Radha

thanks for all the info maxine,

Radha

i totally and completely understand your feelings, so so often i ask myself ok, i have learned all i am going to learn, enough is enough, i have been sick since i was 15 and i am now 32! i have never dated, never learned to drive, never had a job, never done anything! and i only slowly getting worse as time goes by, whatever you are feeling, you have every right to feel, this is so so unfair and there is no logical explanation for why we have to suffer so much, so i try hard not to dwell on the whys because it will just drive you deeper into the depression and despair, just know that we are here and understand, and i really hope you get some relief soon

Radha

is there any medicine to help any of the EDS symptoms? bone or vasular symptoms?

Radha

has anyone tried this medicine or even heard of it? its supposedly used for gastro problems and was wondering if it helped anyone, any input would be apprecated, i get nausea and stomach pain so was thinking it might help, thanks

Radha

yes i would call that an episode, i have all the same symptoms plus some more and most of them all the time but when an episode is triggered by food or noise like you, then they are all much much more intense and unbearable, sorry you have to go thru all of it,

Radha

i get these spasms too, but not an official diagnosis, but fits every classic symptom of this type of this microvascular angina, i know i am too young to have

any blockage since i am only 33 and never smoked or drank and low cholesterol, chewing an aspirin and inhaling oxygen defiantely helps, i can say when i

get it it is very scarey and so so painful! i would loke to have test done at that time but there is no way to get there in time since it would probably be gone

by then! so frustrating! but glad to know i am not the only one! i get terrible jaw pressure with the crushing chest pain too. so this is related to the POTS and

EDS? thanks for any info.

Radha

the nitro doesnt lower your bp? i am concerned about this since my bp is already low but i do get severe angina type chest pain, did your doctor require an official diagnosis of angina or did he just agree to give you nitro based on symptoms and not test results? thanks for any input

Radha

i feel more than terrible all day but the first 2-3 hours in the morning are the worst and the best time for me is 3AM in the morning!

crazy!

Radha

hi Karen, thanks so so much for replying, do you do one injection every single day? any side effects at all? i was worried about sticking them in the stomach so many times, maybe stick it in an organ by mistake because there are so many organs in the stomach! i am so desperate for help with eating, and i stay away from carbs too, no sugar either, thanks so so much for your input! my mom was worried about sticking it in the stomach but you say its ok, thanks

radha

i get a drop in blood sugar, drop in blood pressure and tachycardia and i bad blood pooling, all with eating low carb, and no fat and no sugar! eating so so little brings on all the adrenaline symptoms and its just a nightmare and takes too long to get normal again, and it all leaves me so so drained and beaten up! i have to lie down right away and i am always hungry because i can only so so little! the beta blockers help the tachcardia but i so wish there were meds to take for the low sugar and low blood pressure and i eat so much salt and drink alot of water too! at least its nice to know i am not the only one with these problems, i really hope we all get some relief since its more than cruel not to be able to eat!

Radha

thanks for your reply, i am trying to learn as much as i can before i ask my doc about this medicine since i am pretty sure he will say no!

Radha

i know this was just discussed in a recent post, but i wanted to know if octreotide has to be injected each time in the stomach or can you inject it anywhere and change places each time? for those of you who have used it do you use it to help stand or help lessen the problems with eating? i would be taking it for eating so i would think i would have to inject it in the stomach each time but i am not sure, so any help would be appreciated, thanks alot

Radha

has anyone tried arcalion for fatigue? i have heard of this supplement and was wondering if it helped anyone and how it helped, thanks for any info,

Radha

does anyone know of any good articles that support its effectiveness and safety? maybe if i had some solid info to give my doc, he might agree to it, thanks

Radha

eating is a nightmare for me and i really wanted to try these injections but my doctor is too worried to let me try them at home and said i would have to be monitored in the hospital which i would never agree to, but you are doing it yourself at home right? guess your doctor is more open minded, lucky you! is there anything serious you need to worry about when doing these injections? any data or articles you might know of that i could give my doc might help to convince her, thanks

Radha

when i get a really bad angina attack, i have the terrible crushing chest pain on the left side and sharp jaw pain, i thought nitro would lower the bp and thats why i couldnt take it since my bp is already low, thats why i tried Vastarel or trimetazidine, but i dont know if its ok to take long term and daily or its ok just to take when you are having the pain, i just wonder if this has to do with the blood vessel problem involved in the blood vessel problem and blood pooling in EDS, although i am always sitting when it happens, i cant stand or walk at all, thanks again for your replies, its so frustrating that so much of this is unclear.

Radha

do any of you have microvascular angina or even heard of it and know if its related to POTS or EDS? i have POTS and possible EDS and get this type of angina pain once in a while, i know taking the medicine trimetazidine helps to make the pain go away when i take it at the time of the attack, i know i am too young to have any kind of blockage and no risk factors. the attack is very scarey and so painful but i dont get it often, i think because i take aspirin daily and use oxygen often through out the day everyday, if anyone can offer any insight into how this angina connects with POTS or EDS, i would really appreciate it, thanks

Radha

yes james i also feel very often like my head is not getting enough oxygen, i use oxygen very very often, i am blessed that i have my own tank and that does help the empty lightheadedness but it doesnt help to open my chest up, only a yawn does that i have been sick with many different things since i was 15 and i am 32 now! i think i have had POTS for around 15yrs but didnt know about it in the beginning, the breathing has only gotten gradually worse and now its just all the time and so unbearable and makes me so tense and upset! well with good reason if i am struggling so hard to just get a good deep breath! thanks to all of you for replying

Radha

i have terrible chest heaviness and constant problem getting a full deep breath, i only feel like i get enough air when i yawn so i constantly trying to force a yawn, then my chest finally feels like it opens up, but i do notice my breathing is better when i am lying totally flat, do any of you feel breathing is easier when you are flat? thanks for any input,

Radha

thanks so much to all of you for caring enough to reply, i dont have any yellow in my eyes, only skin, and have had liver tests in past and they were always normal, but maybe need to be retested, thanks again for your help

Radha

my doctor doesnt know anything so she is totally useless, i have to figure out everything myself, anyway, even if i have this hepatic ischemia, there doesnt seem to be anything to reverse it other than having more blood which i cannot have, since there is no medicine to increase blood volume right? i tried epogen a long time ago with no benefit, thanks again for all your caring replies,

Radha

thanks for the replies and thanks PAT57 for the link, it was very informative and helpful, so it looks like low blood volume can cause jaundice

Radha

i also have EDS and terrible sharp headaches on the left side and had no idea what is causing it and why it is always on the left side! i also have neck instablility and its too painful to touch my chin to my chest. i didnt know that EDS could be the cause, i hope you get some relief.

Radha

for those of you who have low blood volume did you ever have a yellowish tint to your skin, but not in your eyes? i dont think i have jaundice but my skin has been looking more yellow, and not just pale, and i have very low blood volume and i was wondering if there is any connection between the two, thanks for any info or input,

Radha

thanks to all of you for your input and ideas, if it is the EDS causing the neck instability and looseness, then what can anyone do? there is no medicine or surgery unless it is a herniated disc right?

Radha