Jump to content


  • Posts

  • Joined

  • Last visited

Posts 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 more do you think the Afrin helps than the steroid? Do you think the steroid alone would ease eustachian tube problems?

  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.

    I think it might be able to help me, at least to get through a flight, because I am sure that inflammation is my problem. And if there are no ANS side effects, I'm all game for giving it a try. But the flushing I cannot tolerate again.

  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, and I already have incredibly flight anxiety as it is, and worrying about my ears only compounds the anxiety. I have not tried the spray yet because I am too scared of that as well!!! I have had so many bad reactions by putting things into my body and I just don't know if I can't handle another medication! I was assured that the nasal spray should have no effect on my heart or ANS, but I am wondering if anyone else has used this? Does it help? Are there side effects?

  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 it out. Most of my doctors have told me that 5, even 10mg, is not nearly enough to help my symptoms, as most people can tolerate much higher doses. Many of us are super sensitive though, so smaller doses do in fact work for us in the same way a larger dose works for a "normal" person.

  5. 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 "exercise" from super minimal activity. I don't really think I am deconditioned in my muscles or fitness, it's just my heart that causes so many problems. And actually, exercise makes me feel much more awake and alert (probably because it also causes my heart to race). It's such a Catch-22. My heart is like a firecracker - give it a little spark and it fires off. I don't get it. Are the results of exercise (racing heart all day long, chest tightness, etc) a result of adrenaline? I do take a very small dose of propranolol (5mg) which is probably not enough for me to exercise. But anything more than that makes me super tired! Again, a catch-22! I suppose I should take a higher dose in order to get back into exercise, even if it means I will feel more sluggish and tired. I think that might be better than not exercising at all.

  6. 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 issues.

    Now, my heart rate stays around 170, and if I am on enough of a dose of beta blocker, that usually doesn't bother me. If my beta blocker is wearing off/not enough, 170 will make my heart feel like it is racing. Many time when I exercise, my heart rate will suddenly start to drop into the 140s, even lower, and I'll get this aura of extreme fatigue. I also become very cold and pale. I think it is a vasovagal episode, as I've read on the internet, but I am not sure why it only happens when I exercise. I do not have vagal episodes at all any other time.

    Also, after I exercise, my chest feels really really tight for at least a half hour, sometimes all day. I don't exactly feel short of breath, just like my lungs are resisting a full breath. And, my heart rate will stay high for the rest of the day after exercising, like in the 130s. No matter how many beta blockers I take, it seems.

    Lastly, after any kind of exercise, when I am done and sit down/relax, I will feel numerous little twitches throughout my legs from the knee up. Like muscular spasms, only many small ones all over my thigh/butt region. They last for a half hour or so.

    Not being able to exercise has been one of the greatest losses that being sick has caused me. I used to rely on exercise daily as a stress-reliever, and I am the type of personality who likes to push my limits physically. I've tried yoga and more easy-going types of exercises like that, but they just don't do it for me. I have always been into extreme sports, like triathalons and such, so I don't know, I'm just trying to understand why this has happened. I am wondering if anyone else experiences these issues? I imagine a racing heart is common with exercise, but is it for the rest of the day? What about the sudden changes in heart rate? The chest tightness and muscle spasms?

    Thanks, everyone!

  7. 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 wanted to go HIKING in Ireland with her! Right after I told her my doctor thought I needed to get my severely out of control heart looked at right away!! Hiking! I also dealt with way too long her blaming me for getting sick, blaming me for not asking doctors the right questions, etc etc. Once I asked for a family history of anything like POTS at the encouragement of my doctor, and she was livid with me for even suggesting that my condition was genetic when it was so painfully obvious to her that it was in my head. The worst part is that I had always been very athletically driven, competitive with sports and fitness, never complained about aches and pains, pushed through any illness to keep going, so I thought of all people, she would be the one to know that this was seriously for real, and seriously bad.

    Truthfully, I have no relationship with my mother anymore. I would never encourage anyone else to handle it the same way that I chose to because everyone has different situations, but for me, she was doing way way way more damage than good in not only my rehabilitation, but just overall. I feel a giant relief since we stopped communicating, but I do often feel very sad that I do not have a familial support system and find that I often really long for a caring, supportive family.

  8. 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 was horrible. Others do claim to do well with Effexor, but I do have to encourage you to do some research online about the stories of stopping Effexor. After reading those stories, I became very thankful that my body majorly rejected it the way that it did. There are hundreds, thousands, of stories of people who wish they had never started Effexor. You should read some of the insights online so you can make an informed decision. I know my doctor didn't share with me those side effects when I was prescribed Effexor, and it sounds like a lot of other people were really pissed that their doctors hadn't either.

  9. 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.

  10. 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 head - like very very strongly. It was the same feeling you'd feel if you did a handstand and squeezed all the blood to your head. Only it happened in a matter of seconds. The heart being stuck, not being able to breathe, and the head rush lasted about 20 or 30 seconds, which inherently isn't that long, but felt like eternity. I was finally able to grasp for breath, and then I got a really strong hot flash in my head and face.

    My heart pounded hard for a few minutes, then resumed to normal. I developed a headache afterwards which lasted.

    Has anyone had anything like this? It really really freaked me out. It was such an intense sensation. I really had time to think to myself, "oh my god, my heart is stopping. I am going to die." Could something like this be life-threatening?

  11. 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.

  12. 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, then two years after stopping it, I would be better by now.

    I just can't help but wonder because one day, I was healthy as ever, never had a single health problem ever, not even an ounce of anxiety and then the next day, I am a hot, flushing, panic-ridden, heart-thumping mess. So the progression wasn't literally overnight like that, but it did seem to come out of the blue. I was not sick beforehand - for at least six months I hadn't even had as much as a cold. So as for what triggered all this, like I mentioned, the only changes in my life were the pill and Africa.

    I returned from Africa healthy as an ox, and it was about a month later that I started developing weird symptoms. I don't think the plane ride triggered it at all. I either caught something in Africa, or it's from the pill. I never had an ovarian cyst prior. However, I should say that I quit the pill suddenly, like in the middle of the cycle. My gyno said that the egg probably got "stuck." The cyst was HUGE - the doctors in the ER (it ruptured and I was very, very sick from that) said it was the largest they had seen. I have not had anything like that since, but I do seem to get ovarian cysts during my period now. Only small amounts of pain. My periods are much more abnormal now too, but I don't know if that's a result of an inherent hormonal problem or a result of whatever mess is going on in me.

    I don't technically even have POTS, but have been diagnosed with autonomic dysfunction. So I have zero answers. The only other speculation has been lyme's, as I was living in a very tick endemic area upon return from Africa and spending time outside in the woods. I am still on the fence about lyme's though. But I did develop arthritis with these wicked little lumps on my fingers.

    I have been tested for parasites and all that, but I recently had a doctor suggest I go back to the country where I lived in Africa to get tested for specific things that we can't test for here. There's no way under the sun I am able to do that, but I have been considering ways that I might be able to get into touch with doctors who might be more experienced in West African diseases.

    Sorry, this is so long and totally went off the BCP topic. I just feel like I am looking for any kind of possible answer as to why this happened, and the pill is one of the only things in my life that could have triggered this at the time it did. It just seems so unlikely.

    Thanks for all the insights!

  13. 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. All of which can seem hormonal. I stopped taking the pill, and developed a really huge ovarian cyst which ended up worsening all my symptoms. So I've always wondering if the pill couldn't have caused all this.

    On the other hand, the only other life change that I had underwent at the time was that I had just returned after living in a rural village in Africa. So, of course, it seems more likely that something got in me there.

    I'm curious to hear what others think about the possibility that BCP can cause major offsets in hormones which could result in these chronic problems.

  14. 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?

  15. 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 enjoyable for me at first, but I'll tell you what, it sure gets things moving in the sinuses. I drink one almost everyday now, and have come to really love it. Even when I'm not at all clogged up, I'll have mucous running out of my nose after one of these babies.

  16. 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 case for anyone else, as obviously others tolerate really well. But I sure hope no one else goes through what I did, so I would encourage anyone considering taking a SNRI/SSRI for the first time to do so as slowly and cautiously as possible if you are sensitive to norepinephrine.

  17. 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 response. If you do choose to use it, make sure you do so very, very slowly.

  18. 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 sensation that I could not even fathom being possible. I would feel and hear this intense whooshing in my head, ears and neck, and I was constantly clenching my jaw as tight as possible without even realizing it, just as an attempt to deal with the pressure. Also, I just overall felt way more POTSy. In CA, the least of my symptoms are a result of postural changes, but on the east, I couldn't stand for more than 30 seconds without having to sit down. And, oddly, after about four weeks of being east, my heart rate suddenly became really slow, like 45bpm, after it had been around 110 at rest everyday prior. And the change was sudden, I can recall the exact moment that I felt something weird in my chest, then suddenly my heart rate was slow!! It remained slow for a couple more weeks. I had also stopped taking my beta blockers as soon as I had gotten east because I felt like I couldn't breathe at all and knew beta blockers don't help that, so this wasn't related.

    After two months, I realized that I was so much worse off that living east wasn't worth it for me. On the west coast, I am pretty highly functioning - I go to school and work. There are even some days that my illness doesn't really bother me, though they are rare. When I moved east, I assumed I could also go to school and work, but it became clear that there was no way I could do those things. I felt bedridden on the cloudy/rainy days, and just not that functioning on the clear days. So, I moved back to CA, where it was like immediately I regained so much of my life back.

    I am back east now, visiting my family, and I feel just as I do in CA, I assume because it is dry. There have been several cloudy days here and they did not disturb me at all. So my response was definitely due largely to the humidity, but there was something about the combination of the humidity and drop in barometric pressure that really sent my body haywire. I really, really really want to be able to return east. I am very close with my ill family member, and he has asked me repeatedly not to leave. I am devastated because this illness is the only thing holding me back. No one has been able to help me solve this problem, as no doctors have no idea what I am talking about when I am describing the intensity of these symptoms and how obviously they correlate to the climate.

    Does anyone else have this response? And I don't mean feeling just a little bit worse on the cloudy, humid days, I mean like wayyyyyyyyyyyyyyyy worse. Are there any ideas as to what the issue is that causes this? Does anyone believe that our bodies adjust to the climate in a longer period of time? I did give it two months and there was no improvement. Any advice would be immensely appreciated! I am so sad to have to leave my loved one in a few days and am desperate to be able to get these symptoms under control so I can make the move. I just need to figure out what is going on!

  19. 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 reaction except for my ears, which is a whole other issue.

    So it just makes me wonder. It could have been because I do a million times better in a dry climate (which thank god the planes are - the drier the better!).

    It is so interesting how so many of us are sensitive to the same things, but for seemingly very different reasons!

  20. 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 uncomfortably high. Probably around 170 is where it maxes, but this is without really pushing it. I know it's not alarming, but I can tell it's not natural, as it is uncomfortable. I also find that after exercising, I am very uncomfortable. Lots of chest tightness and my heart feels very forceful and fast. Now, about eight hours after the exercise, I can still feel my heart racing. A racing heart is not something I deal with much in my everyday life anymore at rest. Usually my heart only races when exposed to stimuli, but for me to be sitting here at my computer, feeling my heart race shouldn't be much of an issue.

    I am curious as to how others are affected. I know I also have inappropriate sinus tachycardia, but I was kind of hoping that was getting better too. Do you guys also find your heart to go way too fast during exercise, and while at rest afterwards? What about the chest tightness, not during, but immediately after, for about an hour?

  • Create New...