing back from me when I'm feeling better!!

luv and hugs to ya all

dizz

[Jenn202]

This is a touchy and difficult subject for all those with a chronic illness.

24 is so young and you have so much time to consider children. Your condition might completelychange.

I am going on 35 so my clock is ticking.

My husband and I have been discussing adoption as a possibility in a few years....

For you, I would definetly not get too discouraged...you technicall have 16 plus years to have your children and so much can happen.

Although I do truly feel your frustration and pain b.c I have reall yfelt it since I got married 4 years ago......

Hang in there!

[avais1]

I know this is really hard for you. I don't have any real advice, but I'll tell you a story (real quick) .

POTS first hit me at 20. I was fully incapacitated for 1 year, and battled for another year. I was 22 when I finally crawled out of the hole. In that time frame, I watched my friends graduate from college and get married, doing all of the things I had to give up. At 22, I had to pick my life up and start again. Luckily, my POTS went into "remission" for 6 years! I never had better health in my life! During that time, I could have easily had kids. Then POTS hit me at 28, and took me out for another 2 years. I didn't recover until 30. During those two years, I got engaged, and I did want children, but had given up on the idea. I knew my body wouldn't handle it. I will now be 32 next month, and I have been blessed with relatively good health. I have met with an ob/gyn who specializes in high risk pregnancy, and Dr. Low said he saw no reason why I shouldn't attempt it.

In a nutshell, hang on. Give it time. You are only 24. Things can change DRAMATICALLY from one year to the next. Maybe you can't do it today, but it doesn't mean you can't do it tomorrow.