preacherswife

When I went on Metoprolol, the fatigue dramatically improved! I still have bad days, but not NEARLY like before.

I have an AWESOME doctor if you're willing to drive to Bowling Green, KY. He's an autonomic specialist, and he has completely changed my life! He has a tilt table and all the other equipment in his office. Send me a message if you want to know more.

I don't have any experience with disability and POTS, but I wanted to tell you the experience that I DO have. It seems that they normally just turn everybody down the first time to see if you really want it or not. Maybe it weeds out the fakers; I don't know. Anyway, my daddy went blind two years before he died at age 47 from diabetes complications. He was a truck driver. He applied for disability and was turned down... a BLIND TRUCK DRIVER! Do you WANT a blind truck driver to work? Uhhh.... Everyone I have ever known who has applied for disability was turned down the first time.

Yep. That's it.

Have you decided what you're going to do? I've been thinking about you.

I just wanted to say that I didn't go to Mayo for POTS. I probably wouldn't have gotten in for that anyway. I have a mass inside my spinal cord that we thought might be a spinal cord tumor. Since they don't see that many of those, they got me in in under three weeks. It ended up being something called Transverse Myelitis, and my case isn't that bad. (Thank God!) But while I was there, I was told by my neuro that I was getting the exact right treatment for my POTS, and he wouldn't change a thing.

I have a hard time shopping when the racks are tall, too. (Doesn't help that I'm only 5'2".) POTS patients usually have a hard time with the whole arms-up thing. I have problems with hair drying, hanging clothes on the clothesline, putting dishes in the cabinets, hanging curtains, painting, etc.

Makes complete and total sense to me.

I have hemiplegic migraines. They are NO FUN! My whole left side goes numb and gets completely useless, and that includes the vision in my left eye. I haven't had one in over a year, however, since I started taking the Metoprolol.

Edited to add: I don't take Topomax or Imitrex or any of the other migraine meds since they are contraindicated for hemiplegic migraines.

How long had you been working there? Did they specifically say it was because you fainted?

Effexor gave me HORRIBLE headaches, so I'm sure it could cause chest pains too. We backed off the dose, but the smaller dose didn't help my symptoms. Increasing the dose brought back the headaches, so I changed meds. I hope you feel better and find something that helps.

(I changed from Effexor to Lexapro with GREAT results.)

I have often thought of having a predisposition too.... I was always having really bad motion sickness and nausea as a kid and throughout life. I always felt as if there was something wrong with me, even when I was really young. It was like I never quite felt well like all the other kids did. I've never fainted, so that's not my POTS issue, but I get really nauseated, weak, and lightheaded. You might be on to something there...

Thankfully, I'm not a fainter. I've never actually fainted, so I can still do the bath thing. (Whew!)

I take Metoprolol. My doctor did his fellowship in Autonomic Disorders through Harvard (I like to throw that out there) and he says that's the beta-blocker that usually works the best for POTS patients. My bp actually increased after I started taking the Metoprolol and got my hr under control. Before the meds, I could be walking around with 190-200 hr and a bp of 90-40 feeling HORRIBLE. Afterward, my hr usually doesn't go over 90 without exertion, and my bp stays at around 100/70.

I remember how hard it was waiting for my appointment offer from Mayo. I'm sorry you had to go through that and then get turned down.

I don't know if you're willing to go to Tennessee, but if you were willing to go to Minnesota, I'd guess you might be. There is an Autonomic Disorders clinic at Vanderbilt in Nashville. I've heard great things about them. Maybe you could try there. Good luck!!!

Am I the only imperfect dysautonomia patient? Do y'all do stuff you're not supposed to do too? Here are my confessions...

1) Sometimes I forget my evening dose of Metoprolol.

2) I rarely get ALL the water I'm supposed to take in.

3) My thermostat is not set on 70 degrees because I would freeze to death if it were. (Although my husband would probably shout to Glory, as he says I smother him to death with the thermostat on 75 -- or higher if I can get away with it!)

4) Here's the biggie... I LOVE a HOT bath. (I know! It's so bad! And yeah, I feel worse when it's over, but while I'm soaking, it's heaven!)

I have an excuse for #1 and #2 though... I have two little boys, 2 years old and 8 months old. It's hard to remember meds and drink water all day while running after them. But I don't have an excuse for the other two. Shame on me!

Okay, I can't be the only one... Can I?

I don't have any words of wisdom, as I'm the first in my family to have any sort of autonomic disorder and, hopefully, the last. I pray that my boys inherit their daddy's health! I just wanted to say that I'm sorry that you're having to go through this. I hope your daughter does, in fact, grow out of it as best she can. *hugs*

Oh, about the vacuuming... I just bought this thing called a Shark. You can get it at Wal-Mart. It's a cross between a vacuum and a carpet sweeper. It's really light and pretty quiet, so it doesn't make me sick, and although it won't do a deep cleaning by any means, it at least makes the floor LOOK clean. (both carpeted and not) It was worth the $29.88 it cost. Just thought I'd throw that out there.

Dari,

How are things going? I'm new here, so I didn't see your post when you first wrote it.

My husband is a pastor, so I'm a pastor's wife with an invisible illness. They see me taking care of my kids and filling in with the piano playing, singing in the choir, leading the drama team, pitching in at whatever because anything that needs doing that nobody else wants to do gets handed to the pastor's wife, and they think there's nothing wrong with me. Like you, I take meds to be able to function. In addition, I'm 27 years old, so they think there can't POSSIBLY be anything "really" wrong with me since I'm so young. I don't know where I'm going with all this other than, I completely understand what it means to have POTS in the fishbowl.

I so wish you were close to me. I have the absolute best doctors in the world, and I'd share!!!

I hope you get through to this doctor or get one who will listen to you!!!

The noise of the vacuum gets to me, as does noise from a hairdryer, electric can opener, etc. I don't know if that's related in any way to my POTS though. It may just be a weird quirk.

I have a hard time with the bathtub too. (bending over) Not just cleaning it, but giving my kids baths.... I end up short of breath and with my heart rate through the roof. (STUPID POTS!)

Does anybody else have trouble drying their hair? Anything with my arms up is hard. (Hair drying, hanging out clothes...)

How did you cope with your second pregnancy and small child simultaneously??

I got pregnant with my second the day after my first turned a year old. Thankfully he was still little enough to spend some time in the playpen watching movies. It's not my ideal form of parenting, but you do what you have to do. Also, he still took two really good naps during the day, and I'd sleep when he slept. Luckily my mother-in-law lived right next door and could take care of him on her days off while I went to the hospital to get rehydrated. It wasn't easy at all!

Welcome to the forum! It's so exciting meeting new people and all these new ideas.

When you mentioned Hyperemesis Gravidarum, I found it interesting as I had this with the child I miscarried before I had POTS. I never put the connection together, but could be one. However, my sister who does not have POTS or any type of dysautonomia, all of her 8 children she had severe Hyperemesis Gravidarum. It seemed to be worse for her when she was pregnant with girls but it was pretty bad with the boys too from my view. She's still thinking of having more kids and I have no idea how she continues to tolerate being that sick for all those months at a time. I know she loves kids so I guess she must rationalize it in knowing that the outcome outweighs the many months of pure nightmare!

- Tammy

I'm glad for her sake that she has made it through all eight pregnancies! HG is ROUGH! My health has been significantly decreased after each pregnancy, to the point that all my doctors are just saying, "Please, please don't get pregnant again." I am not quite sure I'd survive another pregnancy, to tell you the truth. (So I'm a little jealous of your sister, as my husband and I always wanted more children than two.)

Has your sister heard of www.hyperemesis.org? There is tons of good info about HG there, and there's a really active forum that helps women through it.

I had horribly heavy periods, so I felt just awful all around my period. I now have a Mirena IUCD, so I don't have periods anymore. It has made a huge difference just in that I don't have to dread my period.

I had POTS before I got pregnant, but I wasn't diagnosed until after my first son was born. As far as an HG/POTS connection, when I told my neurologist (an autonomic disorders specialist) that I had HG during my pregnancy (before baby #2), he said, "Of course you did. You have POTS," like it was quite common. There are a few girls on the hyperemesis forum that have POTS, but I'm the "old one" of the bunch because I've had it longest. There's no confirmed link, but it seems pretty common to have both.

My name is Valerie. I'm 27 and was diagnosed with POTS in March of 2006, but I know I had it long before my diagnosis. I have taken Metoprolol since my diagnosis (with a brief break to have a baby). The beta-blocker has significantly improved my quality of life.

I decided to register with the forum because yet another person asked me today, "POTS? What? Huh?" I just thought it would be nice to mention it to some people who know what I'm talking about.

In addition, if any of you ladies have ever heard of or had a condition called Hyperemesis Gravidarum, I had that while I was pregnant with both of my boys. I love to talk to anyone who knows anything about HG.

Thanks for letting me come play!