ladyt Posted March 17, 2011 Report Share Posted March 17, 2011 Hi I hope that some one here can be abel to help me, cause as usual i sort of stomp the docs.. And since i am to travel to spain next week i need to find a way to handle this in some way. I Got the dys diagnose back in 98... My main issue have been the tacky and some lowe bloodpressure. I have had sort spells of high bloodpresuure but not like this...I woke up saturday feeling difrent. I had actually sleept quet weel during the nigth. But i had this weird headpain. I did go into the shower and feelt weirder and weirder, and after the shower i was shaking etc, nothing new, but still very difrent. The headac was difrent the comp of symtoms was. Then i layed down, the headace grow stronger before it disepard again. And the weird thimg, as long as i layed still i feelt fine.. And that is weird. I couldnt but my leggs down or move my arms much before getting weird sytoms. But laying still i feelt fine, which is also weird. I was abel to read i felt no fatuige at all etc etc. It stayed like that sunday too. And almost similar from then. I Cant sitt long or stand long, stand long is nothing new, but sitting is usaly ok when i feel fine when laying down.. I whent to the doc today... My bloodpressure was 160 somthing over i dont remeber when sitting, standing up i was 170 somthing over a 109... By puls ofcourse whent from 90 up to over 115 etc , but thats normal...She called my cardio, he didnt know why. I am supposed to lower my dose of midodrin. But My bloddpressure is fine or low when laying down... i have been on midorin about 9 years so shouldnt really be side effects.....Any idees anyone....? i am used to deal whit low bloodpressure, and the the very seldom high, but then its not like this..I also have a difrent stomac pain, and my neck is geting painfull too......Feeling a hole difrent awfull rigth now... I dont know what to think, and the doc ust said well u will lower the meds and that was that...So now my hope for help and answers lays here at the forum, u are usaly a hole lot more helpfull then docs.... Quote Link to comment Share on other sites More sharing options...
ladyt Posted March 18, 2011 Author Report Share Posted March 18, 2011 hi again..i am starting to gett a lilte freaked out, i normaly dont gett that way. But the change happend over night, from one thing to another. A distend family member had that, the rising blodpressuer, his body couldnt handle that.I searching online yesterday, nothing nothing nothing... The weird thing is laying semi down (i never lay flat) and whit feet rasised, my brainfogg is gone. The thing making typing hard is my brain hurting and my hands. ...so any one experiensed this...?Ps read in dr grubb book that hyperadrenic pots gives high bloodpresure, i know there is not that many whit that pots , but if there is any one whit it in here what to you do meds wise.? Do u have normal to low bloodpressure when laying down? And how can this change over night?I also have had i rise in body temp. I am normaly 36 c to 36.4, now i am 37 c (which i know is the normal for so called normal people) and up to 37.5. I have been growing in thirst, saturday and sunday my eyes would gett red on a sec, now it varies a bittt mor. I have pins and needels and a sort of your feet is sleeping feeling , that increeses when sitting (and standing), and if i use them. Like typing now..I am used to a freakshow inside my body, but this is difrent. A difrent headace etc, and then the high bloodpressure..I could really need some sound advice, well any kind of input really.... I am rather desperat Quote Link to comment Share on other sites More sharing options...
firewatcher Posted March 18, 2011 Report Share Posted March 18, 2011 Casper,I am one of the Hyper-adrenergic POTS people. My BP goes up on sitting, and up more on standing. One of the things that helps me is hydration; the more dehydrated I am, the more my BP goes up. Paradoxically, if some of us with hypertension get saline, our BP and HR go down. I have also noticed that my HR and BP will go up before I get sick with a virus. It can take several days for the virus to show up as a cold or flu, but my HR and BP are high. With the different headache and the rise in body temperature, you may be getting sick with something. Try to drink more fluids and rest, but keep track of your changes. It may be a short-time thing or it may be a reason to go see your doctor. Quote Link to comment Share on other sites More sharing options...
comfortzone Posted March 18, 2011 Report Share Posted March 18, 2011 Hope you are under the care of a doc..... I have the high b/p - low in my youth - but now high and extremely hard to manage with dips low daily that make me have to lay down --- not orthostatic hypotension at all.....but rather it goes low with standing and light housework for an hour or so. Yet, like you, high in the morning 140/106 not unusual - in spite of: a beta blocker, a diuretic and clonidine twice a day!So what do you do.....well I had all the workups to rule in and rule out cardiac things and I'm good........the 24 b/p test showed what I already knew - very labile b/p -- all over the place. So while many many dysautonomia patients are put on meds to raise blood pressure - that is not a class of drugs I am allowed to take. And one thing I've been told is I need to hydrate at least 100 oz of water a day - preferrably more - and of course I've never been able to get more than coffee in the morning in before maybe a diet soda in the evening - so for me it's challenging to get even half the recommended - but I try.I guess the doctor will work on in your case what's causing the dysautonomia or what's causing at least not helping the high b/p - for me - losing weight still, maybe reducing salt though I crave it - and getting imaging for other things that might contribute - nephrology workups can tell if you have essential hypertension or hypertension from a secondary cause - say a tumor or problem with kidneys etc..So keep up with your health care provider - with me frequent tweaking or at least monitoring of meds is necessary... Quote Link to comment Share on other sites More sharing options...
ladyt Posted March 18, 2011 Author Report Share Posted March 18, 2011 Thanx for the reply=) Ust woundering what meds are used to controll when it runns high insteed of low? For me its been mostly low, or ust the underpressure going high. is is totaly new for me....But my puls is ust as crazy as always, somthimes worse, but same old same old really...=) Firewatcher do you travel by plane?... The last two days i have been lowering my midodrin dose, the only meds that i have been taking for my dys , my other meds are pain meds allery pills (dont have any, but they help) hyper bladder pills etc...I live in a contry whit so called free health care. Problem is small contry, and the docs are cluless an dont like to admitt it. I have been going to this cardio, but he is an pacemaker spesialist, and is ust intresed in if the meds is damenging my hart. My old gp was cluless, and here subtetut seems to be likevise... Its like they ust whant to put me in a closet and forgett that i exsist... Sorry about the complaining but i gett very frustraited over the health care i resive, well the lack of is a better word... Spesaly when suppsedly living in a contry whit such a great health care system. So fare on the inside it hasnt been much great for me. Ust lonly, The docs can ust give me a prescribtion block and the care will be the same.......I dream of many things but when it comes to docs i dream they could learn to work togehtter in the best intrest of the patiens health, that they would widen their mind and curiosety and even be open when the patiens doesnt fitt eny of their boxes learned at school...And that they would se that giving a higher kvalty of live to a cronic ill person is ust as cool as saving some ones life or curing them....I have been insanly thistry of late, and not running to the toilet more. Actually a lilte less... Maby u are on to somthing firew, maby i am having a virus or somthing.. Ust hoping it disepear... I really reaally whant to go on a real hollyday, i used to dream of traveling all the time all over the world... Now i ust whant to spend a week in barcelona....=) I send most my time in bed or in my livingroom.....I was used starting to feel some what of control of my bizzaro twisted body, ofcourse not really, but ust starting to se a sort of system to the crazy..and then the o no thats never ever going to happen... tanx again for the replys I wish I had a magic wand to wawe over us all...=) then i could travel around to all the dys and potsys and be the fairygodmother, bringing stabel puls and all the rest to us all... Quote Link to comment Share on other sites More sharing options...
ladyt Posted March 21, 2011 Author Report Share Posted March 21, 2011 Hi again.... I am now off gutron. my bloodpressure is now all over the place . After laying down for a while its normal. But the longer i am uprigth in some form the longer it take. My puls is getting more and more out hand. I know i have days where my hart beat goes from, very low to high over and over i again. I use to think i had migrains then.But it seems to be difrent now. Then again i havent been using my puls clock for over 3 years so My puls seems to getting more and more out controll.Even when laying down, in a difrent way from before. yesterday I had a friend over, not the wises thing, but i was laying down the hole time. The pain in my body gott worse and worse, and after it was straigth to bed. I took some heavy duty painkillers and rested. It helped eventually, then i had to go to the bathroom, the pain gott worse again, and my eyes got red really fast. I had to take the heavy pain killers again. Luckly my bladder is much less hyper than it usuall is. In the night i had to go (but luckly again only once, which is really never happending otherwise). My pain whent worse again, and stayed whit me the rest of the nigth. Now layong in bed its not so bad, not gone, and increasing when typing. But i know it will increes when getting out of bed...Does this happen to any of you? And have any of u had a change more or less ower nigth...?Hope u all had a nice weekend... Quote Link to comment Share on other sites More sharing options...
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