maryfw

I did keep them on all day. They are "mild" control. I am going to my PCP today to see if he will treat me for my NCS/POTS. My cardiologist is too busy and is only concerned about if I am passing out not how am I living from day to day. I know that there are things we can try that could help me and I am not going to stop until we try some of them. Thanks mary

I have no idea. I just bought them off the shelf at Walgreens............where do you get fitted for compression hose. Thanks for the advice and I am happy to hear any tips you can give me. mary

I bought my first pair of compression hose and today is the first day wearing them. Does it take a while to get accustomed to the feel? I bought a size larger that I would normally because they did not have my size but I dont think I could stand anything smaller. Hope this helps me. Felling better today but that could be a fluke. Do they help anyone else? mary

I am sorry that you are having such a rough time. I have had a couple of bad days myself this week and frustration with my doctor on top of that. I can only tell you to hang in there and send you my prayers and well wishes. You are not alone. mary

I agree. We are definitely a minority in the issues of blood pressure. What about people you take to much Tylenol...............gonna take that off the shelves too?

I once heard of a survey, where who know how much money was spent,and they determined that people with small babies have lower IQ's than they did before they had babies.................NO DUH. It is called sleep deprevation!!!!!!!!! Thought that was a good one. CONGRATULATIONS.

Dr Quest, any suggestions on how I should approach this? I see my cardiologist for the 1st time since my TTT 4 months ago. I made an appt to see my PCP for Friday to try to get some help from him. I want to see the specialist in Pensacola who is on the website but they wont see me without a referral.

I FEEL TOTALLY BLOW OFF BY MY DOCTOR. I called and the nurse said, "you will have days like that." I called back and told her that I feel just as symptomatic now as I did 4 months ago before I was taking anything!!!!!!!!!!!!!!!!!!!! Doc won't budge. Maybe I need a new doc!!!!!!!!!!!!!!!!!

My co-workers were very helpful. I scared one because I was as pale as a sheet. My thoughts have been exactly what you said, that I may need more that one med to combat the pots. I am better today. Luckily the gentleman that I had to tell that I needed to sit down had vasovaga (??) also and he passes out. So at least it happened in front of the right person. thanks mary

I am cold most of the time. I am a banker so all year long I wear a suit jacket. I have a heater in my office. I sleep with a heating pad to keep warm. I overdress for most people but long ago I stopped worrying about whether it looked appropriate or not. All I worry about is am I warm. mary

I have taken Zoloft and Paxil for other reasons and YEP they both caused me to gain weight. mary

I have never completely passed out so that is the reason it has taken 20+ years for them to diagnose me. My normal symptoms are first thing in the morning as soon as my head raises up off the pillow my heart races. Then it kicks up again as I get out of the bath and then again as I brush my teeth and finish getting ready. Usually it calms down again but I am so tired all day long. Yesterday when I got out of bed I could not walk straight. That has happened before but only for very brief periods. At 10am after a meeting with the most important people in the entire company there I still could not walk straight. Then moments later I nearly fainted. I was able to sit down before I did but it was the first time I have had that happen during the day. I have been fortunate enough that all the other times have happened at home. I went home and to bed but I could not walk straight all day long. Also that morning my legs were purple and tingly. I also know that was the first time that I am absolutely sure the blood was pooling in my legs. I am wearing the 30 day event monitor and both yesterday and the day before the monitor self triggered and recorded something that I never would have even noticed. I had almost given up on wearing the monitor but I thank God I did not. I had even been lazy and slept without it one night.....bad girl. So I have a call in to my doc to see if she will give me something else. I am only on proamitine and have been complaining to her for a couple of months that it is not working. Her response is, "Are you still passing out?" and now I can tell her yes!!!!!!!! So, wish me luck. mary

I know a way to actually contact her. She sells dolls on QVC and she acutally reads the questions and posts that she gets, so if anyone is game, go to QVC and there are ways to send the guests comments and questions. I love her and think she is wonderful and it would be awesome to have her as a spokes person for us!!!!!!!! mary

Ok. Since I have such a hard time in the morning getting started anyway, does anyone have any ideas about how to eat breakfast and what to eat that is easy. I have to be at work by 8:15am so most mornings I have such a hard time getting up and going that I dont eat breakfast. I feel better when I eat protein.......bacon and eggs, etc but dont have the energy or time to prepare them. Any ideas? mary

sounds like a question for Dr Guest.

I am so sorry about your bad experience with a Christian Counselor. Just like in everthing else their are good ones and bad ones. I am a pastor's wife myself and I am not able to make church all the time myself but when I can it is a great encouragement to me. God looks on the things that others cannot see. He knows our heart and our intentions and our struggles. I personally saw a great Christian counselor 3 years ago who was a tremendous help to me in recovering from childhood abuse. She was however greatly qualified and educated. My husband, the pastor, was sick for years with FM and RSD, and he even had people tell me stupid stuff too so just chalk it up to ignorance because that is what it is, ignorance. Know that God loves you and he will never leave you or forsake. mary

Ok. I am still fairly newly diagnosed with Pots/ncs and have yet to have my first followup visit with my cardiologist. I am on proamitine and am now on a 30 day event monitor. My doctor has not mentioned salt loading or blood volumes or anything like that. On my TTT my heart rate did not increase but everyday when I get out of bed it sure does. On the TTT my bp dropped to 64/??...........they couldnt hear a bottom number. As far as I know nothing else was checked on the TTT other than my heart rate and bp. It may be 2 more months before I see my doc for my 1st followup and when I call in about my sypmtoms her concern seems to be "Are you still passing out". Well passing out has never been my biggest symptom. Fatigue is my biggest symptom. She has told me not to have caffiene and I have stopped that all together. I drink water and gatorade all day long. So, should I be taking salt tablets? I just hate this waiting game to see her again. She is a very good doctor but a very busy one with patients with much more urgent needs than mine. thanks mary

Banker. At my desk most of the time but do go out on business calls but not as bad as being on my feet all day long.

I took Zoloft for about a year and I had bad night sweats. So for me it definitely made me sweat. mary

I have had a few bad days as of late. Migraines for the past 2 days. Tachy,etc. Last week prior to my monthly cycle I was extremely tired and tachy and dizzy. I called my doc for new meds and all she wanted to know is "Was I still passing out?" and she ordered a 30 day event monitor. For me passing out is not my worst symptom. I know that this is not a fatal disease but I describe it as a life altering disorder. So, if after the 30 day monitor, if all she is concerned about is whether or not I am passing out, I think I need a new doctor. the doctor that diagnosed me and treating me is a cardiologist. Thanks mary

I hate to sound ignorant, but what is an ANS specialist? mary Maybe I need one.

I am new to the forum and dont know Amy yet but I will keep her in my prayers and thoughts. Get well soon Amy. mary

Amen to that.

Both. Sometimes off balance and dizzy. Cant nod my head to much in agreement in a conversation or I get woozy. Then sometimes i cant walk straight. Then other times I do get vertigo. Sometimes even vertigo while lying in bed. Especially if I have had a glass of wine (and I dont mean the whole bottle) at night with supper. I think it is because it dehydrates me but sometimes I just want to have a glass with my husband. mary'

It is a 30 day event (heart) monitor and it does record itself if it senses something that I dont. mary