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Everything posted by valliali

  1. One more thing I wonder, that maybe you can help clarify: From what I understand, SNRIs act to inhibit the NET. If a person has a NET deficiency, then wouldn't that make it so that their bodies were just acting as if they were on an SNRI? Likewise, if a SNRI is working to prevent the NET deficiency from working to the fullest, why don't people who take SNRIs all develop the same symptoms that are linked between POTS and NET deficiency?
  2. Rama I became interested in the norepinephrine transport deficiency as a result of my reaction to Effexor. It was earlier on in my "POTS" diagnosis (which I say loosely as my current docs and myself don't really agree with the diagnosis) when I was given the Effexor and after my reaction, I was like no way was that normal!!! I found some info about NET and was certain that was my problem. I have also tested very low for normetanephrines, the metabolite of norepinephrine, and was diagnosed with a dysautonomia because, although my TTT was completely normal, at the end of the test, after the is
  3. Rama I became interested in the norepinephrine transport deficiency as a result of my reaction to Effexor. It was earlier on in my "POTS" diagnosis (which I say loosely as my current docs and myself don't really agree with the diagnosis) when I was given the Effexor and after my reaction, I was like no way was that normal!!! I found some info about NET and was certain that was my problem. I have also tested very low for normetanephrines, the metabolite of norepinephrine, and was diagnosed with a dysautonomia because, although my TTT was completely normal, at the end of the test, after the is
  4. I posted this topic on another forum, after I had a horrible reaction to Effexor, and no one responded so I thought I was the only one. But you guys sound like you had the EXACT same thing. I pretty much had a seven hour panic attack, and that was my first small starting dose. It was horrible, and I too, will never ever use SNRI or SSRI again. I will say though that knowing what I know now about Effexor and its withdrawal, I sure am glad it didn't work out for me! If your friend does decide on Effexor, please, please encourage her to read some of the stories about the withdrawal. Many people a
  5. I drank some "decaf" coffee today - maybe like six to ten sips, and felt AWFUL. Heart rate picked up, I started feeling really really hot and flushed, chest got really tight, dizzy, muscles started feeling strange.... My reaction to caffeine is totally bizarre and seems very extreme. waterbaby, I can relate to your sensitivity to the weather. Low pressure and high humidity is the worst combination for my symptoms. I have never ever felt so sick as I did when I moved back to the east coast. I too felt really wired, heart out of control, panicky, and I had the worst pressure in my head, ears and
  6. thanks rama - i will have to read your post a bit more thoroughly when i have time and try to understand everything you said. i need to look more into the msra. the only issue i have is that some of my symptoms don't seem NE related. it is strange that you had ank spond suddenly too. jayje - i was a rower too!!!!
  7. Thanks! I will have to look more into the MSNA and talk to my doc about this. I do believe I have a beta receptor sensitivity, I just don't know why or how. I have had other symptoms that are not related to adrenaline sensitivities (like arthritis), though most of mine do seem to be. Also, what is parasympathetic withdrawal?
  8. hi, i don't think one ANA can totally rule out lupus. it can be challenging to diagnose. i had two negative ANAs, but when i began going to stanford, the rheumatologist wanted to do more thorough testing to officially rule out lupus. so, i imagine if the ANA was all that it took to rule in or out lupus, they would have be quite satisfied with two negative ANAs. i am sure i have read that false negative ANAs are quite possible. i have read that people with lupus can be really sensitive to the sun and develop rashes, aside from the malar rash (the butterfly rash on the face). because one of my f
  9. One other thing: I reacted very very poorly to Clonidine. It completely knocked me out. Not just tired knocked out, but like I couldn't even motivate myself to move, at all. That was on a very very small dose too. I don't think my NE levels need to be lowered at all. I respond very well to beta blockers. Especially non-selective ones. I am on a low dose of propanolol, and would not be able to function without it. Also, regarding the hands, sometimes I notice the veins seriously bulging but not necessarily when I am symptomatic. They don't really change temperature, other than being sensitive t
  10. Hi, thanks for sending the paper and sharing your thoughts. That's really interesting. However, my NE levels weren't just normal, they were on the lower end of the normal scale. I have had my NE levels tested many times, and all of them were very very normal. But I am really interested in learning more about the NET and several of its issues that are/may be linked to autonomic dysfunction. I don't actually have POTS. I don't have a diagnosis. I was diagnosed with POTS from a cardiologist who didn't know anything about autonomic dysfunctions, after I had a normal TTT, but at the end of it, afte
  11. This is really interesting... 1. Caffeine will probably kill me at this point. 2. It makes my heart rate and blood pressure skyrocket, and I feel like I am having a six hour long (or however long it is in my system) panic attack. I am so sensitive to caffeine, or anything else that raises or mimics norepinephrine. Yet, I have normal NE levels. I believe my underlying issues is due to a sensitivity to norepinephrine, or a problem with norepinephrine metabolism. 2. Neither.
  12. have you totally ruled out lupus?
  13. It does sound just like RA, and looked like it too, but after three months, it went away and never returned. That was over a year and a half ago. My doctors told me that this does not happen with RA. And from what I have read about it, I have never found anything that said RA can just disappear and not return. Thankful, what was the trigger of your POTS do you know? Did you have a virus or have you been diagnosed with any?
  14. I am just wondering if anyone else here, in the course of their illness, experienced an acute, and short lived (like a few months) bout of arthritis? Several months after becoming sick, I developed serious arthritis in my finger joints, with these really really painful subcutaneous lumps the size of peas on a few of the joints. This lasted for a few months, then just went away as quickly as it came. Never returned. My doctors never suspected rheumatoid arthritis. This seems atypical for POTS/dysautonomia, so I'm just wondering if anyone else has experience this?
  15. hi, yes, i have IST and also a PSVT. beta blockers also work really well for me, so i can't offer much on ablations. good luck and please let us know what ends up helping you.
  16. kathy ireland- have you had intracranial hypertension ruled out? i'm wondering how many of you guys have pressure in your head as a symptom that goes along with the whooshing and neck tightness? like unbelieveable pressure? mine feels like there is too much blood in my head. wayyyyyyyyyyy too much blood. or like it's become tar. and my blood pressure has always been normal during these times. sometimes this kind of pressure lasts hours, even days, and i cannot function. it is MUCH MUCH MUCH worse in humid weather right before it's about to rain. but i have NO answers which bothers me a lot be
  17. abbriggs, i get that exact same sensation. my ears get full, neck full, and a horrible pressure in my head. and i can hear and feel whooshing in my ears. it's probably my worst symptom. have you had any tests to see what is causing this? i have only had a brain MRI. non contrast. my doctors never seem to take this symptom seriously. but i cannot stress enough how intense it is. a feeling that intense is definitely not normal. have you had any suggestions as to what it may be?
  18. hi, thanks guys. the thing is, the joint swelling and nodules have gone away COMPLETELY. and it's been over a year since it occurred. even the way my fingers were all curled in is totally gone. my joints feel 100% normal now. i have also read that the rheumatoid nodules are not painful. my nodules were intensely painful. i have read some much on rheumatoid arthritis because my condition sounded so much like it, but never have i read that it just goes away as quickly as it came. has anyone else's???? the reason i am focusing so much on this symptom is because it is the one that makes the docto
  19. i am wondering if this is a common symptom in dysautonomia? about four months after i became sick, i developed really swollen finger joints, with these small subcutaneous, pink and EXTREMELY painful nodules on my fingers. this lasted for about two months, then i was left with some stiffness and fingers curled in for another month or so. then it seemed the problem went away. this seems to be an unusual symptom to my doctors, which is why they keep saying i had or have a virus. i have tested negative for all herpes, epstein barr, cmv and others. i had not been sick for several months prior to th
  20. hi summer, at first, i took metropolol which only targets the receptors in the heart. it really really helped my tachycardia and heart arrythmias. i wanted to try the propronolol however because i wanted something to help the panic attacks and facial flushing (which it does wonders for). if you are looking for a beta blocker to primarily reduce your heart rate, a selective one like metropolol might be worth trying. it caused me no brain fog at all. yet, i know other people have very different stories with metropolol, but its likelihood of causing brain fog versus the propranolol is much much
  21. i am on propranolol, which is a non-selective beta blocker, meaning it targets the beta receptors in the brain as well. i find that my brain fog is much worse on it. i do not know, however, that it is from cerebral constriction as much as it is from norepinephrine being blocked from the brain. it's a good question though. unfortunately, i find that the propranolol does the most for me, so i'm willing to take the brain fog to not have to deal with the multiple other symptoms it relieves a great deal. what a great choice though, huh. would i rather have heart problems or brain fog??? i'll go wit
  22. mine came on EXACTLY like yours. first came anxiety, then panic, then shortness of breath/chest tightness, then tachycardia. that developed over the course of a month or two, then it seemed to suddenly snowball and i accumulated many more symptoms. i have no idea what caused mine. in fact, i haven't even been diagnosed with POTS, just autonomic dysfunction. my first cardiologist called it POTS, but i did not have a positive tilt table test for it, but i did have a positive tilt table test in that it caused an abnormal heart rate. i see a POTS specialist now, and she does not really seem to thi
  23. i get an unbelievable pressure in my carotids, as well as my whole head. it corresponds to my heart rate. i feel and hear a pounding and whooshing that corresponds to my heart rate. and i feel as if all the blood vessels in my neck and head will explode. it is truly horrific, i totally understand. fortunately, i learned that mine is WAY WAY WAY worse in low pressure/high humidity environments. so i moved to california and am not nearly as affected by it. but i still get that feeling a few times a week, for an hour or two, and it is really unsettling.
  24. hi gary, a year ago, i could have written your post myself. i too firmly believe that the constant sheer panic i was experiencing was entirely physiological. never, a day in my life, did i have anxiety, nor did i have anything at that time to be anxious about. but my body over-reacted to EVERYTHING, and mostly, it overreacted to itself. it is a vicious cycle. once you become nervous about the physiological feelings, the adrenaline ups, and if your body is sensitive to adrenaline like mine, then it gets worse, and then more adrenaline is produced, and so on and so on. my life was definitely at
  25. i am interested in learning more about nitric oxide and its effects. would one expect nitric oxide to be a possible reason a person might be functioning pretty well in a dry climate and then bed ridden in a humid, low pressure climate? what is low flow pots?? where may i find more information about that?
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