Radha

hi amy, i am sorry to hear about all your troubles i too am in a wheelchair, actually i am just about totally bedridden, cannot stand or walk at all and i have bad lyme and co infections and POTS, all of which are getting even worse so i can really relate to what you are going thru, i really hope you get some relief soon,

Radha

recently i have noticed my neck feels more unstable like the bones are just loose right under the skull, and not just the usual cracking and popping sound i get when i turn my head. could this be because of EDS or the POTS? do any of you have this kind of neck problem?

Radha

I agree with Lisa-- I've found that the best natural way to clear out my blocked nasal passages is a saline spray. The sinus rinse (or neti pot) can be a great alternative too. I take Claritin daily and have managed to stop using Nasonex for now. It was giving me bloody noses rather frequently, so I switched to the saline spray, which I love!

Kristen

whenever i try rinsing my sinuses with nasal spray i just get more clogged up! and most of the water doesnt come back out! could you please tell me what homeopathic remedy you use, my sinuses are always so so congested and get much worse when i eat anything, thanks

Radha

when i read this post, i couldnt believe it! i am always moving, fidgeting, and shake my foot alot, sometimes i cannot even control it, when i am having a surge and getting so hyper, my leg shakes so bad and then it just stops suddenly by itself and i am also folding my legs in weird positions too, its very exhausting and i wish i didnt have these strange urges,

Radha

even if you are diagnosed with this, are there any medicines that actually improve the condition?

Radha

yes i am always so so exhausted but so wired and hyper at the same time! so i have a very hard time just settling down to falling asleep, so i know what you mean when you say you're so exhausted but cant stop moving either! i hate it

Radha

i was excited but when i emailed her, she said all her products are high in fat and i cannot digest fat, especially saturated fat, so i cannot buy any of her stuff! of any of you know of a bakery that makes low fat or fat free stuff, please let me know

Radha

does zofran make anyone drowsy or constipated? just curious if any of you had any side effects, thanks

Radha

there is a cream that has helped my mom who has bad sciatica pain down her leg, its called sciatica cream and you can order it from Walter Drake catalog or on their website, at least no side effects and it could only help, hope you get some relief soon,

Radha

thanks for your reply, i dont have IBS and never actually vomit, i do sweat sometimes at the same time i get nauseaus and it just comes out of the blue and goes away after a while but nothing to do with weather or anything else, thats why its so strange! i have the hyperadrengic POTS

Radha

hi, if anyone has any ideas, i would really appreciate hearing them! i used to get nauseaus once in a while but lately its happening more often and more severely, thank God my doctor agreed to let me try zofran, but i am just wondering why its getting worse when i havent taken any new meds or vitamins or done anything new or eaten anything new, does anyone know what could be causing the nausea and why it just comes on suddenly and then goes away after a while? and why its coming more often? thanks for any help

Radha

i know exactly what you are going thru because i go thru the same things and more everytime i eat and eating is a total nightmare! i get terrible adrenaline surges, with terrible pressure headaches and ear pressure and even squeezing of my throat like there isnt enough room to swallow the food and this all happens everytime i eat no matter what i eat! i hope you find some answers and if you please let me know, i am always hungry and can only eat so so little

radha

have any of you tried phenibut for anxiety and sleep? i was thinking of trying it, did it help any of you and how much did you take? thanks for any input

Radha

thanks for taking the time to research it, and for your reply,

Radha

atenolol is the best beta blocker for me, and i have tried alot, it keeps tachycardia and forceful beating down alot when i try to eat and my bp actually goes up from being so low,

Radha

has anyone tried Picamilon and did it help and how did it help you? heard alot of good things about this med and was thinking of trying it for anxiety and brain fog. any input would be appreciated thanks

Radha

changing positions makes me much worse, i often get a severe sudden slash pain always across the left side of my head, very lightheaded, and at the same time very hyper and feel like i am going into shock, and it takes too long to settle down again, i do use oxygen which helps some,

Radha

i was wondering if having too large and too often bowel movements can be a bad thing considering how little i eat, i have 2 large bowel movements a day and no diarrhea and no stomach pain, but it just seems like too much when i eat so so little, i guess this is better than not being able to go at all but any input from you would be appreciated, thanks

Radha

thanks so much for all your input, no i never clench my jaw and never had any TMJ kind of pain or that kind of problem, so you think extra potassium might help? and yes oxygen does help so i dont know why it would and what the reason is that oxygen helps the facial tension and faigue and pressure headaches, but if anyone has any ideas to explain this, i would really appreciate it and thanks again for your thoughts,

Radha

i have been getting a new problem once in a while, after eating alittle food, i find just the action chewing harder to do, like the muscles in my face are getting more and more tense and will not work when i am trying to chew, its not total paralysis but muscles getting stiffer and tense and just not cooperating! could this be happening because of the POTS? i also getting very painful squeeezing of my head and throat as i eat too, but using oxygen helps relieve some of this pressure and even muscles in face relax somewhat after using the oxygen, if anyone has any idea or explanation why all this is happening i would really love to know about it! and if there is any med to help it, i do know that my bp and sugar are dropping as i eat and i have low blood volume too, thanks

Radha

i also take guainifensin daily but still so much mucus, thats why i asked about this med,

Radha

have any of you tried doxofylline for shortness of breath or chest congestion?? its similar to theophylline, i am thinking of trying this since i have very bad time getting a deep breath and bad cough and chonic thick mucus buildup, any input would be appreciated thanks

Radha

detrol is usually used to control your bladder right? so that would make you pee less, which is what i do not want, but i do have choking sensation as i eat, do not pass out, so i am interested in this study, but worry about peeing less, but i am glad it helped you to eat!

Radha

thanks for the links, but i guess none of you have actually tried this med?

Radha

have any of you heard of the medicine Regulton? i think its only available in Europe but i am not sure, i know its for low blood pressure, have any of you heard of it or even tried it? any info would be appreciated, i was hoping maybe i could buy it somewhere online, thanks

Radha