StacyRN

Sorry I'm so late! But I'm SO VERY THANKFUL for - all the help and strength I've received from all of you on the forum! - the new dvd to help POTS awareness, - my mom and friends who have helped me so much, - my three beautiful adult children! - a diagnosis so I can stop thinking I'm going crazy, - hope for better days ahead, - strength and love from God! To a better year for all of us! Stacy

Oh,sorry, found it! Normal normal! Thanks, I'm foggy lately...

"Normal" normal? Or POTS normal?

Jana, correct me if I'm wrong, but I think Alicia's systolic bp went DOWN by ten, and her diastolic went UP about ten. This is what happens to me, too. Like from 105/70 to 95/80... this isn't normal, is it?

I know what you mean about the guilt of not working! I've been off work for 2 months now, and have to decide by end of December whether I can do my job or not (RN at children's hospital). I feel like everyone is going to think I'm a wimp, can't handle anything, trying to get out of working, etc. I WISH I could do it! I love my job! When I have some good moments I think maybe I can go back to work, but hours (or minutes!) later, I feel too sick to think about going back... this POTS is so frustrating... It's good to go on the dinet forum and read the posts of others who have the same struggles as I do... it's saving my life! I appreciate you all SOOOO MUCH!!!

Hi Stacey, Just curious, what is an A.S.? Summer Sorry! Associate of Science degree, a 2-year nursing degree.

Thanks, Erik! I wish they would consider Tramadol for this purpose, because it really does help. I'm going to do a little research on it and hopefully my doc will listen... he doesn't know too much about POTS...

Toprol is a beta blocker, brand name for metoprolol. Seems to help me, Dr. Grubb Says its helpful in hyperadrenergic POTS. I haven't seen a specialist yet, but my symptoms Seem to indicate the hyperadrenergic type, like the jittery brake/gas pedal feeling!

Have you thought about becoming a school nurse? They are always in need of them and the great part is you'd work a 7.5 hour day, have all holidays off, and would also have the summer off too. I am a teacher and it although some days are hard, it really is an ideal schedule for someone who needs/has to work and has POTS. I'd LOVE that, except I would need at least a bachelor's degree, and I only have an A.S. May have to go back to school online and finish... Thanks!

Thanks for your replies! Before I was diagnosed and hit the wall a few months ago, I would work three 12.5 hour shifts, and then sleep for about 4 days straight. I had no life. It was all I could do to get through those 3 days... finally I just couldn't do it anymore. Stacy

Hi Flop! Oh yes, most definitely, heat intolerance is part of dysautonomia!!! And if it's warm, and no cool air blowing, I get short of breath, nauseated, and totally GRUMPY! I also sweat so easily, I'm very affected by warm weather. I think it's TERRIBLE the way most doctors treat us, OF COURSE we get upset when they don't understand, and that makes them think we need anti-anxiety meds, anti-depressants, and/or counseling! So we have to act like we aren't upset and then they don't know how serious we are about getting someone to help us... it's a catch-22 situation, isn't it?!? Hugs, Stacy

Thank you for this!!! Stacy

I do shake and stutter when I'm having a bad day, makes it hard to do anything because my hands tremble so badly!

I think I know what you mean... I get chest discomfort too, kind of a tightness. But my heart is fine. Some of it might be related to heartburn, especially if you notice it after eating. The thing that really gets me bad is the restless feeling, like I'm trying to crawl out of my skin, and it makes me want to SCREAM, and prevents me from sleeping... I have to sit up and shake my arms or do push ups to keep from going crazy! Does this sound familiar, or is it not what you are feeling? It's like I have the brake and gas pedal on at the same time, I'm exhausted, but so restless, it's a physical feeling, like my skin almost hurts, and I feel nauseated with it too, I even have to yell out sometimes... sound crazy, or familiar to anyone?!? I have these pain pills, Tramadol, and they're the only thing that I've found that calms this feeling down, but I only have so many left, and I doubt my doctor will refill the prescription, and I'm SO scared of not having something to stop this horrible feeling! It happens in the evening/night mostly, and sometimes I have a low grade fever at the same time.

I have a full-time job as an RN in a children's hospital. I just finished nursing school in May, and have been working up until the end of September, when POTS kicked me hard and I couldn't get out of bed. I've been on medical leave since then, but have to go back to work in mid-December or I will lose my job. I don't know how people do it! I'm not sure what's going to happen to me. My health is so unpredictable day-to-day... and you can't do 12.5 hour shifts like that, so I'm trying to figure out if there's something I can do as an RN where there is more flexibility and I don't have to spend so many hours on my feet in stressful conditions... I seriously don't know what to do, and I'm self-supporting... If ANYONE has any suggestions for me, I would LOVE YOU FOREVER!!!!! Stacy

I started Toprol XL (metoprolol) a couple days ago, and thought I would have trouble because I'd tried propanolol a few years ago and it wiped me out! But I haven't had any trouble on the metoprolol, and I actually think it's helping me... my heart rate goes to the 110s when I stand up instead of the 130s to 150s, and I seem to have a bit more energy. I'm hoping it isn't a coincidence, and that it is really working. My doctor said propanolol has more side effects, but metoprolol is newer and doesn't cause as many problems, maybe you could try that one. So far so good! Let us know how it affects you, but it's definitely worth trying, I was scared to try it too! Let us know... Stacy

Sara, I think you said it all! I've heard the papaya helps too.

I have to add my "amen" to everyone else... you are definitely NOT alone in feeling sick almost ALL the time... I had a really good day today, because I tried a Provigil and I actually had some energy and drive to go visit some friends! That is NOT how my days have been going normally... like potsgirl, if I am up much during the day it has to be sitting... and even then I feel lightheaded, tired, nauseated, etc. This POTS diagnosis is new to me, and I had just finished 18 months of intense nursing school in May, then started a new job as an RN in June. In September I started fainting, and couldn't "push" myself any more like I'd been doing, because all the doctors said there was nothing wrong with me, so I just pushed through the days because I thought I "should" be fine, but then I just got floored with symptoms and couldn't function at all... and it's not getting better, which is scaring me alot. I haven't been able to work since Sept., and I don't know what I'm going to do. All that schooling, and now I may not be able to function as a nurse... anyway, I do understand the feeling sick all the time, and I just keep hoping to find something that will let me function as well as possible... Are you working? I don't know how anyone can work with this! If anyone does, let us know how!

Thanks all, for the help... actually, the second day I took midodrine the chills were not just chills, they were actually painful, and the wired feeling was horrible, and it didn't help my HR or energy level at all. Might try it again later, but I'm kinda nervous about having a day like that again, to tell the truth. Beta blockers made me feel like I couldn't move, energy level was ZERO, which is why he put me on Verapamil... don't know if it's doing anything or not. Thanks, Lois, for a good laugh about the doctor who didn't know POTS from pans!!! Love it! How about Provigil?! A friend gave me a couple to try, and I took one today, and I have had more energy and drive to do things than I have felt in a couple months! We'll see how I feel tomorrow, but I had no bad effects from it, and haven't felt that good in a long time. HR still high, but didn't seem to feel it as much for some reason... Anyone else know anything about Provigil?

When some of you say you don't tolerate the midodrine, what do you mean by not tolerating it? I am getting some annoying side effects, like chills all over my body that won't stop! Feels like my scalp is crawling, and like my nerves inside are on edge, and I feel like I'm going to scream! Can't relax... Yesterday was the first day I took midodrine and a calcium channel blocker. My hr did go down to 90 while standing up, which was thrilling! But today, it's not working, and my HR is in the 130s and up while standing. I feel really bad today, too, like I'm having POTS symptoms and midodrine symptoms both together, and I kind of want to die... feel like a huge bundle of nerves ready to explode! Anybody else feel like this on midodrine, and does this mean I'm not tolerating it?? Thanks for any input! Hugs to you all!

Oh wow... that sounds awful! I don't get ringing, but when I feel like I'm going to faint I lie down on the floor, and when the blood comes back to my head it sounds like a "whooooooshing" sound in my ears... but no ringing.

Alicia, this is the norm for me too! My diastolic BP goes up by 10, and my systolic goes down by at least 10. Just the body's way of trying to adjust to standing I guess...

My heart rate is in the 70's when I'm lying down, 90's when I'm sitting, and 115-160's when I'm standing up, higher with housework. I notice that when my systolic BP is higher, my HR is lower; and when my BP is lower, my HR goes up alot.

I just started midodrine this morning! I've only had one pill so far. I started Verapamil at the same time. I feel a little funny in the head! Kind of more alert, but my scalp, face, actually whole body is tingling and like I have the chills! Weird, but not something I couldn't live with if it helped me be able to function better with more energy and less blood pooling... we'll see how it goes, let you know more later! Let me know how it goes for you, too!

I'd LOVE to help! Send me directions of what you would like, and I'll get right on it! Need something to keep me busy, and doing something like this would help me to feel like not such a Potsie Lump. sreedrrt@yahoo.com