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Everything posted by valliali

  1. I am definitely a hider. I don't tell anyone, and the few people who do know about it, I do anything possible to change the subject when it comes up. I think it's because I am aware that most people around me think illnesses like POTS and CFS and the like are bogus. I did too, honestly, before I myself got sick. The other day I was at a volunteer thing I do, and there is a girl there who has been sick for awhile. No one really knows what is going on with her, and one of the DOCTORS I was volunteering with said, "It must be Chronic fatigue syndrome or one of those things. You know, the illnesse
  2. I know this discussion has been brought up before so I hope it is not inappropriate for me to bring up a post about drinking alcoholic beverages. But I am of age, and I love dark beers. Sometimes I don't tolerate alcohol at all, but when I feel pretty up for it, I indulge in a couple of my favorite beers. I know that many dark beers, like porters and stouts, contain some coffee and chocolate. I cannot quite figure out how much caffeine is in the beers, but I know the FDA recently took an interest in the topic because of the combination of alcohol and caffeine. So there must be some. I have fou
  3. Also a veg! I definitely support the call for a multi-vit and B vitamins. B12 is especially important for vegetarians.
  4. I also work full time, but like others, work for a university system so I have generous time-off. I'm also a student, and will be applying to veterinary school next fall, which absolutely petrifies me because I have no idea how I will survive it. But I always swore to myself that as long as my two feet were working, I was going to do it. And they are still able to get me up and out everyday. I don't think I will ever learn how to balance. Sometimes I wonder if I had just taken it easy on myself when I first became sick if I would be better now, or would have prevented this illness from spinnin
  5. I used to live in the mountains of Wyoming and worked for an outdoor outfitter company. I led all kinds of backpacking and mountain climbing excursions. Oh, those are the days I would kill for. Elevation was one of my first indications something was wrong too. I went hiking in the mountains and was in really, really good shape, yet my heart was pounding out of my chest and I couldn't breathe. I find that elevation affects me greatly. However, on the same note, I do absolutely best in the driest climate possible, which is usually higher elevations. so when I adjust to an elevation, I actually e
  6. I am on propranolol as well, and like others have said, I take a very small dose. Because my heart rate was so high, my doctor prescribed 60mg, still a "normal" dose. I felt horrible on 60mg, but do really great on 5-10 mg every four hours. I believe that propranolol has been my life-saver. I too have had HORRID reactions to other drugs and also have a phobia of taking new ones. At this point, I pretty much don't at all take new drugs, not even antibiotics. But propranolol turned my life around. I have been improving ever since the day I took it.
  7. Flushing was actually my first symptom. I went one day from never having turned red in my whole life to suddenly turning beet red and burning for hours. It was so bad for the first year that I had all these broken blood vessels on my face, which fortunately are much improved. At first, my flushing was strongly connected to anxiety - talking to people, going to doctors, etc - as well as cold to warm. Then, the flushing was really only when my body temp was low, then I became warm, in which case my body temp shot up and I flushed and turned really red for many, many hours. Now, three years later
  8. I sure am! Have had some really bad experiences from flying. Triggers the PSVT, which then triggers major panic (though I believe the PSVT in itself causes the panic-like feelings and they are MAJOR)... I know there was another thread about this not long ago. My flying PSVTs were triggered only by the ascent and descent. I actually felt gloriously well up in the air. But the heart episodes were enough to do some serious fear damage. I used to fly ALL the time and love it because it always meant I was going somewhere really exciting. I haven't flown since a couple of years ago when all this hap
  9. Oh, I'm also wondering if anyone with these symptoms also has gastritis? those symptoms describe how I feel a lot, except for the tightness in my chest/inability to get in a full breath. I have no belching/burping, it doesn't seem to be gas, so I really think something is going. I had an abdominal ultrasound awhile ago - does anyone know if a hiatal hernia would have appeared? Also, can the symptoms of a hiatal hernia be so episodic? Aren't hiatal hernias really controversial?
  10. I could have written your post myself! Same EXACT thing. Lots of pressure in the upper abdomen, feel like cannot get a full breath of air, major bloating, which is made immediately worse when standing upright... mine, too, is very episodic. I can go months without having an episode, in which case I eat all the gluten in the world and don't feel badly from it at all. I also tested negative. And then it'll be out of nowhere I'll be hit with a period of these pressure issues in the upper abdomen. I often tell my boyfriend that it feels like my diaphragm isn't working right, and I find that if I p
  11. I too get very tachy after eating, especially a big meal, and will get palpitations. I do believe it is related to blood being diverted to the stomach for digestion, though I have also heard it may stimulate the vagus nerve, which heavily influences our heart beats. Plus, digestion just makes the body work a bit harder, and my body always gets tachy when it has to work a little bit!
  12. Oh my gosh, I had the SAME exact thing happen to me when I flew over a year ago, and I posted about it on the dysautonomia boards forever and while it definitely seems that everyone has their own unique reactions to flying, I hadn't heard of anyone else having issues with SVTs during flying. Mine were PSVTs and they were also triggered only during the descent the first time, and then the ascent the second time. It was HORRIBLE. I couldn't break mine, and my PSVTs cause extreme panic and heart pounding. They are very very symptomatic and then to be trapped in the plane, oh my, it was my worst n
  13. thankful, that does sound exactly like what i have!!! how long does your flushing last? do you find that anything helps??? oddly enough for me, i find that sleeping will break one of my flushes. while they usually last like ten hours, if i were to sleep for even 15 minutes, a flush would be nearly gone. i assume that sleeping "resets" whatever system is off.
  14. Very interesting thoughts, Erik. I mean, for me, it sure feels like my body is over-doing the warming process! I know that many rosaceans suffer from the same exact thing I am feeling - the hours long redness and burning in the face - from going from cold to warm. But I think the flushing with rosacea is a result from a blood vessel disorder in which they remain overdilated for abnormally long. Hence the reason most rosaceans also seem to experience the same kind of flushing in response to many things that trigger vasodilation, like warm foods, exercise, a hot day, etc etc. I do not flush in a
  15. Does anyone else have flushing problems when it becomes cold?? Mine are a lot like rosacea. When I am cold for a prolonged time (like an hour), and then become warmer (like go inside), my face gets red and really, really hot and this lasts for hours and hours. The flushing was one of my first and more severe symptoms. I never ever turned red before getting sick. The weird part is that I don't flush at all until the weather turns colder. I live in Northern CA, so I get about six months of absolutely no flushing, nothing can trigger it. But when it's cold, I just dread everyday. I find that when
  16. I honestly think your best bet is Stanford. I have seen Dr. Friday, and I see Dr. Montoya as well. I have seen many docs at Stanford, but those were my main. I definitely felt like I was able to get in to see docs quickly if they felt it was important for me to do so. Dr. Montoya is one of the busiest doctors in the world I think, but he always squeezed me in his schedule, and made many exceptions to see me, because he believed it necessary. I don't have an appt with him until Jan this time around, because there isn't as much he can do for me. The doctors at Stanfrod, from my experience in CA,
  17. Will the sleep study be able to indicate whether or not you have PH? I have heard that the PH tests are very invasive - have you had your PA pressure measured on an echo? I do not get a cough, at all. Today, I woke up, feeling good. No shortness of breath. Biked down the road to work, chest tightness. I just feel like it is so difficult for me to get in enough oxygen, yet my capillary refill and mucous membranes all seem normal. I also have faint chest pain. When my chest gets tight, I also notice significant tachy, and way, way more palpitations. I'm having the "runs" of palpitations again, w
  18. tammy, could that be a result of asthma? i notice you're on atenolol too - does it worsen the sob?
  19. interesting, thanks guys. erik, have you ruled out pulmonary hypertension? i thought of it when you said that you had coughed blood before. it's rare and unlikely, but just wondering... i will definitely have to consider some of these tests, especially one where they can induce the asthma. like i said, i am very frustrated with scheduling appointments when i'm symptomatic, then being fine when i am not and wasting a lot of money. interestingly, today, i felt pretty okay with the chest tightness, like far, far better than yesterday. but then, shortly after i began driving somewhere with the win
  20. wow, you guys are amazing. here you are with your own issues and questions, but taking all this time to help me with mine. thank you so much. erik, you ask a lot of good questions! i have been ruled out for almost everything that would be a "differential" diagnosis for POTS. like thyroid issues (i have had extensive thyroid tests, all super normal), pheo, other neuroendocrine problems, lupus, and all kinds of viruses and bacteria (mycoplasma, all the herpes, etc etc). the only unusual test that i did have was not long ago, and it was an epstein barr. it was the VCA test, and it was outrageousl
  21. i used to get those episodes often. my first symptom was definitely that of an overactive sympathetic nervous system. i was hot, flushed, sweaty and just jittery all the time. like i was constantly on an IV of coffee. i also suffered from serious panic attacks, and very often. i am on a beta blocker, and it has helped calm my SNS so much. i very rarely get panic attacks, or those sudden hot and flushy feelings.
  22. Hi guys, thanks so much for all the responses!!! I have had many poor man's tests - none showed a 30bpm increase in hr. Most of the time, it's around 10-15. The cardio who did my tilt really knows nothing about dysautonomia. In fact, my diagnosis is stated like such, "patient had a sudden episode of sinus tachycardia with heart rates abruptly increasing from 120 to 170. episode lasted 3-4 minutes with symptoms of forceful heart rate and panic. this is a most unusual response, one which i have never seen. this indicates some degree of autonomic dysfunction, likely POTS as it is the most common
  23. Thanks so much, Rama. I actually can't open those publications on my computer, so I'll have to wait until I go to work, where I will have access. So I might get back to you in a day or two with some questions:)
  24. Through the course of my illness, I have found that I get these episodes of constant chest tightness, where I feel that I am only able to get a half breath and I become short of breath very easily, like even upon trying to complete a sentence. The weird thing is that these episodes come on suddenly and for no real apparent reason, last a couple of weeks, then just disappear and don't return for months. I have found that for about the last week, my finger joints have been swelling up and are very stiff and curled in again, although this hasn't happened for over a year. It was a couple days ago
  25. Hi yogini- I have done the poor man's test many, many, many times, both with and without my heart rate monitor. My cardio has also done it. Never once has my hr increased more than 30. In fact, almost all of the time it increased about 5 or 10 bpm. My blood pressure does not drop. I have even done it the times that I feel like it races when I stand up, but my heart rate usually goes down to a more normal level by the time I can even count. So, by the time I count the 15 seconds, it's already gone down enough that it's not even close to 30bpm higher than what it was when I was sitting. Do peopl
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