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valliali

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About valliali

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  1. Hi, just read your post about tachycardia and and really identified. the post was from some time ago have you found an answer and are you any better. i have run into a period of random tachycardia, irregular hr and adrenaline surges. i felt very alone until i read your post

  2. Hi all, My improvement over the last year has been drastic. I became sick over three years ago, following living in rural Africa for eight months. Before leaving for Africa, I was in top-notch health, and my friends frequently commented on how I was never sick. I ran at least three miles a day in sometimes 115 degree weather, no problems. I returned from Africa and was living in Pennsylvania for a couple of months. About a month, or a little less after returning, I was suddenly crippled with extreme panic attacks, major facial flushing, swollen lymph nodes and racing heart. Literally one day I was on run feeling like the world was my oyster and the very next day it seemed everything was failing. I was not sick, nor had been for a long time prior to this. Everything degraded from there and for two years I was very sick. No doctor, to this day, has ever been able to offer a diagnosis, but it has seemed very clear that I have an autonomic dysfunction, so the POTS label got stuck with me (though my tilt was negative for POTS but positive for a sudden rapid heart reaction to the adrenaline injection -- which occurred upon lowering, not standing). Since then, like I said, I have improved so much. It is impossible for me to even really remember how much I suffered those years. I know that it happened and I can very vividly remember how often I thought I was dying, but I can't physically remember how horrible it felt to actually experience that. I still have rapid heart rates and some other discomforts here and there, but largely, I don't think a huge deal about my symptoms, which used to be all I could think about. I still feel very concerned about what caused all of this, especially because no diagnosis was ever offered. I did have a doctor strongly suspect lyme's disease, especially because of where I was located at the time I became sick (tick country) and I worry about that a great deal because I know it can "hide" for a long time. But at the same time, I don't think I would see the pretty constant remarkable improvement I have had. One symptom, which has disappeared but really bothers me because it doesn't fit a "POTS" profile, was this bizarre arthritis I had developed. My fingers became sausages and burst out with these little red nodules on my finger joints that were intensely painful. This lasted several months and disappeared. The arthritis (not the nodules) came and went in my fingers for a couple of years, but hasn't returned for the last two years. I fully believe that something was inside of me, whether it was lyme's, some parasite, virus, etc. Something caused the arthritis and swollen lymph nodes that lasted for several years. I am fairly plagued with fear that whatever it was inside of me is just hiding and that I will go through all of that again. I am finally getting a taste of life again and am trying to get rid of the last remaining symptoms, which are a cake walk compared to before. So I am truly terrified of ever going back, and because I never received any treatment, I wonder if something inside of me causing this could just disappear, or if something is just lurking in my cells waiting for me to get sick again so that it can return. Does anyone else worry about this? At what point do I just accept that I'll never know and move on? Is it worth trying to figure out if something infected me, though I am relatively high functioning? Do I pursue the lyme's treatment, despite its major expenses and the fact that I am improving?
  3. Sorry to bring this back up! But I am not sure how to search the forums, I hope it's okay if I repost a topic that I know has been discussed before.. I know that alcohol consumption makes some feel better, others worse, but I am wondering how many of us get a much more rapid heart beat a few sips into a beer or wine? I read a lot that rapid heart rates are not uncommon hours after drinking due to dehydration, but mine occur very shortly after drinking. The rapid heart rate is much worse upon standing, which is not normally a symptom of mine. Any theories as to what causes the sudden heart rate change?
  4. I am in the EXACT same boat. Just last week I was prescribed a CCB for the first time, and I haven't taken it yet. I am very nervous. I am on propranolol which helps at lowering the heart rate, and also stopping the overall "revved" up feeling I would otherwise have constantly, but unfortunately, the propranolol doesn't do enough for my inappropriate sinus tachycardia. And I can't take more because of the massive fatigue it causes. I am wondering if anyone has problems with facial flushing on a CCB? When I first got sick, sudden flushing of my face was the first and worst symptom. It went on horribly for about a year, completely devastating me because I was young and very appalled by my red face. Fortunately, it has subsided almost entirely, so I am absolutely 100% unwilling to do anything to cause flushing.
  5. Hi all, I know the weather topic is very popular now, especially because the weather is quite crappy for a lot of people with POTS right now. As I've explained on here before, I am severely affected by weather; I had to move from the east coast to the west coast just so I could live a little, and boy, what a difference! The east coast summer had me completely bed-ridden with the most intense pressure in my head, with whooshing in head, neck and ears, very rapid heart rates, breathing problems, dizziness, and panic. I am visiting my family next week and the weather looks horrible. It's supposed to be very hot and humid, and of course, the thunderstorms. I am absolutely dreading my trip and long to cancel it. I also have major problems flying, and because my health has improved lately, I am able to do so with no problems. But I am very terrified that after a few days back east, I am going to have heart rate problems flying again which is really not a good thing for me. This will cause a panic attack and having a panic attack on a plane will cause me to not fly for years. Given that I am only going back for five days, I am wondering if there are ways to stave off the very nasty side effects from bad weather? Is air conditioning just key? Does anyone find if they remain in air conditioning, they don't get affected much from the weather changes? What if you are forced to attend something outside for a day; how long would it take you to recover?
  6. Hi, I have abdominal pressure. At the top of my abdomen, where I imagine my diaphragm is. It makes breathing difficult. Comes and goes for me. I can go months without out, then out of the blue, I"ll be plagued with the pressure and chest tightness. I have found nothing that helps me.
  7. For those of you who do well on Afrin, do you have very easily stimulated adrenaline-like responses? I have serious problems with my ears when I fly, but am too scared to try Afrin because even half of a cup of 99.5% decaf coffee sets me off with high heart rate, tremors and anxiety. I use Omnaris right now which helps a lot. But I still have a lot of problems when flying, and I have another flight coming up in two weeks that I am very nervous about.
  8. Sorry if I missed this, but which of your catecholamines were low?
  9. I moved to No. California for my health as well. Sooooo much better out here. I am from the east coast, and actually would love to return to be nearer to family, but here in CA, I can work, go to school and go for hikes year-round; in the east coast for the five months of humidity and especially stormy weather, I was bed bound. The difference for me, personally, in my level of functioning is extremely drastic from climate to climate. I will be returning to the east this June for the first time in two years and am very very nervous about having a relapse. I am doing very well and the weather there is just horrible for me.
  10. Beliver, how would you describe your pressure headaches?
  11. I am currently on an independent health insurance plan through Blue Shield in my state. Fortunately, I signed up for the health insurance plan right after returning from Africa, and before I got sick, so I had no pre-existing conditions. I am young, so I pay a low monthly cost and have a very good PPO insurance in return. I want to move to another state in order to be closer to an ill parent. I would be eligible to transfer my Blue Shield of CA to the other state, however, instead of paying the $150 per month that I pay now, I would be paying around $600-700. This is unaffordable for me. I could probably find another job that offers insurance, but I worry a great deal that because my health is not so great on the east coast (much worse than here in CA), I would not be able to work and would lose my work's insurance. Also, I don't know that I can go the six months without seeking medical care or medications necessary to not be excluded for the 12 months from a group insurance policy. I am very happy with my insurance here and it has allowed me to see many doctors and specialists. I do not make much money, and am in fact a student (not eligible for school's insurance), so paying more than what I do now per month isn't feasible for me either. Has anyone else switched insurances??? Or moved out of state? Or went from an independent plan to a group plan? What about getting onto a spouse's insurance? I have a long-time boyfriend who I plan to marry. Are there restrictions about spouses with pre-existing conditions joining a group insurance? Could it potentially be a very expensive addition for me to be added to his policy?
  12. HAha, so true, Simmy! The truth is I always do better at high altitudes. Last year, I was having a bad flare and took a trip to Utah. I almost cancelled my trip because I was feeling so sick, but my boyfriend was really excited, so I was prepared for a huge amount of discomfort. As soon as we ascended to a higher elevation, I felt almost total relief. By the next day, I was doing great. I do believe it's because it's super dry and I do very well in dry dry dry. I also don't have issues in dry heat. Give me a 120 degree day here in CA over an 85 degree humid day on the east. But it's very strange that here in the winter, when it's stormy and humid, I really don't have many issues. On the east, when it's humid and stormy, but also HOT, I'm down and out, totally bedridden. Odd!!!!!!!!!!!!!!! I actually want to move back east again (my father is ill) so I'm going to test out my health this September, which was when I visited last when it was really bad. I have improved in my health, so I'm hoping things are better. For those who have the head pressure on the humid, rainy days, anyone have any possible understanding of causes? Any meds help??? I get the intense pressure, but no pain, so unlikely to be migraines. Wondering if anything has helped any of you?
  13. I live in CA, but moved to Maryland last September. The climate was so horrible for me, I had to move back to CA. I found that I was much much more POTSY on humid, rainy/cloudy days, but even worse was the intense head pressure. The whooshing pounding all day long in my head. I didn't feel like this on just the humid days - only when a storm was coming in - so I naturally attributed it to low pressure. However, I do just fine when storms come in here in CA, and also, ironically, I do GREAT at high altitudes. In fact, I just returned from a trip to New Mexico at 7,000 feet where I felt great, and I feel worse in CA. So makes me wonder if it's the pressure at all, or something else about the cloudy weather of the east coast climate. A combo of the humidity and low pressure?
  14. I am going to try to Mucinex, but not Afrin. I think it would just mess with my mind too much, even though if it didn't have any adverse side effects. I am concerned now because the Omnaris I have been using is causing a lot of ear pain, which I've never really had. I'm concerned that the ear pain will be very significant on the flight. Does anyone using Omnaris have ear pain? It's listed as one of the most common side effects.
  15. Hi guys, I posted about this a couple of weeks ago, but I am flying out tomorrow night and very nervous about my ears. I have been taking Omnaris for about two weeks, and at first, I really thought it was going to solve all my problems. I feel the effects almost immediately after use, and it really clears things up for me. I wasn't planning to take anything else, and thought that this would be enough to help me. However, here in CA, the pollen is beginning to circulate, and my nose is getting stuffier again and my ears are more clogged. Something I noticed was that my ears are starting to hurt, inside like the eardrum, and yesterday, when my nose was the most clogged, my ears hurt significantly. I read that Omnaris can cause ear pain, though why makes no sense to me. Now, I am very very nervous that going up and down in the plane is going to cause serious ear pain. Before, when I flew, there wasn't so much pain as just chronically clogged ears with a lot of pressure and some hearing loss. But if I have to add this kind of pain on to that, it could be really bad and enhance my already huge fear/panic about flying. I know many of you have had success with Afrin, but I am really terrified of trying it. I am super super sensitive to anything that raises the heart rate. For those of you who use it, are you too? Does your heart race after drinking a 99.7% decaf coffee, as mine does? What about benadryl? The side effects really scare me, as well. There is mention of tachycardia, irregular heart beat, excitability, etc. Usually any drug that has those words will cause those symptoms for me. I've also considered Mucinex, but have heard it just doesn't have the same effect. Seems that everyone recommends Sudafed for eustachian tube dysfunction, but there is no way in heck I am taking that. I immensely appreciate your insights!
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