Radha

danielle, yes i have the same problem with the atenolol, it has lost its effect over the years, i take toprol which has also not been as effective as it once was, and i guess i will have to increase the doses since they dont work as good, thanks for all your suggestions, radha

was just wondering what types of signs or symptoms there are associated with mito disease, i dont know much about it, thanks radha

thanks to all for replying, i already take the toprol and add a half tablet of atenolol when i feel extra tachy and want to get some food in, still get the symptoms, but would be much worse if didnt take any beta blockers, and i drink a lot of salt water too, and sugar free soda, thanks again for all your help, and i find lying flat helps alitlle while eating or lying down right away after eating, go figure! radha

to danielle or anyone who gets tachy when eating even small amounts, did anything you took help to alleviate the pounding and tachycardia after eating? other than avoiding the usual triggers? thanks radha

eating any food worsens my POTS, but i notice that sugar and carbs definately make me worse, stomach cramps and more tachy, radha

what exactly is ablation? thanks for any info radha

hi kristin, could you tell us specifically what you took nutritionally that helped you so much and in what way you feel better? what symptoms improved? i'm desperate for any relief! thanks radha

hi, did you get a bad herx reaction when you took the antibiotics for lyme, if you did how did you deal with it? did you take anything to help with the worsening of symptoms? i cant tolerate any antibiotics coz it makes me so much worse, thanks for any info, radha

i used to be freezing all the time, couldnt tolerate any air conditioning, now this year even in winter, i'm so hot all the time and i'm even skinnier than last year, but i'm hotter than my parents who are much heavier than me, and i wish i knew what the cause is for this drastic change, but once again, i may never know the answers since so much of POTS is a mystery, just wanted to add that i can relate, wish i had some wisdom to share, i'm only 28, so i dont think its hormone related radha

thanks lois for your concern, and to all of you, lois how did mestinon help you? did it help with the anxious tachy feeling? did it help with the fatigue? did you have hard time eating without getting pumping, and headaches? thanks radha

i also have terrible problems with short term memory, but long term seems to be ok, and i can tell you it frustrates me so much when i forget what i was about to say and then try so hard to remember it again! it drives me crazy, wish i had something new to add, but i have a paper and pen attached to me at all times, all i do is constantly write down things, even every thought i have, i hate that i have to do that, but i feel totally lost if i dont have paper and pen within reach, radha

thanks to all of you for caring enough to reply, i never eat sugar or caffeine or carbs,and all i can tolerate is a mere 2 or 3 bites at a time without getting symptoms, i'm reluctant to increase my beta blockers since my bp is already very low,but i've never tried any ssri , mainly coz i dont want to have to add yet another med to my long list, and i dont want to take something that is so hard to get off of, and that is addicting, thanks again for all your suggestions, i guess octreotide isnt for me! i value all your input so much, and i always share what i learn with my mom, who is my angel, my best friend, my counselor, my whole life! she is so glad that i am a part of this group, radha

hi stacey, thanks for your input, what is TPN? radha

i think your post was very true and inspiring kathleen, thanks for your post, i felt empowered after reading it radha

thanks Gena for your concern and for replying, yes i tried the midodrine and it didnt help, but then i tried it years ago and i didnt have as many problems eating as i do now, this has definately gotten worse, i dont know much about the mestinon, i didnt think it was for the forceful beating, i'm not sure whats it for, thanks again radha

could you please tell me what meds u took that helped your headaches, and what kind of headaches you get? thanks radha

i forgot to say i never saw a hematologist and theres no one in local area, and i cannot travel at all, and i'm also very skinny, only 100lbs i think and 5'9, thanks again, radha

thanks so much for replying, is it absolutely necessary to have the blood tests done? coz i have a very hard getting any blood drawn and even little blood loss makes me much worse, if i take the lowest dose do i have to worry about the hematocrit levels? i really appreciate all the info, radha

thanks stephanie for replying, and your reply has definately influenced me towards giving it another try, can you please tell me what dose you took that worked for you, what you started out with and how often you increased dose? i guess i will have to be more patient this time around if i take it, and did you have to get regular blood tests done while on it? did you also mention in an earlier post that you had to take IV iron to make the epogen work? i know my doc wont agree for that, radha

for those of you who have taken octeotide, did it help you to eat without getting tachy afterwards? i'm getting so bad where i cannot eat even the tiniest amount of food without getting forceful pumping in my head and feeling so terrible and getting headaches, me and my parents are so worried because i'm slowly starving to death coz its so hard to eat, but i dont have problems with actual digestion, just the blood pooling and heartbeat problems, would octreotide maybe help to avoid these symptoms so i can eat more? thanks radha

hi, for those of you who have taken epogen, how long did you have to take it to get improvement and how did it help? and does it only help for those who have low red blood cells? because i dont have anemia, just low total blood volume and when i tried it few years ago for 3 months it didnt do anything for me, didnt raise my BP or make me feel better at all, no side effect either, but just wondering it its worth giving another try, but not if its only for anemia, thanks radha

if you dont mind my asking Lisa what made you improve? what meds did you take that helped? radha

thanks to all for replying, unfortunately no luck trying to get a new doc, i live in a small town and no one will make a house call, and she wont readjust meds without proper documentation, or try anything new, like adderrall, or anthing i ask about, wish i could just get a hold of some these meds, i would be very careful! anyway i doubt i will have the monitor done at this time, thanks to all for your support radha

yes my immune system is very bad, dealing with alot of viral and bacterial infections along with the POTS, the symptoms from the infections often makes the POTS worse, its a vicious cycle, wish i had some advice to offer, just that i know what you are talking about, radha

i had holter done a year ago and it was normal but since i asked my doc if could increase my beta blocker she wants to do another holter or event monitor, but i'm hesitating since it was already normal and to be honest i'm sick of normal results, just more ammo for them! anyway, do you think its worth redoing these tests, would anything really change in a year? emotionally i rreally dont want to deal with normal results, think some of you understand, but i do get forceful beating after eating, or if cough or push for bowel movements, thanks for any input, radha