pooter18

i am actually unable to take showers due to my balance issues and i get dizzy..plus with the shower curtain pulled i feel like i am suffocating..i have to take a bath and use grab bars to get in and out..then i have to sit on the bench outside the tub to get dressed so i dont fall on my head.. and then it is to the couch..i do feel better after a bath but i have to admit it is a chore for me and i probably dont take as many as i should in the winter..now summer i do take cool bath almost daily ..probably good thing i am basically home bound..LOL..best wishes to all..hope you all are having a descent day

it takes a while to get the right diagnosis unfortunatelly ..the first cardiologist i went to basically told me i was lazy and need to exercise more also..i thought my hiusband was going to deck the guy..i weighed 140 am 5'6..was a nurse full time running a Alzheimers unit as well as geriactric psych unit on my own with 2 nurses aids for over 50 residents....and trust me that was WORK.. and was raising 6 kids..now tell me how i could of been lazy ..it took over 10 years to be diagnosed....i do exercise some mostly just stretches on my bed if i try to exercise standing up i end up on floor anyway..LOL..so i dont even try anymore..i have a great cardiologist and primary care doctor right now so i am blessed..but still a lot of uncertainties since they are still so unsure how to exactly treat this it is just basically treat the symptoms as they arise..good luck and best wishes

i have had the same problem..either they have to order it or they give me a partial order...i finally told them i have been on this for 10 years and will be on it for the rest of my life and have used the same pharmacy and i get it refilled every month so could they please order enough for 3 months and then reorder when i get my last refill..have not had a problem since..but i live in a tiny town so they cater to us more than a big city would..

wheni was diagnosed at MAYO with POTS/autonomia/tachycardia.. they told me basically they would just have to "bandaid" the symptoms as they came up..problem is we suffer from so many different symptoms and everyday is different that i only treat the symptoms if they are severe or i would go crazy deciding on what meds to take and what to do to help the symptoms each day..i rarely leave the house becasue if i think i am feeling ok and try to go to Walmart i find out in 10 minutes i cant stand any more and have to go home..so i never go anywhere by myself..it does get depressing you feel trapped i felt that way at first....and like you said for people to look at us they think we are ok..i have a handicap plac for my car and i rarely use it because of the looks i get when i get out of my car..but if they could trade me bodies for one day i know in about a hour they would be begging to switch back..you have to constantly be thinking about everything you do..the way you stand,lean.bend,sit,walk,turn,what your eating,drinking,just everything and the minute you let your guard down you fall over (that is me anyway) .. i think for doctors they are so overwhelmed due to lack of knowledge about this and there are so many varibles ..that finding the correct diagnosis for most of us may never come..i never make plans because as soon as it gets close i cancel them so i dont get to town to see my friends any more and really dont do much do to the uncertainty of how my day will go..plus i feel like i have to keep up and i over due and then i suffer worse for a few days..so i find it best to stay home where i am actually content i have to say..most people would not be..i guess it is less stress on me just to stay home ..i hope you find out what is going on and a GOOD doctor to follow your care..best wishes..

thanks to all of you will also look up the AAG antibioties..still waiting on them to scheduale GI visit and since i really dont need aproval with my insurance think i will do it myself monday..still miserable..doctors office's are to slow..unless it's themself that needs a specialist..thanks again

thank you will check this out on the internet and talk to my doctor ..he did suggest i go to Vandebilt due to him not being real knowledgeable .. but i went to Mayo in 2010 (i believe it was then again brain fog) so i didnt feel the need to go to another hospital..although i have read they are doing a lot of studies on this if i was closer i would definately go for the studies so it might help someone else out..

multiple systems atropy with possible onset of multiple systems failure..he is a cardiologist but not a expert on this autonomia..i am 50..first symptoms around the age of 27..diagnosed at age 37.. but went to mayo in 2010 for a definate diagnosis..i am having problems with swallowing and more extreme problems with my digestive system..i am getting a GI appointment made to see how well my GI system is working..taking nausea medicene daily right now and has been 7 days today since i have been able to go to the bathroom and counting..i have even drank the colonoscopy prep and NOTHING...the problem with finding a doctor i live in a tiny town and have checked around and no one has any experience at all with this so they wont take me even though i have good insurance...i did find one with a little knowledge but my first visit he talked about potty training his son instead of finding out about me..did not ever go back...feel like i am sliping through the cracks here and should be getting some better care..well i will keep checking back and see if any more ideas come in..thanks so much

mine do the same thing..my hearing mufffles and then sometimes i get a ringing in them at the same time..drives me crazy..i just sit still and wait for it to pass..been doing that for many many years..my vision also is effected sometimes can only see half of what i am looking at and the rest is white flashing bright light which makes me nauseated..usually when my b/p has dropped

i have delt with POTS/autonomic nervouse system dysfunction/sinus tachycardia for over 20 years..i went to Mayo in 2010 and they helpd me out a lot..got me off the meds that were making me sicker and started me on meds that have worked fairly well till now..i guess i just kept thinking i have managed to deal with this for 20 years and have learned to listen to my body and notice any changes occuring and able to adjust my meds to my needs (with my doctors permission)....even though it has been hard and i cannot always do the things i want i have managed to a work around my health issues..always thinking one day they will find the cause and possibly a cure..however things lately have not been so good i have now been diagnosed with autonomic atrophy & possibly going into systems failure..i have not gone to get any of the test done yet to see exactly where i am..but i know my disease has changed a lot this past year and i am sicker than ever..it is like it has just all hit me hard now and i am scared and fearful of the future..i never let it bother me before....so i guess that is why i haven't gone to do the testing but my doctor is understanding and is not pushing me..you would thinkk after 20 years i would of come to grips with the disease (as i call it) ..i did not have any procedures done over the years due to all of them being basically experimental like ablation..pace maker in the stomach for digestive problems and many more and i have to say i am glad i refused since some of the prcedures done have actually caused worse POTS symptoms for some people..i do get the IV therapy..i guess i am looking for others that are in the stage i am or further advanced to tell me the truth ..i realize we are all different and we progress at different rates..but my doctor only has 3 of us and the other 2 are younger and have just been diagnosed..and he isn't knowledgeable enough or just won't tell me..but i can see it in his face that not all is well..so if anyone has any information they can share with me i would appreciate it..even though i said i am fearful at this stage i would appreciate the truth so i know what to expect and can plan in advance..i would of written this better years ago but my brain fog keeps me feeling like i have the intelligence of a kindergardner and makes writing and thinking hard for me..thanks in advance

my doctor is talking to me about actually putting a pace maker in my stomach to help with the nausea and digestive problems...i have read some (very litle) on it and it does seem to help well with the nausea but not much for the digestive issues so i am holding off..i was hoping someone on here had that procedure done and could tell me if it works or not..i am not big on meds or prcedures..if i had done everything they had suggested i would be worse off then i am right now..so i am leary about this as well..thanks

same here have had 2 done and just remember to hydrate and see if you can be the first appointment so you can rehydrate afterwards..did not have any problems with it at all