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Posts posted by valliali

  1. I am just wondering if you guys feel like you progressively get worse?

    I have been sick for a little over a year, diagnosed with POTS about five months ago, but I definitely keep getting worse. I don't get better, then have a relapse with the same symptoms as before, but I am constantly getting new symptoms, and the ones that I do already have keep getting worse.

    I have read that chronic, progressive dysautonomias have a very poor outlook. I always assumed that meant MSA or something of the like, but my dysautonomia sure feels both chronic and quite progressive.

    My heart issues especially get worse and worse. I have had no improvement, maybe for a little with the beta blockers, but as of now, much worse. So I am wondering if those of you who suffer from heart arrhythmias all of a sudden developed them along with all your other symptoms, or did they come on over time? I feel like I am getting new ones, and more frequently, each month!

  2. no, they definitely get larger than peas. when they are not swollen, they are about the size of peas. when they swell, they are larger. the ones beside my trachea under my jaw are quite enlarged. they fluctuate in size pretty much daily, which is how i know they are actually swelling. my doctors have all agreed they are swollen, and i was sent in for a CT scan to make sure they did not appear irregular in form. my ENT agreed that they are enlarged, but not cancerous...

  3. Ernie, your heart rate gets as low as 30?!?! You have really crazy swings in your vitals. How often? I'm so sorry you have to deal with that.

    Is that likely due to hyperadrenergic POTS? What kind of GI issues do you have?

    I hope that you are finding some relief with treatment. I notice your signature says you are involved in a study, I hope that provides you some answers!

  4. Haha yes, very much alike!

    What is your diagnosis, if you don't mind me asking?

    It seems to me that swollen lymph nodes is not very common with POTS. Have you ruled out all possible infections/viruses? How many swollen lymph nodes do you have - like one or a chain?

    Also, are your joints swollen too? My finger joints get really puffy, and the fingers on my right hand are curled inward. Over the winter, I had developed these red nodules under the skin on a couple fingers that was intensely painful. They haven't come back since, but I can't shake what a seemingly unusual response this was. I am also not sure if joints that actually swell and curl are common with dysautonomia. I do not have any hypermobility, do you?

    I'm trying to figure out if these swollen issues are somewhat common with POTS because that is my diagnosis of now, and I would like to be able to accept it and move on, but I did get sick right after returning from living in rural Africa for a year, so I can't shake the possibility that something was caught there. I just don't know how worth it it would be for me to run to more and more doctors for more and more tests when I could just focus on understanding my given diagnosis.

  5. Do you guys experience bradycardia with your dysautonomias? Since becoming "sick," over a year ago, I have never seen my pulse below 80, even while on 200mg beta blockers per day. I am usually tachycardic, and find a pulse rate of 80 to be a nice break.

    Yesterday, about 1/2 hour after eating lunch, I had a very odd reaction. Sudden panic, tremoring, and blood pressure skyrocketed. My heart was pounding, and I thought it was racing, but when I used my blood pressure monitor, it indicated a heart rate of 58. I know this is not unusually low, but like I said, I have not seen my heart rate below 80, and very rarely below 95, in over a year. When the episode ended, my heart rate when back up to about 85, blood pressure went down, and I felt more "normal."

    I mentioned that I had just eaten because I think I have heard that gastrointestinal problems can cause bradycardia? Or that it can cause a vagal nerve response, but I am not sure what that is.

    The odd thing is that since then, my heart rate has been so much slower than normal. This morning, after being up and walking around for awhile, it was at 55, and recently it's been staying at about 63. I would sure rather a slower heart rate than the faster ones, but am very confused why this is happening.

    For the past month, I have been having a lot of abdominal issues. I feel a deep pressure in my upper abdomen, my pulse is sooo strong there, and I get incredibly bloated after eating. My boyfriend says I look five months pregnant, and I am a fairly smallish person.

    Just wondering if anyone has these issues? Or knows of a connection between gastrointestinal problems and bradycardia?

  6. Hi James -

    I'm sorry you are dealing with these heart episodes, they are so terrible. Have you had a cardio look at them? Do you know the cause of yours?

    I have tried an SNRI - Effexor - and had a major reaction to it. For six hours, my heart was pounding at 200, my blood pressure was wickedly high and I was having a lot of mental reactions. My doctor thinks this is important to understanding what is going on, but we just aren't sure what yet. We suspect that the enzyme that is used to metabolize norepinephrine and epinephrine is not working properly, so the SNRI promoting more norepinephrine would obviously make things very bad. The enzyme is also used to break down serotonin, which I have had high levels of, so it might also make sense that the SNRI could have caused a serotonin syndrome reaction.

    But, at the end of the day, this is all speculation because there is like zero information out there about these kind of issues.

    Do you also take a beta blocker?

  7. Hi, thank you guys for your responses.

    Rachel, good thing you got the lymph node checked out. I had a CT scan for mine, well more specifically because I also had a strange lump on my neck that ended up just being an enlarged carotid body. But the CT scan did show a chain of lymph nodes on both sides of my neck.

    They are there everyday. I haven't a cold or virus in at least six months, but they come and go daily. No triggers that I have been able to find.

    I too am looking into CFS. I have been diagnosed with POTS, but am feeling pretty sure that I don't have it. I was diagnosed off of a TTT that I passed until I had an episode of IST after the test. So I'm not sure how that indicated POTS, but...

    I think that CFS would better explain enlarged lymph nodes. The only thing is that I don't have debilitating fatigue. I often feel tired after physical exertion, but not always. I wouldn't list fatigue as one of my main symptoms. I think this likely disqualifies me??

    I need to see a rheumatologist too. Do you have joint problems? I have swollen finger joints, and my hips KILL me, but I can't say whether or not this is due to inflammation or arthritis. But I am only 24, with no history of arthritis, so I doubt that this isn't related to everything else going on. I definitely need to see a rheumy! Were you referred to one because CFS sufferers often have joint problems?

    Thanks for your insights, guys!!

  8. do you guys have this?

    i have had swollen lymph nodes for over a year, since i got sick. had a CT scan to rule out lymphoma, and my ENT told me i should consider chronic fatigue syndrome if they didn't go away in 3 months. i don't think i have cfs, and it's been eight months since then, and they are still present. they fluctuate in size most days. sometimes i don't feel them, other days i definitely noticeably feel them. this doesn't seem to fit my pots diagnosis, but i'm wondering if anyone can relate?

  9. I can completely relate to what you are going through. I was diagnosed with POTS, but it became quite questionable in the recent months. My PCP basically told me he has no idea what is going on with me. Then I moved from the west coast to the east coast, and I, too am having a very difficult time adjusting to a new environment, and especially the new weather. The weather has caused my symptoms to become soooo much worse, it is indescribable.

    My troubles lie with my insurance transferring. It won't without an exorbinant price tag. I have not been able to see a doctor in a month, and I feel like I am getting worse everyday. At this point, I'm pretty sure I'm going to repack my bags and go back to Cali!

    I'm sorry you are going through this, truly am. It is so stressful

  10. This is an interesting topic. I have been wondering about my joint pain as well.

    About four months after I started getting sick, the fingers on my right hand swelled up at the joints. Really swollen. Then I developed this nodule on one of the fingers, it was a very red lump under the skin that hurt like heck if so much a gust of wind touched it!! Then the swelling and the nodule on that hand went away, and it went over to the left hand. Developed the same little painful nodule. Than a couple months later, that went away too. Now my joints in my hands are achy and stiff, and sometimes swollen in the mornings, but I have noticed that my right hand fingers are curling inwards. Also, a couple of months ago, I started developing really severe hip pain. Not sure if it is joint related or not.

    I have no family history of arthritis, my RA factor was normal, and I am in my early twenties, so developing arthritis aside from whatever is going on seems very unlikely to me. I am not sure that this is arthritis, but I do find the migrating swelling and that little nodule to be very unusual.

    So I am wondering, when you guys experience joint pain, do you also experience swelling? Is this caused by POTS?

  11. Your post was terribly heartbreaking, but you do sound like an incredibly strong person.

    You said that you don't want to fight the fight anymore, but it sure sounds like you do. You have so much love for your husband, and him for you, that it is clear you really do have something special worth batting this day in and day out for. Thank you for sharing that with us because although you were clearly in a moment of despair, your post also had a lot of hope. I too want to be a better partner, a better parent (to my four cats, they are my babies) and a better caregiver to my ill father, and on the days that I want to give up and for it all to be over, these are the things that I also need to remind myself of to keep going.

    I am so sorry you are having such a difficult time getting the doctor and treatment you need. I hope that you are able to find the support that you need in your new doctor.

  12. thank you guys so much!

    i have to say that while i feel so sorry that anyone else has to experience this discomfort, i am comforted in knowing that i am not alone with this issue. it sounds like you all cope with it much better than i do! i become a completely freaked out, panicked mess.

    for those of you who have the heart rate issues, have you flown on an airplane? i kept having these episodes recently while flying, with my heart rate going up to near 200 very forcefully and palpitating a lot for no apparent reason, and couldn't understand why flying would cause such a reaction. perhaps the explanation provided with the blood pooling has something to do with it?

    i am just curious:) all this makes me wish i had been a biochemistry major in college - not philosophy!!! it's very fascinating.

  13. Thank you very much.

    I was not on any antibiotics at the time, but that is interesting that they may reduce normetanephrine levels. My levels are MUCH lower than the lowest normal value in the range, so I'm pretty sure something is going on.

    That is so crazy that you have to pay for copies of medical records in the UK!! It seems like something that everyone is entitled to, but I'm sure that they have their reasons!

  14. daisy! so you have these sudden very rapid and pounding heart beats after exercising??? accompanied with panic?

    i am pretty certain, almost positive, the panic is not mentally induced. i mean, they sure do scare me, but i have gotten quite adjusted to lots of uncomfortable heart palpitations and rhythms that no longer cause me to panic. but the episodes i describe feel like adrenaline, or norepinephrine as my dr. suspects, is just being dumped profoundly into my system. it causes my blood pressure to soar and i tremble like i just sat in an ice bath in the north pole.

    i should look for that info from dr. grubb.

    i am concerned because my blood pressure monitor detects and irregular heart beat when these occur.

    however, when the same thing happened during my TTT, or at least what feels like the exact same thing, my cardio said that it was sinus tachycardia - the rhythm was normal. he is a good dr so i have to trust that he would be careful to rule out something more serious, like vtach or any other svt. but then i don't understand why my blood pressure monitor picks it up as an irregular heart beat if there is no change in rhythm?

    so yours also occur after exercising? does your heart rate get really really high during the exercise? do the heart issues come on when your heart is slowing down, then kicks back up really fast again?

    sorry so many questions!!!!!! just trying to understand this since even my cardiologist called it a phenomenon. i'm beginning to feel like my doctors who treated me had absolutely NO idea what was going on with me, so now i am skeptical about everything that they told me was benign.

  15. please forgive me for bumping this thread up, but i have posted this topic on so many forums, expecting at least some people to respond with a "oh yea, got that too!" but i have heard NOTHING. i feel like a freak of nature and completely alone with this test result. i have poured myself over research for an explanation, and feel even more lost and confused than before. this whole thing has me questioning my dysautonomia diagnosis because surely someone else with dysautonomia would have low normetanephrine levels too, right? i'm just desparate for some answers, so, i'm going to bump this along. thank you all for your patience!!

    may i ask, i assume many of us had 24 hour urine catecholamine tests, did everyone also get their metanephrines tested with that?

  16. do any of you guys find your heart issues to be the biggest concern?

    my heart is out of control, i have no idea why, and it is causing me to live my life in terror.

    i have been diagnosed with IST, but i also have these episodes of what has been diagnosed as sinus tachycardia as well, only they occur after my heart rate has been up for awhile and it is starting to come back down. so if i walk around for awhile, or if i am anxious for awhile, or when i used to drink caffeine, i would get the IST because my heart rate would stay around 200 or so, but then, when i started to relax and come down, i would get these "episodes." heart rate would shoot up, pound out of my chest, cause severe and debilitating panic, shaking uncontrollably, and blood pressure would skyrocket.

    i had one of these episodes during my tilt table test, after the isoprol (?) was injected. the test was over, the doctor was telling me the results, and then it happened suddenly. the cardio was there, and he did tell me it was sinus tachycardia. it is hard for me to understand how that could be though because the heart rate and force was dramatically different from the sinus tachycardia i had been experiencing from the isoprol. they kept my heart rate at around 130 on the drug, stopped the drug, heart rate started to go down, and then all of a sudden it shoots up to 180 in an instant? with severe pounding and incredible panic?? my cardio said he had never seen nor heard of this reaction before and the only explanation he could offer was that my sympathetic nervous system was "catching" in between the process of my body slowing down after it had been up. so he thinks i could still be surging norepinephrine though everything else is slowing down.

    i am just wondering if anyone else has this???????

    i felt really good yesterday and decided to speed-walk a mile on my treadmill. felt really good the whole mile, even jogged a bit, heart rate was really high, around 210, but i still felt ok, then when i stopped and started to walk it off, had this episode. during the episode, my heart rate was around 180, which is even lower than it was when exercising, but the symptoms are incredibly debilitating. my doctor told me not to worry about dying, but that is the least of my concerns when this is happening. it is so uncomfortable i almost want my heart to just stop and put me out of the misery (not really, but in the heat of the moment, it is THAT uncomfortable).

    these episodes are causing me to live in terror. i also had them when flying, i think from the change in barometric pressure, but again, now i will live in absolute terror the next time i have to fly. i have flown all over the world, just a year ago, prior to these problems and now i am completely dysfunctional. how could this progress so rapidly?

    anyways, i am just wondering if i am alone in this!!!! i have also been tested as having low normetanephrine levels, which haven't even remotely been explained to me, but i am wondering if it is all connected. any feedback would be so appreciated! thank you all for listening!

  17. i am much much much worse before and after it rains, or in cloudy weather. so much worse! i get this really really intense pressure in my head, feels like all the blood is going to my head and i can feel and hear it pulsating in my ears. the rest of my body gets really cold and blue. i have a very hard time breathing in this weather and my heart races out of control. also i experience a lot of panic.

    i moved to the east coast from the west about a month ago and did not have any of these problems in the dry, wonderful weather of the west. it's definitely weather-related, but i have no idea why i become so much more symptomatic. i'm planning on moving back out west because i felt so much better!!!

  18. hi all!

    i am new to posting on this forum. i have been following it for awhile, but never posted:) now i need some help!

    i am a 24 year old female, diagnosed with POTS, though it is questionable what is going on. trying to figure it out!

    i think the key to my situation is held in one of my lab results from a 24 hour urine collection, which showed that i have very low normetanephrine levels.

    from what i understand, normetanephrine is the metabolite of norepinephrine. when NE is produced, much of it is metabolized right away. i am not metabolizing it, or so that's what i think from the lab test, which could explain many of my symptoms, ie tachycardia, panic, blood pressure surges, etc.

    i am now trying to find out what low normetanephrine levels indicate and how they are caused.

    i am learning about an enzyme, COMT, that is responsible for metabolizing it, but am in the infant stages of research and have a hard time understanding the science at this level (i am a liberal arts background!)

    so, i am wondering if anyone else on this forum has this issue and knows why? i am feeling like the only person in the world with these results and am now left wondering if i even have a dysautonomia at all, though that is my official diagnosis!

    thank you all for reading and any insight. i am looking forward to being more active on the forum!!!

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