maryfw

Thank you doctor Guest. The heart monitor actually went off this morning by itself and I didnt feel any symptoms at the time but about a minute later I did. So I will take your advice and just push that bottom anytime I feel shortness of breath or like my heart is racing. What other symptoms should I record. What if I feel like someone is sitting on my chest or tightness in my throat? Thank you again and I appreciate you being on the forum mary

I have been on the 30 monitor for about 6 days now and have been recording when I feel like my heart is racing and or short of breath but just now when I acutally wasnt feeling to bad the monitor went off by itself. I didnt notice any symptoms until about a minute later and then I started feeling shortness of breath and tightness in my neck. Today simply walking at what most people would consider a normal pace is causing me symptoms. Sometimes I forget I have this stuff and take off walking like a normal personal and then I regret it later. Keep your fingers crossed for me that the monitor is picking stuff up. After 24 years of being told nothing is wrong with me I still feel like nothing will show up even after having been diagnosed. 24 years is a long time of being told, "You are perfectly healthy" so I am always nervous that nothing will show up again. thanks mary

I had a doctor one time 17 years ago tell me that I was hyperventalating. He did a blood gas test. I was so mad!!!!!!!!! I never went back to him. I now know it was my NCS and I was also misdiagnosed 23 years ago with MVP and again I now know it was NCS/POTS. mary

I am female. 5ft 6in and weigh 128.

What qualifies as Tachy? Sometimes I feel like my heart is racing and pounding and I am short of breath but what heart rate is technically tachy? mary I am on a 30 day event monitor and I dont know if I should push the bottom just because I feel like I am short of breath or wait until my heart rate is at a certain rate.

sometimes my bp drops without being tachy so in my opinion the answer could be yes. mary

Sometimes at night if I have had several episodes during the day, then at night even while I am lying down I have a hard time breathing. My breathing is very swallow and my chest hurts like someone is sitting me on. It can take me awhile to get comfortable and this interferes with my sleep. mary

I have heard of ocular migraines where you see the pretty lights without pain. Usually when I see the lights I have the most severe of migraines ever but ONE time I had the pretty lights and the migraine did not follow. Also I have been told that dizzy spells and vertigo can be a migraine without the pain but I think my dizzy spells and stuff are my POTS and not the other way around. mary if you are not having the pain along with it at least that is some good news.

I have often tried to describe it as if my brain is not attached in my head or like my brain is sitting in a bowl of water and is getting giggled around. anyone know what I am trying to describe? mary

Wow. It is nice and sad to finally hear someone who knows what I am going through. I guess I should get checked out for the other stuff you have too. I am now terrified to fly. The last time I fly I clawed my husband up on his arm (without even knowing it) and try my best not to scream but I make a fool of myself. My seizure like symptoms dont seem to be as severe as yours but it is bad enough. mary

I have slept with a heating pad for years. First for back pain and then because I am always cold and my husband needs a fan. Also when my chest hurts and feels like someone is sitting on it, I use the heating pad on my chest. mary

I have learned to drive also and learned it the hard way. In my work I have to go out on business calls and sometimes with others, usually men. men seems to have a heavy foot when driving. I had a very embarrassing episode so now I just tell them right off that I may pass out if they take off quickly from a stop and they usually drive very slow. the last thing they want is a woman passing out on them in the car. If at all possible I DRIVE. mary

I called my cardiologist last week to ask to change meds or combine meds because all I am on is proamitine. She ordered a 30 event heart monitor and I just got it today. I dont think it will show anything but at least when I talk with her about it again (racing heart, etc) she can move on from there. I have had a holter monitor and a echocardiogram and now the event monitor. Last night it was like to adrenalyne glands were in overdrive, even while lying down. Heart pounding, easily startled, etc. Do any of you take medicine to control your adrenalyn? My cadiologist had mentioned that as another line of treatment for me but was afraid it would make me to tired. Not sure it can make me any more tired than I am everyday alreads? Will let you know how it goes. mary

If I had to do that to have my children........there would be 2 less people in the world today. Too Cute. mary

I have posted about this before and I seem to be unique in this but I think I am starting to understand more about what my autonomic disorder means to me. When I fly.....on the take offs, the rapid acceleration and change in pressure and altitude makes me shake violently and almost pass out. Even in a car on a really quick take off I do this (when someone is driving because I never take off quickly after having 2 bad experiences). I have never been able to hang unside down as a kid from the monkey bars because of this. So this is what I think is happening. When people like us stand up our blood vessels dont constrict like they should and the blood pools in our legs and we lose bp and blood flow to the brain, right. So what I think is happening to me isa rapid and extreme loss of pressure and I am shaking so violently in the upper parts of my body because of that. Does that seem right? Should I be concerned enough to not fly again. When I tell my doctor about his they never seem to get it. thanks for listening to my unique situation. mary

After reading this I bought some yesterday!!!!!!!!!!!! There is a bright side the POTS!!!!!!!! Praise God!!!!!!!!!! mary

do you mean licorice the candy?

Just wondering if anyone has found any type of supplement that helps with any of our many symptoms? Hate to sound desparate but am willing to try most options. mary

I know I am spacing out when I start searching for simple words and coming out with the wrong ones. My speech can seem a little slurred too and sometimes my tongue feels like it is swollen. I notice it and try to just stop talking and see if I need to sit down or take more meds or something. mary I did it this morning soon after getting out of bed and was bathing and I tried to start a sentence and the 3rd work into it I just stopped and told my husband never mind.

This doctor never asked about insurance. Just said I need a referral to see him, period.

I tried to call a specialist in Pensacola, Dr Charles Thompson who is listed under the physician list here on the site and I was told I needed a referral to get in. I am newly diagnosed and my cardiologist diagnosed me. Not sure how she will feel about me asking to be sent to another doctor. My cardiologist is wonderful but I really want to see someone who specializes in autonomic disorders. Do you need a referral to get info Mayo and doctors like Dr Charles Thompson? Could my primary care physician referr me? mary

Has anyone had any success with treating the fatigue? Would love to find something that helps!!!!!! mary

Sometimes when having a conversation and I am nodding my head I start to feel dizzy. Then I notice I am not able to think to clearly. It is not evident to everyone else but to me I am seaching for words and coming out with the wrong ones. Sometimes it even feels like my tongue is thick, like a drunk woman. It is not so bad that others notice it but I sure do!!!!!!!!! mary

my doctor has been reluctant to try beta blockers because they lower your blood pressure. oh well. I will definitely talk with my doc. mary

I am still fairly newly diagnosed with NCS/POTS. I have low bp anyway so when it drops it really bottoms out fast. So my doc is treating me with Proamitine to increase my bp. Some days my heart rate and bp are good but on other days my bp seems to be doing OK but my heart rate is too fast and I feel bad. What meds are any of you on to decrease the heart rate? Thinking maybe I need to call my doc back and ask if she can treat me with 2 different meds, one for the low bp and one for the high heart rate. I have only been on the medicine a month so I have not had a followup yet. mary