katT Posted April 29, 2012 Report Share Posted April 29, 2012 Hi everyone...first let me say how happy I am to find this site! I have been reading some posts and it makes me feel like I am not alone, although I am sorry other people have to deal with these symptoms too.Brief background:I was diagnosed with partial dysautonomia in 2005 but then it "went away" and I never had any issue or took any medications. So I thought maybe I was misdiagnosed (I had a pretty intense case of acute vestibular neuritis the same time I was diagnosed in 2005 via TTT). Anyway, I was rear ended in a car accident in 2010 and have had non-stop issues ever since. I have, literally, been in the ER 10-12 times since the accident. I found a cardiologist via one of these visits who ran a multitude of tests including the TTT. So in December 2011 I was "re-diagnosed" with POTS. My TTT didn't seem too extreme...my HR went up from a normal of mid-50's to mid-90's and my BP which is normally 90/55 went up to around 110/80. But I have a multitude of symptoms. I am not sure if all my symptoms are POTS type symptoms or if there are other issues going on? I have been to an internal medical specialist, EP cardiologist, endocrinologist, orthopedic specialist (12 broken ribs in the accident), chiropractor, acupuncturist, gastroenterologist and an upcoming appt with a neurologist.Here are my symptoms...does anyone else experience all of these too? Any suggestions? The only thing I currently do is drink a lot of water (smart water b/c of the electrolytes), eat a lot of sea salt, and take sertraline 25mg once a day. My doctor wanted to try atenelol (sp?) but I am concerned because of my already low BP and resting HR, and what I think may be hyperadrenergeric symptoms.Symptoms:PVCs/PACsTachycardia for no reason...just sitting or lying down sometimes and my HR will get over 100+ and I get out of breath/dizzy"Odd" head sensations...not really dizzy, just "off" like after a roller coaster ride or somethingHot flashes without sweating. Feels like heat pringles and intense heat from my mid-back to up over my headTremors and cold after hot flashesOccassional eye zig zags when readingChest painSOBGI upset...which will trigger tachycardia, hot flashes, and dizzinessFatigueMuscle painJoint painIrregular menstrautionWaking up sometimes with heart racing and/or hot (but no sweat)Irregular heartbeats...with or without tachy (sometimes just when in 50's it is irregular)Diaphragm spasms ?...not sure if this is what these are, but right areaI got put on a special exercise program through University of Texas designed by Dr. Benjamin Levine - and my third day in I had a very intense episode after the cardio portion (recumbent bike, light pace, HR 139 during activity). My BP got to 165/110 and HR 130. I wound up in the ER and requested they run a UA for methylhistamine (because with the hot flashes, etc I wonder if I have hyperadrenergeric). But the results came back at 117 methylhistamine and 22 creatine and it had the levels for methylhistamine are 70-200. So I guess I was within normal range, but could it still be hyperadrenergic?Sorry for the really long post. I just feel SO scared sometimes and my symptoms feel SO intense at times that I think I am going crazy. The ER must think I am insane, because I have been there so much and there is nothing they do but pump me full of fluids. I am usually released within a few hours because my HR and BP always get to normal shortly after getting to the ER. I feel so lost, frustrated and scared...Thanks for listening and I am glad to be a member!KaT Quote Link to comment Share on other sites More sharing options...
CarrieJessica Posted April 30, 2012 Report Share Posted April 30, 2012 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 upsetMuscle painJoint painDiaphragm spasms ?...not sure if this is what these are, but right areaI 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 Quote Link to comment Share on other sites More sharing options...
katT Posted April 30, 2012 Author Report Share Posted April 30, 2012 Hi CarrieJessica. I wonder at times about IST...but I think that to have that you have to have a resting HR of 100+ right? In my understanding of POTS I don't see where one's HR goes up just doing nothing (usually just upon standing, etc). But maybe I am wrong. I just hope they aren't missing something! Sorry you are going through all of this as well! Quote Link to comment Share on other sites More sharing options...
StephL Posted April 30, 2012 Report Share Posted April 30, 2012 Hi, I'm new to the group too.I don't have much to add than a lot of your symptoms sound like mine.I'm a little confused by this whole pots/dysautonomia thing myself. I don't seem to have the same symptoms as so many here as far as my BP and pulse goes. I haven't had my ttt yet though so I'm hoping we will get more definitive answers from that. Quote Link to comment Share on other sites More sharing options...
CarrieJessica Posted April 30, 2012 Report Share Posted April 30, 2012 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. Quote Link to comment Share on other sites More sharing options...
CarrieJessica Posted April 30, 2012 Report Share Posted April 30, 2012 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. Quote Link to comment Share on other sites More sharing options...
bellgirl Posted April 30, 2012 Report Share Posted April 30, 2012 Welcome to this wonderful site, Kat!! I don't have joint pain, other than what is considered normal for my age. I have muscle aches and spasms, but I'm not familiar with the diaphramic spasms you are referring to, unless it is after you eat, then it could be related to blood pooling in your stomach. I was diagnosed with Vestibular Neuritis twice, but to be honest, I don't believe that was a correct diagnosis, because tachycardia due to dysautonomia can cause dizziness/vertigo according to my new ENT, who did a thesis on autonomic vertigo. That was my major symptom, when I was diagnosed along with the irregular tachycardia. I have just about all the other symptoms you mention. My holter was only for 24 hours, and was inadvertently unplugged during my sleep, so it was worthless. I have a blood pressure cuff that detects irregular heart beat, and I always know when it is happening. It is much better, now that I am on a long acting, cardioselective beta blocker, Bystolic, (I was on atenolol first, but it didn't work well for me being short acting), which also skewed the holter, as well!! It is better to have a cardioselective beta blocker if you have problems with shortness of breath. Praying for you to get proper treatment and diagnosis. Quote Link to comment Share on other sites More sharing options...
anna Posted April 30, 2012 Report Share Posted April 30, 2012 Well a big HELLO and WELCOME to all our newbes,KatT, did you damage your C spine in the car accident, oh and yes are you at all hypermobile?! Quote Link to comment Share on other sites More sharing options...
katT Posted May 1, 2012 Author Report Share Posted May 1, 2012 Hi Kimbellgirl and Anna, thanks for the welcome! Kimbel - my initial DX was vestibular neuritis with partial dysasutomonia in 2005. Then nothing (no symptoms/meds/etc) til car accident in 2010. Now TTT and cardio said POTS. I haven't had a continuous holter...just an event recorder that would record only when I pushed the button. I am thinking of asking for one that goes continuously so it can catch everything, even when I sleep. Sorry yours got unplugged when you were sleeping! My BP cuff detects irregular beats too, but when it does that it makes me nervous. I hate that it tells me really!Anna - yes, I did damage my C-Spine. Outside of 12 broken ribs I had severa soft tissue damage, whiplash, hip pain, soulder and wrist pain I also was noted to have decreased ROM in C1, C5 and L5. I also have myofascial trigger points through my cervical, thoracic, and lumbar region. Quote Link to comment Share on other sites More sharing options...
bellgirl Posted May 2, 2012 Report Share Posted May 2, 2012 So sorry about all your injuries in the car accident. That certainly does not help matters!! I'm much better on a beta blocker, but yesterday when I was exercising my heart rate jumped up to 214 and was as low as 50 starting out, so I'm still erratic It just takes some time to get used to it all ...you will always be somewhat symptomatic even with meds, but I am so much more functional, since I am getting better sleep. I hope that you find a balance with your meds; it's not a cure, but it makes life easier Quote Link to comment Share on other sites More sharing options...
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