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Posts 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 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?

  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 change?

  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 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.

  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 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?

  5. 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.

  6. Sorry if I missed this, but which of your catecholamines were low?

    Thanks sue1234---- ;)

    I'm not sure what low levels mean. Especially that low. the only thing I can think of is to have them checked again. I know I feel much more wiped out then usual, and my mid thoracic spine pain is bad enough to make me want to cry. MY pain tolerance is high, so this means about a level 8 on the pain scale. It's also knocking the wind out of me literally.

    It's the holiday weekend, so all docs were already gone at the Cleveland Clinic to discuss what to do about colonoscopy. I tried looking up information on low catecholamines levels, but I couldn't find much in the short amount of time I had. All my energy is used just taking the 15 minute drive to the nursing home my mother in law is in for rehab. Today I felt a blip of sorts with my heart----not sure what it was----skipped beats, extra beats. I found my BP was very low, so maybe that caused it. My husband said my spine just below my neck is sticking out to the left this time.....

    This all can go away now so I can go out and slug down a couple of margaritas and go out on the dance floor and dance the way I used to dance. I was pretty good at it once. Now I can only show my granddaughters how for about a minute. Hopefully one day I'll dance again.

    Next week I'll find out what the Cleveland Clinic can do about working around this, once I fax a copy of the report to them. Believe it or not, the Cleveland Clinic isn't very well versed on these kind of complications. when I voiced my concerns about the sedation drugs, they weren't at all concerned-------this is a red flag, because they should be.

    Maxine :0)

  7. 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.

  8. 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?

  9. 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.


    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?

  10. 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?

  11. 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.

  12. 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!

  13. 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.

  14. 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 feeling it, perhaps your dosage is not enough.

  15. 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 times a day, if even that. When I flew over the holidays (only one flight), I took about double that dose, and still felt massive anxiety. But I am scared to take more because sometimes the beta blockers can make me feel funny (pressure in the sides of my neck and head), which will only cause more anxiety. And on top of it all, I have really really bad eustachian tube problems when flying so that only increases the anxiety!!!!!!! I am very afraid my ear drums will burst, even though I know it's unlikely.

    I have been using the Omnaris for a week now, which has actually helped quite a bit I think. I know everyone says that Afrin is the best, but given that I have panic attacks from flying, I really need to avoid anything and everything that may even possibly raise my heart rate, or that will make me believe that it may.

    So, I'm between a rock and a hard place. I am thinking of mixing together my old Xanax that I never used and the propranolol. Of course, I will try beforehand, but before I do, I want to know if anyone else uses both? I have been reading that many people do online, but I am very sensitive to drugs and may not have the same kind of positive reaction that others do.

    Also, does anyone else have the health anxiety about flying? I am pretty sure it is all mental that causes my symptoms flying. and I'm pretty sure it is panic attacks that I have flying, not my PSVT. I know that I can do fine on a flight (like my last one), so I have no reason to believe that I will have a health problem, yet I am totally anxious just even thinking about sitting in that cabin. I so desperately never want to fly again, but I have an ill parent at home and would forever regret not being able to visit. And trust me, I have done the train and have driven before just to avoid flying, but this time, it is not possible. I have to do it and know that I cannot let my fear, or health, prevent me. But a little pharmaceutical help is necessary!!!

  16. 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."

  17. 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, but I have had a lot of cardiac work up and PVCs have been the only thing that has been caught. So I assume that mine are PVCs, but it's impossible to say if that's what is going on with you. I actually feel more reassured when I research this online because there are SOOO many people out there who have concerns about their hearts for these exact reasons. My doctor has also been unalarmed by my symptoms, so I try to be as well. It's very difficult though!!! And when those big-time flops/pauses happen, I sure do freak out!!

  18. 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 the pill, only to develop a massive ovarian cyst that ruptured and put me in the hospital b/c I went into shock.

    Because I really still have no diagnosis other than "some kind of autonomic dysfunction", I always wonder if my problems aren't some hormonal problem. I just don't know how else I could have been 100% healthy, got placed on the pill, and then had these out of nowhere issues. I didn't have a virus or anything else that could seem to lead to dysuatonomia.

    But anyways, about the periods. For awhile now, mine involve a lot of pretty heavy spotting for about two weeks before my period. I pretty much have to live like I'm on my period for three weeks every month. But then I get a pretty heavy and regular period so the spotting is very different. I've also noticed the pain of my periods has increased quite a great deal, and I also feel very very very hot during my periods. I sweat a lot and feel on fire, but my body temp will be around 96.5. My boyfriend even says my skin is hot to the touch, when I'm usually freezing cold. I also get a great deal more anxious and more heart palpitations.

    I saw a gyno, had an ultrasound and was ruled normal for endometerial tissue. I have had hormones tested, always normal.

    Anyone else?? Has anyone else wondered if their dysautonomia could be a result of a hormonal problem?

  19. 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.

  20. 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 all depends on whether or not you are uncomfortable. For me, when I hit 160, I am very uncomfortable. I am quite comfortable at 140 and would be just ecstatic to be able to get some exercise and keep it around there. I take beta blockers, and they don't really help me. Sometimes they make the 180s not feel as symptomatic, but I just dont feel comfortable that high.

    I have been really struggling to find appropriate exercise for me. I have zero muscle weakness as one of my symptoms, so I think that my muscles are still very athletically inclined. Hence, I think that getting exercise for my body requires more than what I am able to do. My heart rate totally prevents me from getting adequate exercise. So frustrating!!!!!!!!!

  21. 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 all these pockets in my cheeks from biting down on them so hard. The chattering alone will often wake me up because it is so hard, even when I don't clamp down on my tongue.

    These episodes don't last long - as soon as I enter the next sleep phase, I'm out.

    Does anyone else have something similar to this?

  22. 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 with POTS (yet, despite the increase in heart rate) because he said my parasympathetic nervous system wasn't braking, and my heart revved up. Weird thing was that ever since the tilt, I had this PSVT - but never before. It's like once I had one, the electrical systems changed.

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