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trublukrav55

I Need Help Right Now- Re: Pregnancy

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A short synopsis of me: I just found out that apparently I was misdiagnosed with Fibromyalgia for 10 years. I am now 30 and received my Dysautonomia diagnosis when I was 29. Because I figured that Fibro would not get worse than it was, I decided to ignore it, and went on to get my doctorate in Psychology, and now work more than 40 hours per week, loving my job a lot. It is a part of my identity, and advice to "take it easy" will fall on deaf ears.

Anyway, my doctor said I'm borderline Pure Autonomic Failure type and POTS. I don't faint, but I can't regulate heat and get very irritable. I have been prescribed Hydrocodone 7.5/325 and have taken 5/day for the past 10 years- never more, never abused, can go without it when I have my 'sleeping Sundays' and dont take meds. I have also researched the fatigue portion, and take stimulant medication (Vyvanse) in order to not fall asleep while driving to work. All of my medications have been prescribed to me for the past 5 years or more, and I can go without them as well, but I sleep- A LOT.

Anyway, because pregnancy was initially contraindicated with PAF, my husband and I have pursued adoption. This is draining on me because many birth moms have latched onto the fact that I'm a Psychologist, and have become very angry with me when I set boundaries. They never want to talk to my husband, only me. Also, I should mention that I am the primary bread-winner in our family because my husband is a welder and not in a Union, which totally defies what I learned in grad school: "you shouldn't get into this because of money- people in the trades will always make more than you!" -- apparently people in unions and in trades was a more accurate term! (;

I can't believe this is my life right now, and I'm trying so hard for us to be a family of three. My husband says he doesn't mind, but I'm ambitious, I can handle things, and I am 'done' with the adoption process right now! (not actually done, but feel 'done') It'd be SO much easier if I could get pregnant; however, right now, if I don't take my 'ADD' meds, I fall asleep and stay asleep- morning, noon and night. Without the pain meds, I can't sit for more than 2 hours without my legs and arms turning purple. I get migraines, I'm tired, and I can't concentrate. I've never taken more medication than prescribed in 10 years, and do go days without it. But, if I go 9 mos without it, we will possibly lose our house/life because I can't work.

I'd be less dramatic about this if I wasn't 30 and wanted 3 children. My life, as it stands, I can handle and have handled well. I just want a family and I can't do this anymore. What I am asking from this forum is some advice as to possibly getting pregnant and staying on the medications? I read that women with ADHD continue to take the medications for work-related reasons while pregnant (i.e ADHD = fired), and that Hydrocodone is often prescribed during pregnancy and if it has been 10 years, the risk to me without it would supersede the risk to the baby.

I should also mention that I metabolize pharmaceuticals very quickly- can't take a birth control pill because of spotting, and need double the antibiotics when necessary because of my liver. That's why it may seem like I take a lot of medication- but when tested, it is out of my system even though I've taken these prescriptions for a better part of a decade!

I would really appreciate it if someone told me the truth about dysautonomia and pregnancy, the risks of my meds, and what I should do. I'm sad, tired, and feel all alone in this. Believe me, it'd be SO much easier if I could just not think about it and get pregnant!! It'd also be easier if states made adoption easier on the birth mothers and adoptive parents- but that's an entirely different soap box I'm too tired to get on! Please help me.

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Sorry your having such a hard time. It's not easy. -to be blunt, my dr told me to absolutely under no circumstances get pregnant. He said it will most likely lead to me being very sick and I would have to terminate the pregnancy if I didn't miscarry first. Basically thy my body knows its not healthy enough to nourish a fetus. I'm 24, so I'm with you on the family part. -I am a paramedic so I can help with the medical point of view also. When you get pregnant, the fetus needs a lot of blood to live, POTS is very commonly associated with hypovolemia, meaning we don't have enough blood in our body. When pregnant your body needs to be able to provide for a baby. Often pts with autonomic functions bodies are 'just getting by.' -of course everyone is different and all of our symptoms are different. I would really suggest you talk to your doctor, he may have a few 'tricks' that will allow you to get by. -also think about te quality of your life if you do have a baby, will you be able to do the many continuous things mothers do. Also, if the pregnancy makes you worse.

Hope everything works out for you and I wish you the best of luck. -and I'm crossing my fingers for you that some one else on here has experience thy can relate to you.

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Hi,

I don't have that much wisdom to offer. I am pregnant now, by choice. I knew that I have POTS and that I was always a weak person before this, but my husband and I wanted this baby. I have had enough other kids to know that pregnancy, at least for me, is hard, really hard. But, we think of it as a short term hardship for a long term gain. But, we would not go into it without knowing that my husband has to be available to help me a lot more. The first trimester, (and the 2nd , and the 3rd...ha ha ha) especially is hard. You are going through lots of hormonal changes and your body is trying to cope. The thought that it is only 10 more weeks, or whatever, is not really comforting when you feel so ill.

You have to really consider if your body can handle that right now.

Also, it is a good idea to get in touch with a teratology hotline about the meds you are taking. For example, I checked my Prozac and the benzo I need on occassion with them, as well as any issues with breastfeeding. Sometimes the FDA is more conservative, and the latest studies show that certain meds that are not recommended by the FDA are really OK - with no differences in complications for the baby. But you have to do your research.

I wish you the best of luck in your decision, and hope that you feel well no matter what you decide - \

Abby

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Hi, welcome to the forum.

Esp. re the meds you're using you'd need to check with your doctors. They're the ones to advice you on that. We're all so different so I'm not sure whether pregnancy would be wise in your specific case, I DO understand the desire though. Hope you your partner and doctors willl be able to figure this out!

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A high-risk Ob-gyn could best advise you on meds during pregnancy in your situation. Meds have to be evaluated in a risk-benefit manner and would be specific to your situation. My experience is that many specialists will recommend that meds absolutely not be taken during pregnancy or breastfeeding, whereas a high-risk ob-gyn has specific expertise on this topic and can better evaluate your situation.

I do understand your desire, as well.

Have you considered international adoption? I'm sure you have. I know it is also very challenging--and expensive.

There are some POTS patients on DINET who have successfully adopted.

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My fiance and I really wanted children, too, but were advised by my POTS doctor at the Mayo Clinic to not go ahead with that plan. Babies take an incredible amount of energy, and I never know day-to-day how I'm going to feel and how much energy I'll have. We also discussed adoption, but have decided against that also because of the costs involved and it wouldn't solve the main situation - that of knowing I would be able to be there for my child every day.

Some of the others have also written that every case is individual, and that your doctor is the best person to ask for advice with getting pregnant and your medications. I agree with them wholeheartedly.

Good luck to you, and please let us know what you decide. We're here to support you in whatever decision you and your husband end up making!

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Had appt with specialist today, asked him about pregnancy. He told me that 80% of POTS patients GET BETTER with pregnancy!!! He also said that they need a lot of IV fluids, and extra IV vitamines. I was shocked, and thrilled )

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my POTS developed during pregnancy, and I developed gestational hypertension and pre-eclampsia due to it. I've also had it since delivery 3 years ago.

BUT - pregnancy outcomes for POTS patients are no different than for the general population. some people get worse, some get better.

my OB & my cardio and endo have said beta blockers are fine in pregnancy. antihistamines can help and are ok. benzos are not ok. ssri's are generally ok under a dr's supervision.

I don't know your exact condition, but regular POTS patients can have babies. It might be hard and uncomfortable, but it's not inherently dangerous. Having an infant is probably harder than the pregnancy on you.

http://www.ncbi.nlm.nih.gov/pubmed/19659618

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2894719/

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I've been thinking about this recently because as my younger daughter nears a year old and won't be a baby any more, I wonder if I want another. But I'm afraid that I'll be as sick or sicker as I was with her pregnancy. I remember when I was 7 weeks pregnant feeling soooooooo horrible and just counting down the days until I was out of the first trimester (50ish) because getting through a single day was so hard. I remember being terrified that I would have a miscarriage because I didn't think I could knowingly put myself in that situation again, but I knew I wanted another child. I also have to worry about taking care of the two girls that I do have -- we would have to get a nanny, probably, if I were going to be pregnant again. So we think that if we do want a third, we'll explore adoption. But honestly I don't know if I would have enough energy for three children, even if I got to skip the pregnancy part.

It's frustrating to feel like POTS is making decisions about our family size for us, but I guess that's life. If it's not money, then it's career demands, or age, or fertility . . . very few people have perfect circumstances.

So what would I do in your shoes? You say you are the primary breadwinner . . . could you afford to be on bedrest or leave from your work? I guess my advice to you depends on your answer to that. If you can afford not to work and would have the support and help that you need, then I'd consider it.

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Thanks for the responses. I didn't know that this forum didn't notify me by email when someone replied, so I figured no one did until now! I guess all of your collective pieces of advise raises another question/problem for me:

Since I was diagnosed with Fibromyalgia, I've been reluctant to discuss things with doctors, let alone go to a new one. I am probably hypersensitive, but if I see the eye-roll "oh, you have fibro" one more time, I think I will scream. Even the specialist who diagnosed me with dysautonomia gave me that impression yesterday because the first medication he tried me on didn't have an effect. I talked about this weird thing that happens when my joints feel like they're on active fire- all my joints! It's only happened 7 times and has awakened me from a dead sleep. He said "that's not dysautonomia" and then said he was going to try another med then left the room. So, yeah, not the most awesome thing ever.

How did you guys get past the "is this doctor going to think that I'm exaggerating or feigning in order to get some secondary gain" feeling? Or because I'm head-strong, still working, and/or dont 'look like' everyone else with the disease, I must not be suffering as much. The problem is that they don't know me or my personality or my hard-headed-ness----- They don't take the time to ask, or even take more than 1/2 hr with me because they're busy, and I usually wait over a month for these type of appointments. The reaction I get from doctors in the physical medical field makes me feel hopeless and very sad, like no one will take me seriously or actually be willing to look at my case with unbiased eyes because he/she cannot figure out what is going on, so it must be 'my fault'? So, talk to my doctor is easier said than done. Every time I've actually laid it all on the table, I've gotten judgment in response. that's why I didn't look into the Fibro for 10 years, and probably why I'm in a downward swing right now. However, that hard-headed-ness of mine is making me so frustrated with all of this, that I'm on the verge of saying **** it, and see what happens if I do get pregnant, then deal with the aftermath as it comes.

Edited by corina

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Hi again,

Shan1212, I found your post so interesting because I am 10 weeks now, and I was just saying that weeks 6-10 are always the worst! Before week 6, and after week 10, I am always like "It will be hard, but I will get through it, and afterwards it will be worth it.". During those weeks on the other hand, every minute is an eternity, and I spend a lot of time thinking "What were we thinking? I can't do this another minute!".....

LOL - the joys of motherhood!

But that was always true for me, for my babies pre-POTS and for my pregnancy now.

trublukrav - I am a little nervous about a plan of "Go for it and deal with the consequences later"....... but I do understand your hesitance to deal with the doctors....

Good Luck!

Abby

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Trublukrav . . . well, pregnancy can hit anyone hard . . . just look at the Duchess of Wales. So I understand the thinking that you may as well try and see except for the concern about your medications. You do need medical advice on what you can and can't take while pregnant, and you need to know that you'll have a doctor to call when you need help.

I was diagnosed while pregnant, and it was actually my OB who sent me to the cardiologist. Do you have an OB? She coordinated with the cardiologist about medications.

As for medications, I am NOT a doctor, but my experience with pregnancy and breastfeeding has been that doctors want to cover their behinds so they just adopt a "better safe than sorry" approach when it comes to medications and breastfeeding. (With pregnancy they seem more willing to prescribe medications when truly needed - with breastfeeding it's just like, oh, well you don't HAVE to breastfeed so obviously your condition can go untreated . . . ) My POTS got really bad this summer, manifesting as anxiety, and two separate doctors refused to give me anything because I was breastfeeding . . . how did they know I wasn't experiencing extreme PPD? Thankfully my GP is awesome and with one phone call we had a script for Ativan and Zoloft.

For specific medications, I've called Dr. Hale's hotline at Texas Tech and asked the nurse. http://www.infantrisk.com/


Abbyw, yes, 10-11 weeks was always the peak for me, and then by 14 weeks I was feeling much better (in pregnancy one it was just morning sickness; in pregnancy two it was morning sickness and POTS misery).

I think it's pretty awesome that we have thought, "I can't do this another minute," and yet we did!

Congrats on your pregnancy!

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I'm 34 wks pregnant today. Both dr. Grubb and my local neuro, dr. Blitshteyn, told me some people get worse, some get better. For me, I think the extra blood volume the body normally makes in pregnancy has helped me. I've only had a few episodes of near fainting. I can't say I can relate to many of your symptoms. All i can say is I've been pleasantly surprised that many of my conditions (dysautonomia, small fiber neuropathy, rheum arthritis) have been very manageable with few meds, though my conditions are thought to be all autoimmune caused. My advice would be to consult with a high risk ob, as they are experts when it comes to meds in pregnancy. My ob would tell me a med wasn't safe, but the high risk ob would say ok with certain meds. A good friend of mine had to take hydro condone during most of her pregnancy and her baby is fine. Docs prefer people to avoid as many meds as possible during the 1st trimester when baby is forming. I feel for you and understand where you're coming from as far as wanting a baby. We went back and forth for at least 6 yrs with having our own/adopting. The adoption process was not great for us. Many agencies turned us down because of my health even though hubby is perfectly healthy, and the cost for many adoptions was outrageous to begin with. We were actually in the beginning stages of going through foster care training when I got pregnant. We have a few friends who have ended up adopting through foster care. Of course, there are pros and cons but it might be something to consider. Most counties have frequent overview sessions where they tell you about foster care and you are able to ask questions. I'm scared to death how I'm going to feel after having my baby. I am almost 40 which is hard for healthy people. While my hubby plans on taking off 3 wks from work, I'm a little nervous what I will do after that. I do have a mother nearby, and good friends that would help. I tell myself the worst thing that can happen is our little girl will go to daycare if necessary. Do you have family nearby that could help out? Would you consider daycare if necessary? I wish the best to you.

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I have had 2 sucessful pregnancies (5 miscarriages, but I also have factor V lieden so that could be a factor in at least 3 of them) and I have eds (most likely vascular due to strong family history).

My first pregnancy in my mid 20's I was okay until like 18 weeks, then I had a few odd BP reading so my doctor made me go to flexible part time days at work. I had a corporate job and it was nothing physical demanding. At 26 weeks the company went on strike, and I actually worked almost 2 weeks solid. I sleept on couch in my office. When the strike ended I was 29 weeks along and went on bedrest for the next 6 weeks. I was monitored closely, I went to the dr's 4-5 times a week. At 35 weeks my baby was over 6lbs, lungs ready so they did a planned c-section. My baby was fine. The 72 hours post partum were BAD. I had crazy high BP over 200, headaches, I just felt horrible. I honestly didnt even hold my baby till day 3. I felt better after having a d/c for clots and then had a few kidney issues that caused a month of issues but by 3 months post partum(a hard three months much harder then the pregnancy) I was back at work part time, I had traveled by airplane fine 3 times, and was doing okay.

Baby #2 I think I was overly catious. By 16 weeks I stayed in bed, my husband treated my like a princess and I did very little. Besides my dr being driven crazy by my POTS BP/pulse readings I was okay. My baby stopped growing at 34 weeks and so they decided a planned c-section. My baby was little but fine, just a bad feeder for months, and had tempature regualtion issues. The dr said he could not close me c-section (i had never heard of this before, I was freaked out) he said the tissue was to fragile? It was another month in bed to heal open. Then I got an infection that lingered for 9 months , it was a new CMV infection. I really think I decondtioned myself by being in bed so long and I should have done more while I could of when I was pregnant to keep myself in shape. By the year mark I was back to normal. Able to travel and drive and go out.

I have no regrets as far as what it did to my body by having kids. Sure they were rough months, pain, and I didn't get to do all the normal stuff you see on all these baby story shows on tv but who cares. My husband wanted one more (he came from a large family) and since during my last POTS relapse I was housebond for more then 9 months , he said it was just like when I was pregnant. My 2 reasons against it was I think as I aged my body would not tolerate pregnancy as well. I wish I had my kids younger but I was all aboyt grad school and my career. As I have now found a long history or anerysms and vasuclar EDS I now worry about passing this on to my kids. I have no problem with my own suffering but I look at my kids and can't imagine giving them this.

We have been offered to adopt three kids but no siuation was right for us. If one was right I would do it. I also had guardianship of 4 kids on and off over the last few years due to their parents jobs loss and illnesses. The extra kids have actaully helped keep me going. I know if I did not have kids I would be in the house all the time. There was a day I had to go see my kids guidance counsler because of a deadline. I couldnt stand up and my husband was working an hour away(I would normally make him go in if I was having a bad day) and ,, I rolled into the school, not in a wheelchair , but on the ground and grabbed her leg. I got my child into the class but I also knew that I could find a way to do anything I needed to on my own.

As for meds I took them during my first pregnancy and my child is fine. I took labetol for 8 weeks, hydrocodone during the last 4 weeks (for kidney and ligament pain) I took a half a lortab 5 day a week? My doctor had no issues with the lortab. They actually wanted me to due full pain management near the end. I also took a few klonopin during my pregnancy. I have hyper-POTS and was not dx hyper at the time. I just knew I would have the aderline surges and shake and sweat like crazy and my vitals were crazy. I took .5 klonopin during these attacks. I weighed it out with my doctor over a .5 tablet vs the aderline surges. I took a klonopin maybe 10 times during my pregnancy and my child was fine. I know klonopin is a controverisal one.

My second child I took nothing and it took a toll on my body for sure. As I said I opted to stay in bed.

I actually am in a worse state now then when I was pregnant, I feel just do to age. My pregnancy were never life threathening but were not comfortable. I confused doctors and I was labeled a demanading patient because I wanted extra care(but again my insurance paid I care about my baby not my dr wanting to get to the golf course early).

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