bwstuckey57

I am so confused. I think I posted here before, but my brain does not work anymore and I can not remember ANYTHING!!! I'm sorry if someone has a similar post, but hopefully you all can send me information and help me figure out what I need to do to GET SOME HELP AND RELIEF!! Like most everyone here, I've been to a bunch of doctors. After many wrong diagnosis and possibly some that are correct, but NOT my main problem. After spending THOUSANDS of DOLLARS (that we didn't have!!) and going to "one of the most respected clinics" in the country, I was told that "THIS IS MY CROSS TO BARE", "THE HAND OF CARDS THAT I'VE BEEN DEALT", "YOU ARE JUST GOING TO HAVE TO LEARN TO LIVE WITH IT". During this conversation, he also explained to MY HUSBAND that my autonomic nervous system is OUT OF WHACK and overreacts and goes from one end of the spectrum to the other. It mainly overreacts and doesn't stop reacting to stimuli when it's supposed to. I sweat prefusely, my blood pressure goes extremely high, my heart rate goes crazy during the tilt table (regular one at the Cardio office) and stress test, etc. I can't go into a grocery store and get a few groceries without sweating and dripping wet with sweat, plus dizziness, headaches, shaky, weakness, burning stinging skin and red burning rash all over. I can no longer handle HEAT AT ALL and become so hot and sweat and sick that I have actually passed out and gotten vomiting ill and then spend all the rest of the day in the bed sick. In pain and sick and weak and so hot that I feel like I am going to burn up, literally!!!! I go through this cycle and then end up with the chills so bad that I shake and shake and nothing seems to help. I can't turn on a heater because I then burn up and it starts over again. During the summer, I had to keep the AC low and even with this had to have the ceiling fan and another fan on me AT ALL TIMES. I also had to put another fan on the side to blow on me from that angle. If the temperature around me gets above 68 or so, I start having the BURNING up feeling and can not handle how hot my body temperature gets. My family FREEZES and I am burning up. For some reason I get a bad case of chills late in the afternoon or early in the evening most days. I can't stand up for more than 10 minutes without the symptoms beginning and I now know when to go lay down before I get really really sick. If I don't take care of myself by laying down, I GET SO ILL AND STAY EXTREMELY ILL FOR DAYS AND DAYS. BED RIDDEN, ETC. I don't understand what all is going on and don't know what to do. WHAT SHOULD I DO? WHERE SHOULD I GO TO GET HELP AND SEE IF SOMEONE CAN HELP ME CONTROL OR STOP THESE SYMPTOMS? I WENT TO MAYO BUT NEVER SAW AN AUTONOMIC SPECIALIST BECAUSE I DON'T HAVE POTS (I guess that's the common problem?). Whatever I have is NOT THE COMMON THING, but someone has to be able to help me. If you know of some place and specifically someone that would be able to help me, PLEASE PLEASE LET ME KNOW HOW I CAN GET IN TOUCH WITH THEM AND GET AN APPOINTMENT. I CALLED ANOTHER DOCTOR THAT I SAW WAS HIGHLY RECOMMENDED FOR TREATING AUTONOMIC DYSFUNCTIONS, BUT THEY WOULD NEVER RETURN MY PHONE CALLS. I DON'T KNOW IF I'M TELLING THEM TOO MUCH INFORMATION WHEN I LEAVE THE MESSAGE OR IF THEY ARE JUST SO BUSY THEY DON'T WANT TO BOTHER WITH SOMEONE THAT IS OUT OF STATE. I am willing to travel anywhere and I also know that there is NO ONE around Louisiana that specializes in these disorders. If I am wrong, please let me know where I should go. JUST AN FYI: I ONLY LASTED 12 MINUTES IN THE SWEAT TEST, BECAUSE MY BODY TEMP WENT TO THE 102 DEGREE MARK AND I WAS ALREADY SWEATING BEFORE I WENT INTO THE SWEAT BOX. I COULD NOT BREATHE AND WAS SO WEAK AFTER ONLY 12 MINUTES AND THE SWEAT WAS RUNNING INTO MY EYES AND EARS, ETC. THE TECHNICIAN SAID THAT I HAD BROKE THE RECORD FOR THE "FASTEST TIME" EVER, BUT they marked my test as being NORMAL (I guess because I sweated??). My problem is that my autonomic system OVERREACTS and so I reached the sweating and temperature limit faster than MOST people After the test, my hustband wheeled me back to the hotel room and I had the WORST CASE of CHILLS EVER. My head was about to BLOW UP and I was shaking soooooo bad that my husband got all the covers and extra blankets and turned the heat up in the room until he was sweating. Of course, I ended up sweating really bad, but still shaking and weak from chills. Part of me was FREEZING COLD AND THE REST OF ME WAS BURNING UP and SWEATING until I dehydrated. I HAVE PROBLEMS WITH DEHYDRATION BECAUSE I SWEAT SO MUCH I CAN'T DRINK ENOUGH TO KEEP UP WITH THE LOSS. I END UP HAVING BLADDER SPASMS AND ABDOMINAL PAINS AND HAVE TO GO TO THE EMERGENCY ROOM. When I was in Rochester, I just took the bladder spasm medications and if that did not stop it, I was going to go to the emergency room there. The medicines and plenty of liquids worked. The next day (I was so weak and sweated just sitting up) we told the doctors, but they didn't seem concerned or note anything in the records from what I can see. They just said that the TEST RESULTS were normal so I must have gotten the chills from something else. PLEASE HELP ME UNDERSTAND WHAT I SHOULD BE DOING AND WHO MIGHT BE ABLE TO HELP ME WITH THIS BEFORE IT GETS ANY WORSE THAN IT IS NOW. I HAVE NOTICED HOW MUCH WORSE MY ILLNESS IS NOW THAN IT WAS LAST SUMMER AND LAST YEAR. WE CAN NOT AFFORD TO KEEP OUR HOUSE AT 68 DEGREES IN THE LOUISIANA HEAT, AND HOW MUCH LOWER WILL I NEED TO KEEP IT AS I GET WORSE? I used to be able to handle temperatures down here without getting ill and now I can't even sleep at night without a fan on me, even in the wintertime with temperatures in the 30s,, 40s, 50s, etc... Our house temperature in the winter CAN NOT exceed 66 degrees without me sweating and getting so hot and weak and headaches and heart and blood pressure and etc. problems. My family is sooo cold and I'm burning up. My hands and feet get soooo cold when the rest of me is comfortable without sweating or burning up, but the burning stinging rash is almost always there, especially if I sit up or stand or move around. Cold water and blowing fans help the burning hot stinging rash. If you feel my skin when I am hot and sweaty, most of the time when I have not stopped and laid down, I am cold and clammy feeling, like a heart problem, etc. HELP HELP HELP HELP HELP!!!! THANKS FOR ALL AND ANY INFORMAITON... SORRY FOR THE LONG MESSAGE, BUT I'M SOOOOO TIRED OF BEING SICK AND NOT ABLE TO DO ANYTHING... I WANT TO GET SOME TYPE OF PHYSICAL THERAPY OR CONDITIONING EXERCISES, BUT I'M NOT ABLE TO BECAUSE OF THE BLOOD PRESSURE AND HEART BEAT ISSUES AND SWEATING/DEHYDRATION, ETC. Would a Cardiologist be able to help me get the appropriate activity without my worrying about my heart or stroke, etc.???? I tried physical therapy and my blood pressure and stroke symptoms made them stop it. Then I went to the water therapy, hoping that it would allow me to get more activity, but I still had the problems and they wanted to call for an ambulance on more than one occasion because of my blood pressure and stroke like symptoms. I was so dizzy and weak that I couldn't sit up for a long time.

I feel like no one out there understands what is going on with me. I've read some of the post about how many doctors people have gone to and some are still trying to find one that will help them. I don't know how many I've seen and my husband and I just recently went to Mayo Clinic b/c of their "autonomic specialists". The initial doctor I saw (no name mentioned) did not even know anything about dysautonomia or autonomic what?, but referred me to the same doctors I had already seen down here. They reran tests that I had already had done here and they of course were all normal like they were here. My real question(s) is "What is the thermoregulatory sweat test supposed to show them?" Does it show abnormal sweating or that you sweat? It was 29 degrees outside and 60ish in the room where they were doing the sweat test. I SWEAT NO MATTER HOW COLD OR HOT IT IS!!! It looks like I've been in the shower and didn't dry off most of the time. I have to carry around a towel with me and I am not able to stand up or "stay up" too long without getting really ill - sweating, chest pains, headache, burning stinging red rash on arms, legs, face and eventually everywhere, and mutliple other symptoms, including dizziness, shortness of breathe, some heart wave thing, weakness, inability to use muscles, brain fog, etc. Then if I keep going when I get these symptoms, I will be ill and unable to get out of bed for DAYS!!! WHEN I WENT TO THE SWEAT TEST, THE LADY MADE THE COMMENT THAT I WAS SWEATING EVEN BEFORE MY TEST. She said that she usually has to WARM people up before the test to get them to "normal temp" before they go into the sweat box. SHE TOLD ME IT WOULD BE ABOUT 35 - 45 MINUTES OR UNTIL I REACHED THE BODY TEMP. THAT WAS NEEDED. SHE HAD TO COME WIPE SWEAT OUT OF MY EYES AND EARS A FEW TIMES. SHE STOPPED THE TEST AFTER 12 MINUTES AND SAID THAT I WAS BAKED ENOUGH AND THAT SHE THINKS I SET A RECORD FOR THE SHORTEST AMOUNT OF TIME EVER ON THIS SWEAT TEST. I GOT SO SICK AFTER THAT TEST AND HAD CHILLS AND "BURNING HEAT FEVERISH FEELINGS" ALL AFTERNOON AND EVENING AND NIGHT. IT FELT LIKE I HAD FOUGHT A WAR AND MY WHOLE BODY, ESPECIALLY MY LEGS (FROM THRASHING AROUND) HURT SO BAD LIKE YOU FEEL WHEN YOU HAVE A BAD BAD FLU. THIS IS WHAT HAPPENS TO ME WHEN I STAND UP TOO LONG LIKE TRYING TO FIX A MEAL OR CLEAN HOUSE OR SHOP FOR GROCERIES OR DO ANYTHING, SOMETIMES EVEN THE SIMPLIST THINGS. I KNOW HOW TO BRING MY SYMPTOMS ON, BUT THEY AREN'T IMMEDIATE SOMETIMES - SOMETIMES THEY ARE.. ANY BENDING AND PICKING THINGS UP AND STANDING FOR MORE THAN A FEW MINUTES (?? HAVEN'T TIMED IT). I WAS ASKING ABOUT THE SIGNIFICANCE OF THE TEST, BECAUSE THE DOCTOR THAT KNOWS NOTHING SAID THAT THE SWEAT TEST WAS "NORMAL". WHAT DOES THAT MEAN? IF I SET A RECORD FOR THE AMOUNT OF TIME TO POUR SWEAT ALL THE BED AND THEN GOT SICK BECAUSE OF IT, HOW COULD IT BE NORMAL??? I HAD THAT TILT TABLE QSART TESTING ALSO, BUT THEY WERE LOOKING FOR THE "LOW BLOOD PRESSURE" SYMPTOM AND MINE IS THE OPPOSITE (I HAVE TO BE DIFFERENT). STRESS AND STANDING AND HEAT AND SUNLIGHT CAUSE ME MAJOR PROBLEMS. THEY DIDN'T TEST FOR THAT AND THE LEG THAT THEY DID MY QSART TEST IN IS "DAMAGED" WITH SOMETHING LIKE NEUROPATHY (I GUESS IT MUST BE SMALL FIBER NEUROPATHY OR SOMETHING - NOT THE MAJOR NERVES THAT EMG IS NORMAL). I CAN NOT FEEL THE NEEDLES GOING IN MY LEG ON THE EMG AND I COULDN'T FEEL THE IMPULSES THAT THEY WERE DOING DURING THE QSART TEST. I FELT THE ONE ON MY RIGHT FOREARM, BUT NONE OF THE ONES ON MY LEG. I DON'T THINK THAT WAS A VALID TEST BECAUSE THE NERVES DOWN THERE DON'T WORK CORRECTLY AND THAT WOULD PROBABLY INCLUDE THE NERVES THEY ARE STIMULATING TO PRODUCE THE SWEAT, RIGHT??? ANY INFORMATION OR GUIDANCE OR SUGGESTIONS YOU CAN GIVE ME REGARDING THE THERMOREGULARTORY SWEAT TEST AND THE OTHER TEST WOULD BE GREATLY APPRECIATED!!!! THANKS SO MUCH, TIGERGIRL

I have not been diagnosed with a specific type of dystautonomia, but when I eat sometimes I get extremely ill. So sick that I sweat prefusely, headache, dizziness, shakiness, weakiness, brain fog, etc. I get so sick that I can't stay at the table or wherever we are eating. I have to leave the table or restaurant or whatever and go lay down. Either in the vehicle or at home, AS SOON AS POSSIBLE. IT'S AWFUL AND NO ONE UNDERSTANDS!!! I also have meals that seem like they never digest, even if I do feel hungry it feels like all the food is still in my stomach. Tiger

I don't know of any doctors in this area that have been "recommended". I saw that there was a doctor at Ochsners in New Orleans that deals with Autonomic Dysfunction, but don't know anything about him or if he is good or not. If someone does know about him, could they please reply to Sue's post and help us out. I don't think I can take going to ONE MORE DOCTOR THAT JUST DOESN'T UNDERSTAND. I would like to know if anyone knows of ANY DOCTOR ANYWHERE IN THE SOUTH OR SOUTHEAST THAT THEY WOULD RECOMMEND. I went to Mayo Clinic in Rochester, MN b/c my Endocrinologist recommended them or Vandervilt. I chose Mayo because I was told I also have AUTOIMMUNE problems. IT WAS A TOTAL WASTE OF MONEY AND TIME - THEY DOCTOR I INITIALLY SAW (WHO IS THE ONE THAT DRIVES ALL THE TESTING AND REFERRALS ADMITTED THAT HE KNEW NOTHING ABOUT AUTONOMIC PROBLEMS AND SAID THAT THEY WOULD PROBABLY NOT FIND OUT WHAT WAS WRONG WITH ME AT OUR FIRST VISIT AND HIS SECOND SENTENCE!!!). I should have known to get up and leave at that point and time, but knew that once they did the Sweat test and other testing and verified my Autonomic Nervous system was going crazy, they would refer me to the Autonomic Specialists that I WENT UP THERE TO SEE!!! THEY DIDN'T DO ANYTHING!!! Good luck finding someone close and if you hear of anyone around here, please please please let me know!!! tigergirl (as in LSU tigers)

I voted for getting rid of fatique, but I would love to get rid of the pain also.