andybonse

I think i feel worse on midodrine makes me feel dizzy and nausea etc strangeee?

Hello, What dose of Midodrine made you feel better? I am on 2.5mg, I feel the tingling a little bit etc and a little bit better in my head.

Well I get the shortness of breath and light headed feeling like that without pvcs most of the time, so thats probably just POTS. So it wasnt the actual PVC's causing symptoms they were just scary lol. I've emailed my Cardio before, he just says ignore them there harmless so I cant really argue with a cardiologist, PVCs started when my POTS did also so its all tied in together for us! After them, I started peeing clear water about 6 times within an hour and quite a bit, no one knows when I mention it to them(docs)

Hello, Does anyone here get couplet pvcs? I got a couple last night and normal PVCS, I have them every so often, they really scare me. I am now in a relationship and my gf was here first time she seen me like that, I was just quiet etc. Last time I went to ER but they dont do nothing, there harmless apparantly. Ive had ecg, 24 hours ecgs, echocardiogram, cardiac MRI, stress ECG so I guess with a normal heart its fine :/ Just so scary!!! I am on Midodrine, not sure if this can cause them, but I get them anyways sometimes so cant really blame the Mido I guess!! Beforehand I went short of breath and light headed after a pizza with jalepenos on, so can only assume low blood volume or something.

Update, I am very happy, took a quarter this morning didnt feel terrible like i do usually everyday at that time, took a half a bit ago and im not light headed or dizzy at all so clear its amazing??? I can breath, walk, HR not high. not 100% but **** what a difference!?!? Maybe its working better this time as im on florinef, just a pain it wares off so fast

Actually last dose gave my hands a tingly puns and needles feeling and i felt rubbish. :/

Hello, Update, since my potassiu is lowish and i pee a lot, my doc doesnt want to up the florinef, he wants me to do a drink and urine count for a few days, and we may try desmopressin at somepoint. Back on Midodrine today, yay light headedness gone, I miss this lol feel a bit dizzy and weird on it, not sure if thats normal and goes away? a bit tight chested but not short of breath like i was without it. Hoping for improvements

Hello, Does anyone here get angina upright, but normal coronary arteries and heart? My heart is perfect, im 22 and never been in bad shape until pots, when i get warm or my heart goes too fast I get angina due to lack of blood to the heart from the upright posture. I think my disatolic blood pressure is too low when my heart starts to pump faster and harder to keep blood up when hot the systolic gets a lot higher but disatolic stays lower suggesting the lack of blood flow. It *****, so really no treatment i dont think as nitro would drop bp even more, I think its a case of cooling off and laying down, I can exercise at 170 bpm laid down no chest pain, but upright at 130 ill get chest pain.

Hello, Lots of posts from me lately >< In my head I feel really strange, and it feels tight inside on the top like a pressure, but no headache or only a tiny one if that. It makes me feel dizzyish and like im not here properly its awful. I get ringing in my ears too. I used to suffer migraines and its a bit like that but on the top of my head. I am getting a brain MRI for completeness soon hopefully, I dont think I have Chiari as its not a headache at the back of the head or no other symptoms really. Its just gone away now, I dont get it every day its weird! like its constricting in my brain at the top or something!! My worst symptoms are head symptoms and shortness of breath i get on and off. sometimes when I start to feel better when this is happening my face flushes?

dilation causes pooling not constricting

Hi, When you guys are upright and feel terrible then lay down, do you feel better instantly? Ill be sat up for a bit then get short of breath, feel weird and chest discomfort etc, then lay down and itl be a bit of relief but ill have to stay laid down a while until it all goes back to a big relief? Also sometimes when im up standing and then sit down or lay down ill go dizzy for a few seconds?

yeah I get them they ****, hate that feeling where breath is taken! you had an echo and ecg?

Didn't sleep last night ugh lol today im so tired and my HR is up, when standing though I feel good even though my HR 105--115 which is unsual lol, heart doesnt pound either. I think the florinef is deffo helping, since starting it i dont get the sudden blood pressure drop AS much, hopefully higher doses even better

Anyone ever have a weak pulse? Today mines been quite weak at wrists and neck but BP is 120/70 HR 64 I am on florinef so unless the hearts not working as hard as it was before? Usually can feel my heart pound in my chest and bp usually like 128/67 in these episodes. felt dizzy today though :/ hearts pumping fine also got my stethoscope and little ecg lol

It causes peripheral vasodilation, faster hr so cant see it being used.

Always confuses me why they need to give a drug that vasodilates us :/ I dont have it just certain places! Wouldnt let them touch me with vasodilators when I was in hospital haha

I noticed when i dont eat properly for few days i feel increadible compared to now makes me think to trial octreotide maybe as of course we need to eat

maybe I should give midodrine a go again when im on my full dose of florinef, might make a world of difference.

mines like i feel the need to deep breath but cant get the deep breath or satisfy lol its horrid :/

I believe this article corresponds with what i am feeling: http://www.ncbi.nlm.nih.gov/pubmed/15768201 It states perfusion in part of the lungs may be less or altered which would of course happen and I believe this is my case! Thanks Dr Google haha, my lungs are fine etc, oxygen levels usually normal.

Does anyone have wide pulse pressures? Mine runs from say 120/60-130/70 Laid down it can be 120/55 Anyone else the same?

I can assure you its not anxiety or panic related purely physical! I wish it was anxiety.

Hello, A lot of people get shortness of breath but mine is like: ill be sat up and the longer im up or stood up ill feel like my chest is dry inside like no blood and it gets a bit tight and cant get deep breaths and feel lethargic, ill lay down and within 10 mins it will be a lot better. I can only imagine bloods slowly pooling and the veins and arteries in the lungs are getting tighter and tighter reducing blood flow to keep a decent pressure? Its horrible its literally my worst symptom!!!!

I can feel it now and ive eaten and warm so i guess it is actually due to the heart having to work harder so when i cant feel it theres probably enough blood to have the heart not need to work as hard

Hi The past year since my dysautonomia got worse i was always aware of my heart beat and it was quite forceful at times. Ive been on .1mg florinef 3 weeks and i cant feel my heart in my chest and my pulse feels weaker Hr and bp normal 120/60 etc So can only assume this is what normal people feel like, must be helping so the heart doesnt need to work as hard? Haha its freaky