halmad85

Sorry you had to deal with that doctor. Some people can be horrible.

anyone?

I'm glad that you're feeling better. I know I couldn't go to the gym, for sure. I really do need to start doing some kind of activity though. I want to start with stretching. I think it might help with all this joint pain. Now if I can just find the energy and motivation. Good luck to you and hope you have lots more better days to come.

My doctor switched my med again, this time to sectral. Has anyone had any sucess with this drug. I'm started to get a little desperate for something to help. So far, I've been on: Toprol XL Cardizem Florinef Inderal Verapamil Nothing has helped my POTS and some have had bad side effects. I think if this one fails, I'm going to have to apply for dissability. I can't keep working and feeling the way I do everyday. It so hard on me. Anyone have any experience with this med?

Well, I'm home. I'm still very sick from the anesthesia at the point. I became very nauseated while in the hospital, which was a problem because everyone thought with the kind of meds I recieved that I shouldn't have nausea. So, my Uro didn't order anything for me. They were going to call him but my husband had to be at school at 230 and we were already behind. So, I just asked them to call something for me into my pharmacy. I got home and threw up. I'm still nauseated and can barely walk. My husband is leaving scchool around this time so when he gets home he'll pick up my meds. I can't really seem to stand up without feeling very dizzy and nauseated. Hopefully tomorrow will be better. I'm barely even talking in fluids right now because they make me sick. I think my pulse did pretty well. Thanks everyone for the support.

Thanks alot everyone for your help. I feel a little less worried now. I will definetly talk to the anesthesiologist about my condition. I guess that's all I can do is just let them know. I'm starting to have some concern about my bp alot today. My Cardio just increased my Verapamil to 80mg BID, and today my bp was 76/62. I tryed to call the doctor on call to ask advice about my procedure and how I should take my pills, but he didn't call me back! I hate to think of how my bp would have reacted if I wasn't taking Florinef. Anyway, thanks for the advice and support. I'm scheduled to be there at 7am, so, I'll let you know tomorrow how it went.

Oh wow. That's a relief. Thank you!

Thanks Laila for replying. I'm sure your right. I probably am thinking it will be worse than it really will be. I'm just hoping I don't get some major POTsy crash because I still have to work. I'm only taking off the day of, and the day after. I would have been fine with that before, I just hope I'll be fine now. So, I don't have to worry about what is happening with my hr and bp while I'm out? Thanks.

I don't know either. I'll have to ask him to explain it to me again. Actually, this time I'll have him write it down! Then, I'll let you know what it was. Thanks!

Hey everyone! Another question for you (and I want to say thatnks ahead of time because I learn sooo much from you) I am having a hydrodistension done this Monday. I know already to ask for extra fluids. What else do I need to tell them about my condition? What is the worst that can happen? Passing out (I never have yet)? Is it a risk that my pulse will be out of control while I'm out? Is the worst of my risk after I wake up? I'm just not even sure what could happen. (The last time I had this done I didn't have POTS, and I was very weak and nauseated then..so not sure what to expect now). I had an Endoscopy procedure done and I did fine. Kinda dizzy afterwards, but not too bad. But I'm more concerned this time because it's general anethesia. Any advice for my procedure will be greatly appreciated.

Thanks for the reply. I don't think that was it. It's something that everyone has, I think. Geesh, I might as well give up. I hate that. As soon as I walk out of the doctor's office, I forget what he told me. My memory ***** these days.

my temp can be off too, but not quite to that extent. Usually, in the am it's about 96-97.0. But every evening I get flushed, and my temp is 99.0-101.5

I get this all the time as well. It's really bad too because I work with a med cart, and I'm always having to bend down to the bottom and stand. I get so dizzy.

I always have nausea when I wake up too. I can't eat for a while, which of course causes more symptoms. I have no idea why though.

I was asking my Cardio about the difference between ttt results of POTS and IST, and he gets into telling me about some response in the neck that effects your BP and HR. I wish I could remember what he told me. He said if I was interested I could do some research on the internet, and I'd like to so that I understand...except I just can't remember what it's called. He told me there was one case he had, where he had to send a girl to another state to have the removed because nothing else helped. Does anyone know what I'm talking about here? Something in the neck that effects POTS.

Before I started Florinef, it usually ran about 90/40. Now, it's usually normal, like 114/70. Once at the doc's office it was up to 130/90 (highest it's ever been for me). The only time it usually goes very low now is after eating.

Sorry you had to have some added stress today. Some people...! Well, at least they finally did get you your meds. Hope you day has gotten better by now. Hugs

Hi and welcome. I'm sorry that you have to be here, but glad you found us. I know the diagnosis stage is very difficult, so I hope you find the answers you need very soon. We are here for any questions you have. These people here are very knowledgable and greatly supportive. Hope to see you around the boards!

Hi and Welcome! You've found the right place for support. I've learned so much about my illness here. Way more than I can ever learn from the doctors. Wishing you better days ahead.

My symptoms have only been going since October 2005, and so far I'm still working. But each day I struggle and suffer. My husband is going to school right now to be able to make more money so that I can cut back on my hours. Hopefully my symptoms will not progress to disability, but at this point I wouldn't be suprised if it came to that. Wishing you better days ahead

You and your family have my prayers.

Thanks for the replies. One reason I was confused about this is because, as Carolyn mentioned...my resting heartrate is usually normal. The only time my resting heartrate might be affected, is if I've been on my feet for a long time. Then I have to sit for a while before it will calm down. Although, I do sometimes have symptoms while resting, such as palpitations, chest pain, or fatigue, but my heartrate will be good. Does anyone know what a TTT would show on someone with IST? I keep trying to look into it but I'm not getting very far. I think my Cardio doesn't think I have POTS because he says it is rare. I don't think he has any other POTS patients. So, I think maybe he's hesitant to that diagnosis. Who knows? I do want to stick with him though as he does take very good care of me. He always takes my complaints seriously and is always available when I need him. He's my favorite doctor (and as many of us do...I have lots of doctors). He hasn't changed my diagnosis. He just doesn't agree with it, it seems. I guess in the long run it doesn't really matter what you call it, just as long as someone can make it better for me. It would be a bonus though to know for sure. My Cardio did warn me about that ablation. My diagnosing Cardio set me up to see another EP doctor. My Cardio told me if he suggests ablation to me, he wants me to walk out right out the door! I did start having all this joint pain when my POTS symptoms began. I don't recall seeing anything about joint pain being a symptoms of IST. I'm just not sure what to think anymore.

I went to my regular Cardio today for the first time after my diagnoses of POTS. The doctor who diagnosed me doesn't know how to help me. I trust my regular Cardio very much as he has always been very good to me. But, today he told me he's not convinced that I have POTS. He believes my symptoms sound more like inappropriate sinus tachycardia. Now I'm not sure what to think. I did have the tilt table and my pulse went from 65 to 145 within the first minute, then went back down until we did the drug and the same happened, up to 155. As far as I can see, the tilt table is supposed to differentiate between the two. So, why does he think this now? What's the difference? How do I know what's going on with me? Any suggestions?

Wow! Congrats! That's very special. My little brother is going to blow our family away too. He wants to be a pilot. Even in highschool he's been in the air flying (with his instructor) for some of the smaller planes. He's amazing and so is your little brother.

Thanks for the support everyone. You've convinced me to be seen. I hated the idea of going back to my doctor. I have a new complaint like every month. I don't want him to think I'm nuts. Although he's never treated me that way. I do realize of course that a stoke isn't a complete impossiblity. It just seems unlikely. But, hey...I always have something unlikely happening to me. So, why not one more? I haven't had anymore of those episodes today. Though I am having some spasming type pains in that right side of my head. But they're really quick.. just coming and going. I hate always feeling sick because I worry now that something serious could be happening and I'll ignore it because I always have symptoms. I have chest pains all the time and I just wait for them to go away to know it's not an MI. You know what I mean? Life with POTS!