Wendy

Well, I live in Houston, Texas, so I guess I'm another Hot and POTS combo. At least we have air conditioning!! Wendy

Interesting news! I saw my new gastroenterologist, and he seems both knowledgeable and helpful. He took me off the OTC stuff that my highrisk OB/GYN had me trying (colace, prune juice, enemas, fiber of any kind), and put me on an upper intestine motility drug (metoclopramide) and on "Miralax", supposedly a form of "Go-Lytely" that won't be absorbed by the baby. We'll find out the results in a few days, but hopefully I'll have a bowel movement that doesn't include hyperventilating. In addition, he said that I too, like so many others I've been reading about on the forum lately, have CVS. I'd never have thought of that since I didn't have migraines before pregnancy, so thanks to all of you who have posted on it, it is good info. The motility drug, my prevacid, and the zofran are all being used to help empty my stomach in a timely manner and control both the nausea and the excess acid. Seems like a LOT of meds to be taking while pregnant, but at least I know my OB and GI doc are talking to one another about it. I'll see the new cardiologist next Tuesday, so hopefully we can get my BBs straightened out then. Katherine, I'm 36. I never tried having kids before because I was an "all work no fun" kinda girl in my 20s. Then I got POTS when I was 29, and figured I just couldn't have kids. It wasn't until about two years ago that I started regretting that decision and decided to risk it. Amy, Thank you for your reply. I will read up on preclampsia just so I know what to be prepared for if it does happen. Wendy

Corina, Sorry for the bad experience, but kudos to your hubby for sticking up for you! It is so nice to have someone who can speak for you when you can't defend yourself. I admire the way you handled it. And I think it was the right thing to do. You don't need to waste your mental energy fretting about it either. I honestly believe that when a Dr who has a brilliant career (in his or her own mind) comes across something complicated, sometimes they just aren't up to the challenge, since they've never been challenged before. BTW, I'd ask your PCP to exclude that doc's report from your record, if possible. No need to get that passed on to the next one. That happened to me and every subsequent doctor I went to see made a point of commenting that I didn't "seem crazy". Cheers, Wendy

Boy I wish I had an answer to this. I gained 60 lbs after being diagnosed with POTS despite excersizing regularly. I just can't do enough cardio to keep weight off, but was able to do significant amt of muscle strengthening and toning, which only added more weight. Diet did not help me at all. My only choice is starvation, and I'm not really willing to do that, so I choose being overweight. Let me know if you do find anything. Wendy

Hey Dayna, Are you sure you didn't borrow my MRI results? They sounded remarkably familiar... All the neurologist found on me also was one tiny pinprick spot. Weird. I think Jesse is right on with the BP/headache theory. I recently started experiencing BP changes, and now have headaches that seem to get better when I eat salt. The only other thing I can do is not move a muscle, since movement seems to aggravate them. Pain meds do not work at all for me. Wendy

I can't say I've had my periods stopped, but I can verify that, for me, my symptoms get MUCH worse when I do have a period. So there is probably something to the hormone idea.

Merrill, Thank you for your welcome. Sorry for being so vague, it's just alot of symptoms, and I tend to ramble. Apologies in advance. Before pregnancy my pulse was around 60 bpm resting, 90 ish bpm standing - on Zebeta (5 mg 2x a day), 140+ bpm - when I wasn't taking Zebeta. BP averaged at 105/65 with little to no variation with postural changes. Starting at week 7 of pregnancy, I had uncontrolled vomiting and colonic inertia, I couldn't eat and ended up losing 31 lbs by week 13. My tachycardia worsened because of the nausea and vomiting, and really worsened after my doctor took me off beta blockers for the remainder of the first trimester. Basically, I could not move much at all. I ate ice constantly to try to keep hydrated, because I couldn't keep down electrolyte based drinks. I also had migranes, but I'm assuming that had nothing to do with POTS since I never had one before being pregnant. Second trimester nausea and vomiting have improved as expected. Main complaints include continued colonic inertia, and POTS issues (as high as 140 bpm again) including : lightheadedness/loss of orientation with postural change, dehydration, muscle spasms pain, and weakening (I've had this all through my 7 year stint with POTS, mostly controlled by the Zebeta before pregnancy, worsening recently when I came off the beta blockers). I sometimes pass out trying to have a bowel movement, and frequently have to stop trying althogether because I'm hyperventilating. I can barely walk from my bed room to my kitchen without having to lie down to recover, which was why my doctor wanted to retry beta blockers to give me some quality of life again. When taking the Toprol (25mg 1xday), I experienced painful vascular headaches, vascillations in BP when standing, but my pulse evened out for the most part. I also started having blackouts (loss of orientation and then consciousness); and collapsing (no loss of consciousness, my legs just collapsed). While collapsing I'd break out in a sweat, hyperventilate, lose my sight in one or both eyes and lose my hearing for up to an hour. When I caught my breath I'd feel the blood rushing up my neck into my head and pounding really hard. I recently switched cardiologists because the one I was seeing seemed pretty darn lost when the Toprol didn't work (I'm new to my city and in process of finding and educating new doctors). In the meantime, my OB has given me the go ahead to restart Zebeta, so I have at a VERY LOW dose (2.5 mg). I'll see a new cardiologist next week, and ask them about the dosing and safety Non-pharmecutical I've tried a variety of things to help with the lack of bowel movements, which seems to have some success. I wear support hose, and do resistance leg excersizes in bed. I can sit up for a few hours each day, and when I feel a vascular headache coming on I eat salt and that does help sometimes. I usually drink gatorade mixed with water and benefiber, but when I get backed up I can only drink water because I get nauseous. I'm really looking for general advice: what to look out for, what questions should I be asking my doctors, that sort of thing. I read some of the other pregnancy related posts and appreciated the warning about hypertension (I would never have thought that possible since my BP is so low), and the info on epidural and c-section vs vaginal delivery. I'd also like to know if anyone has successfully taken beta blockers during pregnancy. If so, which ones? If not, is it because beta blockers are a bad idea? Has anyone had the kind of bad reaction that I had? Do other drugs have better effects for anyone? I know we are all different with our POTS, but I'd at least like some info to be able to suggest to my docs. I know this is an essay and I apologize once again. This has been anything but an easy pregnancy for me, and I was kind of expecting it to get a little easier.

Howdy ya'll. I'm brand new to this forum. I've had POTS for 7 yrs, and have been doing really well with just low dose beta blockers (Zebeta). In Feb I became pregnant for the first time, and have not had a very easy time of it since. Now I'm well past the first trimester, and trying to get back on beta blockers, and they are giving me bad vascular headaches. Two questions: Can any one point me to information on beta blocker use in pregnancy? I tried Toprol, and that was a disaster (vascular headaches, fainting spells). I'm back on an extremely reduced dose of Zebeta, but there are no clinical trials on its use during pregnancy, so I don't even know if it is safe for the baby. Anyone have advice on what to expect in second and third trimester for a person with POTS? I've been kinda in the dark because I haven't been well enough to surf the net for info until very recently. I appreciate your responses in advance. Cheers, Wendy