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katT

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  1. In a recent post many of you were saying you get uncomfortable or scared when you get Brady...I am reverse! My heart rate will be around 50 and I am fine with that. It gets over 100 when I am just sitting or lying down and it scares the pants of me. My question is how high do you typically get before you go to the hospital? I think I freak out unnecessarily sometimes but when I get tachy or irregular beats (PVCS or PACS) I get so worried. Any assurances would be nice! I hate running to the hospital anytime my heart goes between 115-145 as they just give me fluids and send me home. Yet I can't help but get worried when it happens
  2. Michelle and GSNicole - thank you so much for the information, even though it sounds like you both had quite a go of it. Esp you Nicole...oy!! Doesn't help qualm the apprehension LOL...so hopefully there is some POTsies out there that had POTs while pregnant with good results Luckily I LOVE my obgyn and would fly across the country to see her...but she just stopped delivering babies a few years back. So I will probably see both her and one of her associates. She is very willing to learn and listen and order tests for things when I ask, so I feel she will be the same way during pregnancy. Charmed - I am not offended by your post. I adhere to the philosophy that everyone is entitled to their own opinion and outlook and not everyone will always agree. And I completely understand where you are coming from...I think if I had a family history like that and lived with the condition you do that I would feel the same way. My father and his side of the family are all pretty dang healthy. My mom has FMS, her mom had ALS, and her father Parkinson's. My guy is lucky enough to have a great history of health on both sides of his family (as far as genetic things go). I figure, genetically, that would leave my child with a 25% chance of inheriting something. Not to mention that just because a family member has something like FMS or POTs is that an automatic sentence for another...genetics are a crazy thing. Although it sounds like your family has been dealt a bad hand healthwise, and for that I am sorry. We have thought long and hard about all these possibilities. I will be 34, so I am not a young buck wanting to pop out some babies just because I want to have a child. For a long time I thought I didn't want to have one. But after moving back home and realizing how precious and wonderful family is and all that I missed out while living away for 8 years (I've been back nearly 4 yrs now) I want to share all these experiences with my own child and grandchildren. Both of us have very close knit families and think that family is more important that money, job, power, etc. We would only be having one child (unless we had twins..oy! but none in family...whew!). I know pregnancy may not be easy, but it also might. I already know I would have a C-section due to how fast my heart rate currently goes up just in exercising. I am not sure where my POTs came from. I had a severe case of acute vestibular neuritis landing my in the ER and hospital for 3 days in 2005. Symptoms started around that time. Then I was 100% completely fine and dandy, with NO symptoms until 2010 when I had a car accident. My symptoms developed/flared after that. I am fortunate that I am able to work a FT job and still enjoy a lot of things in life (with modifications at times). I know others on this board have MUCH worse cases, and my heart goes out to them. Just the same, Charmed, I hear you and completely understand why you have the position you do and I appreciated you sharing. My thoughts go out to you and your family and I hope things look up for you and you get more quality out of your life instead of just quantity.
  3. Hi everyone, So we would like to have kids but I am, quite frankly, terrified. Pregnancy as a "regular" person has always seemed a little scary to me...but pregnancy as a potsy is intimidating to say the least. I am worried about a ton of things...such as my heart rate going or staying tachy way to long, increased pain, increased dizziness, increased migraines, BP issues, and other symptoms. I have no idea what to expect and am hoping that all of those who had POTS while pregnant can weigh in...whether that is good or bad. I just want to know what to potentially expect. Also, did you wind up having a natural birth or C-section? Why? Thanks!! Kat
  4. I love this post! 1) I LOVE salt...now I have a doctor-approved excuse to eat lots of it!! 2) I have a great excuse to not have to give blood (although I give enough in labwork ha!) 3) I have a greater empathy for others with unseen illnesses 4) I have learned to research and become a very active advocate for my health with my doctors and helping others do the same when they get brushed off 5) I am more in tune with my body
  5. Sorry I don't have any good advice, but I have my fingers crossed for you! I don't fly either because I am terrified I will have an "episode" on the plane, not to mention potentially making my symptoms worse. The only thing I can suggest is to make sure you have lots of water before, during, and after the flight. Also, do some calf raises and pulses while in your seat to help with the blood pooling. As far as your relatives go, hopefully they are an understanding bunch if you need to re-adjust for a few days! Wishing you luck! Please let me know how it goes and any advice or tips you find after your flight!
  6. Abby, I have dizziness or odd sensations more days than not. So I feel for you!! Mine is worse when I am tired as well. It is also worse with hormonal fluctuations before and during menstration. And I swear at other times for no apparent reason at all!
  7. Sorry to hear about the weight gain! Were you on the brand name or generic? I take sertraline (which is the generic of zoloft) and only gained 5 lbs. I then started to track my calories more and once I got adjusted I am back down to my pre-med weight now. I would definitely talk to your doctor about it. Both my mom and sister took lexapro and both gained a fair amount of weight on that...so I would personally be apprehensive about that one. Good luck!
  8. I went to a new neurologist at OSU autonomic lab today (who was a really great doctor!!) and he said on top of the pots I have a "migrainous brain" and even when I am not having an active migraine I am still having symptoms (ear fullness, odd head sensations, dizziness, light sensitivity). SO...he prescribed Topiramate 25 mg PO once a day and we are going to be titrating up to 2 PO twice a day over the next fews month. Does anyone else take (or have taken) topiramate on a daily basis? Any side effects? Did it make anyones tachycardia or dysautonomia worse? I am worried it will affect my PVCs, PACs, and/or tachycardia episodes.
  9. Hi Friedbrain! I have issues with working out too. Your words "dizzy, then tachycardia, and then all-over body shaking" could have been my own! I will get dizzy, tachycardia, flushing, and then all-over body shaking. I thought maybe I am having a MCAD and/or hyperadrenergic reaction but haven't been able to confirm or deny this yet through medical tests. Have you taken your BP during this time? I had an intense episode about 3 weeks back and I had my BP cuff on me and it would range from 99/80 all the way to 165/117!! The high numbers really scared me. I did, after nearly 2 hours and no come down from BP spikes and tachycardia end up in the ER. Pumped me full of fluids and sent me home...
  10. Thanks for the warm welcome everyone! SO happy to know I am not alone or crazy Sounds like a lot of you experience POTs flares with GI distress. I swear at times I do not know what comes first...the POTS symptoms or the GI symptoms! Although ANY time I have GI upset or acid reflux I feel POTSY. potsgirl93 I get a similar issue with swallowing. I can swallow fine, but I often feel like my throat is tight or closing like someone is choking me lightly. I hate that. I do get flushes with GI issues, which then triggers the tachycardia and dizziness. Do you get that order to flushing > tachy> dizzy? frugalmama I have thought about MCAS because I have a lot of those symptoms. I read an article online about MCAS and hyperadrenergic pots - I think by Dr. Grubb. I had a urine methylhistamine done in the midst of a episode and it came back with 117 out of a range up to 200. So according to that it was normal. But I still feel like I have hyperadrenergic. Just not sure what else to do to check for it? But your episodes sound like mine! Do all of you have a GI doctor as well, or just self treat with mylanta or pepcid or something? I went to a GI doc, but he doesn't get POTs so he just wanted to do a colonoscopy and endoscopy - but I just had one last year and the anesthesia after effects were not pleasant!
  11. Newbie here and just wondering if anyone experiences an increase in their symptoms with GI upset, GERD, or heartburn? I've noticed that if I have some heartburn or GERD type issues going on it can cause tachycardia and/or dizziness. Does anyone else get this?
  12. 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.
  13. 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!
  14. 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/PACs Tachycardia 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 something Hot flashes without sweating. Feels like heat pringles and intense heat from my mid-back to up over my head Tremors and cold after hot flashes Occassional eye zig zags when reading Chest pain SOB GI upset...which will trigger tachycardia, hot flashes, and dizziness Fatigue Muscle pain Joint pain Irregular menstraution Waking 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 area I 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
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