katcanny

When I have what I'm only guessing is an adrenaline rush I haven't been diagnosed as to that is what's happening but my legs shake and seize up like rocks my heart rate jumps to 100+ laying down and I get this thump in my chest then it feels like my heart is gone and not there until I feel the next beat. I haven't had any levels checked to do with adrenaline. I just lay down and my body shakes for about 10 minutes until it subsides. I haven't had these skipped beats before so I freaked out a little and stopped checking my pulse manually as I have a Fitbit hr so I kept an eye on it with that. When I have used my bp machine it has showed an irregular heartbeat on occasion but I thought maybe I had moved or something so I hadn't taken notice of it.

Thanks for the feedback I am just tired of it all, I will try and contact my specialist by phone but I don't like too I feel like I am an annoyance to him. I might ring tomorrow today is not a good day I have had a headache since yesterday and very dizzy so another couch day for me by the looks of it!

Hi all! last night I experienced what I call an adrenaline rush no doctor has bothered to test me for anything though. My heart races, my legs start shaking then my whole body shakes and then my legs freeze up and I can't walk properly, I went to lay down as I do when this happens and I checked my pulse and my heart starting skipping every second beat! This scared me so badly I hardly slept all night and kept my oxygen and hr monitor on my finger all night incase I stopped breathing it could make noise to alert my partner. Now I am scared, my chest feels like it's buzzing and I don't know what to do? I went to my gp and he suggested a holter monitor but at my own expense and at this stage I have no money as I haven't been working because of this stupid illness. Anyone else's experiences with this would be greatly appreciated I don't know if I should go to ER again but they will probably just send me home

I love my veggie patch! I'm in Australia so it is still quite hot at the moment so not outside too much but we have zucchini, silver beet, chilli, spring onion and chives growing at the moment! I made zucchini pancakes for the kids school lunches last night with our very own zucchinis very proud moment on their faces when we harvested them and then got to taste test!

Hi everyone, so the midodrine is a no go for me and after seeing my specialist and waiting for a drug to be government approved which is four weeks away! I have been told to take sudafed PE? Has anyone else had any experience with sudafed PE? This new med I am waiting for was used for migraines but didn't catch the name but it starts with droxy something or other?

Thank you for all the encouragement and support from everyone, I am going back to see the specialist tomorrow and hopefully try something else as the midodrine really wasn't good for me I didn't mind the tingling and goosebumps but the rash, shortness of breath and irritability was horrible I didn't feel like myself and it lowered my blood pressure instead of making it higher so it must just be my silly body reacting to it! I don't know what will be the next course of meds? What did other people progress to after midodrine? The florinef makes no difference to me I don't have any side effects but it doesn't really do anything to help me.

Thanks Kalamazoo and Macca, its getting really hard for me at the moment I'm about to lose my job because of this stupid illness and possibly my partner. We have been through a lot in our relationship and this has sort of sent us over the edge and trying to look after my 10 year old on a daily basis when I am having a bad week is so hard because I can get so cranky and all I want to do is be back to normal and kick around a footy with him or play cricket with him and at the moment just playing a card game and getting him ready for school is exhausting at the moment I really hate myself and the life I am living and the life I missed out that I should have lived while I had the chance!

Thanks Kim,dancer65 and yogini! I was up from 12:00am with shortness of breath until about 4:00am which was then followed by a cold sweat either going to vomit or faint tachycardia and then felt so shaky and horrible! So by then time it got to 5:45am when my partners alarm goes off I was awake and a mess! My mum took me to ER and they contacted my specialist who said not to keep me in hospital it would make me worst? (Maybe the laying in a hospital bed) and so I was there checked over and sent on my way! I am so over feeling this crap but I did get another appointment with my specialist as soon as next week so that's a bonus! Try and take something positive from this experience! So to reply I don't think I will try midodrine again it didn't make me feel better I was out of it for the four days I had it and I never break out in hives or any rashes ever and it made me so irritable and angry at everyone and everything! Not one that works for me!

Thank for the kind words Kim and Sarah! I haven't had a tilt table test I had the poor mans test done throughout hospital for 5 days consistently. So I haven't had any blood tests like that done? Other than my electrolytes because I am on florinef and I am on the maximum amount. I can handle that med it only gave me side effects for the first dose so I'm glad for that but nothing is doing much for me bp. I went to ER to get checked yesterday for my reaction because I didn't want it to become worst during the night and the doc there even had to look up midodrine and he said I am one of the lucky 1 in 5 people that get the rare side effects! Lucky me! Lol! And then he sent me home! So I am still feeling pretty crappy both physically and emotionally I am worn out so is my partner and mum and son. I need something to help otherwise I am going to lose my job and possibly my partner as this has been a very hard adjustment for us. Is there any home remedies that have worked for people I am willing to try anything and everything at this point!

Update on the midodrine! So after 4 days on this drug was feeling out of it and noticed since I had to buy a blood pressure machine to take notes for my specialist that my blood pressure dropped even more while taking it! This morning I woke up with a rash over my chest, neck and face that look like pimples on a 14 year old girl going through puberty and shortness of breath with dizziness so I didn't take my midodrine this morning and went straight to my gp! He was no help had no idea of this drug and told me to speak to my specialist.. I rang my specialist who I have only met once he said I may have had a reaction and to stop the midodrine for a week and start again! My heart rate was 54-60 just watching tv last night I think I had a bad reaction and I don't want to try it again in a week! Anyone else had similar reaction to this drug? And if so what is the next drug you had to try for low blood pressure?

Thanks Kim, as ive been up and took my meds it is easing slightly, I've had worst headaches so trying to get through not thinking about it too much and I'm due for more panadol in 10 minutes. I'll see my gp tomorrow if it doesn't go away ! my blood pressure drops once the meds have worn off maybe that's why I'm getting the headaches?

So I have had a headache since last night and woke up with it again I'm not sure if it's the midodrine causing it or if I'm just adjusting and have a headache because of it? I am still in bed and I'm not sure if I should take it today or skip it, I'm not sure if I'm allowed to skip it I didn't ask!

Thanks for all the well wishes this support from people who understand is so important and makes this a lot less of a lonely and scary process!

thank you everybody for taking the time to tell me your experiences on this med! I survived my first day.. now on to the second I have woken with a slight headache but my bp was normal I just think I stressed a lot yesterday! Thank you for the tips I will definitely keep taking it and fingers crossed these side effects lessen and I start to benefit from this med! I will keep everyone posted! And please anyone else with any experiences please post I love hearing what members have to say ❤️

Lol midodrine auto correct keeps making me spell it wrong!

So update on the midrodine! I have goosebumps sweating and head tingles feels so weird and a pushing feeling behind one eye but that goes away after about 30 minutes! Can't tell if it's helping my dizziness because it has made me quite tired but I know I can't lay down so I'm sitting upright nearly falling asleep ? can't win!

So I am on both now the midrodine and florinef so I have taken my first tablet 30 minutes ago and I just have goosebumps on and off but I get them quite often anyway, so thinking I may just be paranoid a little I hate trying new medication! My scalp is tingly but that is sort of normal for me too!

It is to try and stop my dizziness so I'm guessing that my blood pressure is dropping the more or longer I'm upright they did my bp laying 5 times and then standing 5 times continuously so I'm guessing that's why?

Hello to all the lovely members! Just after some experiences people have had with midrodine? I finally saw my POTS specialist today and he put he straight on it would be even wait the 4 weeks for paperwork to come through I had to travel to go and get it from a special pharmacy. So I am excited and hesitant to try this but I really need something to help with this dizziness! My blood pressure is all over the place down, up, normal lol! It's very frustrating so this is the first try to get at leasty dizziness under control! Any hints or tips no medical advice! For taking this med ?

Oh and I log my water intake on the app too which is so helpful when drinking nearly 4 litres a day! I tend to forget what bottle I'm up to!!

Hello!? I use a Fitbit HR 2 and I find that it calms me down when I am having palpitations and feel like my heart is going crazy usually my heart rate isn't as bad as what I think but I could see how it could give some people anxiety but for myself personally it has helped and it feels like I have some little bit of control when I look at it! It is interesting to see my heart rate peak throughout the day when I am upright and it explains a lot to me when I have worked 5 hours and been in the fat burn zone with a heart rate up to 100 nearly constantly why I am so tired at the end of the day. I am only on fludrocortisone at the moment so I struggle on a daily basis.

Hi everyone! While I am in no way giving medical advice I am far from a doctor I have found that the birth control pill I was on which was YAZ FLEX also has sister drug called YASMIN might have caused my POTS! I have stopped this pill for nearly two weeks and my constant dizziness is slowly subsiding and is no longer now constant! I researched my pill and there are a lot of suggestions that it has caused tachycardia in a lot of patients after prolonged use and I was on this for 6 years! My tachycardia is still there but no where near as bad as what it has been to the point where I have been able to start back at work this week and drive my kids to their first week back at school! I have started on another birth control pill but with different hormones in it so here's hoping ? just wanted to pass on my experience to everyone xo

Just an update I have been researching yaz and Yasmin they are sister drugs for birth control and there was a study showing that this pill can cause tachycardia in a lot of patients when this drug is used for a prolonged period of time! I have stopped taking it now for a week and started on a less birth control with less side effects and already my dizziness is starting to subside a lot more than usual! Maybe it's a placebo effect but I'll take whatever I can get at the moment! As I'm sure anyone of us would!

I have had a lot of problems with my teeth, brittle, breaking, cavities the lot. I think that initially my POTS was caused by a bad tooth infection but I am yet to have a doctor listen and accept that theory! I just get them pulled out now. Sorry that you are going through this tooth pain and discomfort is the worst

I'm quite new to this too! Thank you to everyone that replied. It helps me to feel normal knowing that other people have these symptoms and I can deal with them mentally better having support. I really worry about getting health anxiety because every little thing health wise is under a microscope and everything feels so much worst!