IAMERROR94 Posted February 8, 2017 Report Share Posted February 8, 2017 Hi everyone. I'm new here. Nice to meet you. Does anyone here diagnosed with dysautonomia experience this combination of symptoms? •Chronic fatigue even after full nights sleep •Heart jolts that knock my wind out and make me jump •shortness of breath and forgetting to breathe •palpitations especially upon standing up or climbing stairs or during any form of exercise (resting heart rate 58-100 BPM. Standing heart rate 120-150 BPM. During exercise 130-180) •sleep apnea (I need to sleep on my side and use a wedge pillow to breathe) •blurry vison •cold sweats •head aches upon standing •high blood pressure (around 140 over 70) •depression •anxiety •chest, neck, jaw, shoulder, arm, and upper back pain •"pins n needles" in hands, feet, and legs (usually right after standing up) I've had ekgs, echocardiograms, chest xrays, blood tests, and urine tests. Doctors say I'm fine and say that its high anxiety. I highly doubt that... Sorry about the long list, I'm just desperate to find out what's causing all of this. Thank you.q Extra info that doesn't really apply to dysautonomia: I have been diagnosed with high liver enzymes, sometimes my urine is orange (I drink water constantly) and my kidney sometimes hurts (especially when urinating) Quote Link to comment Share on other sites More sharing options...
IAMERROR94 Posted February 8, 2017 Author Report Share Posted February 8, 2017 Oh and I have acid reflux Quote Link to comment Share on other sites More sharing options...
Lily Posted February 8, 2017 Report Share Posted February 8, 2017 Sounds to me like some form of dysautonomia is a plausible hypothesis to consider. See if you can find a specialty practice, such as a cardiologist who specializes in dysautonomias. Quote Link to comment Share on other sites More sharing options...
Tiffanyi80 Posted February 8, 2017 Report Share Posted February 8, 2017 I have been told a way to treat POTS at home: 2-3L of water a day, 3-8g of salt a day, and at least 100g of protein a day. I was told that once you have established the above in your routine and your symptoms start to improve; get up get moving...walk don't run of course and start slow. Just take it to your threshold and rest. Don't push yourself; you'll most likely improve over time and unfortunately there is no quick fix. Sometimes we just have to do it ourselves as doctors are not sympathetic to this condition. Keep your head up; you can get better. If you can find a POTS specialist in your area that would be ideal. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted February 8, 2017 Report Share Posted February 8, 2017 Welcome to the forum! If you have not seen this already, we maintain a list of specialists: http://www.dinet.org/physicians/ Quote Link to comment Share on other sites More sharing options...
IAMERROR94 Posted February 8, 2017 Author Report Share Posted February 8, 2017 Thank you so much everyone for replying. I'll be sure to take everything suggested in consideration. I hope you're all not feeling too crappy. I know I do lol Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted February 9, 2017 Report Share Posted February 9, 2017 You mentioned chest, neck, jaw, shoulder, upper back pain - you might want to make sure that you don't have some sort of cervical instability or even Chiari. Do you know if you have Ehler's Danlos Syndrome? Just something you might want to check out. Quote Link to comment Share on other sites More sharing options...
IAMERROR94 Posted February 9, 2017 Author Report Share Posted February 9, 2017 What's that? Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted February 9, 2017 Report Share Posted February 9, 2017 In reference to one of the comments, don't try and treat yourself at home until you have the ok from a doctor. More specifically don't start adding a ton of sodium to your diet especially if you suspect pots and have high bp. I have hyper pots and my bp ranges from high to low and i eat almost no salt as recommended per my doctor. Everyone is different. Quote Link to comment Share on other sites More sharing options...
IAMERROR94 Posted February 10, 2017 Author Report Share Posted February 10, 2017 So I just had a big scare... I was relaxing and watching YouTube. I checked my heart monitor and it read sp02 84 and BPM 39... I should have mentioned this before but I'm male, 22, 5'9, and weigh around 240 pounds. I have been laying back and doing leg exercises but not too intense. Should I be worried...? Should i go to the er...? My heart monitor is cheap and off eBay but you never know... Could lack of sleep be a factor? I slept 6 hours the day before and then yesterday didn't sleep until 3 pm and slept about 6-7 hours. Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted February 10, 2017 Report Share Posted February 10, 2017 It could be a problem. Get out your insurance card and see what phone numbers are on there. Some of them have 24 hr nurse hotlines. Try that, but you may need to get some help. O2 shouldn't be that low. Mine drops like that for a few minutes but rebounds. Heart rate is too low as well. You may need the ER so that a medical professional can evaluate you. Bad things can happen if that is a prolonged situation. I would be surprised if sleep turns out to be a factor. I hope you aren't home alone. Please keep us posted. Kim Quote Link to comment Share on other sites More sharing options...
IAMERROR94 Posted February 10, 2017 Author Report Share Posted February 10, 2017 it only Stayed like it for a few seconds. just took a bath calm my nerves. Right now I'm standing here typing this and my sp02 is between 94 and 98 and my heart rate is 75 Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted February 10, 2017 Report Share Posted February 10, 2017 Ok. You need to keep a log. It sounds like you kinda do what I do, but you need to call the doctor tomorrow and let them make some decisions. They may decide to do nothing, but it needs to be their call. When it happened to me, I googled O2 levels and researched what was 'ok' and what was 'bad'. It was interesting what starts to happen once you get to the mid 80s and how quickly things can spiral out of control. I have a friend that was on a beta blocker to control the tachycardia and another med to control the low side. They ended up giving her a pacemaker because her heart rate kept dropping to 40 and her O2 kept dropping too low. The pacemaker kept her off oxygen. Glad you are better. Kim Quote Link to comment Share on other sites More sharing options...
IAMERROR94 Posted February 10, 2017 Author Report Share Posted February 10, 2017 And I'm not home alone . My dad and sis are here. My dads asleep and sis just woke up. Quote Link to comment Share on other sites More sharing options...
IAMERROR94 Posted February 10, 2017 Author Report Share Posted February 10, 2017 And I will. You guys are so helpful Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted February 10, 2017 Report Share Posted February 10, 2017 Glad you aren't alone. Trust me, it is scary to pass out and wake up on the floor in the bathroom with nobody but a cat around - not sure if he is concerned for your well being or if he is calculating who is going to feed him if your dead. ? Don't live alone any more. The cat was not trustworthy. Quote Link to comment Share on other sites More sharing options...
IAMERROR94 Posted February 10, 2017 Author Report Share Posted February 10, 2017 Luckily I haven't blacked out from it but it sure is terrifying to imagine that its a possibility. But yeah, right now sp02 97 and heart rate between 76 and 85 Quote Link to comment Share on other sites More sharing options...
IAMERROR94 Posted February 10, 2017 Author Report Share Posted February 10, 2017 So I just tried to sleep and as soon as I started to drift off, I got this weird feeling in my chest... Almost like my heart was about to stop. I've had this before but it went away for a while until just now. Last time it happened was about 2 months ago. I got an EKG done and they said I was fine. (I don't feel fine, that's for sure) anyone else on here get this? Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted February 10, 2017 Report Share Posted February 10, 2017 Hi, Welcome to the forum. What is your normal resting heart rate? Does your HR decrease at night? Bradycardia can be horrible, sorry your having to deal with that, plus your other symptoms! I experienced bradycardia for a short time because my electrolyte's were off. A metabolic panel showed elevated potassium. Since we can't give medical advice on the forum, I second Kim's suggestion of notifying your doctor and maybe he/she can order a holter monitor for you, some wear it for 24-72 hours as they can pick up more information than an ekg performed in the office. Take care, Sarah Quote Link to comment Share on other sites More sharing options...
IAMERROR94 Posted February 10, 2017 Author Report Share Posted February 10, 2017 My resting heart rate moves up and down between 58-100 but usually sticks around 70. I would notify my doctor if I had one. I don't have insurance :/ I'm working on getting some though. I've been to the er several times. They keep saying its high anxiety, but the sensations I feel tell me otherwise its almost like I have something that they can't detect... Its such a hopeless feeling. I'm terrified. I don't want to die, and it feels like I am, slowly. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted February 10, 2017 Report Share Posted February 10, 2017 So sorry to hear your struggling right now. I went undiagnosed/misdiagnosed for years, so I understand the hopeless feeling you describe well. Many of us here on the forum have had experiences with doctors who misdiagnosed POTS/Dysautonomia as anxiety and our symptoms dismissed. In the hyperadrenergic form of POTS, adrenaline, a stress hormone is produced in excess. It is incorrect to say that anxiety is the primary cause of dysautonomia symptoms, It can be a symptom, but isn't the cause. From what I understand, General Dysautonomia is life-altering, not typically life-threatening. Once you have insurance again, I'd suggest finding a doctor through our list asap as it can take a while to get an appointment. When you find a knowledgeable dr. on autonomic conditions & receive a diagnosis, chances are you'll notice some improvement with treatment. This can be a really discouraging and overwhelming process so I'm glad you've found the forum. -Sarah Quote Link to comment Share on other sites More sharing options...
IAMERROR94 Posted February 10, 2017 Author Report Share Posted February 10, 2017 Thank you so much. Youve been so helpful. I'm glad I found the forum too Quote Link to comment Share on other sites More sharing options...
yogini Posted February 10, 2017 Report Share Posted February 10, 2017 Sometimes the heart rate monitor isn't accurate. When you are in doubt count your pulse with your finger. When sleeping or lying down it also isn't unusual to have a low HR. Mine has definitely gone as low as you describe during my sleep, when I wore a holter monitor. This is even when my POTS was at its very worst when my standing HR was 160. My doctor told me the low resting HR was normal and nothing to worry about. If you are worried about high or low heart rate the best thing to do is call your doctor and get a full workup from a cardiologist. Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted February 11, 2017 Report Share Posted February 11, 2017 Try not to worry about every single thing, the fact is people with pots are subject to a loooong list of random issues with seemingly no catalyst whatsoever. Don't monitor yourself 24/7 because the body fluctuates so much it's almost pointless. (in my opinion) When i watch and listen to everything my body does I find I'm more anxious and worried and then get hesitant to do anything because of it. It's not a good feeling. Find a good doctor and try to relax if you can. Good luck! Quote Link to comment Share on other sites More sharing options...
IAMERROR94 Posted February 11, 2017 Author Report Share Posted February 11, 2017 Thanks guys. You're awesome. Quote Link to comment Share on other sites More sharing options...
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