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Everything posted by valliali

  1. this is a good question. i get horrible stomach swelling, very uncomfortable pressure, and feel a very strong pulse in my abdomen. do you get that too? do you know for sure it's from blood pooling?
  2. kitchmill and alicia - do you guys know that your swollen lymph nodes are from pots? have you ruled out viruses, infections, autoimmune diseases, etc????
  3. 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
  4. 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...
  5. 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!
  6. 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 a
  7. 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 8
  8. 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
  9. 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 tha
  10. 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?
  11. 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
  12. 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 i
  13. 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
  14. 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 e
  15. 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!
  16. 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 i
  17. 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.
  18. 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
  19. 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
  20. 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,
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