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Everything posted by valliali

  1. I think something like Afrin could help me a great deal, but I am really super sensitive to anything that increases heart rate. I cannot even drink decaf coffee (the 99.5% decaf kind) because it makes me feel like I drank regular. I am already super super anxious about flying, especially after having symptomatic PSVTs, so my goal when flying is to keep the heart rate as low as possible. It sounds like it is rare that Afrin causes the heart rate to increase, but I usually get the rare side effects. When you guys who use it say that it causes some tachy, is it much? Is it noticeable? How much mo
  2. Do any of you who use the nasal sprays have facial flushing? I used to have facial flushing really badly, and now, thanks to some improvement in my overall health, it has gotten a lot better. But it still happens and I always feel like I could be on the verge of a return to the days that I was red and hot all the time. I have read that steroid nasal sprays can much worsen rosacea or cause acute rosacea in people. This makes me SUPER nervous. I cannot find anything that links omnaris specifically to this, but only perhaps because it is fairly new. Other nasal sprays do have their stories though
  3. I have been prescribed Omnaris, which is a steroidal nasal spray, for chronic esutachian tube dysfunction. My ears are almost always clogged or need to be popped, which is usually just a little annoying, except for when I fly. Then it crosses to horrible discomfort and pain. It is speculated that I have these issues due to a deviated septum, though I have had the deviated septum for many years and have only begun to have the ear problems since I became sick so of course I wonder if the problems correlate to my overall health issues. Nonetheless, I am preparing to fly again in a couple of weeks
  4. I was first prescribed the slow-release 60mg form of propranolol. It made me feel as you describe. Very dizzy, disoriented, as if I was just not even existing. I was truly in another dimension. It also caused migraines, which is not something I have ever experienced before or after. I was planning to give up on the propranolol, until I tried a 10mg dose, and boy, what a difference! Now, I take 5mg doses, and propranolol is the only thing that has helped me... and it has helped a lot. I do believe if I were to take 20mg, I would feel similarly. I'd suggest cutting your dose to 5mg before ruling
  5. Second the propranolol. Is propranolol and atenolol basically the same? Both non-selective right?
  6. I definitely hear what you guys are saying about overdoing it, but the problem is that any minimal exertion sets me up like this. So I either do a little something, and endure these symptoms, or I do nothing. And I've tried both means - exercising and doing nothing. And neither seem to work out so great for me. Not getting any stimulation at all is causing me to gain weight, feel more lethargic and sluggish, and I think it is even contributing to depression. There is a lot for me to feel depressed about, but I think exercise helps prevent that. Unfortunately, my body really doesn't reap much "
  7. I have grown to fear exercise because of the symptoms it causes, but I am trying to ease back in because I know I am not doing myself any justice by not exercising. I used to be a Division 1 athlete in college, so exercising has always been HUGE for me. At first, after I got sick, my heart rate would go up into the 220s very, very easily immediately after exercising. My heart would palpitate non-stop it seemed. I since started taking beta blockers, which has helped my heart issues a great deal. However, I am still very uncomfortable during exercise, and wondering if anyone else has similar iss
  8. Lack of family support is one of the hardest things I deal with as well. My mother has always been insensitive, but this illness just really took the cake. When I first became suddenly sick with heart rates all over the place, my doctor believed that I needed to go to Mayo ASAP. As a 22 year old who moved to Africa fresh out of college, I didn't have much money (though I was fortunate to have already obtained good insurance) so I asked my mom to give me a loan for the airfare to Mayo. Not only was she pissed that I asked such a thing, but later, in the SAME conversation, she asked me if I want
  9. I get it too when I am not on a beta blocker. I feel shaky all over, but also have a noticeable tremor in my hands. Do you use beta blockers, or have you tried them?
  10. I too am a huge huge fan of propranolol. I am so thankful for propranolol everyday that I am able to walk around, go to my job, and basically function again, in ways I couldn't prior to propranolol. But it is important to note not everyone does well on beta blockers. I take a very very small dose (5mg) and it still works for me. i was initially prescribed 30mg at a time, and it near knocked me on my arse. As for effexor, I can't believe I survived my experience with that drug. I took one starter dose of the drug, and had by far the most serious symptoms I have had yet with this illness. It wa
  11. Thanks, guys. I have been okay since then. Still a little worried. It certainly felt "stuck" catlady, like you describe. But it didn't race afterwards, it thumped hard, but not too fast. I think it must have been a PVC that got stuck mid-flip. Tachy, I am in northern CA, and we do have some rain moving in, but I don't feel it much out here. When I lived east and the rain came in, I was bed-ridden. But for some reason here, it doesn't get to me.
  12. Like most of you, I have been suffering with lots of palpitations, tachycardia, and a PSVT for awhile now. I have grown very, very accustomed to the flip-flopping in my chest, and it has come to not really bother me anymore. The tachycardia and PSVT sure do, but not the PVCs. However, tonight, I felt something really, really different. I imagine it was a PVC because it was shortish in duration and felt like the drop in chest/flip-flop, but it was super intense. I feel like the PVC got "stuck" in the flopping part and I realized I couldn't breathe. Then I felt all this blood surging into my hea
  13. I, too, am a flusher without MCAD. I had never flushed a day in my life, till one day, BAM! That was my first symptom. I spent about a year with the worst flushing and burning; now it is more tame with a beta blocker. My flushing is really only triggered after my body temperature is cold then becomes warm. But during the summer when the temperatures are consistently warm, no flushing at all. When I flush, my body temp. literally does shoot up, into the 100s sometimes. When I am not in a flush, it's around 97. So it's pretty bizarre. I also think mine must be a temperature dysregulation thing.
  14. It seems that most of us have issues with hormones, which would include BCPs, but perhaps no one else speculates that the pill could be the actual cause to EVERYTHING. I have read a great deal that pills like Yaz can cause severe panic issues, but I haven't read much about that correlation with Ortho Tri Cyclen. In fact, I could never find anything on the internet that resembled the issues that I had. I went to a gyno, who was really open minded about my health issues, and she thought there was no way in a million my problems could be from the pill. She said if I did have problems from it, the
  15. Thanks for sharing, girls! No, no, I did not read about a link between BCP and dys at all. And it seems really unlikely to me that there is much of a correlation, though I have no doubt the pill can cause, or enhance, some discomforts. I only ask because at the time that my symptoms came on - OUT OF THE BLUE - one of the only changes in my life at the time was that I had started ortho tri-cyclen about three months prior. My initial presentation of symptoms consisted of massive facial flushing (no history at all), panic attacks (again, never felt anxiety a day before), and rapid heart rates. Al
  16. Does anyone speculate this is the CAUSE of your ans dysfunction? Are there any correlations between the affect on estrogen from BCPs and the potential to offset our bodies in such a way that would result in dysautonomia? If BCPs do play a role in the initiation of these issues, would you think that the symptoms would go away years after the pill was ceased?
  17. I cannot tolerate decongestants either, and unfortunately, I have quite a deviated septum from an old nose break that causes me a lot of sinus problems. In fact, I just learned that I may have to get it fixed (though it isn't noticeable) or get tubes in my ears because of chronic eustachian tube dysfunction. So when I have a sinus cold, I too am miserable. One natural remedy that helps me is a tomato-garlic-hot sauce drink. I usually heat up a can of V8 tomato juice, chop up a clove, or two, of garlic, and add about a tablespoon of hot sauce and a splash of lemon juice. This drink was not enjo
  18. I do not know that I have hyper, but I have a lot of "hyper" like symptoms. I can say that when I took my first "starting" dose of Effexor, I was sure I was going to die. For over eight hours, my heart rate was around 220, my blood pressure was extremely high, and I was in a pure terror of a panic. It was honestly the worst experience of my whole life. I have since learned what a hard time people can have weaning off Effexor, so I am actually glad that I did not tolerate it. But I can say that never, ever again will I take anything that intends to raise norepinephrine. Not saying this is the c
  19. I don't think anyone here can assure you that you'll be fine if you double up your beta blocker dose, but for me personally, I take higher doses when I know that I am doing something more stimulating. I am on propranolol but usually take a very, very low dose. So for me to double my normal dose is still a really low dose. I am sensitive to meds, so I assume that if I took a dose that someone more normal would take, I could end up very ill. In regards to pot, I used to smoke pot very occasionally prior to POTS with no problem. I tried it once after becoming sick and had a horrible, horrible res
  20. it's so interesting that so many of us are sensitive to weather and especially the changes. however, i just cannot understand the correlation with humidity especially. i actually do best in dry hot hot hot weather in the northern valley of CA. i so much look forward to hot summer days. come east coast humidity, however, nooooooooooo way. anyone understand why this may be?
  21. I live in CA, but a little over a year ago, I moved back to the east coast because one of my parents, whom I am very close to, is sick. I moved back at a time that the weather was still very humid and cloudy days were common. I drove from the west to the east, and as soon as I hit Arkansas, I knew I was in for severe problems. I found that the humidity made me very short of breath and also very, very tachy. I have a PSVT, which is super rare in the west, but I was having them over and over again when I returned east. On the cloudy or rainy days, I had the most unbearable head pressure; a sensa
  22. Interesting research, thanks firewatcher! I actually feel better at higher altitudes, if that makes any sense to anyone. I recently stayed for three weeks at about 8,000 feet and felt great!!! In fact, before I left for the trip, I was feeling really horrible and I live at sea level. I was really nervous about going up in elevation because I assumed my reactions to flying were due to the elevation. Then I got up and spent those three weeks feeling like totally cured! During that trip, we also drove through some pretty sudden elevation changes - like 11,000 feet back down to 7,000 and I had no
  23. rama, do you have the same affects if you spend a long time at high altitudes? say the same altitudes that planes are pressurized to?
  24. can anyone make sense of this? i do fine at altitudes up to 10,000 feet, so I am not sure why I don't do well on the plane. I have wondered if it's my anxiety that is making me symptomatic, or if it's actually the flying.
  25. I have found my ANS issues to be improving over the years and now feel like I am ready to exercise again. I once was a collegiate division 1 athlete, so exercising is something that has always been huge in my life. After first noticing the onset of my symptoms, I used to force myself to the gym, despite heart rates in the 220s. Over time however it became impossible to exercise, as my heart rate was way too high, even on beta blockers. Today was the first day I really exercised in months. It is something I am very nervous about doing. For me, even on propranolol, my heart rate still gets uncom
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