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Hi I'm new to the web site 22, POT for 7 years


Sarah
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I was diagnose with POTS when I was 15 and have been taking Toprol XL (Lopressor) ProAmatine (Midodrine) and Florinef everyday for the last 7 years...I don't like the idea of being on these meds for the rest of my life and would like and alternative, as i'm sure all of you. But the meds make me feel great and I have no complaints really since I've been on them. I am conserned because I would like to have a baby....but i don't know what to do about the medications. I was also wondering if anyone has interstitial cystis....it is where you feel like you have a bladder infection all the time....but you don't. There is no bacteria, your bladder is inflammed...

When I was 15 I didn't realize my hands shook, kids at school told my mom...I was tested for hypogycemia first. I shook so bad that I had a hard time getting fries into my mouth at lunch and had to use to hands to drink a can of pop. Once I was also clumsy.. Once I started the meds, I'd have spells of palpitations, blackouts...but never passing out...just crawling around on the floor waiting for my vision to return, numbness of lips hands and feet, anxiety, and at times my whole body felt as if it where shaking inside...till this day i don't see my hands shake...but everyone else does...

Is anyone else on these same meds, or have any of these disorders?

And to add the the midodrine discussion....After about a year the itching and crawling of the skin stopped. Even when i forget to take it for a day i still don't experience the sensation.

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Welcome, Sarah! Glad to hear the meds make you feel better. I would check with a high-risk obstetrician regarding the meds. Some doctors will allow you to be on them at a low dose, and some will be against it. Beta blockers do carry a risk of a smaller baby (I think it's an average of 500 g less).

I didn't have POTS during pregnancy or before it, but developed it just a few days after. I was able to breastfeed and take Toprol XL. If I become pregnant again, I have been advised to stop the Toprol only because I had a baby who was low birth weight due to preeclampsia. Because I am at risk for having that again, I could have a small baby again, and couple that with the Toprol effect of a smaller baby and she could be much too small. So the doctor thinks I need to stop the drug.

Amy

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Welcome Sarah! Glad you found us!

I just turned 22 in Sept.! I've had POTS & CFS for a year and a half.

About the meds, I'm thrilled that they've helped you so much! I was on Midodrine and Florinef at first but the midodrine made me even sicker than before and the Florinef stopped having a positive effect after a while (caused really bad headaches, too!), so I discontinued those. Now I'm on Mestinon which really helps me a lot. Amy's suggestion about the high-risk OB sounds good to me regarding meds and pregnancy.

I'm afraid I've never had experience with interstitial cystis -- from the sound of it, I'm very thankful I can say that. :) Sounds dreadful! Some of the other symptoms you mentioned that appeared after you started the meds I've experienced also, but before I hopped on the med merry-go-round! :) Have you spoken to your doctor about them or are they not enough of an issue that you want to try some new meds?

Once again, welcome to the family!

Angela

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Hi Sarah and welcome...

I've had IC for a very long time. Blood in my urine for at least 20 years. I go in occasionally to get my urethra dilated, cripes ooowwwyyy, don't go very often. I find it to be more annoying than anything else. Having to pee all the time and the feeling you're never empty.

However, I had my first actual bladder infection and I've gotta tell you, give me IC anyday!!! :P I know there are meds for IC, but I didn't tolerate them well, because they were mostly anticholinergic. Too difficult with my other symptoms.

As far as pregnancy, That's something you have to pound out with the doctor. See a perinatologist as they know the most about risks. Many ob/gyns will tell you they are perfectly capable of dealing with it, but I say from personal experience as a nurse in an ob/gyn office, they aren't as a rule.

Good luck and again, welcome.....morganocrinski

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hi sarah -

welcome! i was diagnosed at 17 & am now 25 so we're on a similar schedule of sorts:-) it's great that meds have brought you as much relief as they have...i've had similar experiences at times & not at others. i also would love to not be on meds forever but at this point i'm working toward functioning better with them; without my meds i'm bedridden so i'm thankful to have them at all, but have been at points (several years ago) where i have successfully been off them too...i'd love to be back there!

i don't have IC but know that at least several members of the board do so you'll likely get some more responses re: that. you could also do a search as i know it's been mentioned in some previous discussions. the search feature is at the upper right hand part of the screen...

i don't have any first-hand pregnancy experience but as you can see by the responses already people have had many different experiences....re: general symptoms, meds, etc.....there have been quite a few discussions about pregnancy so you also may want to search on that.

again, welcome....we're glad to have you.

:P melissa

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Welcome. I can't comment on the meds but glad that they have helped you. I would agree to look into a high-risk ob-gyn. Call and speak to one or two of them and see if they have ever dealt with pregnancy in women with dysautonomia or more specifially with what you suffer through.

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Hello Sarha your in the right place full of wonderful people that have so much knowledge to share. So I am sure you will get lots of good info. I wish I could lend you information on those meds. But i have not been on those yet. I have been to chicked to take them as of yet. But hope to get the courage up enough to try here soon.

Corina (hopeful-girl)

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You are all so nice and thanks for the info. I too am a RN. I think I've lived with this disorder long before diagnosed because I didn't know anything was wrong with me until I got on the meds and realized what normal was. Like I said, I was at a new school and kids thought it was weird that my hands shook so bad...yet my family nor I ever noticed.

My IC is under control finally. I was in and out of the ER with "UTI's" Once I was passing large blood clots (you get the picture I don't want to be to graffic, it's gross). I was put on Elmiron for about 6 months and they also inject some type of medication into the bladder. Now I just drink a lot of water and say away from carbinated and acidic things. I'm told that it can flare up with pregnancy, but they can inject that med, which doesn't harm the baby and takes away the pain. Those with IC....what have they done for you??? I would go insane if either my POTS or IC wasnt under control.

And that is so awesome to know you can breastfeed with Toprol.

There seems to be so many young people with POTS....they kept trying to reasure me that most young females grow out of it...I knew that wasnt the case...I wish there was more awareness so that more young people could get help sooner ...IC is seen mostly in young people too so I'm told....I really believe it is the high intake of Pop/Soda. That stuff is good, but potent.

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I have been through two pregnancies on Sectral (beta blocker) and had two babies that were on the smaller side. The first (born at 38 weeks) was 6.0 lbs and the second (born at 39 weeks) was 7.0 lbs. They were both very vigorous and healthy but I would definitely use caution with the beta blockers...of course no meds is the best thing if you can do it, but I was not able to despite my many attempts B) I have been taking the BB while breastfeeding with both kids and have had no adverse effects which is wonderful- my pediatrician is great in working with my meds vs. nursing.

I don't know much about IC except that it must be very aggravating!! I am glad to hear you've got it under control.

Good luck and stay well :)

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I tried the drug but didn't tolerate it very well. I had the instillations of DMSO. Did your family and friends steer clear for days? It apparently makes you smell like a garlic factory for about 3 days, but you are the only one that can't smell it... :(:oB):) I didn't feel it helped much.

My IC did NOT get worse with my pregnancies. It stayed about the same. Since I always have frequency, it was no big deal. My bleeding is always microscopic, but always there. The only time I've had gross blood in the urine was with my infection. (the stupid thing is, I asked for a catheter to help the nurses out, because I pee so much and that's what got me into trouble, they didn't want to let me do cath care and waa laa, infection :) ) No more Mrs. nice guy for me!!!!

Anyway, I don't know if it's okay pregnant, as it is obviously systemic enough to make you smell that badly. It oozes out your pores...so I'd be sure and check on that, if it is DMSO....morgan

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Welcome

I'm sorry to hear that you've been dealing with this since you were 15. I hear you on being reliant on all the medications. I remember when I was only reliant on 1 medication, my synthroid and when they put me on a beta blocker I told them I was only taking it for a couple of months because I didn't want to be stuck on meds the rest of my life. Well obviously I'm on many meds and I would never stop taking my beta blocker as my tachycardia gets to bad and then I have near syncopal episodes. We do want we have to do to have a functional life. B)

I know what the tremors are like and sometimes I have them worse on one side vs the other so I have to switch hands to drink.

I'm glad you found us!

steph

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