faithinspires

so glad u got these checked out and removed! wishing you well! Prayers for negative biopsy results! Take Care!

sorry u r ill with the flu, i know thats hard with this condition, i hope u r feeling better soon!

sorry to hear about your doctor ordeal and understanding the frustration of it!

louis, u r in my thoughts and prayers! my aunt is a 2 time survivor of this. I pray for your complete and full recovery!

not responding to treatment well at this time. daughter had improved tremendously, but is struggling a bit again.

congratulations

understanding both sides. since my daughter and i both have this condition. but we also both share a tendency in the frustration of let me do this myself or try to. living with this if there is anything that i can do, i want to do it. and sometimes i get frustrated trying to do what i used to do but can not now. other times i am grateful for help when i really do need it.

Sorry to hear about your walmart experience...oh the joy of hidden disability. I have used those chairs when i have gone there at times. Several after my surgeries and sometimes also when i am syncopal. alot of the employees at the walmart here are chatty and no i am disabled and inquired after my surgeries, so i guess now when i go there they are helpful...some are even so wonderful they remember me and ask how i have been doing and tell me to let someone know if i need any help. But geez that would have really angered me!

I have one of dr weils books, so i too use the breathing techniques he suggested. they are very relaxing and helpful.

presently tolerating low dose lexapro for past 2 weeks. was on it for 1 1/2 some time ago. They tried and I had problems with several others...then diagnosed me with chemical sensitivity, as i had bad reactions to several ssri's, some antibitotics, beta blockers, birth control, depo etc. But everyone is different...i know so many people who have great success with different ones. I hope your depression, energy, anxiety improve and u find what is needed for that improvement to happen! Take Care!

hope u r feeling better soon. i know the frustration of er visits such as that my daughter and i have gone through many similar visits to that. i now haven given them tons of information on our condition and asked that since we are both frequent patients, could they please share the information with the staff incase either of us comes in. they were very decent about doing so as they have now become so familiar with us. twice this year unfortunately i had to be there for stitches with my 12 year old and then a bicycle crash with my 9 year old. i was shocked, that the staff now knows me by name, asks how my oldest is doing. and in the case of the stitches...my blood pressure dropped a bit due to the stress of seeing my daughters wound, just as the nurse walked in, she looked at me said sit your gonna faint, then asked when i was due for next dose of midodrine and adviced me to take it early. so there is hope.

million dollar question...i agree! morgan, you truly are witty...love your posts!

CONGRATULATIONS! You are an inspiration!

i understand the excitement of yes they finally found something that might be an answer and maybe they can do something. i was actually happy and relieved when my tilt was positive, everything recorded, so no i am not crazy! i wish you the best with the results and answers. ooooy! some pysch's.

i have has symptoms since i was a teenager...doctors could never figure out why. A few years ago my daughter and I got mono and have been sick since. they believe this triggered her and triggered me to become more severe. they also believe that a severe kidney infection she had with a temp of 105 may have been the cause or the severe strep infection she had. with both they couldnt identify the bacteria from the infections. she was hospitalized many times that first year. finally a ped dr referred us to a cardio who diagnosed her. She and I have both had 3 surgeries unrelated to the condition this past year... they believe this could be affecting our condition. it wasnt until they figured out what she had that they tested me and figured out what was wrong with me. now that we both have confirmed diagnosis, they say heredity, and other medical problems triggered the condition to become more severe for each of us.

my daughter with NCS/POTS was put on a prescribed potassium supplement due to the florineff depleting potassium and as they increased her dosage of florineff to 1mg/3xday, they increased her dosage on the potassium. they also check her potassium every dr visit, at least monthly. the replies so far have taught me so much more about potassium. great thread.

My prayers for comfort for the anxiety that comes prior to surgery, that the surgery is a great success, and that you heal quickly!

yep me too...less now that i am not on atenolol...but seems to happen when my bp is low and my heart rate is high. Sometimes, I have tremors too that are noticable to others...makes me self conscious.

not sure of answer to your ?, but aside from Nasonex, I use a netti pot saline rinse for my nose and it helps sooo much.

Dropped out of nursing school years ago, went back got medical office assistant degree, worked as a unit clerk in icu at a hospital, and as a chiropractic assistant. Have child care teacher certification. Stayed home with the kids and did child care and raised my kids for years. Then worked part time at my mothers craft antique store. Sold antiques on ebay. Did consignment crafting-sewing. Used to be super high energy never sat cleaned whole house in a day. Now i do the basics, anything my kids need-priority. Take care of my pets. Stay on top of laundry dishes. Can clean one room a day at best. Mostly I just reserve any energy I have for my kids. Homeschooled 2 of them last year. The oldest still homeschools. The younger attend school. Dream to improve my health enough to be able to work. Encouraged by all of those of you who can. My oldest daughter with NCS/POTS, homeschools, works for a dance academy to pay her tuition there and dances for the academy. After she finishes last 6 credits, she plans to work and attend college. It is so interesting to hear what everyone does!

Melly, ooooy! These doctors. I took my 18 yr old with NCS/POTS this morning. First her doc looks at me and says gee u were sick last time you were here...duh. Then my daughter explains her symptoms worsening lately and needing a new cardio that her insurance covers. She told her she fainted in the shower this morning. She did say she will look for a cardio dr to refer her to, but then added "I am also referring you to a pyschiatrist, your symptoms and anxiety go hand and hand blah blah.... Wish there were doctors who understood more. My daughter said thats ok mom, its not her fault she just doesn't know. Good Luck to you both with the cardios!

The nurse finally called. She said that Dr. says to try taking 10mg Nadolol in am and 10mg at night, or cut back to 10mg and see if this improves my gastrointestinal symptoms, or to stop taking it all together, that it is my call. (One month ago he started me on 10mg in am for 2 weeks, then increase to 20mg in am then, at either dosage from day one i had these symptoms? He said he can see me on October 12th and we will talk more. He is reluctant to try Norpace with me now.) She said, he doesn't know what to do with you next, your body is rejecting and not responding to all medications, and everything tried has notably made you worse. We don't know if there is anything more we can do for you or what we can do for you. We are sorry, and we will see you on the 12th. If you need to before then go to the ER. (I have to go cry now.)

I appreciate all of your replies so much! Interestingly, a couple of hours later my doctors nurse called me from her cell phone in her car. (Her and the doctor are with a group of electrophysiologist/cardiologists who travel to see patients at all hospitals over a 200 mile radius.) So she tells me she is calling because they need to cancel my appt. for wednesday and is wondering how I am doing. So I proceed to tell her how terribly I am doing...symptoms, side effects, level of functioning etc. I reminded her of my reactions to the other 2 beta blockers and my chemical sensitivities to over a dozen meds. She tells me that she is parked at a stop sign and is quickly jotting this all down for the doctor. She then tells me he will not want me on this med due to the gastrointestinal problems because my electrolytes have to be pretty messed up by now. She also said that he will not want me on it with the increase in asthma symptoms and shortness of breath. But that I can't just stop the med without having adverse reactions. (The doctor only travels to my area once every 4 months.) Then she tells me that I should probably be in the hospital and once again that my only other option might be norpace, which of course they would have to give me in the hospital. Then she asks if I will be home tommorrow since its almost 5 and she will talk to the doctor and find out what he wants to do with me. She said he may suggest a hospital stay of 1-3 weeks at whichever hospital he is going to be at next to try to get things under control. But at any rate she will see where and when she can get me an appt with him and call me tommorrow. As for Norpace, I am now as afraid of it as I am of the beta blockers. Aside from them making me sicker and further reducing my level of functioning, a few of my adverse reactions to meds were life threatening and by the grace of God I am here. I read alot about Norpace and the risks scare me, and that the side effects may keep me debilitated scares me. I have also had 3 surgeries in the past year, gastroscopy/colonoscopy, laparoscopy, and then a hysterectomy. I had 2 sm polyps in my sm intest. and 1 lg polyp in my lg intest removed along with several biopsies, then I had a mass removed behind my ovary(by the grace of God, all of these biopsies were benign.) The depo they gave me to try to control endometriosis depleted all of the estrogen in my system and then they put me on estradiol which caused a blood clot, so had to be stopped. So after 4 months of menstruation and pain, they did the hysterectomy leaving my 1 1/2 ovaries for estrogen. Over the past year I have lost about 100 pounds, if I lose any more weight, they are concerned because I will be underweight. It is so hard for me to accept being on ssi (barely getting by) and harder to accept how disabled I have become. I am a single mother, 35, with little support from others. So my goal still remains to become well enough to function as best I can despite my health problems. Best case scenario, the ability to work to improve our hopeless financial situation. I so desperately want as I am sure we all do to be on meds that help without side effects that further reduce my level of functioning. It makes the expression the cure is worse than the disease...ring true. I will stop my rant now, as I know I have said much. I apologize that this is so long! My regards to all of you! I will update on what they say tommorrow. Thank you so much for listening.

I am on my 3rd beta blocker. Toprol made my heart rate 40 all the time and I could not get out of bed. With Atenolol my blood pressure dropped and heart increased by 30 everytime I stood. I also believe after stopping it that it had worsened my anxiety and depression. Now I am on Nadolol first 10mg now 20mg. On the upside it seems like I have less anxiety, my heart rate doesnt seem to get quite so high as it did on the atenolol. The downside since I have been on this I have diarrhea nearly everyday for hours. My insomnia is worse than ever. My sleep cycle is further out of whack...get to bed later...only with the help of other medications. Keep waking up. So I end up sleeping later. I am in bed several hours but still failing to get enough sleep or quality sleep. The medication initially made me so groggy, I felt I could barely move. Some of that is not as extreme now, but my level of functioning is half of what it was before I started this medication. I am nauseated all day. Also, since I have asthma and I am on advair and albuterol, my asthma has worsened. I am short of breath. Advair is working less, needing albuterol more. I see the cardiologist in 2 days. I don't know if I want to be on a beta blocker at all. Is there anyone else with input about side effects they had from beta blockers. Does anyone else manage to control NCS and POTS without a beta blocker. I am at my wit's end. I feel like my doctors don't listen. I feel like a guinea pig in a bad experience. I feel like all the medications have done is worsen the quality of my life with the side effects. I am scared and depressed about this. Any input would truly be appreciated beyond...beyond! Thanks! I am in Wisconsin. Does anyone have a doctor in my state that they would recommend?

The only thing I attempt to do about these docs who don't get it is bring along articles and brochures and let them know most docs haven't heard of it either, so if they'd like to know more there's info in the brochures and links to websites for further info. (My regular doctor actually thanked me and looked up the websites on his computer...yay!)