Madisonjan7

@firewatcher dr Tian is sending me to Vanderbilt! Very excited. I bought a recumbent bike to try the CHOP exercise protocol. Nervous to work out alone but I’ll try

@firewatcher I am so late replying but it’s so weird you say that! I see doctor Tian too. At piedmont heart. I love him, but I want someone to help me find my underlying cause. Is he helping you with that?

Hi, I’m interested in finding a doctor who actually understands PoTs and takes it serious rather than telling me it’s all in my head. I’m in metro Atlanta and I also have a house in Pensacola Fl and I can commute to places in Alabama. I prefer finding a doctor in metro atl though. Has anyone ever been to Dr. Michael McConnell? Or have a doctor in these areas that know there stuff? I’m desperate. Anything helps.

I’ll start with a little back story. In August 2017 I started noticing that my hr would pound like crazy when I did anything except lay in bed and it started to scare me, I told my mom about it who is a nurse and she blew it off and told me that it was probably nothing. One day in September me and my mom were in target and I started sweating and feeling as if my hr was going up, so I told my mom I thought I was about to pass out and I didn’t feel good and she took my pulse and it was 180 bpm and we went to the hospital where they ran all types of test and told me I needed to see a cardiologist. My cardiologist also ran millions of test and told me that I had low bp and tachycardia and put me on fludrocortisone and midodrine (not on midodrine anymore). My next appointment I mentioned dizziness and chest pains and he suggested that it was all anxiety related and I’d out grow it. I just don’t understand how I went from a perfectly healthy 18 year old to barely being able to get out of bed without my hr being 130 bpm and feeling as if I might pass out. I’m seriously so confused. Everyone thinks it’s in my head and I literally have no life due to it. I stay at home and watch tv. That’s all. So my questions are... Is it like once you get this you have it forever or will it go away? What vitamins/medicines help you? Does anyone else have purple legs sometimes while standing? Does this sickness come in flares or does it stay? How can I improve quality of life? I can’t even work out! Should I find another doctor who understand Dysautonomia? Sorry for all the questions, I’m just lost.

@Always hoping he is the type to say “go cold turkey”

@yogini he gave me no diagnoses, he said I had low bp and postural tachycardia and that I’d “grow out of it”.

So I was on florinef 0.2 mg twice a day for about a month and then about 2 months ago I started cutting one of the pills in 1/2 and so I’ve been on 0.1 mg at day and a 1/2 at night for about 2 months but now when I get any type of nervous or stand too long I start sweating and I’ve started checking my BP during these times and it will be like 120/85. I know that’s fairly normal but my body isn’t use to that and it makes me feel like I could die. So because of this I’ve been wanting to go down to just 1 pill a day. Do y’all think it’d be safe for me to just quit taking my 1/2 at night? (I’m anxious 80% of the time because of anxiety) so it’s becoming a problem

So I’m on florinef 0.1 mg and half of that at night, it has helped my low blood pressure so much and I barely get dizzy anymore but I still have problems with my heart rate going up while standing and I have noticed that while standing my legs turn blotchy purple. Keep in mind I live a very sedentary life. I’m not sure if I have PoTs but I think I do, i don’t know I’m lost. I added pics. Please do not make fun of my unpainted toes lol

This is prob a seriously stupid question but I’m a hypochondriac about medicine so my question is, I wanna get on a multivitamin and I take florinef. Does anyone here take a multi vitamin and florinef? Don’t wanna ask my doctor cause he will laugh at me lol

The last post I put here I was extremely scared about what was going on with me so this is just an update, I still have no idea what to call my condition, I don’t even know if I have PoTs but this is the only think I can find that would make sense. In my last post I told of how I was on midodrine 5 mg three times a day, florinef 0.1 twice a day, and lexapro 5 mg once a day. Since then I have quit taking midodrine with no side effects, took florinef down to 0.1 a day with a half of that at night, and lexapro 10 mg. I still have low blood pressure (with a little dizzy) but also high blood pressure when I’m just tiny bit stressed and high heart rate on occasion. I have gotten so much better but yet I still struggle with not understanding what the heck made all this in my body act weird. My cardiologist has no answer for me and he makes me feel stupid. Also an off the topic question, does anyone else have bulging veins in hands while on florinef?

@KiminOrlando @mountain girl @RecipeForDisaster Thank all y’all so much!!

@KiminOrlando I feel much better on these meds, I have spikes in my BP where I feel sweaty and shaky, I take my BP at those times and it’s usually 130/85 and when I wake up I’m dizzy but other than that this has been working good for me. You said maybe I would be lucky and it would go away, how would I know? So I could come off these meds. Also, not trying to be super nosey into your life, but do you live a pretty good life even though you’ve had this disease so long? Are you happy? and live a fairly normal life with medicine? I’m scared if it doesn’t just go away that it will cripple my life. My husband is young like me and a healthy marine and he wants to get out and do things, I don’t want to hold us back.

@yogini yes I noticed everyone else else started slowly on meds. My cardiologist had me on florinef 0.1 mg for a month and then added another 0.1 mg in the day And only had me on that for a week before he then added midodrine 5 mg 3 times a day. He did not take anything slowly but told me to not worry and just take them. He did not diagnose me with PoTs, I’m going to see a Dysautonomia doctor very soon though so maybe I can be diagonosed. He told me that I just have low BP and I’ll out grow it because I’m so young. I hope he is right! But just something makes me feel like there has to be a reason I have low BP... I lived a very normal life before all of this. it blows my mind something could cripple my life so easy and fast that I do not want to leave the house or be alone out of fear, I want my life back! Why did I take things for granted in the past. I feel so bad for the ppl who have this and they faint or can’t even sit up. My prayers are with y’all.

@yogini @KiminOrlando can these meds cause brain fog? Or is it my anxiety making me think I have brain fog?

@KiminOrlando okay thank you!!

@yogini My BP before the meds was lying 85/50, sitting 90/60, and standing 105/65. My HR before the meds was lying 85, sitting 90-100, standing 110-120 and sometimes higher. On the meds BP is lying 90/60, sitting 108/65, and standing it sometimes is only 110/70 and sometimes it’ll go as high as 130/85. My HR on the meds is lying 50-60, sitting 60-70, standing 80-100. Before the meds I would get dizzy often and sometimes feel like I could pass out. Now on the meds I sometimes feel dizzy but usually not. I have headaches more often on the meds.

I’m 18 and 110 pounds. I’m on florinef and midodrine to bring my hr down and my bp up, I’m not in shape at all, when I say I live a sedentary life I mean it! I have NEVER seen my hr this low so it’s scary for me. It goes down to low 60s/high 50s and when standing is 70-80s. I was just wondering is this too low? I take florinef twice a day 0.1 mg and midodrine 3 times a day 5 mg. Should I half any of my doses or quit one?

@KiminOrlando thank you so much, you have helped tremendously!! I don’t feel as scared anymore. I’m sorry you have had to deal with this so long, I can only imagine! I’m only 2 months in! My heart goes out to you!! My cardiologist already started me on midodrine and florinef without tilt table test.

@Bladerunner I’m going to try and make an appointment next week, my midodrine and florinef aren’t seeming to work that well. It’s still low. @KiminOrlando I am in Pensacola here on the navy base. I found that there is a PoTs doctor in Pensacola so I’m going to try him out! It’s very scary being so young and not knowing what’s going on. My mom is a nurse and is completely confused by it, I get very scared that they won’t know how to fix this problem. Also, a question for both of you, what is the best all round low bp meds cause I have it no matter my position. It’s so confusing cause I have good and bad days, some days I won’t even feel it! And others I’m scared out of mind because how I feel.

@Bladerunner no my cardiologist just did echo, ekg’s, and 7 day heart monitor and told me I would out grow low bp. He didn’t tell me why I have it or anything.

I just found a specialist in Florida where I am and I’m definitely going to try and get in @Bladerunner !! Thanks for the encouragement, does this disease ever get better? Or is this something that is gonna cripple my life? I just moved to Florida and I’m right on the beach and can’t even enjoy it because my symptoms. Also I noticed that almost everyone on here had low BP standing and it goes back to normal lying down. I’m complete opposite, very low while lying down and normal to low while standing. Would that mean I do not have PoTs? I’m just so confused, sorry for all the questions

I would also like to add that I’m dizzy no matter what my BP is. I get nausea and headaches often too. It’s very scary not knowing what’s going on. Makes me mad how ungrateful I was 2 months ago in perfect health, I would do anything to feel good again.

So my problems all started about two months ago, I realized when I was standing that my heartrate would go to 120 or above and I felt nauseous a lot. That was my only problem, but it scared me because I have major anxiety. After my mom putting it off for months she finally realized after seeing my hr go to 160 bpm one day that this was a problem. I went to the ER one time out of being scared of the high hr and they recommended me to a cardiologist. I’m 18 and they recommended me to a pediatric cardiologist but I went anyway. His nurse took my BP lying, sitting, and standing (I have no idea what my BP was he never mentioned it) and he quickly came in saying that he has never seen anyone’s hr go as high as mine standing(it was 150) . He did an echo, several EKG’s, blood test, and 7 day heart monitor which all checked out to be fine. He put me on Florinef 0.1 mg. I was constantly checking my hr and realized the meds were not doing me any good at all. I started having worse anxiety attacks. I would get tremors, nausea, and dizziness. So for whatever reason that he did not explain he took my dose up to 0.2 that I have only been taking for a week. I started getting real bad dizziness standing, so bad that I wouldn’t get off the couch but even lying down I would get dizzy at times. So my mom suggested low BP as my problem (I didn’t know I had this) and she bought me a wrist cuff to take my BP. (I’m so obsessed with taking my BP now). With this cuff I have realized that my BP is low when I lie down and it goes up if I sit or stand. Lying down it is always 90/58 or lower sometimes down to 80/50. This scares me because can’t you die from low BP?? When I’m sitting it varies from 98/60 to 108/65. Standing 116/75 usually around there. I just went to the cardiologist and he started me on midodrine 5 mg 3 times a day and lexapro 5 mg once a day. Along with the same dose of florinef. He did not tell me why I’m having low BP and says he’s just treating my symptoms. I’m very scared to what might be wrong with me. Does anyone else experience what I do? I get terrified to go to sleep. The midodrine/florinef/lexapro all combined keep my hr in 60-70s sitting and standing about 100, but my BP still goes crazy.