Radha

i get facial weakness, both sides when i have been chewing, not that much food, but after some chewing, then muscles get stiff and hard to move face, its scarey but with rest goes away but comes back next time i eat,

radha

sorry if i am getting too personal, but why is she being hospitalized? just for POTS? what is a rehab unit going to do for POTS? i hope you both find the strength and support to get thru such tough times,

Radha

this spanx doesnt seem to be what i am looking for, is there any prescription strength compression for the abdomen? i cannot walk or stand at all so i dont think i need it for legs, juts trying to limit how much blood goes to stomach when i eat, thanks so much for all your help

Radha

i am female, very skinny and cannot leave my home at all, so i dont know how a surgical supply can measure me and get me fitted and i dont want to get something that is too loose so it doesnt help........this spanx, where can i order it online? thanks for your help

Radha

some of you have mentioned using abdominal compressors, can you tell me what brand you recommend and how to measure to get the right size? how tight is it supposed to be in order to keep the blood from pooling? it takes me a long time to eat so i am wondering if i can wear something tightly wrapped around me for so long..........but i desperately need some relief when i am eating! can i order it online and where? thanks for any help

Radha

i know exactly what you mean, its like the muscles just forget to work! it comes and goes and sometimes i will have to try 3 or 4 times to swallow even my

saliva, it is scary, just like all the other craziness we go thru, we just have to be extra careful because i know if i am not concentrating when i am swallowing

food then i will choke very easily,

Radha

sorry to hear you are feeling so down, i can totally relate, i havent been able to leave my home at all for years, cannot even sit up long enough to go outside and get fresh air, and too many years since i had any friends over or even talked to them on the phone because i cannot even talk loud enough and get so out of breath, my mom is my best friend, caregiver, my whole world so i thank God i have her, i also cannot lean back, cannot lean my head back at all or get very dizzy and blood starts pumping harder in my head, very painful! so i am constantly leaning forward, and cannot stand at all, i really hope you find some relief soon, but dont expect too much since this is all so complicated and no easy fixes, but i do hope your loneliness and sadness gets better, all we can do is find support in those who are willing to listen, most people just cannot handle all our stress! we are always here,

Radha

what medication is there for pooling other than midodrine? i take alot of beta blockers but i dont think that helps for pooling, i cannot thank all of you enough for replying, yes i get very cold when i eat thats why i cannot tolerate ice, even though it does help the pain, could someone please tell me the best brand name and where i can order the compression, i dont care about the money, i didnt know you could get them custom made for hands and arms, and i have no idea what size to get for my abdomen, any help would be appreciated, thanks again so so much

radha

i have noticed my eye problems getting much worse just in the past 2 months just getting blurry and hard focusing suddenly, flashing lights in eyes, even with eyes closed, watching t.v. and looking at computer makes it worse but its the worst at nite, and it comes and goes, i wish there was some eye drops or medicine for this! its interesting someone mentioned the blood pooling because i have bad bad pooling when i eat, but the eye problems happen later on,

Radha

i tried midodrine 6 or 7 years ago, i wasnt as bad as i am now, but even then it didnt help me at all, didnt even raise my bp at all, yes i get blood pooling

even with so so little food and yes ice on my hands helps the pain but i cannot take getting so cold by putting ice all over arms and legs and feet and i am

already getting so so cold when i eat, i guess because the blood is being directed to the stomach and away from the skin and i also have very low blood

volume which i am sure makes everything worse! i havent tried the hose because it takes so long for me to eat since i choke and have swallowing problems

that it feels too too uncomfortable wearing them or even the abdominal binding, i cannot stand or watk at all, thanks for any ideas and help

Radha

for those of you who get bad blood pooling in arms and legs and hands and feet, i get it very very bad when i try to eat so little, even with legs elevated in

bed, and when the veins get so big and swollen its so so painful even after the veins go back to normal and even after i am done eating, i get very bad

heaviness and even sharp needles in hands and feet when i eat too, is there any specific med that might help the pain of the pooling? i take oxycontin for

bone pain of lyme, but it doesnt help at all for the needles and heaviness pain of pooling, thanks for any help

Radha

this is the time to really find out who your true, real friends are, and even after explaining what you are going thru they still dont show compassion and some

understanding, then i dont think they deserve to be your friends! just my opinion, you need lots of love and support now, now more stress! i really hope that

you find that support in family or maybe new friends and of course we are always here,

Radha

the artificial light protection lens sound like something that might help since watching t.v. and the computer screen do make the flashing lights and like

looking at a light bulb get worse , can you buy these lens by themselves since i already wear glasses and cannot afford to buy whole new pair of glasses,

thanks for your advice,

Radha

i really hope that the trip brings some answers and some benefit, you are very brave for going there and trying to get better, wish you all the best

Radha

can anything be done for this over active epinephrine activity except taking beta blockers? i have this problem too!

Radha

i guess i should have said bright spots and not flashing lights, but they are there with eyes closed too and i also have the drifting eye but i have had that since i was a child way before i ever got sick........these sudden lights and floaters dont come with a headache, is this related to POTS? thanks so much to all of you for replying,

Radha

does anyone know why i am getting more flashing lights or floaters in front of eyes and even with eyes closed? it used to happen once in a while but now happening everyday, just comes and goes and then i cannot read or watch t.v. is there any medicine to help this? any input would be appreciated, thanks

i have not had any head injury, nothing new has happened, is it just the POTS?

thanks

Radha

you have every right to feel anything, illness *****! and it tests all your beliefs and its totally unfair and steals so much from you, but somehow we still find a way to go on, and i hope you will find the strength that is inside all of us to cope, wish you all the best

Radha

can i ask what kind of stomach pain you had? was it with eating or just anytime?

Radha

i am thinking of trying bentyl for some stomach cramping when i eat, but i dont have any constipation or diahrrea, very normal bowel movements, just some

cramping, and i dont get the same cramping everytime so i dont want to have to take it every single day, but then will it work if you start feeling the cramps

suddenly? not sure if its just gas, or something else, but do you think bentyl could help me? i dont want it to get me constipated or feel even more

lightheaded than i do now, any input would be appreciated, thanks

Radha

i take propranolol 40mg twice a day with atenolol too, it isnt strong enough alone for me but it does help the tachycardia and adrenaline surges, nothing eliminates it entirely, i couldnt manage without it,

Radha

corina, do you know the website for the netherlands? thanks again for all your help

Radha

thanks so much for all your help, my doctor doesnt know about this med so i was planning to buy it over the internet without a prescription and they only come in the 60mg, i cannot find the 10mg, so i guess i wont be buying it, thanks again for your help

Radha

i am left handed and the veins bulge more and bruise more on left arm and left leg and left sided headache, but joint pain is worse on right side, so i am confused! thanks for your reply,

Radha

for those of you who take very low dose of mestinon, is it hard to cut a 60mg tablet into 10 mg doses? does the tablet just turn into powder or does it stay in little pieces? i have to start out very very low but i dont want to pay for it if i cannot cut it up into so many tiny doses, thanks for your input, and do you think it might help for facial weakness and swallowing difficulty, but no eye problems?

Radha