andybonse

I am just using table salt and adding it to food and also just adding it to my water and even my powerades lol, I dont measure it either just put it on! also crisps have like 0.5g per bag

Hello , So my first ever treatment is on its way. 2.5mg tabs of Midodrine!! I am very excited and nervous at the same time maybe some relief from this? The past 2 weeks, I have been drinking 2.5-3l water/powerade and adding lots of salt to my drinks and food, and I have felt LOTS better laid and sat down etc..Not normal but I feel im there and almost normal!! I cant stand, well I can but I feel crap! and I feel crap after eating for a hour or so too, Now, I am going to slowly use the midodrine, like cut the 2.5mg into quaters for my first doses, since im scared of new drugs haaha. Since when I walk my hr comes down a little, I can only presume the midodrine will help and make this even more effective? especially when I get on my best dose. Whats the thoughts?

Hey guys, Finally got my autonomic testing done in London NHNN under consultant Prof Mathias! I received my results over telephone last night, Diagnosis: Autonomic Dysfunction with pots features, all autonomic responses we're normal, no postural hypotension or signs of nerve damage. He has prescribed me Midodrine 2.5mg 3-4x per day depending how late I'm up or out etc. We think this will work well for me since my pathology is blood pooling etc.. Not hyper Pots. The Prof also stated he believes as I have had this young it will get a lot better, improve and even possibly disappear in the future, which is brilliant news. So a happy Andy....for now! lol.

Thanks Dave

So had my autonomic testing today. I had a bad flarr. Hr resting 100 and bp 144/87. Usually lower and normal readings. Stuck in hospital. If I sit up my hr flys up and dizzy I get these weird flares. How can my doc treat me as my bp is usually normal but its high on the tests? Im so helpless right now....feel so emotional. I guess ill have to see what tests say and might get another 24hour bp test? Any suggestions?

yeah my salts are fine, I have 1 pint water then 1 pint powerade so mix it up throughout the day.

Hey, Does anyone here with hyperpots take midodrine?

Hey all, I pee literally A LOT, if I drink 500ml e.g I will pee like 3 times shortly after and it will be clear. Sometimes when I havent drunk lots, ill randmoly start needing to pee and it will be clear and ill need to go like every 10-15mins for like 6 times and its clear. I have no idea why???

Hey, Im going to be trying 2.5mg midodrine for my first drug! Quite excited to maybe get on my feet and feel better overall. If I take 2.5mg midodrine and I feel great, how long would that feeling last, 3 hours? I always wonder if you can split the pills and take them every so often to keep the flow of the drug in the body so you get the effect you need?

Sorry Hanice no I don't just the chest feeling!

nope, no beta blockers. I dont think I want to be on a beta blocker since slowing the heart when its up for a reason is not effective in my opinion. I believe midodrine will help with my orthostatic issues and maybe florinef and clonidine. Do you have hyperpots Melanie?

Hello, When I sit up or move or stand up my bp jumps from 120/80 say to like 145/87 or 150-160/100 on bad days. BUT if I keep still it will go back to normal, or if I start walking it will go up a little but stop for a min it will come back down to normal? I dont think its hyper pots as it would stay high right? I do have autonomic testing coming up. Just wondered.

just reading, clonidine seems helpful in this type of symptom theres hope lol!

Hey guys, Does anyone else get this? If I move position or move my heart speeds up 20-30 beats for like 2 seconds then back to resting, but as it slows down the heart beats harder and it feels tight and uncomfortable in my chest and hurts a little, not heart pain but not nice, for a few seconds. Literally small movements i.e lifting my leg up or reaching for a drink does this. It also does it when I swallow water. It ***** lol it doesn't cause bad symptoms just really uncomfortable. If you have this, what medicine helps if any? I am due to try midodrine for my pots but I worry it will make this sensation stronger? so maybe need it treating aswel.

Hey guys, What meds are you on specifically for POTS? I have been reading a lot into my causes and mine is due to slack blood vessels from eds type 3, so for me Midodrine etc would be a good drug, im still going through testing before using it though. - Are there anyone who has been treated with medicine and can work full time and live a normal(more or less) life? I'm hoping my treatment plan might go as follows: Midodrine to control the slack vessels and pooling blood = more blood returning up = less tachycardia and light headedness, depending on relief dosage will obviously need to be worked out. Possibly adding Florinef to Midodrine if extra pressure is needed. I suffer from worse symptoms after certain foods like a big mac for example or large meals - possible Octerine added if no relief from the above. Whats your medicines, how do you function with them and what do they do for you?

Thanks for all replies! I am having hope that when I try Midodrine, I will get some decent results. Since my HR only usually goes up to 100 good days bad days 115, im hoping the constriction will stop the reflex tachycardia as blood pressure wont drop as much when i first stand up and the vessels will be tight enough to keep a decent blood flow! We will see!

My MCAD symptoms are: Mark very easy like my back if you scratched it, lots of red lines for ages. Heat triggers off histamine in my heart and causes blood pressure to drop causing emense tachycardia and angina, only when stood up though, so sitting down for a bit deals with it, not treated yet either. MCAD is diagnosed through symptoms and then blood tests and possibly bone marrow, depending on the blood results. Thanks Issie, I've decided, if treatment doesn't get me walking around and doing things, Ill use a wheelchair and I will do what I want and go where I want, Ill still go to the pub and have a drink or two providing I wont be standing up for ages hehe, I like a drink and im not going to let this stop me having one now and again. I guess im in the stage of acceptance and why, im so young, i never had this i was fine etc etc, the usual crap that im now getting out of.

Hello guys, Sooo, seems I have pots and mcad with ehler danlos type 3... I guess Ill have this for my life! Kind of ***** to know my future wont be what I expected however . Im not on treatment yet so Im hoping for some improvement Any suggestions?

Regular stress tests is ok, but not as reliable as nuclear, They can actually see how well the heart muscle is perfused, I dont see why they just dont do a ct angiogram, but thats radiation, but more definitive imo. Dont worry about the dye, its just like medicine and any bad effects would be dealt with there and then, your in the right place.

I do indeed have mcad with it! Lol

mine can be 47 laid still in bed, but any movements it goes up to 60 lol. I wonder if I can use Midodrine with a low hr?

I have POTS too, My dads is 49 lol. I guess it must be normal then.

Hello, Sometimes my resting heart rate is 70, sometimes its 50. How can I take Midodrine when its 50 as this will slow it down more right? I am wondering if I need a pacemaker and 50 is not normal? I've told my cardio before my resting hr is low and he said it is fine.... So many contradictions with this crap! Im fuming lol.

I've just gone through some of the stuff, I dont have the translucent skin with lots of veins on chest, abodomen etc no facial features. My skin doesn't have extensive bruising from minor trauma, I think I need to stop reading into stuff too much, My doc would of probs said if they thought I had it . Ah well Ill stick with eds type 3 lol. Andy I've removed your link as it didn't work, Corina

Hello, My Neuro said I have type 3 eds, I was shocked as I dont seem that bendy but they know their stuff! I am worried if I have that, how would I know if I have vascular type also? Getting rather worried about it now