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There is no way to trust ALL doctors again, but at times we know it is a necessity to see a doc. I think that the key for me is to stay informed and alert. Usually, I stay away from doctors completely until I have to go for a substantial reason. But before I go for something I go ahead and do all the research I can to try and narrow down what I think about my current health problem may be. It is sad that I have to do that, but let's face it, I am going to either do it before or after a doctor visit because knowledge is power, and unfortunately many healthcare providers don't give us the right answers and don't care anyway. I only go for checkups with my dys doc. I haven't had a regular checkup in years, no flu shots, etc. Sadly, I have been unable to find a decent pcp in my area. Most are terrible, and the good ones aren't taking new patients. When I get sick or need a doc in a hurry I have been forced to visit walk in clinics where the care is substandard at best. I'm sorry to hear about your injury, and wish you a speedy recovery.

thanks for the reply, arizona girl, but I don't have any of the symptoms you described. Just the facial hair, and I have had other scans/tests by endo. at different times. Total testosterone level is completely normal, but the free was "slightly elevated". No mention of pcos or any other medical problem was given to me on the phone. There wasn't even a suggestion that I make a follow up appt. I read up on pcos quite a bit before even going to the endo. because I was looking for a solution for the facial hair. My symptoms don't really match with that. I really don't understand how the symptom of "high free testosterone" was given to me as if it was a diagnosis, though, because that is just a symptom, not an explanation of why it is happening. I was told I need to start taking a new med. and they called it in to the pharmacy, without much explanation. This doc was recommended to me by my dysautonomia doc, and she said he sees several of her other patients. He is a reputable doc at a well known clinic, but I really don't feel like I got much info. As usual, I am off to do my own research on my medical problems while the docs collect the money.

Hello, all. I am usually one to ask the docs and nurses tons of questions. I have been to endo. for excessive facial hair ( I am 30 years old and have been having dark, coarse facial hair for many years on chine and lip). I just received a call from the nurse about recent labs. Unfortunately, there was a bad connection due to the weather, and I was having a hard time understanding her. I was told my total testosterone levels were normal but my "binding testosterone" was elevated and the doc wants me to take 100 mg of Aldactone daily. I was told I would need to increase my fluid intake and let my dys. doc know the situation. I looked up the medicine Aldoctone( spironolactone) and I noticed it is a slight diuretic. Well, I already have a hard time holding on to fluids and I get dehydrated very easily. Has anyone else taken this medication? What are the side effects, and how much do I need to worry about the fluid loss? I will be taking 100mg daily. Is that a large amount for this med? I would like more explanation on the free floating testosterone she was talking of, but am having a hard time finding the info. on the net, unless it is in medical jargon. Can anyone shed some light on this situation? Thanks in advance.

I know of one person with dysautonomia, she is the mother of my little girl's best friend. Other than that I haven't met anyone. I joined the "meet others" program here and tried to no avail to contact people in my area. After attempting to contact 3 different people in my area I gave up. I really don't know why you would join such a program if you have no intention of actually using it.

I have to say that I'm glad you brought this up because it is something that I have considered for years. I had my daughter 9 1/2 years ago, and although I don't mind being small chested, I breast fed, and gained and lost weight rapidly. This left my breasts saggy and I have severe stretch marks. I want a breast augmentation, but of course, my health is an issue. Right now I'm doing very well, but I don't want to risk going down hill again. I've never had any type of surgery, so I have never had general anesthesia, which can be risky for even healthy people. Another thing to consider, although implants are of a high quality now, there is no implant guaranteed for life. At some point it is a good possibility that one or both will leak or sag and need a replacement. I know most manufacturers have warranties, but still that is going to mean yet another surgery at some point in the future. Really research how long they are expected to last, different brands and warranties, and inquire about replacements. My sis had it done a few years ago, and even though the implants are under warranty for several years, the actual cost of surgery will still cost money, and she will have to go under again if one does leak. I think if I knew it would only be one surgery for the rest of my life, then I would do it, but I don't want to have them replaced in a few years(more anesthesia and more risk), and I certainly don't want one big boob and one small boob if one decides to rupture. LOL. Another thing, don't underestimate the level of pain that can occur from surgery. My sis has an extremely high pain tolerance, yet she described the day after as having a car slowly roll over her chest and crush it. She couldn't even lift her arms for two days, and her husband had to feed her. Believe me, she had a good doctor, so that wasn't the issue. A few days later though she was doing pretty good. She had to be on pain meds, so consider that too. Can you tolerate pain meds? Talk to people that have had this done to know what to expect. Research the cosmetic surgeon very carefully, and I agree to prefer this done in a hospital setting under very close supervision of vital signs. Please let me know how the consultation goes, as this is something I am looking at myself. I totally 100% support your decision and I understand, just be safe. Good luck!

I can relate, as do many others on this board. I do get embarassed when I have an episode in public. When my daughter was in T-ball a few years ago, I would have to take her to the park in the middle of summer and watch her practice and play. I remember specifically once that I literally sat there for about an hour, close to losing consciousness and all I could think was that I was stuck there with my small child, and if I passed out, then my daughter would be left in the hands of strangers. Finally I sprawled out on the bleachers, flat on my back, and managed to call my husband, who had to leave work to come get me. It was such a hassle. My husband had to get his Grandmother to come pick me up and take me home so he could stay with our daughter at practice. He had to hold me up as we walked to the car, and it almost came to the point that he had to fully carry me. I got back to his grandmother's house and laid on her couch for hours, too sick to speak or go to the bathroom. I'll never forgot that day as long as I live. Five years ago I would have *never* imagined going to school full time, much less getting a job! Those kinds of episodes were once a common occurence for me, and I missed nearly a decade of my life, and many wonderful times with my little girl. One year, I missed my baby girl's entire Christmas. I still have trouble talking about it. She was only 2 or 3, and Christmas was such a big deal for her. My husband packed her up and took her to my Sister's house, where they all celebrated, ate dinner and opened gifts without me. All I have are a few photos of that moment, and it took me a long time to forgive myself. We must all come to terms with our limitations, push ourselves as far as we reasonably can, and never let anyone else try to pressure us into something we know is impossible. You might miss some stuff now, but keep up your spirits and try to visualize all the things you will one day be able to accomplish. You won't get everyone's support, unfortunately, but you do have ours. You know what you are capable of, and don't be so hard on yourself. You are ill and it is not your fault. If it was migraines, diabetes, or another well known disease that had a greater amount of public awareness you probably wouldn't have such a hard time with other people understanding. But you know your illness is real and that you are doing the best you can. Best of luck to you, and things can get so much better.

Thanks. I hate to whine, but sometimes we all need to vent.

I recently posted about doing so much better this past year, and I know that I shouldn't complain to you guys considering this fact, but I have been in such a rut this week. I worked my butt off for 3 years(fighting illness unbeknownst to my fellow classmates) and now that I have graduated with honors, become licensed and registered for my profession, and excelled academically in all areas of school, I am sitting at home without a job and without any friends. Have any of you felt like this illness has taken your whole life away? Don't get me wrong, I am grateful to feel better physically, but dysautonomia took away my entire life while I was in my 20's. I got sick when I was 20, and here I am, 30 years old, and I am feeling isolated and lonely. Because I was on bedrest, sick and weakened by an unknown health problem, I lost track with the few people I was close to. No one had time for a young woman that didn't have the strength or energy to go on huge shopping trips, out for long lunches, or walk for hours on end on vacations. I was the party pooper. Even my own sis would get frustrated and tell me "you never want to do anything." Ummmmm....I felt like I was going to die, and before diagnosis I thought I might. I have very little family outside of my husband and daughter. My Dad and my husband's grandmother live here, but that is it. I have no one my age to talk to, hang out with, or confide in. My only girlfriend I had while growing up here has pretty much shortened our relationship to a monthly phone call or an occasional message on myspace. I can't find a job! No one here is hiring, especially new graduates. Dental hygiene is a fast paced, money making business, and I have only had 2 interviews since graduation in May, and both offices seemed to question my clinical skills just because I am new to the field. Hello?! Everyone is new at some point; surely all these other hygienists were at one time newly entering the field. I have searched and searched and no one is hiring, yet most of the girls I graduated with already have jobs. Many of them are working because they left the state for better working conditions, pay, and benefits, and several girls I know were hired because they had connections. Must be nice to be sitting at home and get a call from a friend of a friend with a job offer you didn't even ask for. In this day and age it doesn't matter how smart you are, how hard you work, or how dependable you are, it is all who you know. I graduated with a cum 3.895 GPA, scored in the top 18% on my national board examination, and passed my state licensing exam without a problem. So here I sit at home, no job, no friends, no much needed income, and we're financially broke, my car is a junker that probably won't last 3 more months. But I can't afford a new one without a job. If my car breaks down, then I can't even get a job, so I am stuck b/w a rock and a hard place. Worst of all, I don't have anyone to talk to about all of this. No one to shop with, go to lunch with, etc. All the girls I went to school with were nice to me, but most were considerably younger than me and they tended to pair off in little social groups. The girls I had most in common with live too far away to have any relationship at all. Sorry to rant, everyone, but I am just so frustrated right now. I want my life back! Does anyone else feel this way or am I just being an idiot?

Very intersting post! I also played with mercury as a kid, tons of it, in fact. I would think I would have problems sooner. I was about 13 when I did this, and I started having pots symtpoms when I was 20. I always assumed the pregnancy triggered my symptoms, but have always wondered about the mercury exposure. Is this something I should ask my doctor to test me for?

This is something I can totally relate to. And I have also used the "migraine" excuse. Why is it that some medical conditions are completely accepted and understood by society, while others leave ppl shaking their heads at us with contempt or disbelief? Honestly I'm tired of explaining futher when I say "I have a neurological disorder". Of course, that brings on a slew of questions just out of curiosity, and then I am looked at like I'm a freak, or that person no longer treats me the same again. Some family members will never get it, and oh well. The funny thing is that a few months ago I met the mother of my daughter's best friend for lunch one afternoon. This was our first meeting, as our third graders had been quite close in school this year, we had finally decided to meet in person. We got to talking while the kids played. Somehow the conversation turned to my health. I think I was explaining why I didn't start college until I was 26. I started to button my lips and not say a word about it, for obvious reasons, but for some reason I felt comfortable around this person. Finally, I just said "neurological disorder" and named some of my symptoms. Her eyes got large, and she asked the name of it. When I told her dysautonomia, she blurted out that she had the condition too! As it turns out, we even go to the same doctor's office, although she sees a different doctor. Needless to say, that turned out to be an interesting afternoon.

I saw your post on the thread I started a few days ago, so I'm sure you have already counted me in for a response. I will add, this is an interesting topic, because there does seem to be some "in between" area of rest vs activity for many of us. I feel horrible if I'm overactive, and horrible if I'm underactive. Basically, if I get up(and stay up) early in the morning and keep physically moving and keep my brain stimulated, then I feel much better. I wonder how much the mental stimulation affects this scenario compared to physical stimulation. I know that they both seem to help. I also know that it is more than just the wake/sleep schedule, because even if I keep that in tact on long vacations, I literally feel drugged if I don't get up and out of the house in some way. It is very strange. Since I have been out of school in late April, I have felt myself decline a great deal. I can only hope that I can find employment soon. The great thing about dental hygiene is that a full work week is usually only four days, so maybe I won't get too overworked. -April

I'm very lucky to have found the right meds about 3 years ago, but it did take a while(several months) before I realized they were going to work. Even now, if I miss a dose or two, I feel bad, so at this point I am still dependent on them. I take Atenolol (25mg 2x daily) and Klonopin (just .5 mg every night). I also take a small dose of Levothyroxine for low thyroid. I'm one of those that has high bp and heartrate most of the time, so these drugs keep my system from going through the roof. The dosage has been the most important factor in my meds. It is funny, but when my current doc tried to put me on the Atenolol, I almost laughed. I had taken it before, and although I had no side effects, it did nothing. She convinced me to try it again, but she bumped the dose from 25mg to 50mg daily, and when I added the small dose of klonopin, it really helped. I tell you though, one of my biggest triggers right now is simply not being on a regular wake/sleep schedule, and not being active enough. I graduated in May, and I've been at home while I am looking for work. It is killing me. My circulation has become terrible, I'm tired all of the time, and I feel so weak. I know when I start working that I will perk back up. Every time we had a vacation from school I would get like this.

Hi, all. I saw a couple of posts of others that have been doing well, and I know that can lift the spirits of others. I thought I would share that I have gained strength in the last year. I have just graduated college. I was able to make it to classes for three years, and very seldom missed any due to being unwell. I am now currently looking for a full time position as a dental hygienist, something that would have seemed impossible three or four years ago. When my daughter was born 9 1/2 years ago I was on bed rest for months, and for the next few years I stayed mostly homebound, with a trip to the grocery store being like some monumental task. I would usually end up leaving all my stuff in the shopping cart and would have to leave after a few minutes. I had dizziness, pre-syncome symptoms, heart racing, palpitations, severe brain fog, muscle tightness and cramps, horrible sudden bouts of fatigue and weakness, shortness of breath, inability to concentrate, insomnia, flushing, and absolutely no stamina for even small tasks. Brushing my teeth used to be a huge chore! I felt like I was slowly dying. I pushed myself, found a good doctor and the right meds, and have found that staying on a strict schedule with the right amount of activity(not too little, but not too much) have played a huge part in my improvement. I dare not say "recovery" because I still experience symptoms, and I definitely have my triggers.(heat, stress, fatigue) I am excited about finding a job. Yeah, I'm nervous about handling the workload, but I know I can make it. I would like to thank all of you(***big hugs***) for being here for me when I was feeling ill, and especially when I had questions. You have all been a tremendous help and comfort to me over the years. I know I don't post enough, but my life has been busy!

It is nice that a doc spent so much time with you and has an interest in POTS. However, my only concern is that he seems so sure about the root cause, despite there is really no evidence to point in that direction. As others stated, there are theories, yes, but no hard evidence. His treatments may be aggressive and expensive, and I fear, can only be deemed experimental in nature for this type of diagnosis. He also gave a claim of helping 1/3 of patients. What patients is he talking about? Was this a study done by him or is it published in a scientific medical journal? I would want A LOT more info. on those statistics before getting my hopes up. It really seems like he aims to cure you, in which case you may be in for a disapointment. You said he thinks he can "fix" your immune system, and he believes that this is the overall cause of your condition, so please, investigate this a little further. Ask a lot of questions and do some research. We're not trying to bring your hopes down, we just want you to be safe and realistic. I can't tell you how many times I was misdiagnosed, given the wrong types of meds, and had my hopes brought up, only to be dashed to pieces later. Regardless of your decision, good luck with everything, and keep us up to speed. The main thing is that you stay safe and that you are aware of side effects/complications from any potential treatment.

Thank you, Miriam, and I am glad to hear from you, doctorquest. I think I can manage to find a doctor around here that can refill my medications. Unfortunately, I don't have a good feeling about confronting a doctor about unneccessary tests. I was told on my first visit that this is how I would be tested on a regular basis to keep track of my health issues. At the time I was sick and vulnerable, and terribly uneducated. I had no clue if that was normal or not. I just really would hate to lose this doctor, and then find myself in a situation where I need a specialist if I do crash and need further testing and care. There aren't many doctors around here that even know what this disorder is, much less do they know how to test or render the proper treatment. But I can not rationalize spending thousands upon thousands of dollars on testing for no reason. You also made another good point, Miriam, and one that I have already considered. My insurance company is going to be paying thousands every year for this testing. They aren't going to be happy about that at all, nor should they be. At some point they might begin to question the validity of all of the tests. I agree it is frivelous and unneccessary testing that makes healthcare go up for everyone.