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valliali

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Posts 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 isuprel infusion, I developed a heart arrythmia which my doctor considered a result of norepinephrine. So I felt sure, and still feel fairly sure, that there is an issue with norepinephrine going on. However, my NE tests have always been normal, both urine and plasma.

    Also, a norepinephrine problem (whether NET or a defunct in the COMT enzyme, the enzyme that metabolizes NE) doesn't explain some of my symptoms, like the arthritis that came out of nowhere.

    Rama, do you know of other norepinephrine problems that would make a person continue to have normal NE levels? Is it possible for just the receptors to develop a sensitivity to the NE, though the NE is actually acting normally? How can I find more about this? The NIH researcher I spoke to, who has published a great deal of info about POTS and other dysautonomias and their relationship to catecholamines, told me that there is only one study linking NET deficiency to POTS and that he himself isn't quite convinced. How can a person get this tested?

  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 isuprel infusion, I developed a heart arrythmia which my doctor considered a result of norepinephrine. So I felt sure, and still feel fairly sure, that there is an issue with norepinephrine going on. However, my NE tests have always been normal, both urine and plasma.

    Also, a norepinephrine problem (whether NET or a defunct in the COMT enzyme, the enzyme that metabolizes NE) doesn't explain some of my symptoms, like the arthritis that came out of nowhere.

    Rama, do you know of other norepinephrine problems that would make a person continue to have normal NE levels? Is it possible for just the receptors to develop a sensitivity to the NE, though the NE is actually acting normally? How can I find more about this? The NIH researcher I spoke to, who has published a great deal of info about POTS and other dysautonomias and their relationship to catecholamines, told me that there is only one study linking NET deficiency to POTS and that he himself isn't quite convinced. How can a person get this tested?

  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 agree that although the drug helped ease all their symptoms, the withdrawal alone made them wish they never took it.

  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 neck. It was so awful I moved to California, where I tend to feel much better.

  6. 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?

  7. 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 first symptoms was extreme facial flushing in the form of a butterfly on my face, i was of course highly suspect of having lupus. one of the questions my docs always asked was if i developed other rashes from the sun on my body.

    i am not really sure what kind of rash a person with lupus would expect as a result of sun exposure, like if it is bumpy and itchy. i know that after getting dysautonomia, i also noticed that when i went into the sun, i developed little itchy bumps on my skin. i had worked in the sun for years prior with no reaction at all, so i too was really surprised. however, it went away. but my "rash" was very, very mild and hardly noticeable. it sounds like yours is more than that, so i think it's fair to want to pursue talking to doctors about other conditions that may cause a heightened sun sensitivity.

  8. 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 to the cold. My face is much more greatly affected when I am symptomatic. When my body temperature is low, like 96.5, but then I go into an environment that is warm, my temperature will shoot up to around 100 degrees, and stay that way for upwards of 10 hours. I will also experience a horrible facial flush with lots of burning. The propranolol has helped this a huge amount as well.

  9. 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, after the isuprel infusion when I was lowered on the table, my heart rate jumped from 100 to 170 with severe symptoms. He indicated that my heart rate was still sinus rhythm, but some of my other doctors suspect this was a PSVT. I do not know to this day, and because beta blockers control my heart rate SO well, I am really not ready to find out what was going on. However, I had this reaction to the isuprel infusion, not to the tilting. My heart rate and blood pressure did not change much on the TTT, though they do sometimes, but a rapid heart rate/dizziness upon standing are not amongst my hallmark symptoms.

    If I do anything that raises "adrenaline" - consume caffeine (I can't even touch chocolate), exercise, etc etc - my heart rate is out of control. Without beta blockers, it will quickly jump from 100 to over 200 from minor stimulation.

    One test I have had come back abnormal was for normetanephrines, the metabolite of norepinephrine. I contacted a researcher at NIH who specializes in catecholamines and he suggested I could not be metabolizing the NE, which means more is going into the neurons than should be. I have not found a single doctor who understands what low normetanephrines mean, and I am seeing some of the best at a very well regarded institution that even has POTS doctors. So I've put this abnormal test on the back burner, but now I am interested in pursuing this avenue of problems with NET and/or norepinephrine metabolism.

    Thanks so much for your suggestions!!!

    Interesting post. It is possible some hyperadrenergic patients (although this is still a debated causal mechanism) have alpha1 or beta supersensitivities which would explain your normal NE levels and potent reaction to stimulants.

    More interestingly however is this study:

    http://circep.ahajournals.org/cgi/content/abstract/1/2/103

    Here patients with POTS were found in 5 of 6 cases to have reduced or nearly absent peripheral norepinephrine transporter protein expression. This in theory would lead to excessive norepinephrine levels and POTS through excessive stimulation, increased peripheral resistance and vasoconstriction. However in these patients, norepinephrine levels were not significantly higher than normal controls AND their MSNA (muscle sympathetic nerve activity) was found to be considerably elevated despite these normal NE levels - as if the nerve activity and norepinephrine levels were mismatched.

    It could be that rather than decreased NET levels causing a hyperadrenergic state, decreased or abnormal norepinephrine release or receptor activation is resulting in reduced NET but that it is creating a supersensitive state. THis is where clonidine, methyldopa or phenobarbitol might come in to play.

    next time your symptomatic, please have a look at your hands - feel them to see if their is any change in their appearance, temperature.

  10. 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.

  11. 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?

  12. 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?

  13. 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 because it is soooooooooo intense.

    does anyone have any ideas about what is causing our pressure complaints?

  14. 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?

  15. 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 doctors certain that i had a virus. they say it doesn't fit autonomic dysfunction or POTS. my CFS specialist is even wanting to put me on antivirals, though i have never tested even close to positive for the viruses that can lead to chronic immune problems. in fact, i'm like one of the 4% of the population that doesn't even have antibodies to some of them. but i showed a picture of the swelling and nodules and all my doctors say it was from a virus. i just don't really understand how i could not have been sick with a virus prior to the onset of my symptoms, and if it was a virus from let's say my stint in africa, why the arthritis came on five months after the onset of my initial symptoms.

    i would think that if i had a genetic or autoimmune issue going on, then the arthritis wouldn't just go away. or it may for a period of time, but come back. it's been over a year. and i don't even have a little residual swelling or pain. my fingers were all curled and bent, and now they are completely normal. but i haven't gotten better. so if this is autoimmune or some kind of prolonged immune response, it's still going on, and probably progressing. my autonomic symptoms are still present so if that triggered a rheumatoid problem, why would that be the only thing to go away while the other issues progress?

    i know i may never know the cause to my illness, like many of us don't, but because i don't even fit into a proper diagnosis, i would at least like to know if this is an autoimmune or genetic issue, or something caused by an external agent, like bacteria, tick or virus. my POTS doctor was the one who did not think my original POTS diagnosis was correct, though she agreed i have obvious autonomic dysfunction. she too believes i had a virus in africa. but again, i just don't know what virus everyone is referring to!!!! i wasn't sick for MONTHS prior to the onset of my symptoms!

    I have something similar. It started about a year ago. I have two areas that are affected: my left hand and my knees.

    My hand is affected mostly at night and in the morning. I wake up feeling like the middle finger is broken at the last joint, and the finger swollen and is curled in. It hurts so bad I could swear it was broken, but within a few hours of waking up it's back to normal.

    Also, my knees will randomly ache and get warm, sore, and stiff. I'll go through periods of several days where they hurt so bad I feel like my legs will collapse out from under me. Then, after a couple of days it goes away.

    The symptoms will return every few weeks or so, and then go away again.

    I have had blood tests for rheumatoid arthritis, rh factor, inflammation, and thyroid and they all came out normal.

  16. 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 the onset of all my symptoms. i also don't understand why, if the arthritis had been caused by a virus, it came on so much later than all my other symptoms, especially if i tested negative for the "chronic" type of viruses.

    i am wondering if anyone else knows potential causes of this -- is it "normal" for autonomic dysfunction? i do not have fibromyalgia, and i honestly don't really know what i have. i was told i had POTS, but didn't have a positive tilt table test for it. but i definitely have autonomic nervous system problems. i got sick about a month after returning from africa, but my doctors feel that they have ruled out all those possibilities (?)

    i feel the the arthritis i experienced could separate the cause of my illness from a genetic problem, for example, from a viral/bacterial issue, which i am inclined to think it is.

    so i am wondering if this kind of arthritis could be a genetic/autoimmune issue, or is likely that something external caused it? and i am especially curious as to why, if a genetic problem (like methylation dysfunction) or autoimmune problem could have caused the arthritis, why it would come and go, and not progress???

    thank you all so much for any feedback. it's been two years, and i feel like i have NO answers, not even a diagnosis.

  17. 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 less.

  18. 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 with brain fog. awesome.

    Since starting a combination of BB and Florinef almost a year ago, I have had improvement in a number of ways, although I still have a long way to go. I am able to stay standing for longer periods, I do not get as nauseated, I am not as tachycardic and my episodes are less often. I would say the combination has helped a lot.

    However, my brain fog has not changed. This is my most disabling symptom and is the thing that is holding me back in getting on with my life. I work as a nurse and can not do my job with out being fully alert all the time. It's very frustrating.

    I read a study from 1998, from Vanderbilt, called "Raised Cerebral Vascular Resistance in Idiopathic Orthostatic Intolerance: Evidence for Sympathetic Vasoconstriction" It suggests that symptoms of hypoperfusion are caused by constriction of the cerebral vasculature. This includes "altered mentation". I have read in recent posts about constriction of the carotids, but this and other research would seem to suggest it is more than that - that infact, there is perhaps a sympathetic response in the entire vaculature of the brain.

    When tested by my ANS specialist, he did a transcranial doppler which measured cerebral blood flow velocity. Mine decreased by close to 30% with upright position. According to the study I mentioned, normal controls dropped only 10%.

    Here is my question. BB are known to cause vasoconstriction and according to my doc have worsened Raynaud's syndrome for me. Does anyone know if BB can have vasoconstrictive effects on the brain as well? Could BB make brain fog worse?

    I know this is an old study and maybe some of you have more up to date info on cerebral vasoconstriction in POTS. I would love to know about it if you do.

    Thanks,

    Summer

  19. 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 think i have POTS either. but i have no other explanation as of yet, and i do know that i have dysautonomia.

    mine started two weeks after i returned from living in rural africa. i was not sick, nor was i stressed at all. i felt great. i was living in maryland, and do wonder if i wasn't bit by a tick at that point. my doctors don't seem to think i have anything from africa. i also had started the birth control pill about three months prior, so i'm not sure if that could have been the culprit either. otherwise, i have NO freakin' clue. i have always been healthy as an ox, and never ever had any signs that i was prone to becoming sick like this. it just seems so sudden and out of the blue. i am wondering if anyone else feels this way as well.

    I'm still plagued to try and figure this out. When you look at what causes POTS, they think it is due to an unknown Viral or Bacterial illness, or occurs after a Trauma.

    Personally, I theorize that whichever of the above took place, there must have been some sort of immunosupression taking place as the only thing that trauma and virus have in common is that they both can cause tremendous stress on the body.

    It is well documented that stress on the body, no matter what form can lower the immune response. So, I'm just curious if everyone could respond and keep it short so we can see all the answers easily. I'll start:

    I lost my brother to lung cancer in 12/3/2006. We were 18 mos. apart in age and best friends. His death was a total shock as he was responding to chemo, and going to work every day. He had an internal GI bleed as a result of a side effect of one of the chemo drugs he was taking, so this came as a big surprise to everyone. My symptoms started shortly therafter and I had to go out on disability in 3/13/07, just 3 mos. after his death. Symptoms started as free floating anxiety, no drug could get it under control, then came shortness of breath sometime with and without anxiety, the attacks would last anywhere from 1-3 hours and sometimes occurred while just sitting in a chair. Next came the tachycardia, and then all 3 together. Thats how I got my POTS. How did you get yours ? Prior to my POTS, I realized I had chronic Lyme disease confirmed through specialized testing and diagnosed by 2 different MD's. POTS came on strong while treating the Lyme and not before.

    Gary

  20. 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.

  21. 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 the lowest when i was experiencing what you are describing, and i agree that it is like the worst thing ever. i found that xanax made me more anxious, and i couldn't tolerate any meds really.

    then i found propranolol, a beta blocker. it gave me my life back and i haven't had a panic attack in five months, let alone the constant panic in awhile now.

    beta blockers don't work for everyone, but i think it is a much safer reliable drug than taking all kinds of supplements, stopping them, relying on benzos, etc. it might be worth a try for you.

  22. 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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