CarrieJessica

I started the trail of diagnosis last year in late June early July, I was getting results and learning new medical jargon around the same time as the awareness week. It was a week of becoming personally aware. This year I would like to mark the week in some way but I am not sure how. Its not like the month is full of 5ks and parades, atleast not near me. How do you mark the week? Does Dinet do something on a National or International scale? I am considering coming out of the proverbial invisible closet on FB. My family knows, even if they don't really understand and a few friends know. I thought it would be a good way to get it out there for the acquaintances who I know must wonder why I sometimes have a cane sometimes start to sweat and look off for presumably no reason and sometime cancel plans all together. Are you 'out' or have you chosen to be more guarded? If you are willing to share how either way has worked for you I would love to hear.

I am leaving Missouri and heading to Pensacola next Tuesday, my appointment is on the 2nd and I am downright excited. I do have a great neurologist and an empathetic cardiologist but they both said all of my different issues are a bit much for them to come up with a game plan with confidence (thank goodness for the truth, the last guy said he knew "all about dysautonomia" and was way off). We are very hopeful that Dr Thompson can make sure my multiple issues are correctly defined and if we are on the right treatment track or if he has a better suggestion. My husband was laughing at me when I said I had a date with the Dr House of Autonomic Dysfunction. Have any of you gone to to see him? Anything you can suggest to make sure I get the most out of my time with him is much appreciated.

An inexperienced doc DX me with POTS but I do not meet the criteria, my HR jumps randomly more than 30 not necessarily when standing (inappropriate sinus tachycardia) . I have OI and a slew of other Dysautonomia issues. I was able to do poor mans TTT of laying down having BP taken and then stand up very still for 2 minutes and I dropped a difference of 19/8, 20/5 and then again 20/10. Neuro said it was clearly OI. Let me know if I can help.

You are singing my song! I have frequent premature ventricular complex, episodes of ventricular tachy (induced coming off stress test), Inappropriate sinus tachy, bradycardia, long qt syndrome and orthrostatic hypotension For me Vtach felt like literal flopping inside my chest, think of fish out of water and thats what my heart felt like. It also feels like my heart is in my throat. My vtachs have all been cardio induced. I am on beta blockers and have been for a year with little impact on my over all crazy heart

I am also on 50mg 2 times a day, I slowly increase every 6 weeks or so but after just over a year with not much change I am about to take another route. I do hope it works for you. My only issue was some mild tummy trouble the day or two after going up in dose and some fatigue that over all wasn't a big deal considering that kind of on going for me anyway.

My understanding is when your hr shoots up for a short time repeatedly all day due to POTS it is not the same as when you maintain your target hr during a work out. So in short its about consistency. Consistency is tough for us. I have Inappropriate Sinus Tachy as well as pretty intense Orthostatic Hypotension. My HR goes from 50 to 160 almost every hour of the day and my BP drops about 25/10 about a third of the time I go from laying/sitting to standing. It was stressed to me that its very important to know my target heart rate and monitor it during exercise. I have been improving quiet a bit, at first after 20 minutes I would be dizzy and my legs would fall asleep (stationary slightly recumbent bike level 2) 3 weeks later I am doing 45 minutes level 5 without feeling like I was going to fall off the bike and legs not falling asleep during or right after. Still take an insane amount of time to recover (IMO) and I know I am doing super kick *** right now but realistically I know I am one bad 'episode' away from a hiatus and having to start all over again but I am really trying. Way to turn it around and talk about me huh...

my daughter takes both every day

Well written Humble Pie. I am so happy he is managing well enough to have this last professional hoorah with The Wiggles. I am so happy to hear stories like this one where a person with a chronic illness is willing and able to take the steps to reach a goal and it is seen by others. For me last year it was being the room mom in my sons Kindergarten class, the year before it was raising money with my family for our local Bark for Life. We all do amazing things and its so nice to see someone be recognized for how difficult it can be and how strong we are to do it!

In Mo its recommended that you do not drive for 6 months after any loss of consciousness, however docs are not required to report to the DMV. It is different in each state.

I prefer a simple "oh good, thats the look I was going for" or "yeah I try not to go out on the bad looking days" I know, for me, the people saying it are trying to be encouraging, or even trying to wrap their heads around my illness when they see me on good days. I don't think they could guess how it can be sometimes insulting.

I have heard this is a symptom of dysautonomia but its now happening to me several times a day, so annoying and makes getting around that much more of a pain! I know many people use compression wear but geesh I am mid 30s and would like to maintain some kind of style not to mention its over 100 degrees in the mid west right now! So to my more experienced forum friends, whats a gal to do? Cute compression wear?? Where can I get it? Are there other option besides compression wear? ** Sorry for the typo, the edit won't allow me to fix it

my arms and legs do this too even during the day, my Neuro said its part of the autonomic system not working so I don't suppose it will change any time soon. I use compression off and on during the day, night I stick whatever limb is 'asleep' up in the air and it seems to fix it. As for making it not happen who knows. I have memory foam and it happens nightly.

Okay I think I panicked for no reason. My neurologist is big on the level of Orthostatic Hypotension I am dealing with and he said. "If we are looking at pure autonomic failure I am thinking Bradbury-Eggleston syndrome but I feel like I am getting ahead of myself" This is the same guy, bless his heart, who said I don't know much about this but I will research and learn with you. Ofcourse the phrases 'pure autonomic failure' and 'Bradbury-Eggleston syndrome' scared the living whahooie out of me but after looking them up are they not just other words for orthostaic hypotension? I consider myself a smart lady but the brain fog and the docs who talk in circles and the fatigue when trying to research it all, well I am hoping those who are more knowledgeable can help me sort out what the terms mean. Thanks so much.

Thanks! I am pretty sure it was all to rule out seizures, MS, and see if I have had any mini strokes. Just wasn't sure if it would be of any use to confirm dysautonomia.

Had both an EEG and brain MRI done today. Have any of you had these done? What kinds of answers do the results give? I know the doc will let me know but I was wondering if these are to rule things out or diagnose dysautonomia.

I have slowly increased Toprol XL over the last year and am now at 2 50mgs a day. After a 3rd holter in a year we confirmed they have not done anything for me.

My mother and sister were thought to be having seizures even though the episodes left no mark on the brain so they were not seizures. They have full body convulsions (even face muscles). Its actually not a rare symptom of dysautonomia its just rare to have to intense thats its mistaken for a seizure.

Thanks so much for being willing to bring this up!

I wish the main page included Orthostatic Hypotention and Inappropriate Sinus Tachycardia. It seems like a large number of members suffer with these types of dysautonomia.

So frustrating! I have no idea why your results were not clear, I would request your medical records and look for someone else who can help you. I had an EP cardio tell me it didn't matter if I had POTS or OH, I said it matters to me. I just went to a new doc today and it seemed to go well. I wish the same for you, your results seem so obvious.

so I have only been seen by an ep cardiologist this last year of figuring out whats not quite right with me and decided it was time to see a neurologist. now he didn't have all the answers either but seemed much more aware of the daily challenges. He also confirmed in office that I clearly have Orthostatc Hypotension with the poor mans TTT, which my cardio basically told me I had POTS or OH and it didn't matter which one. So I am starting Florinef at a low dose and we will see. Fingers are crossed that this doc works out. On a side note I am seeing a new cardiologist next week so that I can kick the old one to the curb!

YEP! Even after getting diagnosed with dysautonomia I still have moments where I second guess myself and think, do I really have this. I think it stems from the 'its all in my head' or the 'you have every reason to be stressed and tired, your a mother of 4'. When I have a good day I think I am getting better and want to 'push through' it, then I am let down that said pushing through it makes it so much worse.

I fear getting worse, my mother has full body (even her face) convulsion like tremor episodes. I fear passing out in public, hitting my head and scaring my kids. I also fear not finding a doctor who really understands and empathizes with the quality of life impairments. My EP cardiologist actually said to me "you are not having a heart attack and don't have heart disease" umm I never said I did, it was so left field. I fear losing friends as more and more people find out I have dysautonomia, I fear it being harder to make new friends, we are military and move often. I fear family strains as most of the women have some type of autonomic issues and some of us are able to seek medical care (even thought it can be disappointing unsupportive care) and others face challenges with finances and insurance. My oldest daughter has NCS, she is 17, I fear she wont grow out of it. I still have 3 young children, I fear they will develop some type of autonomic dysfunction. Wow... we have alot to be concerned about don't we.

BTW on good days I can crank out 6 miles before I start to feel over exerted! I LOVE those days!

I have a hard time with standing exercises, i used to LOVE yoga but the bending doesn't work for me right now. I have a stationary recumbent bike and try and do 4 miles even if I don't feel well. Sometimes its and easy 4 miles and takes me awhile, other times I power through and consider it a real work out, sometimes I go a full hour. I also write the ABCs with each leg while sitting down, sounds corny until you try and do it! I do light weighted arm and shoulder either during my bike time or separate. For me I had to let go of a goal routine and instead have a goal of doing some each day. Sometimes I feel fit and am impressed, other times I am pedaling forward and that just has to be enough. I also have 4 kids and find I can do the stationary bike while they color or watch a show, or after they go to bed. Its hard to balance 4 kids and working out for any mom, let alone a mom with a chronic illness.