gwen

the midodrine def makes my scalp itch. I have candidais(sic) which is a yeast imbalance in gut which causes me to have Rosacea on face (among other things). It itches terribly if I have been "bad" and eaten a lot of bread or sugar. Told dermatologist about the connection I made and he said it is one of the triggers. There is a cortisone cream I put on my face when it starts to get red and itchy. There is a hydrocortisone mist spray over the counter from neutrogena that really helps too. I never put the itchy with the pots/nmh,but it makes sense with all the mystery rashes over the years.

I'm so sorry you are having a bad reaction! It would be wonderful if there was just one pill that fit all, all the time, but I think we all have had a situation like you. It is a major frustration with pots. If it's not one thing its another. Big hug and prayers!

if the stuff is green then that is a sign of infection. you'll need an antibiotic for that.:-)

I was on straterra and loved it! It gave me my brain back. Dr took me off when I went on attenolol. Now I'm foggy again. I asked yesterday if I could go back on it and she said I could do both, but that is opposite of what she said when I started atenolol. She wants to wait and see if lowering nadelol will help. I guess I wait another week but this is a really bad time of year of me with taxes, and audits and all that kind of stuff.

I have been feeling lousy for about a week. I have been on Nadolol but when I went to dr. yesterday my HR was very low, so she lowering my dose hoping it helps with low, low energy and foggy. She went to seminar today and the speaker was neuro from Stl Louis Univ. Hosp. and it was on autonomic system. She said we were doing everything he was talking about, but said she bet she was the only one who new about Pots and NMH and could follow the Dr. At least we have someone nearby who we can use as back up. what a relief!! two weeks ago The dr said my bp and HR were best she'f read in 10 years. Up and down, up and down!

I am on celexa but was started on the same dose. I'm not sure if it really helps me since I'm also taking other things. Otherwise my dr is very cautious about starting meds and usually staggers the doses when starting and stopping things. Of course do what you think your body can handle.

Happy Birthday and I hope a happy healthy one for you and your family!:-)

yes and I try to do mind/breathing techniques. Sometimes this helps and sometimes not. I thought it would be under control when the b/p and hr was but it still comes and goes.

welcome to the forum although I'm sorry you had to find it. on the dinet web site you will find a list of meds that have helped some. It seems as though all of us are on a different combo of things. It may take a while to get the right combo for you. I would try to find someone who is knowledgable about this for you and to either rule it in or out for your daughter. the hose don't do me any good. I take midodrine and I don't think I have problems with it and it has really helped. I'm on nadolnal (sic) for the high heart rate. I went to addenol about a month ago and my stats are very good although I really can't say its done any good for the fatigue. good luck and prayers are with you.

this is difficult since it seems to be a vicious circle. The extreme fatigue, fog, I thought would be better with medication for low bp/syncope. now good readings but still extreme fatigue, fog. one of those days were i'm just tired of the whole thing.

hi, yes the lights are horrid. Have you ever seen those huge electric power lines? well iff you stand underneath one at night with a light bulb in your hand it wiill light up. smithsonian mag had a 2 pg pic of fluro lites stuck in the ground under the major line and all are lit. I think the pots make us light / electricity sensitive and even where your home is situated can be of harm. I have read report after report that secondary elec isnt bad for health but Ive done the lite bulb trik and it made a believer out me. My gram used to say to stay away from the elec lines and elec blankets etc and i brushed it off but i don even keep my alarm clock very close to yhe bed because of the extra elec. Dr Weil has touched on this subject. I wish more people realized it could effect you.

I get this on days bp is low. mecklizine over the counter has helped for some reason and increased bp. hm

Ive been on it for two years with no ill effects. I can tell if i forget to take it. One drug I can say works and haven't had bad vibes.good luck:-)

I do premedicate and think its very important. friend of the family ignored his drs advice on this and the autopsy came back it was bacteria from the cleaning that went to his heart. Made a beliver out of me as he didn't have any other health problems.

I am so sorry you had to go thru this, but I'm glad you are feeling better. Where did all this fluid go?Is it possible for you to type up something on your computer with your dx, dr. g phone #, meds and reason for them. that you could make a few copies and carry with you and hand to the drs.? I don't have the problems you do but I've found If I just hand this out to who ever it helps to cut down on the explaining escpeially when your not feeling well. It doesn't work all the time but it helps a little. I went thru the psych thing too and it was the psych who agreed with me it wasn't a mind thing but physical. Maybe now you're home you can get the rest you need. Hopsitals are the worst for rest. I know they have to run on a schedule but our bodies have their own little timetable! 7 am isn't it!! We have to remember we probably know more about POTS then 90% of the drs. and maybe its our job to educate them. I do hope you get some rest and peace and quiet. nothing like your own nest to rest in.:-)

Hi, all sounds familiar! read your website. What part of MO are you from? My son goes to Mizzou and dau is going in fall. my dau had considered Stephens.I feel bad because I don't have the energy to drive an hour and a half, visit and then drive home. Sounds like you had the same drs I had growing up. St. Charles?I'm pretty careful around doorways too on some days. I started an exercise class last year that my friends all told me I should take because I needed the exercise to feel better. Well after several months, I didn't feel better, in fact some days worse. When I tried to explain to owner/trainer the problem I was having she just told me I signed up for a year and there was a contract. Live in small town so didn't make waves. She thought a modified exercise routine would help, but her modified was entirely out of the question. I can't hold my arms over my head. Sit ups? Right. I feel the need to get better quick so I can help earn some money with both of the kids going to be in college in fall. I just don't know what I can do with these syptoms. Ed degree doesn't help. Hang in there. I just always go to bed hoping the next day will be better. :-)

I started in fainting in elementary school. But I don't know of anyone in family who had this problem.

Please don't beat yourself up because of what the dr. did. My father in law smoked from age 14 on. all his older bros did. when in army they gave them 2 cartons of premium cigs a week for comfort!! He tried many things over years and hypnotism helped some and then he just weaned himself off. Now they have the nico derm gum and patches too. Plus I would suggest you try the acupuncture. I stand by it for anumber of things. My grandfather was told to quit or else by his dr in the 60''s. so he would eat a plug of real black licorice. he said something about the taste helped. As a kid anything he did was fabulous to me, so I ate black licorice all the time. Irony that now I eat it (and like it) for increase BP!! Don't have to worry about anybody else in the house eating it either. Ha! We coud all fill a novel with the weird things drs have said or done. I take wellbutrin for depression and for low blood pressure. hm.:-)

I have to agree with the above get more opinions!! If he had to think twice before he came back to talk about it , I 'm not sure, he's too sure. I will be thinking and praying for you. the deadline perplexes me.

it sounds to me like all the good he does is coming full circle to him:-)

you found the right place!:-)

Well, I had a very special Jack russell Terrier, Gracie, for about a year until one day planting petunias she ran after the neighbors car and was hit. She was very protective of me and was my first inside dog. MyPots was really starting and she was always there for me when others were judging me (lazy). We live in the country and for the dog to have run that far down the driveway to the dirt road at the same moment the neighbor who lives 1/2 mile away drives by was very weird. I think greived more for that dog then I have for all of my family over the years. Said I would never get another dog but 18 mo ago got a beagle who was goofy and funny and laid back and was just a happy soul. I let her out one morn about 6 wks ago and you guessed it. The neighbor hit it. Yes they drive like bats out of h-ll! So after moping around and it definitly screwing up my pots (even my dr said "Get another dog".) I decided If I found one ok but it would have to pick me. 3 weeks ago My dd and i went past a place with puppies and nothing really out of the ordinary until this little dog quit playing with the others turned around walked straight over to me stood up on two legs and looked straight into my eyes! Never seen anything like it and no one else there had either. I carried her around for .5 hr until I really couldn't talk myself out of her. My husband said well she's good for nothing, she can't hunt. but my dd told him the dog picked me and it was meant to be. A little old lady dog(papillion)that I swore growing up around old ladies I would NEVER get. My husband even bought her a sweater at xmas. Big softie. I've always felt the dead would be quite ticked at us if we were unhappy over them being gone and I feel Gracie and Sandy sent her to me. Whew! what a long explanation. so incredibly boring! Felt like hackers wouldn't ever know of a little dead dog. Guess I blew that right.:-)

I've been on K+ for about two years. I assumed it was to compliment the increased sodium I take. I don't think I retain either one very well. I don't now if it helps any symptoms particularly but it is an interesting question that I'm going to ask dr on mon at next appt. Mine comes in capsule form and i take it in the morning.

The bad part of not being close by is not being able to bring some food by, do some chores for you or something else that might physically help you both, so I guess you know that our prayers are with you all and positives vibes are going your way. A piece of pie wouldn't hurt though, right? Wish I could send one. peace and rest to you both so you can heal and be well.:-)

I have been on nystatin now for about 18 mo. I can tell after a cold or feeling out of sorts that I need to up the nystatin. My cardi wanted me to discontinue the nystatin for awhile because it can lower blood pressure. I have reluctantly.I have been using cinnamon in capsule form and finding that it is doing a pretty good job. It is also supposed to help with arthritis, but that is not my area. I get it at natural food store, dont' buy the cheap stuff. I would also ask while you are there for them to look up in their herb pdr what might help. Dr. Weil has a web site with a library of past questions you could also try. I used to take garlic and gingko until one day it dawned on me they were blood thinners. the opposite of what I needed even though they are both recommended often for fatigue, and over all well being. You might want to check on that. I love garlic and could eat it everyday, but I given up the capsules for now. hope this helps!:-)