CarrieJessica

http://abcnews.go.com/WNT/video/dog-saves-owner-fainting-16417322 Wow, forgot to post the link. If you haven't seen it here is the original report. I have a 2 year old goldendoodle and she is the perfect bed rest buddy but she is no service dog. I just finished my application to Canine Partners for Life.

I have Inappropriate Sinus Tachycardia have was recorded between 50 and 138 during sleep and it wakes me up nightly. I am on Toprol XL and having issues with it lowering my BP. I have not had BP monitored over a 24 hour time frame, just in office.

yes, I have a premature ventricular contraction every 4th to 7th beat

I had posted it earlier, I have emailed the agency and will be filling out the initial paperwork over the next few weeks.

great idea, I am going to do the same prep work for my up coming new neuro and cardio crew!

Maggie, do you breed and or train dogs professionally? I thought I saw someone in an older post say they did.

I have a few books on training your own service dog. I have a 2 year old goldendoodle but she is companion all the way. I think for the kind of training that I would want done I will go trough an agency just because I admittedly am not that good. I have trained my puppy to CGC standards but to be honest she is still way to over excited in public. Maggie its awesome that you have 2 gentle giants watching out for you! Charmed, love that you have a 'pocket alert'! Linda, you might want to check out this site, http://k94life.org/about/history/. Its the one featured in the report.

So I have heard of several people who use a service dog for dysautonomia but was down right to see it on Wold News with Diane Sawyer. I wasn't able to post the link, it just went straight to the main website. If you want to watch it I can FB message it to you, its the only way I have been able to share it. This is something I have considered but the wait is long and I have a child with a dog allergy so I need a poodle or poodle mix. We have a 2 year old goldendoodle but she is no service dog

go see him again with a print out of POTS info, see what he says. you can always get a second opinion. I am no doc but it sounds like you meet the diagnostic criteria. My cardio said he knew all about autonomic dysfunction... he doesn't...

I am sure that boosted everyones spirits! I also blog, http://boonefamilyupdates.blogspot.com/ I am an Army wife and mother of 4 (and a puppy), my teenage daughter has NCS and I have IST and OH and possibly POTS (seeing a new set of docs in the next few weeks)

So someone who is familiar, can you share where we could read up on the different types of POTS? My doc is familiar only with the diagnosis criteria and basic treatment of salt and water loading, I don't even think he knows there are types.

Okay I found a general neurologist with an emphasis on disorders of the muscle and peripheral nervous system. I think he might be my winner. My cardio is a great cardio but he doesn't get the big picture at all and I end up upset every time I leave.

Where have you have the most success, neurologist or cardiologist?

during 2 separate monitors I was from 50 to 150 almost every hour of the day and night. I go from flustered and sweaty to heavy and weak.

Thanks, you guys help more than I can say. I understand his mentality, if I even start to mention something not heart related he says "you should take that up with your PCP, now how about that Toprol XL". I swear he gets a direct cut from them! I get his frustration with me 1. I am not some big deal case 2. I keep talking about being dizzy and tired. I think he forgets the system the patient is in, HE is where they sent ME to deal with this.

I almost cried in front of the Doc today ugg!!! I went in with notes, its been a year and the EP Cardiologist won't commit to a diagnosis (I am sure because he just doesn't know). I am on paper official with Inappropriate Sinus Tachycardia. Last appointment he said (after 2 TTT and a stress test and 2 different 48 hr holter monitors and 12 months of seeing me) "Looks like you have POTS and or OH". Because we are an Active Duty Army family if I have a diagnosis they will only move us to a place where a specialist who can treat me, so I kind of need to narrow this down. I asked today, "so I officially have IST, POTS and or OH right?" He says "You have IST and might have POTS and or OH but the treatment is the same so it doesn't matter" WHAT?!!? I said "Doesn't matter to who because I would like to know. I realize things could be much worse but my quality of life is going down hill and thats not right". In short, he bolted out of there and I cried on the drive home. I am taking my meds, learning to cope and am waiting on a referral to see Dr Thompson in Florida,

I had 3 moments of what I would call sever but very short heart squeezing. It happened once for a second, then again and I went down on the floor. When it didn't happen again for a couple of seconds I got back up and it happened again. I was shaky afterwards and hubby pushed for an ER visit. They took me right back and did an ECG FOR 15 SECONDS. I explained my medical history and my cardiac symptoms and told the I have never had an ECG look "normal" and requested we do it for at least 10 minutes to get an assessment of whats happening (knowing the squeezing wasn't still happening and could see this going down as a lost cause). He said no and that 15 seconds is enough and it was probably acid refulx, by the way this is something I have never had. I totally get it, yes it could have been acid reflux however I am telling you my heart is haywire help a gal out. They put us in the waiting room where as a southern girl I can't help but make eye contact and smile which makes everyone talk to me. People had been there 8 hours! We went home with the theory I would be seen between 7 and 8 am... my docs office would be open by then! I have already called my PCP and EP Cardio offices and have an appointment on Friday with EP Cardio anyway. Its another time where I feel like because I am not having a heart attack noone cares whats happening to me. I am 36, this is not right!

I think this is something we all have or will go through. I am newly diagnosed, still conflicted and getting a second opinion and have already faced some awkwardness. Some of the few people I have shared this with seem to have all my same symptoms (they passed out once, or get dizzy when they stand up or are always tired) they have a hard time grasping no, that one time you are telling me about is every day for me. Just had a heart to heart with my bestie. Before this last year we were the stay at home mom duo of almost a decade. I am an Army wife so I moved away (several moves as a matter of fact) but we still talked every day. We talked about all the joys but lets be real... we complained about being tired, over scheduled, under valued by career piers and did I mention tired. Before being diagnosed I often dismissed my symptoms and underplayed them to my own detriment. Now that I am knee deep in second opinions and talk planning a trip states away to a specialist she was left thinking 'well this came out of a blue and you were fine a few months ago' . She did finally tell me she didn't know what to say to me because she felt like she couldn't vent to me about anything because now I was sick. Even my very supportive dad has said 'you have symptoms all the time now, do you think you are over obsessing on it'. I had to explain to them that I have had these symptoms for awhile and thought it was just my normal, now that I know these are symptoms and not just me they are more apparent, and yes I am very focused on autonomic dysfunction, I am sorry if I mention it too often, I am learning alot about my body and how it works and that is very interesting and in a way it is energizing to research my options. I don't want to have this and don't want to go to docs all the time, but its me and I have to so I can only learn more to my own benefit.

I think I am going to try and get the approval for Dr Randy Thompson in Pcola Florida, its out of my area so I am not sure how that will go. If I cannot get to him I will go Mayo MN as a back up plan. I have a great EP cardiologist but he isn't an autonomic specialist, he told me I have POTS but from what I can see my HR didn't jump 30+ but my HR dropped more then 20/10 and my pulse was 42... not sure what that means.

As far as whats causing it, my guess would be BP dropping and or HR increasing. You may want to inquire about a stress test so that you can be monitored before, during and after cardio to see whats going on. I personally have Inappropriate Sinus Tachycardia and this does happen to me, I can be siting or even laying down and my HR will nearly double on its own.

tachycardia and bradycardia from 50 to 150 almost every hour I am told this is due to Inappropriate Sinus Tachycardia and may be unrelated

I titled the 3 minutes into the TTT because I know what a defining time that has been for so many of us. Although after looking at my medical records I don't think it defined me properly... I started in a normal sinus rhythm (rare for me) BP 115/83 HR 65 pulse 100% 2 minutes BP123/83 HR 74 pulse 100% 3 minutes in sinus rhythm bigeminal PVCs some couplet PVCs BP 102/61 HR 74 pulse 42 Am I wrong or does this 3 minute mark meet the diagnostic criteria for OH or OI? I don't have my second TTT that he diagnosed POTS with yet. I wonder how much her really knows about dyautonomia?? I know we are not doctors but I would like personal experience guidance here, what do you think? My symptoms: tachycardia and bradycardia from 50 to 150 almost every hour faintness including nausea, blurred vision and dizziness vertigo next to moving objects (the worst is in a parked car and the car next to me moves, I panic and think its my car moving) very poor exercise intolerance (3 minutes into stress test non-sustained ventricular tachycardia) sweating flushed face or turning white numbness of arms and legs tingling, pins and needles feeling in arms and legs cold arms and legs blood pooling in lower legs and feet hard time sleeping fatigue feeling weak, as if I can't pick something up that I know I can involuntary muscle tremors, shaking

talked to my EP cardiologist's nurse over the phone (cannot believe they called me back in the same day, points for him) He said its not decided yet but in my docs opinion as well as most of his colleagues that if you have IST without dysautonomia like symptoms is is a sinus node issue and can be treated as such, if IST presents with other symptoms related to dysautonomia than it is more likely part of the autonomic dysfunction and even with the procedure symptoms are not as likely to be resolved. I have not been on an SSRI, I was on Wellbutrin for awhile but that was a doc who thought I had something else a few years ago. I see EP cardio again in the 11th and will add that to my list of questions.

It is not constant chest pain but I have chest pain when I have what I lovingly refer to as tachy time. If I have a bad day with POTS symptoms and IST non stop tachy 'runs' I will end up with a dull ache for awhile. Like you said it seems like I am obsessed with what my heart is doing but I am not, I just can't help but be hyperaware because its so not right.

That was good!