ladyt

i am good at that game... well my eyes are... Tryed a lilte come back, but time to rest....

I am still dens, but understand that low renin and adosterol can be a very pots thing.... And that that is conected to the hi flow vs low flow ? not that i am sure i understand what that is either.. But what dose the ang 2 test really show..? is there an artical about this for dummies..?

hi i have seen that some here use mestinon. What does it help whit for us whit dys? For when i look it up it for people whit mg...

tanx.. Whent over my head, but maby somthing whill hit if a read it tomoorw.. I think its tv time...

Hi.. I have for almost 9 years been on a high dose midodrin. 3tabl 3 times a day (one tabl being 2,5 mg).. When i starded the meds i was very ill. I was not abel to sitt for long at all. When I stardet midorin it was the first med in a long time that actually helped. But it was no mirecal med either. I was supposed to take an even higher dose, but that made my chest jump out of it self.. The first year i was abel to be moore active again, but that changed to quikly back. And a year and a half later i was mostly in a reclained possiton fighting not to be so.. My cardio had nothing more to offer, and the gps i tryed couldnt help me. So then i stayed on the midodrin. So last mnth i had a sudden change in things. A sudden rise i bloodpressure. My gp blamed it on the gutron, so i was told to lower the dose or go of it. So i did. I also got a hold on a hartrate watch that works better. So finaly i can se what my hart is up to. I dont feel it when it races etc. I ust feel the side effects.. Then i was told to gett back on the meds again. I started whit 1 tabl 3 times a day. That worked fine. Then i tryed to go up. The tingeling and goosbump never really bother me, the other stuff is so much worse. But the worst was the worsneing of fatugie i got. An hour after taking a larger dose my hart rate often goes down to the 80s but after an hour it whil go even higher. The ups and downs are ust to much... So i think a bigg part of my fatugie and some of my weird brainpain and even fogg has been cause of the meds.. Meds are suposed to make one better isnt it so..? So for once I am not following doctors orders, i am not going to take a lagrer dose midodrin. maby i am getting older and wiser, or ust more dificult It seems like finding meds are dificult and somthimes nearly imposible. I hope to find some alternative to next apointment whit a cardio. I know they will whant me back on the higher dose, but it my body. And the short time whit lower hart rathe is not worth the rest. Like to day its over a 10o resting. But i still wouldnt take a higer dose... Cause my barin is better and a better type fatuige.. I think what i have had before is was brain mud, ust somthimes a lilte more on the well cant spell the word, not so thik side..=) best of luck whit desiding if u are going back on midorin, and how high and how often etc etc..

I gett more and more aware that i am cluless, even though i got the diagnose back in 98.. So can someone explain what is valsava maneuvers? and what are they done for..? tanx

Hi.. never heard about this. I googeled it a lilte, but am a bitt dense.. So is this a illnes in it self or...?

sounds like u are deep in detectiv work issie .. And that u understand this a hole lot more than i do.. All i gett is my gutt feeling that all this hormon stuff is the key for many of us... i whant to start on florinef, but have to gett an apointment whit a cardio to do so... Hmm i have to find out what DHEA is and then if i mght have been tested for it. Since they never have tested my renin and adosterol levels before, they propl havnt.. keep up the dectecive work ... And i will keep trying to gett somthing to stick....

thanx... I have to talk to the troll living under my bed now. he always freaks out during the day time cause he is afraid of the sun. And i keep telling him there is no problem, we hardly never have sun anyway here...

love trivia...

ust woundering what is a whater depriving test? and what does it show..? I ust realised that the meds i take to make the nightly visist to the bathroom fewer is a davp type med. it wasnt that many bloodtest i took the the other day. Renin and aldosteron again, and the rest was of somthimg called of the ganiols or somthing. One being growthhormon and my fsh and somthing lke østrogen, but not quiet the same name. So what are my ovulation and growth conection whit reinin and ad..?

Thanx issie... really greatfull... I have to read it and reread it over and over again, and might try the google translater also. The translaiton is not perfect, but migth help. Being dyslexix dosnt really help either. But after years of reading sort of easy to read english lit, i gett a litle more than i used to. I miss my brain, not that is was that great in the beginning, but still.. But i gess i have to keep trying to understand. Even if i really dont at all. Somthing has to stick eventually being stubborn i gess is not all bad

hi.. How many states are there leagall mariuanna.? I am going to chech out the manitol, but daupt higly that i can gett it here.. Here its all over illigal, and I think mariuanna is very dificult to gett a hold of. Hasjis is more the thing here.. And me being such a straigth girl wouldnt know how to gett a hold of it even if i whanted. And then again i wouldnt buy of the streets anyhow, since i know that what u gett might be dangouros. One thing is that they but stuff in it. Other thing is that there is so many forms and strengths. And then there is this i think its called skunk. I saw this documatary was back. And this reporter whent on this medical reasche trial. First se smoked the old type hasjis. She got the gigles and mild reactions. But not unpleasent once. then she tryed the skunk, she got paranoid and had a bad experiens... I do wish though that medical mariuanna was awailebal here.. that will never happen thoug... I was in amsterdam years back. And i tryed the mildest mariuanna they had. It was only once and not that many pufs. But it helped whit pains, and i sleept rather well that night. Ofcorse i got a lilte high too. But not in a bad way. I react very badly to alhcol, so was fearing tha same reaction. If i could i would grow a litle my slef. Cant be any wors than the heavy duty pain killers and sleeping meds i take somthimes (ust to gett some sleep once in a while). And the evryday paracettmole use cant be very healty either.. So i gess what i am saying is, if theree is a safe way to gett it why not try it? And whit most meds it seems half of us reacts badly and half fine...

you are very brave tearose... I havnet read your story , but after typing this i will... The medical comutetys need to open up thats for sure.And many docs and nurses are religous people. And having a sientific mind isnt the problem as i see it. Cause if one have a reall sientific mind one will now that facts change, what we learn evolve evry day.. A growing sientific mind should be open and curiuos, and humble. Back in the 80 s a stomac ulscer was considerd stress and a menthal issu. Many whent truo very unnesserary treatment. Then its turned out to be the heliobactera that was the culpit. We humans have great need for order and feeling of controll. We like to fitt things into neat small boxes. We have to work against our nature more, stay open minded and be awar of our own limtations... Closness of the mind and lack of curiosety needs to be adressed.. But agan I am very sorry to hear about your ordeal, and i think u very very brave tearose. I worked a lilte in a mental hospital way back, how anyone could gett better there i had a hard time understanding. I hope u gett some feeling og closure, and i am greatfull for u standing up to the unfairness... Sorry englsh is not my first lang, so hard to find the rigth words to express what i feel.. Ps i read your story, thats ust very very wrong..

thats ust insane.. He surly thinks very highly of him self ... I know health care is way to expensive in the usa, but this tops evrything....

Hello everyone.... I was going to recherarse somthing like aldosterone and i think renin... And then this tread meet me on the forum today I did try to read and understand it. But i think my brain is gone away, not the normal brainfogg , but the same result... The 12 of mars i got a sudden change in symtoms. I am uset to sudden changes and things never beibg the same. But this was somthing difrent all togetter... Having had the pots diagnose since 98 and a worsening of symtoms and many non pots sytoms i have been very very frustraitd at times. And then at the sudden change my subtitut gp, was well usless. She didnt take any test the first week. The second sho took some bascic bloodwork, and after that she finaly referd me to the local hospital.. I was admitted and realeased the same day. But the doc made me take lots more blood than usuall.. Today I had my apionment whit here.. I was gettering all my strength, to be firm and demand some help, cause i knew the bloodwork would show nothing... Entering the ofice i felt that i had to do what i could to not gett the usual brush of.. She asked some questions and i tryed to respond the best i could... Not always easy whan so many weird stuff in one lilte body And then she asked me what hormone test i have had done before, and if any of them ever had come back off... Then she said I had very very low aldosterone and renin (pretty sure that was it).. And the rest of the test of that part of the body (dont know the english name). She had never seen anything like it. And wounders over wounders, usaly docs then demiss the find, she didnt... She said this was out of here leauge, but she had allreddy called (and probl anoid ) many other docs.. I was really thinking that a doc like this was ust of fairytails... She whanted to refer me to a nero exam, cause many of my sytoms go that way. And she would try to gett me to a good nero etc. She even said i could come back to here in six mnths so if i was lost in the system again she would help me back... Thats ust , well i am lost for words... She seems to have called other docs the best she can. She said there where other docs, but she couldnt call them, becouse of the chain of comand. Think how many patiens that could gett better care if docs ust could gett over them self..? But she, she didnt understand my illnes and symtoms, but she orded a bloodtest i never had done before (probl many i never have taken before).. She had gone back in my medical history and gone trhough all the difrent meds and bloodtest i have taken.. that in it self is a mircal.. And I have never beofre cheched my renin and aldosteron, she didnt understand why, cause they regulate bloodpressure and i evedently have very much problems there... After i left (feeling really happy, mosty ust cause i feelt the doc really had tryed), she called. She had talked whit this endo doc that spesialty is diabithis patient whit autonimc problems. And he whanted me to take some more tests and depending on what they showed gett an apointment whit him.. So I am not referd to the nero departm of the hosital now (i dont mind that at all).. And tomorrow i am going early to the hospital to take lots more blood and a empty stomac... Finaly after all this years.. I am sort in shock right now. This might turn nothing up at all. But it seems like if it does so, its because that s right. Cause now i am getting somthimg better than the x-ray vison and standar bloodtests... Sorry i didnt mean to start ranting about all this, I am very tierd and brain dead, but very happy also.. I whant to learn more about the renin and aldosterone thing... But i am dens and not the best in englsh.. I didnt understand most whats in this tread, like the hypov somthing.. So can any of u in very very simple words explain what does low renin and low aldosterone meen? Speasly when the other test where fine..? Sorry about the awfull spelling... I ust wish we all could meet docs like i meet to day.. She didnt have a clue, but she didnt brush me off or ust hide the weird bloodwork etc.. I belve she does here best... I ust hope that a am now on the rigth track to help and understanding... And even if this is another dead end, well I was proven wrong, there are docs that not only admittis to not knowing, but actually tryeds to talk to other docs and find the best solution for the patient.... For the first time my tears after the hospital apointment was happy ons If any reads trough if u manage to understand tumbs up to u

Hi... When i got my diagnose back in 98 I ust consentrated on being the heatlyest i could be. And i was in way better shape than now, and still abel to exersis alot. I did gett my diagnose in usa, and back home i had a hard time finding a doc willing to take me as a patient. I finaly found one, he is no expert and only intrested in the bloodpressure fainting part of my illnes... Since i was 21 at diagnose, and had a worsening of sytoms in my teens i sort of hoped that i would be of the kind that would grow out of it... I whent on lots of meds trying to stop the fainting, the fainting was then the thing others could see , but i had lots of other stuff at that time also... I tryed a lot af alternativ treatment too, alot... And i keept exersising the best a could, but it wasnt long before it ust got harder and harder.. And then the years whent on, and i didnt gett better. i got worse, even on better meds. And i got other symtoms stronger and stronger.. A part of me whanted to hold on to the idee that this i would grow out of... But a part of me knew that i have somethimg that causes my pots... So to the extent my poor foggy brain and weak body lett me i tryed to seek solutions. Not often and not much, but still alilte. And i tryed to seek te help of docs again. I even got my self tested for mastocytosis, bone marrow test. It came negative. But my allergy pills does help me, and no allergys. Last year when i starded the allergy pills that was a turn for me. In many ways the allergy pills is a greater help than all other meds i have tryed.. My cardio suspect that there might be a nero sort of thing at the base. But the nero i was referd too (since she was so opend minded) told me that i belongd whit cardio docs.. So its so sweet that my papers says i had a nero work up.. She might have had x-ray vison, and she did read my medical history... But a nero work up it wasnt... I had a twist in things over night some weeks back, and more than ever i know there is somthing causing my pots... I am going to the doc tomaoorw.. And a stupid part of me still hopes that this time, this time they will try to figure out why and whats happening... I gess hope is important.. But i know how bad i always feel after, each time ust a lilte more deprived of hope... And each time a nother entring in my medical history... And more often than not, more wrongs in the strory than rights.... There are many reasons for pots, from viral to eds... I would like to find mine, i am tierd of fighting gosths.....

hi.. I did have an oregon watch some years back, i had to turn the first two back. After the tird one i realised it worked on others but not on me. Last week i got a polar one. So fare it works better, but it has gone a lilte crazy the last two days... But for the first week it worked very well... I must add that i cant wear normal watches, cause they thend to fail or stop working... ust another weird thing i gess But in the types we have here polar is suposed to have the best one for weird hart rates etc. And the cheapest as the same basic as the most expensive polar. the dirfent being the more expensive has more and more extra stuff...

So what is normal resting hartrate? and what is not? personaly i dont have a clue... I know ust whant thing my puls/hartrate has always been weird. Not that i have really noticed it in my chest much. More like baffeld people when taking it for fun or in gymclass when younger... Like i could have a very low puls at resting, but also to high... And then it would be higher when ust standing and go way down after running a lilte... I tryed watches some years back, but they really couldnt handle my body. last week i got a new watch, that seems to handle it better. But still not when it goes fast or somthimg... But i never feel my hart race. Like earlyer to day i whent from 95 to 140 when standing, and feelt nothing in the chest. I do feel other stuff ofcourse.. But the past week the few times it goes under 80, then i have feelt my hart. Sort of weird feeling, not really slowing down but beating weird.... I have dealt whit this for years, and it still baffels me... maby some day i will understand it all much better.... And ust woundering how many of us whit pots/dys feeles their hart race? and how many not..? and why this difrense? have a wounderfull weekend in any way u all can...

congratt....I would love to hear about how the apointment whent.... My new plan is to find docs whit knowlege either in uk or usa.... Cause here we dont have them... And i am avere of them being very very few and far apart both in usa and uk... But they seem to actually exsist even though to hard to track down, and i would imangend very expensive to use... best of luck....

tanx for posting this Its ust so sad that this seems to be the rule, and not the exeption... Rigth now i cant even seem to gett the docs to other than nod and add are u under stress..? They seem to think they have x-ray vison... I know i am not alone in this, and so many of us thinks that when we gett a diagnose at last we will gett some better help.... And then we dont... I hate the small boxes docs try to fitt us all inn... And the wounderfull if u say you are not stressed, then u are in denial, if u say u are well then thats why... From anything like low bloodpressure to high, pain in any forms, nausa, dizzynes, constipation etc etc....

Hi.. It seems like doc always seek the easy way out. i am glad u finaly got the rigth diagnose. And that u have a huband that not only backs u up, but also have the background to say, no its not anxity.... best of luck

Thats great Ernie So to the docs that dont see the point in trying out meds etc, our story tell them wrong=) I used to dance, one of the last things i did when could still stand some more up was dancing and horse bakcrinding... Problem was that many wouldnt danse whit me, it freakt them out that i suddenly lay on the floor but the last tango class i attended it was nice to se the other dance, but my body ust couldt deal whit it any more... The last horse was a very kind one, the stoped when i fainted or gott ill, a wounderfull horse.. I actually are going to start terapi horseback riding now, i have been one time. The smallest lilte creature, not such a long way down then. And i had two on each side of me, and one infront of the horse, i feelt a bitt impearest for a sec, then i couldnt care less, I was on a horse i hope u stopp by here once in a while and tell us how u are doing. Its wounderfull news... (ps again sorry for my spelling, but my weird word creations might but a smile on someones face, )

hi.. I whent of cow milk years ago, when i draw the conclusion that thats what made me trow up and gett this weird sort of migrain. I have tryed to take a lilte milk at times, but found it to worsen my dys sympt and pain in bladder and rest, in aditon to trouth burn and such.... i do have a lilte lactose in my one med, but the other effects balence it out. I do tolerate goat products, so i use white goat cheez on pizza and such. And find that when prepering all the food at home its rather easy, cause there is so many replacment things one can use. In the beginning there was only soymilk to gett, then risemilk. Now we gett oatmilk, and thats my favorite...=) Ofcourse eating out is dificult, speasly in a really really diary loving contry... So in that way its maby not so bad that i dont really leave the house that often i do take calsium tablets after cutting the cow milk out. when it comes to goatmilk, some tolerate that fine, others not.

normaly i am one degree lower than the norm. i will have sudden rise and fall back to normal low at times. And because of weird turns of late i had one deegre higher temp. The last to days its being going up and down again.. My gp demised me when i told here that i had a lilte higher temp, since i was whit in, and only a lilte elevaited than what the normal temp is. 37 c.. I had 37.5 c... From what i can understand a lilte lower or higer temp is very comon, and for people that has it its importan to know, so they can tell when the body temp is really off.. And then hope that the doc actually lisen