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Everything posted by Canadiangirl73

  1. I have also been struggling with intermittent dysphagia and tremors. I actually have a prescription for a liquid meal substitute when I'm going through a phase when I have a really difficult time swallowing anything, even fluids...
  2. Thank you all for your kind words. Badhbt: I was screened for Lyme and Chagas and had the usual ANA panel in addition to test to r/o amyloidosis and sarcoidosis. All negative. They suspect a blockage because of my sx presentation and history of elevated cholesterol in the past whilst on the BCP, but are reluctant to take the leap and do an angiogram or PET (so am I, mind you) because they're afraid I will pass (given my history of arrhythmias and dysautonomia). My GP yesterday told me: "Better to have you alive and very symptomatic than dead. If we do nothing, then there's no harm done." Translation: they are scared of a potential lawsuit should something dire happen to me. Meanwhile, I still deal with my sx and this stupid status quo. Looneymom and cupcake: I am actively looking for a GP who will follow through and put in referrals when they say they will unlike my current GP. I've been waiting for her to refer me to a neurologist for 2 years...
  3. Sorry you're going through this. What other tests has your cardiologist conducted? An echo could shed light on minimal HRV.
  4. Thanks Alex for the article. I will read it. Strangely though, I had heart failure that coincided with my dysautonomia onset. I always said if I had not had that very transient heart failure, I probably wouldn't have this today! But when I told docs, I only got a glazed over look, as usual.
  5. 40 now, two months shy of 38 at onset.
  6. I'm sorry you are going through this. I am also experiencing the same thing. I saw the so-called best autonomic specialist in Canada and he didn't know what to do with me. My GP told me the same thing this morning. She told me I was a medical mystery, would most likely never find out the route cause of my autonomic dysfunction, that I should accept that fact and further testing was unwarranted. I feel like I exhausted all avenues in my country and might have to go abroad to get answers. I empathize. Hang in there!
  7. Hello all, Since I last posted seeking advice on whether to choose a PET scan over an angiogram, I saw my cardiologist and my GP. Both appointments were utterly disappointing, leaving me sad, frustrated and wondering what I should do next. If anyone knows where and to whom I should turn based on the following, please share!!!! So back in April, I had an echo. Perfectly normal. Stress echo in June: unremarkable aside from reduced stroke volume after exercise and quick raise in HR. Cardiac MRI in early July: mild global hypokinesis of left ventricle (meaning muscle not as energetic as normal) but normal EF. Failed attempt at doing CT angiogram in August because of lack of understanding of autonomic dysfunction (http://forums.dinet.org/index.php?/topic/24069-urgent-need-of-advice-before-apt-thurs-pet-scan-or-angiogram/?hl=%2Bpet+%2Bscan). When I saw my cardiologist, he had nothing really to offer me. He was stumped by the MRI findings and said I might be developing a cardiomyopathy from my heart beating so fast all the time. Thing is, my heart doesn't beat fast all the time, only when I stand. He should have known that based on the recent Holter results which showed a HR of 50 sitting and 117 standing. Plus, I do not recall reading anything that suggests POTS sufferers develop a cardiomyopathy from their condition because, like me, their heart doesn't beat fast all the time. Does anyone know of the contrary? To add insult to injury, he did not take any steps to investigate any further this suspected cardiomyopathy. He said he would put me on another event recorder in December and then decide whether he does an angiogram when I see him next in January. We need to rule out whether or not I have a blockage. Fast forward to today when I met with my GP. Well, she concurred with the cardiologist on the latter issue, refused to refer me to see other specialists (immunologists, another cardiologist, another internal medicine doctor), and told me to "accept that I will probably never know the cause of my autonomic dysfunction and all other tests would be pointless". I am so angry I could scream!!!! I saw the top-notch autonomic specialist in Hamilton, Canada, July of last year, and he too was clueless as to what to do with me, since my autonomic onset and presentation were unique. What should I do? Any thoughts? I will go the 23&me route and see where it leads me, but aside from that, I don't know what else I can do. I feel stranded. C
  8. My cardio wants me to undergo a test to rule out blockages. I had a stress echo back in June but it was inconclusive given my quick HR increase. I posted about it a while back: http://forums.dinet.org/index.php?/topic/23821-stress-echo-showed-reduced-stroke-volume-after-exercise-what-do-you-think/?hl=%2Breduced+%2Bstroke
  9. Hello all, I am in need of advice before my appointment with my not-so-nice cardiologist this Thursday. Last week, I tried to undergo for the third time a CT angiogram to no avail. This time though, my HR and my BP were co-operative. My BP was well above 100/70 and my HR was in the 50s. They could have easily done the test but given their poor understanding of dysautonomia, they said my HR would go up when I was to transfer on the CT table and was given the iodine contrast, and they were afraid it would stay elevated for the test in spite of my insisting it would go back down very quickly. Bottom line, they wouldn't listen, so I went back home, frustrated. So now, my cardiologist will have had wind of this failed attempt and bring up the two other options he presented to me at my last appointment: an angiogram or a PET scan. Well, back in March, when another EP suggested a persantine test he was clearly set against it, telling me my BP would bottom out and I would have a fatal arrhythmia (I have a history of documented SVT, ventricular bigeminy, NSVT, as well as a prolonged QT interval). He offered me the test back in July, to my great confusion and this time told me there would be paddles in the room should I have an irregular heart rhythm. This did not reassure me. The fact he changed his mind without giving me any explanation doesn't build my trust in him and the PET scan. During a PET scan, they inject you with persantine and then aminophylline. I read the side effects of both medications and there are a lot of nasty ones in normal people, never mind those who have dysautonomia and a predisposition to have arrhythmias like I do. Another doctor last year told me she would NEVER do a persantine stress test on me for those two reasons. The other option he brought forward was an angiogram. Not sure this would be the test for me given my heart is easily irritable. I know it is not the same location or organ, but I had an irritable uterus throughout both pregnancies (meaning it would contract almost constantly), probably in hindsight part of my nervous system issues. My GP decided against an IUD for that reason since she thought my uterus would see the IUD as a foreign object and try to reject it. Well, having a catheter in my heart might send it for a spin if my ticker copies my uterus' behavior, exposing me to risks of punctures in my heart, vessels, and strokes, etc. My cardiologist backs me up against a wall, leaving me little time to make decisions about tests. I know I will have to choose between those two on Thursday and am actually considering not doing any. Then again, I am not sure if not ruling out once and for all whether I have a blockage or not is a good idea. UGH!!!! As you can tell, I don't know what to do! Has anyone undergone one or both tests? How did it go? Did you have complications? I should add I am 40, normal weight (was underweight before dysautonomia struck. Dang betas!), but had elevated cholesterol for close to 14 years whilst on the birth control pill, but cholesterol levels have been normal since I stopped the BCP 6 years ago. My dysautonomia onset coincided with a very transient heart failure over two years ago, but the heart failure actually resolved within two weeks time, so my EF has been good since July 2011. What should I do? PET scan? Angiogram? Nothing??? My head is spinning I'm so undecided. Help!
  10. Woohoo! Hope this works well for you and you see lots of improvement!
  11. As others suggested, you could scoot on your bum each step at a time. That's what I used to do when I couldn't do stairs in an upright position. As for showers go, I started with a bath chair but had way too much pooling in my legs, so I had a handheld shower installed, one with a long hose, so I can sit down in the tub with my knees under my chin to prevent pooling.
  12. I agree with what others have said. Increasing our leg muscle mass is paramount in order to push blood back up. When I was in cardiac rehab (and they had no experience in dealing with a dysautonomia patient), they put me on the treadmill, the recumbent bike, etc. and expected me to perform for a set number of minutes. I quit the program and did exercises myself (albeit suggested by a physiotherapist) to strengthten my leg muscles at my own pace. It took a bit of time, but I went from being semi-bedridden to quite functional. My HR still shoots up by at least 50 beats when I stand, but goes from 50ish to 90ish/100 instead of going from 70s to 140s/150s.
  13. Thank you all for your replies. Since I posted this, I really paid attention as to under which circumstances this burning feeling sneaks up on me. Turns out it is only when I've been upright for a while and it resolves after some time when I lie down (one hour or more). I guess it is a form of shortness of breath. I don't hyperventilate but breathe normally, so I can only assume maybe it stems from lack of oxygen or blood to the lungs... As far as acid reflux goes, I get it from time to time in addition to a whole lot of GI issues. However, when I do get reflux, it is a constant thing made worse by lying down.
  14. Hi all, I haven't been here for a while as I have been busy with my two young children while school is out and had reached some sort of plateau as far as symptoms went. Well, I've been having a relapse for past few weeks, but more so for the past two. One new symptom (never had this in past 2+ years since I've been diagnosed with dysautonomia) that's been pestering me lately is this feeling in my throat and lungs one gets after running in the cold or running for a long time, you know, that burning feeling. I just got off the phone with my cardio's nurse who served me the "it must be anxiety" answer (insert expletives here) when I told her about it. I contacted his office in the first place because I have been experiencing A LOT of palpitations since last Thursday. Anywho, I am the opposite of anxious. I am too calm lately, which is kinda weird cause I'm the kind of person who gets restless easily (not anxious ). But then again, the too calm thing could be caused by my on/off brady (caught my sitting HR at 44 last week). Does anyone else get this burning feeling I described? Nothing helps me except to ride it out. Any clue what could be causing this? BTW, I don't have a cold or allergies. Thanks!
  15. I remember reading a study in which they said active standing was actually better because the patient uses leg muscles to trigger venous return and you actually had a better idea of what was wrong. On a TTT, those muscles aren't used so even a "normal" person would have a higher increase in HR. I can't find the study but will post it if I come across it again.
  16. Hello all, So about a month ago I underwent a stress-echo during which they perform an echocardiogram before you get on a treadmill and after you've been on it. So when I started the test, my HR was 92 but rose to 157 under 90 seconds. No surprise there; I don't do inclines (but fine with stairs?!)... I saw my cardio last week and he told me he now had tangible proof that something is physiologically wrong with my hemodynamics when I get upright and exercise since my stroke volume was perfect before the test (ejection fraction just fine) but not after the exercise part. He told me from what he observed on the echo after the stress test it was normal for me to experience shortness of breath and other symptoms after being upright and tachy. So a small victory for me as I now have objective evidence it is not all in my head (HA!), but this is coming from a cardio who is not an autonomic dysfunction specialist. He did assure me though my heart is perfectly fine and the compromised hemodynamics after exercise are caused solely by autonomic dysfunction they know I have had for over two years now. Has anyone else had similar results following a stress-echo? I did a bit of research on the internet re: autonomic dysfunction, exercise and reduced stroke volume, and found studies by Dr. Levine (surprise! surprise!) and this one: http://jap.physiology.org/content/103/4/1128.full BTW, I am no longer deconditioned. I was for a while but have been quite active since last Fall and now chase my two young kids all day, in spite of still feeling like a bag of dirt (BP this morning was 78/54). Guess that's for the other thread about if I hide it! Thanks!
  17. My symptoms do not subside at night, they flare up. Although I have absolutely no problem falling asleep, I wake up between 2-4 with adrenal surges. I suspect it is either a way for my body to compensate for a dip in my BP or I am hypersensitive to the hormones the body releases at night so we slowly wake up in the morning... or both. I also feel pretty miserable in the morning until I take in enough fluids.
  18. Here is the thread I started in February: http://forums.dinet.org/index.php?/topic/22521-pressure-in-blood-vessels-in-neck-and-esophagal-pain/?hl=%2Bpressure+%2Bin+%2Bneck
  19. Yes! Exactly as you describe: tremendous pressure on sides of my neck. I posted about this a while back but cannot find thread. I mentioned this to my GP who just gave me a glazed over look. I checked my BP when this happens and it wasn't too low or too high. Wish I knew what it was!
  20. Sorry you are going through this. Just a thought though: could this manifest itself as Trousseau Syndrome but be a side effect of a med you are on, like the BCP? As much as docs can take forever to diagnose some things, they also can jump the gun and overlook other reversible causes. My 2 cents...
  21. I'm the same way: can't stand the warm weather. I feel a rebirth every October/November when things are cooler. Even though I've been like this my whole life, it has become worse since onset 2 years ago when I lost the ability to sweat. Add compression garments in this weather and it is a recipe for disaster. I know some ppl use cooling vests. Maybe that could be an option for you. Or if you are physically able to go to a mall or coffee shop where they have AC for a few hours, maybe it would help.
  22. Thank you for the article. Interesting. My ferritin has been low on and off for the past 7 years, but consistently low since 2009.
  23. Canadiangirl73 Could you describe what you feel like during an adrenal surge. How is the shaking different? Is it an all over body shake? When he has shaking spells this bad, I am not able to get a blood pressure reading. Most of his shaking is from waist down. However, there have been a few times when it has showed up in his right arm and hand. Looneymom, During an adrenal surge, the shaking is mostly in the legs and more like "shivers". There is also a bit of rigidity involved when these happen during a surge and always muscle soreness afterwards and chills. It is a bit difficult to describe. The other sort was my entire body and resembled Parkinson's tremors. My husband had to sort of stabilize my body to calm the Parkinson-like tremors in order for me to take a BP reading. Hope your son feels better now.
  24. I experienced this soon after my onset. It happened to me under 5 times, mostly when I woke up. I had tremors and shaking that resembled Parkinson's. My head would bobbled, my arms and legs would shake. Things resolved gradually over 1/2 hour, but not all at once. Left arm always last thing to stop moving. It was completely different from the shaking that accompanies adrenal surges and my vitals were actually pretty "normal" during those episodes. I never mentioned it to doctors since they tend to chalk everything up to dysautonomia and don't do tests. I did however have a brain MRI since and eeg (for other reasons) that were normal.
  25. I wear an abdominal binder in addition to the compression stockings. I find I get the most benefits from the binder.
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