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valliali

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Everything posted by valliali

  1. 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
  2. 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
  3. 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 h
  4. 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 suppose
  5. 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.
  6. 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.
  7. Sorry if I missed this, but which of your catecholamines were low?
  8. 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 th
  9. Beliver, how would you describe your pressure headaches?
  10. 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 cou
  11. 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 stran
  12. 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, a
  13. 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.
  14. 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
  15. I started on metropolol, and it didn't do much for me. Propranolol works very well for me. However, like I said, it made me feel horrible on too high of a dose. I actually do very well on 5mg at a time. Did your daughter possibly have too high a dose? Beta blockers can react very differently in each individual, so if the metropolol doesn't work, perhaps another one will. On the other hand, some people just don't do well on them period, so it might not be the drug that will help her.
  16. I am not sure if you mean how long they take to work after you swallow the pill, or how long it takes to build up in the system and become effective... I believe that their effectiveness can vary with everyone, and it also would depend on what pill you are taking and how much your dose is. For me, I take 10mg propranolol, and they began working the first time I took the pill, about 20-30 minutes after swallowing. However, I did initially start on a slow-release propranolol at 60mg, which was wayyyyyyyyy too strong for me. Our bodies might be very sensitive to our dosages, so if you are not fee
  17. How many mix the two? I have only tried xanax once, without the beta blocker, and it made me super anxious, but I believe only because I am always anxious about meds. Then I remember it making me a little bit tired, but not much else. I have to fly next week and I am dreadfully terrified of flying. I think I largely have health anxiety about having an emergency on the plane, which causes panic attacks. My panic attacks are very severe, and though they are not frequent, I have had one on a plane and now will forever associate that experience with flying. I take propranolol, about 10mg four time
  18. Ericka, have you been tested for PCOS? Your symptoms remind me of what I have read about that. I do not believe that I have it, but I know it can be somewhat difficult to diagnosis. I've read a lot of forums where people with PCOS discuss their "mustaches."
  19. I definitely agree that another discussion with your cardio may help you get some answers, but my personal experience is that PVCs can feel very different to me. Sometimes it's just a little flip that I hardly notice and passes in the blink of an eye, sometimes they run on and on and on and I wonder if my heart will ever go back into rhythm, and sometimes they feel like a complete stop, and then the beat comes back so forcefully that I get an intense rush of blood to my head that even causes my head to hurt. Freaks me out big time too. I still have a lot of questions as to what is going on, bu
  20. I know this is a common topic, but I am wondering if anyone else's menstrual habits have changed dramatically? Mine used to be as predictable as plain vanilla, but now they all over the place. Before I got sick, I stopped menstruating when I first moved to Africa. I chalked it up to losing a lot of weight at first, I was placed on the pill and my menstrual cycle returned to normal. It was three months later that my first symptoms began - panic attacks, feeling hot and red all the time, major facial flushing out of nowhere and tachy. It all seemed very hormonal to me so I immediately stopped th
  21. I get this too, exactly, but I always assumed that they are PVCs. I also get where I don't feel anything in the carotid and then it will noticeably return with a very forceful beat. Do you know that yours aren't PVCs?
  22. Yep, me too! Mine was noticeably worse when I lived in Maryland during the humid summer months. My symptoms were crazy there, and I suppose it would make sense that my lips were constantly blue because I never felt like I could breathe in the climate.
  23. This is one of my biggest problems too. I used to be very competitive athletically, so losing out on that has been really really tough on me. I just want so desperately to go to the gym and go for a run and go mountain biking and climbing... I am desperate. But, alas, my heart rate, too, is way too high. A brisk walk also puts me up around 150 and anything that would cause a "normal" person to start breathing more heavily puts my heart rate around 190. A real workout for me would place be about 230. I have read before that sometimes, numbers like 170, 180 aren't "abnormal" for some people, it
  24. When I first begin to enter the first sleep stage, like right after I begin falling asleep, I have sudden muscle twitches, which I presume to be quite normal, but I also have a really intense and fast teeth chattering. Not a grinding, but a strong and sharp chatter where I bang my teeth together. It occurs so quickly and sharply, I am not able to replicate it when I am awake. My boyfriend says it happens almost every night, and he too, is unable to replicate the speed with which it happens. Oftentimes, I chomp down on my tongue or cheek really hard, which of course wakes me up bleeding. I have
  25. I also have a PSVT, triggered purely by adrenaline (ie, after tea, exercise, anxiety, etc). I've since learned and cut out any possible stimulant, which has really helped keep them at bay. My PSVTs manifest as panic attacks - I am not sure if they trigger a panic attack or if the panic attack triggers the PSVT. Either way, it's a double whammy and enough to seriously make me lose my mind. My TTT was what triggered my first PSVT. The isuprel infusion. I had a negative TTT for heart rate and blood pressure changes, but when I was lowered and the isuprel was stopped, bam! My doctor diagnosed me
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