Living with POTS?

[Ashmarie101]

I hope today is going well for all you! After every blood test and MRI and CR scans coming back normal, I found out I am not "crazy" as most doctors tried to write me off as. I was diagnosed yesterday - YAY, finally! But what I was diagnosed with I've come to find out is nothing short of a plague. I have dysautonomia which is sub categorized into a few different syndromes which as of right now I tested positive for POTS but I am hopeful that I will find the underlying cause. They said it is not very common and there is not a lot known about it; therefore, without a cause, there is no cure. There are some medications that MAY alleviate SOME symptoms but I have found that I have become medication sensitive with this condition and regardless of what I take, the side effects are intensified for me and make them intolerable. Through this, I've learned that we take for granted our normal body functions such as regulating heart rate, blood pressure, blood circulation, digestion.. all of which are giving me an array of uncontrollable symptoms. I'm trying to stay positive through all of this but my body acts in ways that is most of the time frightening and the doctors have not given me any kind of hopeful prognosis since every person with this disorder is different. I was wondering if you have ever heard of this before and if you have any advice for me. My family and friends (most of them) are unfortunately not as understanding as I need them to be to help me stay positive through this process. My family does not understand what the autonomic nervous system does and with that out of control, what it can cause and how severe my symptoms are. Crazy part is, when I feel well enough to get ready and put on makeup, I look completely healthy on the outside. Meanwhile, inside there are so many different things going on that I feel far from okay. So it is hard for people to understand exactly what is going on inside of me and I get that. Through research, I've found that low blood plasma volume could play greatly in all this. I am constantly dizzy because of the lack of circulation to my brain, my feet and hands are freezing at all times, and my heart is on overdrive trying to pump this blood to areas of my body but even with a heart rate of sometimes 170 this circulation seems to be almost impossible to achieve and if I thought I was dizzy normally, I don't know how I keep myself from passing out when I have these tachycardic episodes. I will be making an appointment to see a specialist who specializes in dysautonomias but there are very few so I'm hoping the wait isn't too long. This is not only taking a physical toll on my body but mentally, I'm drained. I don't know how to accept such a condition that is a found to be a mystery to doctors. Anything that you know about this would greatly help me out. Or even any suggestions that you may have would be greatly appreciated. Has anyone else experienced this medication sensitivity? If so, any reason as to why this would be happening? Even started out on half of the lowest possible dose, my body reacts in terrible ways. Could this be from anxiety? Cause Lord knows, I have enough of that to pass around. Any feedback from anyone would be great! Thanks, everyone.

[beyonddespair]

I can not believe that for the first time in 7 years I just read the symptoms my husband has complained of constantly!  

So I have to say thank you for being so honest and forthright, not only about the dizziness and crappy feelings, but about the lack of support and understanding from family.  

I hope we can get a solution....I hope we all can find the cause, the cure, and learn to live again in a normal fashion.  

I'm sorry I can't offer any kind of tangible advice. My husband has these same symptoms but no diagnosis. So far, all we know is he's getting worse.  Yeesh!

[Chessur]

I was diagnosed with POTS and Orthostatic Intolerance as well. My body will not tolerate the medications (usually beta-blockers and salt tabs, stuff for that). I have been to John's Hopkins and the best advice from the head of cardiology I have been given is to exercise at least an hour per day, no matter how little that is (sitting up straight for that long), working out at the gym. He said the best exercises are rows (I had to get a personal trainer as I have never set foot in a gym, I am 5'9" and 110 lbs. I know I need to gain weight and muscle weight and strength in the legs will help regulate your heart rate, apparently. I've been doing this for a month now and I have not seen my heart rate improve but I am no longer dizzy and staggering all over the place. I am still fatigued all of the time and just don't feel well overall, but he said the soonest he's seen a recovery is 6 months. I spent a month already in hospitals for this. So overall, I am just hoping that the exercise helps my heart, not just my balance and dizziness. Hope this helps.

[Ashmarie101]

I have a lot of symptoms that I consider "main problems" lol. My blood pressure fluxuates a lot. My heart rate is generally anywhere from 90-170. Laying down doesn't seem to help too much on my bad days. I have nausea all day long as eating flares my symptoms drastically so I'm not eating nearly as much as I should. I'm dizzy and have constant brain fog. And I have some trouble breathing that comes and goes throughout the day. I am able to leave the house but I wouldn't dare to try it alone incase I was too lightheaded and passed out somewhere although I've never actually passed out. I havent gone to school (I am an RN student) and havent worked. My cardiologist and neurologist tell me I will grow out of this in a few years but I have not seen much hope on here to point me in that direction. I'm 22 years old so I don't know if I fall under that "adolescent" category where I see these teens growing out of this but my doctors seem to think so. I'm just trying to stay as positive as possible.

[Ashmarie101]

Well I tried beta blockers which lowered my resting pulse to somewhere in the 40s and blood pressure to about 70/45. I tried 3 different kinda of beta blockers, at half of starting dose and still suffered from same effects. I tried midodrine and for some reason it gave me a panicked feeling and I couldn't focus on a single thing. My brain was in the biggest fog. And my dizziness got terribly worse. My first dose was okay but the second dose was the one to give me these problems. I tried pamelor given to me by neurologist but couldn't move out of bed the whole day. I'm going to try biofeedback next week and see how that works for me. I m extremely nervous to take meds because of the way they worsen my symptoms and I feel crummy enough as it is. I'm sorry to hear your state of being. You are very well informed it seems and I hope you a lot of good progress :)

[Heiferly]

You're in the right place now! Lots of POTSies here. I was originally dxd with POTS, but now my dx is generalized dysautonomia. I'm completely disabled, on a feeding tube, in a wheelchair; you will find the gamut from those mildly affected to those with life-threatening complications. A lot depends on what the underlying cause is of the dysautonomia, and what comorbidities there are.

Getting a diagnosis is often the hardest, most overwhelming part. So hopefully it gets better from here!!

What types of reactions to medications are you having? Allergic? Anaphylaxis? GI upset? Bp/hr related?

[Sara_Jane19]

Hi AshMarie! Welcome to our community! I also have POTS as well as orthostatic intolerance. May I ask what medications you have tried? Is it your heart rate that is your main issue or your blood pressure? For me it is both! I have medication sensitivity as well. Midodrine is one medication that I know many people tolerate fairly well and has fewer side effects. It doesn't help much with heart rate, but it helps some people with blood pressure. Otherwise, it just depends on what you are taking. I know when i started Florinef I reacted very poorly, but once I found a specialist he realized I needed to start slowly (2x a week) and build up to 1x a day over the course of about a month. Good luck and let us know if you have any other questions!