dmaejean

Hi All,

I am having such a time with trying to get meds regulated and doses where I can feel halfway decent. Besides extra salt and fluids, are there any dietary changes or restrictions that have helped any of you with the potsy symptoms? I saw where several of you are taking licorace root. What is that for? Thanks for all your help, I an kind of new at this. Just dx in Dec. Thanks,

Donna

Hi Everyone, I love this forum. You all are so informative. Ijust had to move in with my daughter because I have been turned down for SSDI twice and am now waiting for a hearing. I hope I am in the top one third too, but I went to a new cardio last week who is familiar with autonomic dysfunction and she said that in her 28 years of practice, she doesn't know of anyone who completely recovered. Encouraging, huh? Anyway, we are experimenting with meds. She increased Midodrine to 5mg, and I've felt worse since. Does anyone have any long term experience with Midodrine? Thanks

Donna

I don't know whether I am asking this in the wrong place or not. How to I put a description of my symptoms, meds etc. at the bottom of my questions, etc. and does it automatically come up everytime I enter a comment or question?

Thanks, Donna

Thanks, my sister gave me a pilates dvd. I think I could increase my endurance if I could do it laying down. I just can't do it on the treadmill, I get too symptomatic.

Hi everyone and Happy Easter,

I need some advice. I am having a real problem keeping my weight under control. When I got sick a year ago, I lost 35 pounds, couldn't eat, etc. Now a year later, between the meds and eating salt and feeling to bad to exercise, I feel like I am fat and flabby. I have gained the weight back and then some. I don't eat that much, once or twice a day,if that, but I get salt with sunflower and pumpkin seeds. I am afraid to go walking alone and I don't last on the treadmill or stationary bike for more than one or two minutes. HELP!!!!

My brain is the same as it was when I was going to the gym everyday, walking a 15 minute mile, biking and swimming and running around a level one trauma center, nursing four to five nights a week, twelve hours at a time.

It messes with your self image and I don't want to get depressed over this. Does anyone have any suggestions?

Thanks, I love all of you!

Donna

I haven't laughed this hard in a long time. I think we all needed a good laugh. You all are hilarious!! Sophia, you are a surfing queen. The article about the guy who could suck in gallons of air or water into his bottom and then play music.....the highest paid entertainer in his country.......and the underwear filter. My head is hurting and my stomach is hurting from laughing so hard at all of you.

THANKS TO YOU ALL!!!! I needed to laugh;

Donna

If I push myself, I am usually in bed for 2-3 days. My sister tries to protect me from crashing and doesnt like me to do too much. But sometimes I pay for doing nothing like you all said, so I would rather live and crash than not live and crash anyway.

Donna

Hi everyone,

I had a heart cath last May and the cardio said that I have the heart of a 28 yr old. I'm 57. Not one dot of blockage. He said I would live forever, I might feel like crap forever, but......

I am also on Toprol XL, 50mg once a day and I am taking Midodrine, 2.5, three times a day. My blood pressure is normally around 108/68, much lower when I get up, of course.

Anyway, my dad died of cardiomyopathy and I was worried about the meds hurting my heart and my cardio said that if you already have a bad heart, it could, but not with a healthy heart.

My resting hr is in the sixties, if I forget Toprol for one night it is around 120. Hope that helps.

Donna

Is insomnia related to POTS? I have alot of trouble sleeping and my doctor has tried me on all of the new sleeping pills, including Ambien, 5 and 10 and they all work the opposite on me. I am awake all night. Go figure So what else is new. Something is not working. DUH!!!! I have heard of several people having hangovers from Ambien. 5mg will probably be alot better for you. Donna

Hi Lisa, So sorry you have had such a hard time. From my experience, you can't always tell what is going to make you crash for a couple of days. Sometimes nothing more than fixing something to eat, or driving to the store will set you back for two to three days. To me, it is worth it. I try not to be stupid, but I would rather live and pay for it later, than not live at all. Wallpaper is a little extreme though, Good luck with ssd, I am also sturggling with that, denied the first time, but I also have wonderful doc's who will do anything to help me get help. Good luck and God Bless. This forum is wonderful, isn't it? Donna

Hello Ellen, I'm glad you posted. It is life changing, isn't it? I'm happy to hear of your high level of functioning.

I, too, suffer miserably from brain fog, and I know what you mean about it interfering with thinking on your feet. I said at my doctor's appointment, last week, while giving my history, "If you want to get any sense out of me, I'd have to be laying down!"

My sister says, "Stand her up and she doesn't even know her name." My kids say if you want mom to agree to something, stand her up. Ha! Donna

Thank you so much for all of your encouraging words. I love the "flat tire". The older quilts get, the more precious they are. Thanks again, Donna

Thanks Jacquie, this forum is so encouraging. I feel like I made a whole room of new friends, who understand why I am so limited. Thank you so much, Donna

Hey dizzy,

Thank you so much for the encouragement. I will have to send you pictures of the quilts I'm working on. One is batman and two princesses. I can't believe they told you that you were no longer disabled. HELLO!!!!!!!!!!!!!, is right. Thanks for your prayers. My kids are actually doing great considering what they have been through. Thanks again. Look forward to talking more. Donna

Thanks so much Sophia. I will look into it. Donna

Hi Everybody,

My name is Donna. I've been reading this forum for months and have really been encouraged by everyone but have never posted. I am new at all of this potsy stuff. I had a laproscopic cholesystectomy (gall bladder surgery) last March, had problems with SOB and low sats, and was hospitalized twice in the next two months with every test known to man. To make a long story short, I was dx with POTS by my cardio and internist around Thanksgiving. I was put on Toprol XL, Zoloft, and Midodrine and I am just now able to drive to the store etc. I still can't drive three hours to the Mississippi Gulf coast to see my children.

I feel like most of you do on most days. CRAPPY!! I have some good days but more bad than good. I am a quilter and I am trying to make quilts for my grandchildren as one of my daughters lost everything in Katrina and she has four children and bedclothes are expensive to say the least. I applied for social security disability insurance. I have worked all my life and have paid in the max to ss. I got a letter today saying that I was turned down because my condition is not severe enough to be disabled. I am an emergency room nurse, and I can't take care of patients laying down, which I have to do most of the time. I can't even sit in church, I sit in the way back with my feet up. Can't even sing half the time because I get out of breath. They said that I have sixty days to appeal, but I am new at all this. They said that because of my age, I was not severe enough to be disabled. I am 57 years old. What do they want me to do? Go back to college and graduate when it is time to retire? Sorry, y'all, I am just very frustrated right now. Do y'all have experience with the social security administration. I am just frustrated and depressed right now. I would like nothing more than to go back to work. I love my job and love being a nurse and taking care of people. Don't they understand that this is no fun way to live. Oh well, any advice will be appreciated. Thanks, Donna

I feel the same way about all of you. I have been reading this forum for months and just replied today. My family has been wonderful. I live with my sister and her family and she has taken care of me since March. I had a simple lap gallbladder surgery and have had severe problems since which turned into POTS and CFS. I try to go to church as often as I can and my priest told me that if I needed to lay on the floor, he didn't care if I could get there, so I usually sit in the back of the church in a room where I can put my feet up on a pew and still listen to the service. My family has been great too, but it has been wonderful having all of you who feel the same as I do. I sound great on the phone and look like a feel great alot of the time, unless I am puffy and my face is flushed, but that is no indication of how I feel on the inside. My insides are usually crying to lay down. Anyway, thanks to all of you for being there. Donna

Hi everyone, it is hard dealing with our illness(es). I find that family is the least understanding. I always have my aunt who's asking me when I am going to get a job. Obviously if I could work I would. Most of the time I just don't say anything. Why bother? I don't feel like defending myself since that takes up soo much evergy and I don't have a whole lot of it. I have one good friend who asks how I am etc. So I am lucky to have her. Although she doesnt' understand alot of things about POTS, etc. I am still glad that I have someone.

Anyhow, I think it is good that wee have each other here on this board. I come here and post because I know that there are ppl who actually "get" what I am going through and know how very real it is. Thanks for being here guys!

Jacquie

Hi, I get SOB and wiped out after a shower. The combination of the standing and hot water makes me worse. The standing drops my bp and the hot water dilates my blood vessells. Sometimes I have to lay down for an hour or more to recoup. Tonight I have church and I usually take cool baths, which is torture in the winter, but I don't wipe out as easily. I still have to give myself one to two hours to recoup before being able to go to church or anywhere. Hope that helps. I don't have much experience with florinef. I am on beta blockers now and in feb. my cardiologist will start me on florinef. Good luck. Donna

Hi, I just had a few questions...

My first question: Does anyone else get SOB after a shower??? Anyone know the cause(s) is/are?

My second question: Does it matter what time I take the Florinef? Is it okay to take it in the afternoon? I know the morning is prob the best but I went to bed after I got home this am and I didn't want to take it too late in the day, because I didn't know if it would make my bp too high.

Thanks again for all the info given, I really don't know what I would do without you all!

Jacquie