andybonse

Yeah, thats why my doctor is a bit hesitant about it! I dont get why we get these symptoms if blood pressure is normal from legs up to arms Maybe our BP is only that high / normal because or veins are constricting more than a normal person because of less blood? so maybe forinef would balance it out! The salt doesnt directly raise BP, its because of the amount of fluid it retains, so maybe it would help us. Still surely we could try a small dose to see? Imagine it helped?? I plan on doing 6 months exercise 1 day 30-45mins cardio and the next using my resistance bands repeat for 6 months, and then try florinef.

Hey, Did anyone start Florinef despite having normal blood pressure readings? I think I have a low blood volume even though my bp is usually 120 but my dystolic runs low 49-75. When I down 500ml my heart rate is a lot lower standing.

So had my phone call with my doc since midodrine made me dizzy and worse. Doc wants me to try mestinon but after reading mlre about it I think not. Ive decided meds are not going to help and im on the edge mentally not and depression is kicking in.

Thanks for your reply Chaos, The blood brain barrier would not be involved, once Midodrine enters the bloodstream, the alpha a1 receptors are located in the vessels in which Midodrine stimulates and these receptors are in the same vessels which are in the brain. My veins only stick out when hot and hang by my side, but if normal/cold they don't. I wonder what my specialist will prescribe next, can only assume Florinef but we will see! Most of my blood pools in the splanchnic vessles but I highly doubt he'll let me trial Octreotide at present.

Hi guys, I've been on Midodrine 2.5mg a few weeks now and tried to up the dose to 3.75mg, but as I took my 2nd and 3rd dose, I'd feel weird and dizzy. Not a nice feeling. So I'm not taking it any more and have an appointment on Monday to discuss this and see what else I can try, pretty let down by it not working, since I have EDS type 3 caused POTS. --- I've been reading on low flow POTS, My hands, feet, lower legs are always freezing. When I have blood drawn my arm runs out of blood. This tells me there is excessive vasoconstriction of the extremities, in low flow pots this is what happens, When I get warm/hot my arms vasodilate and blood fills them and I can see my veins stick out. Now I have this figured out, I assume either or both of the below is the cause and my body is trying to compensate; 1) Low Systemic Blood Volume 2) Splanchnic Blood Pooling When the blood fills my arms, or I eat, my heart pounds and goes faster which proves evidence the above points are happening. When I sit up, not stand, I go light headed a minute, so I can only assume a low blood volume is effecting this or the gravity is pulling blood into splanchnic reserves from the thorax and brain. Now, because Midodrine is causing me to be dizzy and headachy, I can only assume the brain is also more constricted to try keep blood from being pulled down, so therefore Midodrine is actually over vasoconstricting there and less blood is getting perfused. Now an important point would be, people would call this a hyperadrenic subset, however it has been shown in research NE levels may also be of normal levels. We could also say hypovelimia would cause low BP, but not necessarily since our bodies can compensate quite well hence the vasoconstriction may be keeping the blood pressure stable, now My Dystolic blood pressure reading is usually quite low 40-70, now a low blood volume would show this sort of reading, especially when supine. What do I plan to do: 1) Angeotensin ii and Aldesterone blood tests 2) Autoimmune nuclear antibodies blood tests(ruling out other possible ailments) 3) Mast Cell blood tests due to other symptoms 4) Ideally trail Florinef to expand blood plasma Please discuss what you think! By the way I am not asking for medical advise, I just want to discuss my theories. --- Andy.

3.75 then 2.5mg and then 2.5mg not a total of 3.75 haha

Well I always needed a deep breath feeling for years now not always this bad though. My hr and bp is perfect when it happens. Today I took 3.75mg my resting hr was 62 I stood up and it went to 70 I mean wow, I can stand and do stuff its amazing. Im working up to 5mg. Today my last and first dose didnt cause it so maybe its not midodrine. I said ok i wont take it today and see but ibfelt so bad without it I forgot how bad I was lol.

Thanks Chaos, Im like it without it but its a different feeling lately maybe just a normal thing lol.

Hey guys, Anyone noticed their breathing different on midodrine? I have noticed recently it feels like my lungs are half full and i take smaller breaths, it happens a few times a day usually when on Midodrine so not sure if its that or not? Really annoying since Midodrine really helps.

Hi, Is it normal to be warm and not sweat all over? I have EDS type 3 and autonomic dysfunction. When I'm fairly warm my arm pits, hands, feet and...other area lol sweats. Never like my chest or legs or arms etc... I do sweat on my back when exercising laid down on the floor as my back gets hot. I just worry because heat vasodilates me lol.

Hi guys, So today is day 3 since I started Midodrine, today I started with 1.25mg and didn't feel anything, so I took another 1.25mg 3 hours later and...wow! I felt some weird rush throughout my body for 5secs asif blood wooshed up lol, I likeeed it! Then I felt awesome, I actually stood and walked for the first time in 2 months, no dizziness or weird feeling being up right, my hr went from 70 to 90!! Then as it got to 4 hours after it wore off I started to feel my old self, I took another 1.25mg was a bit bigger tho and nothing..well It helped with some symptoms, but not the same benefit? The small doses are - Controlling my pounding HR resting, usually if I move my body my heart pounds for a secs, when i'm on my Midodrine I feel like I have no heart its amazing realised how ill I am, I can breath so much better, less shortness of breath, i've never felt so good. My question is, why does it sometimes work more? Maybe because i'd eaten on the latest dose so more blood in the gut so a higher dose needed? Obviously these are tiny doses, and I am working up to 2.5mg full tablets in the next couple of days, i'm giving my body chance so I dont have a big shock with side effects etc, ive felt a couple of tingles but nothing big but to know its in me! Does this drug stop working? will **** big time if it does? Does anyone use it with florinef and feel greater benefits? cheers! Andy

Happend to me, I was like this cant be flat? its more than flat? lol.

Bradford born and bread, living in Oxford now though! You really want to see the best in the UK, Professor Mathias in London. He surely knows his stuff!

Octreotide combined with Midodrine can lower the standing heart rate effectively than either drug alone and is a good therapy. Your hyper response may be due to splanchnic pooling due to vasodilation in that area, if you have cold hands and feet this can also show me that the body is applying extra vasoconstriction to these areas due to lack of vasoconstriction at another area. hope that helps!

This is due to your low bp, when you bend and come back up with low bp it causes the woozy feeling. Your bp is low. Atenolol also lowers BP and sounds like the culprit to me. Increase fluids and salt, speak with your doc about the Atenolol. But all your symptoms, low blood pressure. You may feel better on Florinef or Midodrine, especially if you need to be on a beta blocker.

I cant see how Florinef would be the cause, if your HR is decreased its increased your blood pressure so light-headedness wouldn't occur. Possibly a flare up? Whats your Blood pressure before Florinef and after, these can be good to see whats going on, Also welcome to the forum! Can you give us a brief of your condition, diagnosis, drugs etc just to figure out whats going on! Andy.

Hi All! I've finally got my Midodrine 2.5mg, at last my first treatmtent! Yesterday I had 1 quarter of 2.5mg tablet as I'm nervous of new drugs, but then I had a flare up the same morning so waited that out until today, I tried 1 quarter this morning and another quarter 2 hours after, so far I felt a few little tingles but that's(gave me a quick woah and excitement moment) it, now I expect nothing from these tiny doses of course but to feel safe taking more I personally have to take little. So tomorrow i'll take half and then a quater etc until i'm up to 1 tablet. My question is, is it still ok to take them if you have a headache? Say you've been on the PC all day or listening to loud music and you get a headache, can you still take your Midodrine? --- Ehlers Danlos type 3, is my cause of POTS, I've come to terms, I've got this and will hopefully get some decent treatment to feel more reasonable. What other drugs used in combination with Midodrine would help with this subtype? I think if we use Midodrine say up to 10mg, and it helps as it should tightening the vessles which are more stretchy in EDS, and then add a drug such as florinef to increase blood volume, this should have a decent affect on orthostatic tolerance. Of course, I dont want to be on steroids at 22, but if needs be needs be. I'm just trying to figure out a decent set of drugs I can talk to my doctor about, he will know of them and only talk about them if he wanted me on them, but I like to learn, I like to know whats out there what I can question him about trying in the future. As I see it, there must be some way to get relief from these symptoms of course not 100% but a life more easy to go through.

My BP at home is always 110-130/50-80 so always normal, at the hopsital it showed at 136/77 as a median, so he gave me the Midodrine, I think its good as my normal bp is lower but i always feel rubbish even when its normal.

Thanks, It botheres me in the fact my heart beats hard for them seconds and is uncomfortable I hate it and light headed depending on the position change. I can only assume the blood flow to the brain is reduced so my heart tries to increase bp to compensate what do you think on that theory? My doctor is the best in the uk and ran all the tests so I trust him.

Hello! Midodrine is now ordered and waiting for it! My bp when sat is 120/70 say and if I lean or change position my heart rate goes up to 105 say from 68 and my bp will go to 140/75 for 30 then all goes back to normal. my hard also beats quite hard doing this. Its asif body movements make my blood get pulled down by gravity. Do you think this could be why? Im hoping midodrine will smooth things out its so uncomfertable

Hello! I just wanted to ask those with EDS type 3, what type of bends you can do. My Professor said I have EDS type 3 or Hypermobility, obviously both are the same? NO family history of EDS Dad is healthy at 64 but has mitral valve prolapse, he didn't have it throughout his life though Mum is 55 Healthy 2 brothers 30 and 34 both healthy as pie me = what went wrong!!!! I had no symptoms until 17 and they didn't get bad until now 22. My only symptoms is Dysautonomia/POTS, no joint paint or dislocations etc. Do I look bendy as far as freaky to you? 1)http://i39.tinypic.com/awewz7.jpg 2)http://i40.tinypic.com/280vdbp.jpg 3) I can also pull my thumb to my wrist, hurts a little tho!! I used to be veryyyy fit and growing up always stretching at karate etc, maybe thats why I can do the above? My diagnosis is: Autonomic Dysfunction EDS type 3 Mast cell activation disorder(not yet confirmed) So, my general question would be: What if I dont have EDS and in fact there is another cause for this. Is there any particular tests you would recommend based on the above that I should/could have done? I'm not asking for any medical advice just opinions. I have read about anti-nuclear blood tests etc.

I took the bp after moving but was still while taking it. Just doesny make sense seems I wont take any treatments My bp is normal and goes up not too high though with movement so how can I possobly be treated I give up.

Hi guys , When I had my 24bp monitor the other week and my ttt, I kept seeing readings on the arm cuff blood pressure of 140/80, now when professor Mathias called me he said my bp was low normal, i'm confused, unless the 24h bp and the continuous beat to beat bp is more accurate?? So at home today was sat cross legged on floor for a few hours watching tv and playing xbox, slight movements in position were making my heart beat hard and fast and my bp was 145/80 for a few minutes then I sat still and it went down to 115/60, Could I be right in: A) The movements are causing blood to fall down to lower limbs and my body is trying to compensate for it? Because I was sat for a while blood had pooled so my body reacted to get blood back to the heart etc C) An imbalance in the blood pressure throughout my body so its not 140/80 really He has prescribed me 2.5mg Midodrine which is on its way, my blood pressure is always 105/50-125/85 when im still and not moving posturally, maybe Midodrine will stop the big jumps due to the pathology above? It just makes me so nervous to try Midodrine due to the hard heart beats and higher bp when I do move. When I stand up however, my bp does not shoot up, its more or less lower positional changes, like being sat on the floor crosslegged and then pulling my self onto the couch and sitting with my legs down as you would normally. Based on this I'm not sure I'll try the midodrine.

Thanks the 1/4 of 2.5 is just the first ever time, then next half a pill etc. I do it with everything lol. My main worry is sometimes my hr is 50-60 when layong or sat still, it shoots up if I stand or move my position etc so its not stuck there. Ive had all ecgs and cardiac tests etc. Im scared midodrine will lower it loads! Unless it brings it up and balances my system. Arghh lol

Thanks , Does it lower your standing heart rate and make you feel more normal? I can stand up for hours usually but feel crap, literally rubbish with a heart rate of say 100-110, im hoping when I get up to say 5mg-10mg midodrine it will bring it down to a more normal level and feel tons better up.