CarrieJessica

not sure if it the same, mine doesn't happen every time I stand more when I am trying to do something and YES when I did my TTT. Its like my face goes numb starting from around my mouth and then out to my checks.

MontanaKimberly, I am on the same med at the same dose. I have been slowly increasing because of being so tired but after 10 months I just don't feel or see (another Holter) any difference. EP wants to increase it some more and says we still have a ways to go before we might find my correct dosage. Not sure I like it.

Most places I have looked it is listed as dysautonomia, including talking with Dr Thompson office in Florida. It just wasn't listed on the Dinet main page. Here is a cardiology based article on IST and its relation to dysautonomia. http://cardiologydatabase.blogspot.com/2009/12/is-ist-form-of-dysautonomia.html

I will be interested in what the EP cardiologist verses the Neurology crew have to say on IST.

Did alittle reading and the reason it is sometimes listed as Dysautonomia and sometimes not is because noone seems to agree on if it is a primary disorder of the sinus node, or whether because the sinus node is part of the autonomic nervous system and isn't working properly it falls under dysautonomia. Makes sense now that I have read up. In my experience IST and POTS are often hand in hand as they are in my case. My IST made it very hard to diagnose POTS because my heart rate is not always stable to begin with. POTS is not the only condition in Dysautonomia that involves the heart rate.

I have IST and POTS combo but have noticed that IST isn't always listed on the dysautonomia sites. Why is that?

but yes a 90 TO 120 resting is very normal for IST, thats why my EP cardio seems to think I have a combo of IST and POTS.

My HR drops as low as 50, the IST diagnosis came when I wore a monitor and even when sleeping I would go from 50 to 150 during pretty much every hour of the day, even in deep sleep. IST made my POTS diagnosis hard as well. IST makes my HR unstable for no reason so its really hard to pin point a 30 jump from sitting to standing when I can be 70 and then 90 within a few minutes of same position.

I don't turn purple but my arms feel thick and cold (mostly when at the computer too long) and my legs get reddish and blotchy and have the thick cold feeling, they will get pins and needles after awhile too. I am going to try compression sleeves and socks but have to wait till pay day, they are $$

I don't think someone who has no heart issues could understand the odd awareness we have. I am constantly thinking 'this feels normal, oop I am too high etc..' My IST makes it so I don't have the traditional low HR when laying down, I am between 50 and 150 even sleeping and it has the low and high every hour. I fluctuate like crazy. I am slowly going up on the beta blockers and it looks like my highs are about 10 less than my before beta blockers high like you said my lows are also going lower. So frustrating.

Hi KaT, I am a new member of the group too. Of the symptoms you listed its easier to say the ones I don't have: Symptoms: Hot flashes without sweating. GI upset Muscle pain Joint pain Diaphragm spasms ?...not sure if this is what these are, but right area I have been diagnosed with Inappropriate Sinus Tachycardia, I have SVT as well as PVCs and POTS. I am sorry you are going through all of this! CarrieJessica

I go back to the doc on May 7 and need to know where to request a referral to. She is willing to put it in wherever I would like so I was thinking the Mayo Clinic in MN is in my region so I my insurance (Tri Care Prime Remote) will cover it for sure. Does anyone have experience with Mayo in Mn? I was also considering Dr Thompson in Florida but he is out of my area and I am not sure the odds of that approval. Thanks, CarrieJessica

I have SVT as well as PVCs, premature ventricular contractions. To my understanding from my EP cardiologist they are considered harmless however they do need to be monitored because the frequency and duration can cause issues. My PVCs are very frequent, every 4th to 7th beat even when I am sleeping and I have atleast 2 to 3 SVT 'runs' a day which is the term he used when as you described they stick for awhile. Mine also do become painful at times and happen when I exert myself in anyway. Mine were monitored by an EP Cardiologist by wearing a holter monitor for 24 hours and then a few months later for 48 hours. I take beta blockers to try and regulate my heart rate as well as lower it. I believe this is ALL related to my Inappropriate Sinus Tachycardia. Hope that helps, I am by no means an expert and I am not sure if its what you are going through but it might give you a place to start.

Hello, I am CarrieJessica, a 36 year old Army Wife and mother of 4 kiddos. We have a 17 year old daughter with NCS, a 9 year old son, a 6 year old son and a 3 year old daughter. About 10 months ago I was diagnosed with premature ventricular contractions (PVCs) and inappropriate sinus tachycardia (IST) and was put on Beta Blockers and saw the Cardiologist every 4 weeks. We then recently we did another heart monitor because I was still having symptoms and listening to my heart the PVCs are every 4th beat while in the office sitting down. We discuss a few new symptoms, hands, fingers and leg twitching at times, cold arms and legs, left leg feels like its asleep and turns red after standing or sitting a long time. A few in office tests of sitting and standing while being monitored and we revisit Postural orthostatic tachycardia syndrome (POTS) and add that in with PVC and IST as a diagnosis. Originally I had tested POTS free in his opinion because I had not passed out during the tilt table test and did not have the immediate 30 jump. However it seems my inappropriate sinus tachycardia (IST) had interfered with what would normally be clear markers for Postural orthostatic tachycardia syndrome (POTS). At the same time my daughter was being seen by a pediatric Cardiologist after a few fainting spells and many near fainting spells. Our symptoms were different, she passed out, or almost did where as my main issue was that my heart was racing, we never considered we had variations of the same thing. My daughter did not have to do the TTT as a stress test and poor mans TTT was enough to clearly see her issues. She is a big girl now so I will let her decide if she would like to join and share her story. In the future I may consider a service (response) dog if my symptoms become worse. It makes it very hard for me to be independent and just go do things I’d like to do because I am always worried my heart rate will shoot up right when I have to talk to someone (order food, answer a question, search for my wallet to pay) because sometimes I can ‘push through it’ and no one notices other times I look like I am having panic attack or about to pass out when it happens. It’s embarrassing, but I do make plans and get out fairly often and like to go with or meet up with people who at least have a basic understanding just for my own comfort. So we will all move forward, be proactive with our health and take it as it comes. I am trying to see it as a starting place to make improvements and create a new version of normal.

Well I can't jog for more than 1 minute so I wont be coordinating any 'run' but I thought it was funny, like an SNL worthy comedic take on if there was a Dysatonomia 5 k. I am glad to be part of a group, my daughter has NCS and I have IST and POTS so although we have each other sometimes it feels lonely. I am going through a phase where I want to be invited even though its known I will have to turn it down. CarrieJessica

no joke clicked back over to FB and a friend just posted that she is off to her gyms Zumbathon...

So I am on Facebook and like any given Sunday its photos of my friends having done a Mud Run, a 5k or some type of fun group activity the day before that I want to be a part of because I can't do it. I will say can't because as of right now I can not, maybe someday I can, but for now I am bitter about today. It got me thinking of a Dysautonomia "Run", we could all meet up put on our running shoes (with help so noone passes out bent over trying to tie shoes). We could take lots of pictures, in groups since we won't be standing for all that long. Some of us won't make it around the block, wherever we stop (if we are conscious) we will take pics of smiling triumph. For those that make it all the way around the block there will be cheers and photos (and water...). And everyone who come will get a new water bottle and salt shaker.

http://www.facebook.com/photo.php?fbid=330168393713080&set=a.101921249871130.2619.100001597656571&type=3&theater Here is a link to my companion dog Maggie, she is a 22 month old Goldendoodle. She is a bit too small to do all the work I would like so we are considering a service dog, but thats a few years out.

My first doc said there was no way I had POTS because my symptoms hot at 50 minutes in any same position. We ever prolonged my TTT to 55 and sure enough at 48 minutes was when my HR jumped, BP dropped and I almost passed out. Now my new doc says yes I do have POTS. I am an answers person and want to know exactly what I have, I am feeling like I might not ever know for sure because it seems so debatable.