andybonse

I get mine when i get into bed at night as i get warmer vasodilation occurs so must be blood pooling or some sort of autonomic vessel control blood flow to lungs. I get it after being up right too long too and also my head feels weird when i get it light headed again blood flow imo! It ***** i hate it ive got it right now! My main symptom that i hate lol

I'll join the club, I get these episodes all the time like I need a deep breath but cant get it, its horrible

Hi All, I want to know if anyone else gets theses changes; Once I have been sat up for a while, I start to feel weird and weirder in my head, so point of the post, when I decide to then stand up, - I will stand and feel the initial drop of blood pressure in my head and chest, no pressure just feel a bit of a headrush(this has decreased since florinef thank god) - HR will raise a bit as mine doesnt go to high, sometimes it does though, so about 20 beats maybe. - A few seconds after this my heart will slow down and i'll get a strong pressure tight feeling in my chest right in the middle/upper as if everything has tightened up. - Pressure goes after a second its only brief but horrible feeling, then the HR speeds up again I can only imagine one thing, the ANS has tightened up the vessels it can to compensate for the drop but cannot maintain the pressure as more blood pools so the HR goes up again This is actually an excellent response from the ANS and it shows it is actually working. - I will then sit down, and again get the brief horrid pressure in my chest, maybe because the vessels in the upper body are over constricted and sitting forces blood back up which causes a pressure? - Same when going to laying down Doing these slower helps but I really hate it, its so horrible!!! Once I lay down, its as if things dilate and my head comes back and chest doesnt feel tight anymore, it takes a while but its a relief when it does!! - The horrible head after sitting up a while is in my opinion due to too tight vessels trying to keep the pressure but in fact is reducing the blood flow. Vitals during this: Sat: 120/66 HR 70-80, usually 64s but im sitting a little higher now. Standing: 120/80 Hr 100(bobs up and down 90-100-90-100 etc). Sitting back down: 130/80 HR comes down to normal, bang, the pressure increases so this show the tightening I explain above. Sitting after 10 mins: 120/66 un-tightened I wonder if i'm right, I cant think of any other possible physical reason. I do apologise for these posts

Each time I go up half a pill ill add 10meq, I want to get the slow K version as the ones I have are dissolve in a drink and its just time consuming taking 2 a day, plus a movicol, plus my other pills. I feel like my schedule for the day is timing pills!!

I'm not diabetic either, had plenty of tests plus got my own little pin prick to test .

Doctor has told me to have 2 x tablets I dissolve in water a day of potassium 12meq per tablet so = 24meq per day Also ill be eating more potassium and have another supplement I got from a health store to add to my drinks. Hopefully this will get it up and then I can increase my florinef dosage!

Thanks, well I have been trying with food, 1 pint of milk per day, fresh orange juice, tomatos, powerades, a banana a day, veges etc. It was around 3.6-4.1 but maybe .1mg lowered it? Or maybe I need to eat more? Anyways I get weekly tests, so I might do the supplement just for one week get it to a more normal range and retest a week after, so the differences etc, My concern is I want to go up to .2mg florinef so if its already low, cant allow it to go even lower!! One thing to the next I swear

Hi, I have been on florinef for 2 weeks now .1mg, my potassium was stable on lower doses but got my blood results from last Monday and its 3.2 normal 3.5-5.0. I have been drinking an oral supplement of K 12Meq per day, eating lots of potassium foods etc so I'm concerned my GP is ringing me this afternoon but they dont seem well up on florinef and low potassium etc so im hoping they will give me a supplement? Does anyone know what type of Meq is usually need for it so I can speak to my doctor about it? Pretty concerned about low levels!!

I had an asthma attack when I was like 5, never after that and not really any symptoms. So I think mine was due to EDS some how! Recently though, I get these episodes where I feel short of breath and cant get that deep breath to satisfy me, its not in my head either it just comes on. Its one of my worst symptoms!!!

Haha, yeah I'd love a puppy , I have a pin prick kit here anyway, it does come on quickish, Ill start feeling verrry bad in my head, its hard to explain. Always thought it was POTS, glad I checked my numbers!! So today got up bit earlier, ate some cereal and milk a banana and now orange juice, feel normal apart from the pots stuff haha but a lot better than no fuel!! I want a puppy now hate you!!! lol

Hey, Every morning I feel terrible then ill eat a banana and a waffle and some spaghetti and feel ok for about an hour, then ill feel really terrible in my head, feel so sick etc. Took my blood sugars it was 3.6mmol omg! I freaked out!! Ate plate of chips, powerade with added sugar and a apple now its 6.3 I feel fantastic compared!! Cant believe its another thing to add to the list ><, who do I speak to about it GP? Autonomic specialist in this? Freakkkinggg lol I was like quick quick!!! Bring me sugar!!! Buying some choc bars now ;P

Exactly, when im too cold this happens to me too, so I thought the exact same thing! the horrible weird feeling I hate that! I get it most mornings too. Haha spooky! Yeah I think this is more than just postural now, needs to be named changed. AlphaBeta Disease! yay lol.

immunosuppressive sounds ideal if it is antibodies to look into, you have a positive ANA and neruopathy which would highly indicate some autoimmune antibodies playing mayhem maybe, obviously an ANA can be positive in normal people, but with a neruopathy id like to rule other things out. Especially if you tried an immunodepressant and felt better, you would then be in a better position to fight for IVIG maybe?

Hi all! So with my amazing brain running on not enough blood ive come up with a new theory! (sarcastic about being amazing lol) The new research shows alpha and beta blockers are being blocked/attacked via these antibodies right? So, Ive figured out why we may feel so rubbish with normal vitals: Arteries dont constrict ---> leasts to flood of adrenalin ---> causes overall too much vasoconstriction in places such as the brain. Now the above, causes us to have a normal heart rate and blood pressure say sat down, but we still feel very horrible in our heads / chest. Now imagine because the vasoconstriction has occured vasconstriction reduces blood flow, so if its constricted the brain, the blood is getting there but not enough because the arteries in the brain need to dilate to allow enough perfusion to function and feel properly, but it now cant dilate because its over constricted and the beta receptors which allow dilation are also not working! Would also make sense to me that this is why we get chest pains and shortness of breath, reduced blood flow, would explain normal vitals too. Just a thought. Or maybe over constriction on the top half but not enough lower half so its doing the total opposites. random post, I get bored with all this free time Would make sense to me!

Thanks Ana, So did it also help with light headedness and dizziness?

Side effect of zyrtec is tacy but it doesnt do that in me! Try a different h1 blocker! Fenofexadine is usually used for mcad gp can prescribe

to people on florinef, if its helping you and you can tell, Is your standing hr lower than without it? Thanks

Its due to valsalva reflex, when you talk the pressure in your chest increases so the heart will slow down and make you feel rubbish as your bp drops when you release that pressure and the heart speeds up again, I get it, its horrible, its worse when upright of course, its actually a healthy sign your ans is working as silly as that sounds lol. Obviously get checked out by a doctor.

Florinef can stop the big jumps in hyperpots yes, so its used in any type just have to monitor your bp etc.

Been on florinef for few weeks now and built up to .1mg a day for 4 days so far. I has helped me deffo over the weeks but my bp has not changed. Still feel rubbish, maybe its just i need to get on the full .2mg?

I get this, I am having one now, but mines not to that extent. I was feeling really good today, then suddenly I got a huge anxiety and fear and felt really weird, its a horrible feeling like your going to die for no reason at all, thing is my vitals are perfect during this lol resting hr 66, bp 120/70 etc, I think it might be a sudden release of too much adrenalin from pooling blood or something, it lasts about an hour or two then its like a different person. I get it quite often, just no idea what to do when it happens, I also urinate more when it happens so all points to adrenalin to me. Hate it!!!!

I have a theory that, because we cant vasoconstrict in the lower body, the ans tries to constrict the upper body which causes pressure and reduced blood flow to brain causing symptoms.

I have thought about chiari but them headaches are usually at the back of the head! I have a MRI at some point, just need to feel well enough to go for it :/

feeling more normal again today, im on 3/4 pill. I get a pressure at the top of my head and a tiny headache, even before florinef wonder what that is.

Hey all, I was on 50mcg florinef slowly moving up each week and was feeling great, this week ive got a weord dizzy feeling in my head, makes me feel sicky too. Anyone had this with florinef? Not sure if its this or not.