I'm 36 and 4 years ago i started get dizzy spells, blacking etc.. then i started getting very tired.. had no energy very lethargic, my legs used to swell at that point.. also when i would carry bags or climb stairs my heart would miss beats or jump around and i'd feel exhausted...after a couple of years of suffering by which point i had become extremely unfit, i was diagnosed with extreme chronic low blood pressure.. at night it was dropping to 50/40 and in the day was around 60/50.. some months later and another blackout linked trip to the A&E dept.. my sugar levels had dropped also now.. *(i should mention i've been reactive hypoglycemic since i was a child) a few blood tests later is was uncovered that i was lacking salt.. and that my red blood cells were small and that i didn't have as many as other people.. so salt pills later and fludrocortisone i was sent home.. i was tested for addison's disease which came up as a no after an mri scan i was also tested for an insulinoma. What's funny is i have nearly all the symptoms of addisons disease apart from the darkening of skin.. the test they did was sent off to india.. i did have a little more energy but not alot.. i was still getting very dizzy and exhausted.. which then leads us to a ton of tests later and my last major admission into hospital last april.. i blacked out and my sugar levels were really low -3 (hope that sounds right i can't really remember at the time, when i have bad turns i get confused and can't focus) anyway once again i am tested for a tumor which shows negative, also for diabetes which is also negative.. meanwhile i have also developed a really bad new symptom on top of the legs swelling a little.. which is my feet turning blue/black due to blood pooling.. ( i had had this a a few occasions in the past, especially my nails in my hands going blue etc)
Anyway one evening in hospital i really wasn't feeling very well so i called the nurse.. they took my bp which was 70/45 but my heart rate had dropped from its normal 55/65 to 46.. i was rushed to IVU as i felt uncomfortable in my heart and generally felt very unwell.. on being there for 4 days on 24hr monitoring.. one day my heart rate keep slowing day to the point it dropped to under 28 i was given an injection to speed it up.. 153 bmp 10 seconds later and the worst experience of my life i slept... they then decided to put me on midodrine aswell as the hormone steroid..
anyway i seemed to get better.. i moved to LA and the weather definitely seemed to help my condition.. bearing in mind still no underlaying cause had been found.. i had the odd day but on the whole a day in bed seemed to fix it...
which brings me to the present.. 8 weeks ago i went to see the specialist whom i feel looks on myself and my condition as a bit of a joke.. as i think he judges my condition by the way i look and i am a lady who dresses well and looks after herself and can cleverly do a natural look makeup to give myself colour even when i am very pale..anyway he decided that we should take me off the hormone steroids and double up the midodrine dose.. which i was over the moon about!! anyway 3 weeks ago i started to feel tired again.. i've also noticed my underarm hair is patchy some of it has stopped growing.. my legs blood pooling has been really bad the last 4 days and 3 days ago i woke up at 3am with discomfort in my chest.. i did my bp and it had dropped from it's normal 100/70 to 84/54 and remained like that til morning when i took a dose of midodrine.. i've been resting and had hoped my condition would stable itself out.. only as i type this my heart feels skipping.. i have my legs elevated as if i put them down they pool.. i'm also getting hot spells, sweating and my cheek are flushed i also have a mild pain in my stomach which is bloated..i'm getting goose bumps chills more which i appreciate is side fx of the midodrine but to be honest i don't reallt get that a year later.. i feel like an animal that just wants to curl up in a ball.. as i keep getting a pain in my stomach and the goosebump chills feel weird.. i've noticed when my bp is down my heart rate is speeding up to over 100.. i'm guessing this is due to the fact it's trying to get the blood going round either that or it's freaking out!!
I just wondered what you thought might be going on?? have i caught a bug that is messing my illness? am i verging on my body going into crisis?
somedays i do wonder if there is something seriously wrong with me.. and if the other automics are going to go.. i wish i knew what was going on!!
I'm in LA with no medical insurance...
here's a full list of my illness's
autonomic dysfunction (tested for.. apparently it's only the non working function of constricting the veins that has gone)
Ehrlers-Danlos Syndrome (EDS) type 2
as i child i had serious renal problem
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