Saw A New Doctor

[OCsunshine]

SOooo... I saw a brand new doctor today. (I'm not getting rid of any other doctors... I have a great one at Hopkins and several other docs that are knowledgeable and great with treating my NMH.) Dr Rowe at Hopkins recommended that I see this Cardiologist, Dr Nsah, because he is closer to where I live and I should have a local contact that's versed in NMH.

Well... Dr Nsah was VERY enthusiastic and VERY talkative- like SO opposite of all of my other docs. It was quite strange for me!! I told him my story and how I've had NMH for 12 years... have been on the same medicines for just over a decade and have improved greatly and am living almost at a health level of where I want to be... that is, a level I am willing to accept.

There is a wrench in the plan, though- we want to have children (at least I do... my husband is hesitant b/c of my health).

Dr Nsah set a goal- he wants to get me slightly more stable and then wean me off ALL of my meds! My Hopkins doctor said my meds are pretty safe for pregnancy (atenolol, florinef, Klor-con/K-dur) and it would be too risky for me to be pregnant and NOT to be on any meds b/c my blood pressure might bottom out too much... but Dr Nsah says NO MEDICATION during pregnancy at all. That sounds great to me, BUT it scares me so much!! OFF ALL MEDS? I have been on this specific med combo for 11 years and I feel fairly good most of the time. I hate to mess with that... but I do agree that meds can be dangerous for the baby.

I just don't know... I am so confused.... any input would be GREATLY appreciated.

-Rachel

[sally]

Hi Rachel,

For me....I did not take any medications during pregnancy with both of my children, I did not have a diagnosis during that time frame and I was untreated. I felt great throughout the pregnancies with no problems with BP as I had/have without being pregnant. I didn't understand why at the time but I understand now why that occurs.

good luck on whichever decision you make.

[sstephan]

Hi,

I did not have a dianosis at the time of my pregnancy. However, I had many problems and was on a lot of medication.. My problems started before I was pregnant though. In my case, I had to take the medications. My resting heart rate was near 200 and my blood pressure was dropping very very low. My worst time was the second trimester. Third trimester I felt great. I took Toprol, Zoloft, Protonix, Reglan, and Nulev during my pregnancy. However, Toprol was considered a class C drug. (effects unknown) My daughter was very jittery directly after she was born. The doctors said it was her nervous system trying to adapt but deep down I have always felt it was the medication. I would go on the advice of your OB when you are pregnant.

It is possible to be pregnant with dysautonomia. It is not easy, but the outcome far outweighs anything you may go through.

Best of luck,

Susan

[corina]

rachel,

like sally and susan, i was undiagnosed during both my pregnancies so i wasn't on any meds. i always think about my pregnancies as having the best times of my life, i felt so much better (yes i was tired at times but overall i was much better). in my opinion (but of course i'm not a doc ) it must have been because my bloodvolume was higher (not tested). i got two beautiful boys and i cherish them.

i do understand that it must be VERY frightening for you to go off your meds, but i do think it is worth the try. if itdoesn't work, you can be proud of yourself because you tried, if it does work you will worry less!

all the best in making a very difficult decision!

corina

[MomtoGiuliana]

I have the same doctor--he said the same thing to me when I talked to him about the possibility of trying to have a second child. He is uncomfortable with any POTS meds being used during pregnancy. He is a GREAT doctor--very knowledgable and kind--I hope you have as good experience as I have had with him. I would want to be under his care during a pregnancy--especially rather than a specialist who is hours away. I think that was a good move on your part. He should also stay in communication with whomever you choose as you ob/gyn--who will probably have different opnions on the safety of some meds with pregnancy.

I was also undiagnosed and did not take any meds with my pregnancy--but for me pregnancy was extremely hard after the first trimester, as my POTS symptoms worsened as the pregnancy progressed. However, I managed with no meds and worked full-time until about the 7th month of pregnancy. I was even sicker post-partum until my daughter was about six months old. So, everyone's experience is different and can be hard to predict. It will be important that your doctors keep in touch during your pregnancy.

Good luck.

Katherine