Merrill

It's great that you're doing well with this pregancy -- you've come a long way! You're almost there! (You should read Ethansmom's recent posts--she's delivering soon!)

As I understand it, beta blockers are OK during pregnancy, tho it's best if possible to avoid during the first trimester. But many people have to take other medications to manage pots symptoms--meds that have not been approved and are not considered safe for the developing fetus.

It sounds like your baby's doing great--and you've got a great team of physicians behind you ...

best wishes for the home stretch,

merrill

It took me a while to fill in all the missing letters, Gittel, to figure out your question! Many of us are old enough to still spell "people" with all its vowels!

I think we range from about 18 to about 60. That's a guess. There are a good number of people here who do not speak English as a first language.

That's a great question, tsampa ... it's true that many conversations have focused on how to get through pregnancy, but what about the REALLY tough part: raising a child? Especially during the first few years, when they need us for everything and demand so much energy? I'll be adopting this year--and even though I'm able to work full time now, I'm sitting most of the day. Spending all day with a baby will be a real shock to the system (as it is even for people without pots/dysautonomia). Any tips?

m

PS Maybe this should be it's own topic? Tsampa, feel free to start a new topic with your first post--or I can do it later if you don't.

You've received great advice, Ling... here's one more tip. If you wait until your temperature peaks, it MAY be too late... I have one friend who got pregnant twice in her 40s by having sex every other day for 10 days around ovulation time. I'm sorry it's so tough for you without medication ... I hope that achieving pregnancy and having a higher blood volume during those months will help you feel better. Best of luck,

m

KathyP, I'm not Michelle, but I'm online this morning and I just wanted to say YOU'RE IN THE RIGHT PLACE!!! All roads lead here! (All three domain names, that is--they all bring you to this same place. Stay awhile! We're a nice bunch and we'll help you and you'll help us sort through this wild and wacky world of dysautonomia and its many symptoms and syndromes.)

To everyone, I think it's good that newbies come and post their questions--even if those very same questions have been discussed in the past. Remember how great it felt to find a place where you could safely ask a question and have someone answer you--someone who maybe experienced something you had or whose doctor had shared some information or advice that they could pass along to you? Remember how great it felt to find your voice and discover that you could use it to communicate to others how it felt, deep inside ... to finally let go of something you'd had to hide or disguise? Or something you didn't understand at all and that was scarey to you?

Those of us more comfortable using the search function can copy and paste links to old threads, if desired, to help share a wider version of an answer. But I think newbies should ask for information and those who feel up to sharing can do so.

Corina, I'm sad that you say you feel uncomfortable ... from what I've seen of your posts, you're using the forum in a completely appropriate way ... people here get so much from your humor, your insight, your support, your cyber-roses, and your medical experiences. I'd like to continue offering you the same from my neck of the woods. (Know what that means? )

Michelle, I'm half teasing when I say I hope I haven't strayed too far off topic or too far into your domain as owner/operator/visionary of this site... but we all make meaning where we can, and this clearly is a place where people come to do just that.

Thanks for listening,

merrill

KathyP, I think I heard about this site from another forum, the one at NDRF.com (national dysautonomia research foundation), which my doctor recommended. This site was referred to as potsplace.com ... and in fact, that's the address I type into my browser when I want to visit the forum. I was always confused that the URL changed to DINET once I came to this section of the potsplace web site.

All that's to say, more than a year ago when I found this place, I thought it was completely dedicated to POTS. (This is as opposed to the ndrf forum, where folks seemed to suffer from more wide ranging diagnoses. And it bugged me at first that the people with pots didn't converse with one another inside a sub-topic conversation group dedicated to pots that had been set up by those who run that forum. People, it seemed, wanted to be together no matter what their diagnosis, and they didn't want to split into subgroups! There's a lesson here somewhere ...)

I've learned that we all take different paths to get here ... but we seem to share in common the goals you describe: to gather and share information and to gather and share support that sustains us along our healing journey, as EarthMother so lovingly and aptly puts it. I've also learned that yes, this place is for anyone with symptoms of dysautonomia, pots or otherwise. (By the way, I'm like you--I first got the pots diagnosis and then recently got an IST diagnosis. I didn't know that IST was a form of dysautonomia until you just said so ... )

My personal opinion is that we should just keep on keepin' on and not think about separating our different kinds of posts to different sub-groups. It's clear that not everyone reads and responds to all the posts anyway; in addition, it's easy to sort through what's here to find what you're looking for. The search function is fast and effective--just be sure to search farther back than the last 3 months or so!

I don't think think I've ever been personally offended by posts on this site ... annoyed from time to time, maybe. But I expect that! This is the INTERNET! If there's a link I don't want to click or a topic I don't want to read, I don't.

I'm super tired and my thoughts are unraveling in a disorganized kind of way. Final thought: I think we should all take a deep breath and relax. We're fine; everything is fine.

merrill

Hi, Jess. Ditto what Katherine said! Every word! Not that I have personal experience, but I live vicariously through friends ... one of whom thank goodness delivered in a hospital, but she's 44 ... After 30 hours labor, she ended up w/c-section. I think the food thing is so that you don't have problems in surgery if you do end up having to go that route ... but my friend kept drinking (and throwing up) throughout her labor. She wasn't confined to bed -- she had a doula who coached her throughout -- and moved around, showered, walked the halls ... whatever position worked.

As Katherine said, try not to worry about what you can't control ... remember, your body hasn't been yours exactly for the last 9 months, and this last bit doesn't belong to you either. What will be will be, and it sounds like you're surrounded by clear thinking experienced people with only your best interests (and those of your baby) in mind! You'll do great--I just know it!!!!

Be well, Jess.

Nina, I've taken lupron (in the course of fertility treatments) ... and I don't recall having side effects from it. I don't recall that it exacerbated any pots symptoms either. (Yay.) Good luck with it; I hope it helps you!

merrill

For the last 14 months at least, since I've been a member here, people have used the phrase "autonomic storm" to describe a "flurry of symptoms" (as Roselover put it).

Emily, are you trying to stump Corina on purpose by making up new words?

Corina, I think she was trying to say "watched pot," not "watchpot." That should help!

m

PS thanks for the good wishes ... I started the zithro today (5-day prescription) and took my acidophilus ... was wracked with pain (stomach/gut) after breakfast--which lasted a couple hours. Don't know what that was about ... but feeling better now and very hungry. I've got some white rice cooking on the stove. Head congestion is a little better. I'll be right as rain in a few days, I'm sure.

Thanks for the tips ... I guess I was hoping for a miracle and Surprise! I didn't get it ... I think once the runs start from bad reaction to antibiotics, it's hard to get them to stop without discontinuing the meds. Even with the probiotics, I got way worse overnight and was really sick for many hours today--even without my morning dose! The doctor switched me to zithromax (which I've heard isn't always effective), and I'll wait til tomorrow to start it and give my guts a little more time to heal. I am sooo sick of being sick in this way--it's been a full week since this cold and sinus infection hit--gut distress on top of it all is pretty yucky. Sigh.

At least I've got last week's desperate housewives on tape for tonight's entertainment. That oughta take my mind off my troubles for a little while.

Take care y'all.

m

PS just to confirm, take acidophilus with a meal, right? I think zithromax goes on empty stomach; this could get confusing!

Hey, Jess, great to hear from you! And congratulations--you've come a long way! I can't help w/your questions either ... it sounds like you're right on track though, thinking about things in a healthy way. Your youth--and your experience--will serve you well, I think. I'll bet you'll be OK at the birthing center ... Can IV fluids be part of natural childbirth? No? Oh, well. As long as you can be monitored during the process for bp, hr, and such ...

Send us (Katherine) a picture of yourself this month!!! Then pictures of your baby later on.

Best of luck for a stress-free and healthy final month--and a short labor and an easy delivery when the time is right!

merrill

Thanks for sharing your lovely story, Ernie! Yay you!

May the kindnesses continue; you deserve every one.

best,

m

Thanks, Morgan. You have such a generous doctor!

I did make it to the store and back ... with a bottle of Solgar brand Advanced Acidophilus Plus (w/500 million microorganisms per capsule--250 of L. acidophilis and 250 of B. Lactis). I took 2 capsules since I have some catching up to do .

I found the whole refrigerator case full of options at whole foods a bit overwhelming! Too many choices--too many brands--too many different doses and ingredients. I must've stood there gaping at the jars for 20 minutes. I can't remember if I saw FloraQ, but it seems I must have. I opted for the millions instead of the billions ... that seemed a bit much of something I'd never tried before.

Em, glad to know you're back online; I owe ya one.

THis isn't exactly pots related, but has anyone been able to solve the diarrhea problem that comes with antibiotics by taking acidophilus?

I've had 2 and a half days of augmentin, and my doc recommended acidophilus ... but if that doesn't work and I'm still having problems, she'll switch the prescription.

I'm on my way out to buy some before the store closes ... thought I'd give it the ol' college try ... but I just wondered if I can hope for success! Wish me staying power to make it to the nearest whole foods and back.

thanks,

m

I get sooo winded and tachy with 10 steps in my house... Katherine, you do 6 flights at work????!?!?!?!? I am sooo proud of you! You go, girl! Now THAT's an inspiration!

Hi, Linda. Welcome here. You've found a great source of both support and information!

I underwent (unsuccessful) fertility treatments and was told that I could not be on medications during conception or pregnancy. The following quote is from the national dysautonomia research foundation Web site (check it out! great information there! http://www.ndrf.org) -- it's written by Dr. Low, one of the leading physicians treating pots/dysautonomia in the US (at the Mayo Clinic in Rochester, MN):

"Our patients have managed very well during their pregnancy and the delivery. They typically do very well during their pregnancy, feeling better than when they were not pregnant, especially during the first and second trimesters.

They should not be on any medications during their pregnancy.

The advice I give is as follows. They need to feel sufficiently well that they can manage without any medications. They need to be on a high salt, high fluid regimen. Their pregnancy should go well but should be managed as a high risk pregnancy by their obstetrician. During their delivery, their physicians need to ensure that they are volume expanded and like other high risk deliveries, they should not have to undergo prolonged labor. Finally, I tell them that they should be aware that they may feel worse in the puerperium (after their delivery) when their symptoms may return."

I hope that you can work with your doctor to taper off your meds so you can proceed with your family planning! I know there are others on the forum who have successfully done so--and I even think there are some who stayed on low doses of medications during their pregnancies. (But remember that research has not proven these meds as 100% safe...)

Best of luck to you!

Merrill

Corina, that REALLY made ME laugh!!

I love your lists idea... if only I could remember where I'd find some paper and a pen, I'd try it! Sounds like a good plan.

The doctor returned my call right on schedule and is calling in some augmentin to the pharmacy. I'm thankful; I really think I need antibiotics this time! It's been a while...

Zicam is an over-the-counter homeopathic remedy that's supposed to shorten the duration of a cold or help prevent it from developing if you catch it early enough. It has worked great for me in the past, but I do think you need to take it the first day of symptoms.

Peace, man. I've got two fingers up in the universal sign and wishing someone would pass me a joint,

merrill

Ditto what Ann said, Morgan. I'm sharing your struggles from afar and wishing there were some way to help lighten your load. It's a lot you're carrying right now. Wishing you a better day today--and tomorrow and the day after that. Take things one day, one hour, one minute at a time. It's all you can do.

Best,

merrill

Monica, can you stand to be on it for longer than a few days? I think a few weeks or a month might be in order... From what I understand, meds don't always show an immediate effect. If you're not suffering too much from bad side effects, it might help to try it for a longer period of time. I'd also recommend putting that blood pressure cuff in the closet and keeping track of how you feel on the medicine rather than going by the numbers. (Or even better still, take the florinef and try not to think about it for a few weeks and then ask yourself if you notice a change.)

It's my understanding that it can take a while to get the dose just right; you may need more, you may need less. Are you taking a beta blocker along with the florinef or just the florinef?

Also, it may be that the people who are benefiting most from florinef aren't posting on the site right now... florinef and midodrine, along with beta blockers, are the most commonly prescribed meds for people with POTS. (This is according to the medical research I've read ... You might also check out some of the articles/links on Nina's post at the top of the main page--answers to commonly asked questions). All that's to say, florinef might have a pretty good track record...it's just hard to know right now from the forum. And the truth is, only YOU matter when it comes to making decisions about your own body!

I hope it starts to work for you, or that you can find a better dose--or even a different med. In the meantime, drink a ton, eat something salty, and take good care,

merrill

Hey, Corina, here's another goofy expression for you: I'm sick as a dog.

(Actually, I don't understand that one myself; all the dogs I know are typically quite healthy! Can someone else explain? )

I'm suffering possibly the worst viral infection in memory ... and I'm kicking myself (there's another expression!) that I didn't remember to take Zicam at first symptom last Saturday. That's some serious brain fog for you; I've been touting its benefits for the past year or so, and I've warded off many many head colds. This time I forgot and WHAM!

I had my 1/2 hour neck and back massage Friday afternoon ... and I do frequently get sick after massage. These toxins I'm carrying around are mean! Does anyone else get colds or flu after a massage?

Anyway, I'm home from work for the second day in a row--I fear I'm still really contagious, not to mention uncomfortable! My sinuses are so painful and swollen that even my right eye is nearly shut. I put a call in to the doctor to see if antibiotics might be in order. I've got my fingers crossed...

Who's in the hole w/me?

Peace,

merrill

Actually, sleeping on the left side is recommended for pregnant women. Here's what I just found after doing a quick search on answers.com:

Two quotes:

"Sleeping on the left side displaces the uterus so it does not compress the large blood vessels (the aorta and vena cava)," says Dr. Shanahan. "This optimizes blood flow to the placenta and, therefore, the baby. It also helps prevent swelling in the mother's legs."

"Some doctors recommend that pregnant women lie on their left side in the third trimester to allow for the best blood flow to the fetus and to the uterus and kidneys. Because your liver is on the right side of your body, lying on the left side also helps keep the uterus off that large organ."

I know not many of us are pregnant right now (but Jess is!)

I had heard that it's easier on the heart also to lie on the left ... but I'd have to continue searching on Google or something and don't have time. This is just what I found when including "pregnant" in my search question.

yeah, I get em at night ... actually, I couldn't tell you if it was pvcs or just plain ol tachycardia, but it's really uncomfortable. Last night I tried to go to sleep about 11; I don't think I fell all the way asleep (I'm out of ambien, can you imagine?) but at midnight I suddenly became conscious of the time and that my husband hadn't come up to bed yet and my heart rate suddenly went through the roof. It was really scarey at first ... but I understood what was going on, so I just took a quarter of a xanax and about 15 minutes later it kicked in and I was asleep.

I think you were going to talk to your doctor about that option JLB, right? I hope you pursue it...

best,

m

THAT'S FANTASTIC!

GREAT WORK, LINDA!!!!

Hi, Corina; thanks for asking! I'm doing better in one way and worse in another... Thankfully, the shooting pains and migraine-ish headache are gone, and I'm much less exhausted. (So that funky episode is over.) But I fear I might be coming down with a cold! I have that feeling in my throat and sinuses ... I've been gargling salt water and I'm about to start gulping vitamins. Ugh! It's a beautiful day to enjoy my garden too, so I'll head out. By the way, you and Emily are cracking me up! This is an expression my grandmother used to use when talking to my brother ... at dinnertime ... when everyone had finished eating and he was still asking for more.

best,

merrill