nantynannie Posted July 13, 2004 Report Share Posted July 13, 2004 Hi Everyone,I've been reading a lot of posts regarding the adrenaline rush, shakiness, and tachycardia that comes along with it (I think it is also causing me to have acne!!!). Because I was shaking so intensely during my tilt table, my cardiologist is INSISTING that I have a pheo tumor, though my 24 urine was normal (no catecholamines). Now he wants me to have a CT scan to look for this supposed tumor, but I suspect that it does not exist. Has anyone figured out what this is? Are we having an inappropriate response to a normal amount of adrenaline, like a receptor problem? Or do we have too much adrenaline like a pheo tumor, but no tumor is there? I am very curious about this subject. Thanks for any responses!Ann Quote Link to comment Share on other sites More sharing options...
Guest Julia59 Posted July 13, 2004 Report Share Posted July 13, 2004 Did the Doc that gave the TTT use a drug in your IV---(I always have trouble remembering the name---but it's a drug simular to you own adreanaline) I refused to have it added to my IV when I had my TTT.I knew I was far to weak for my body to handle the response. I already had way too much of my own adreanaline. Although I passed the TTT---I was still diagnosed with POTS. I was very sick----but I just didn't have the blood pressure issues. I know for sure I would have failed the TTT if that drug would have been used.I wonder if we get those horrible adreanaline rushes because our ANS is so out of balance that it just sporaticly spits out excess adreanaline as a natural response to regulate a messed up ANS. Our bodies are in the flight of fight response---saying, "what's the matter here, something's wrong, I better spit out some more adreanaline"! Only it really makes us feel more of a mess. The adreanaline surges are trying to tell us something---only no one can figure it out---not even the Docs. All we can do it medicate the symptoms......There is research---but no solid answers to what the big thing is behind all this mess. Have I got you totally confused yet? LOLJust felt like rambling I guess----unfortunately some of the things that pop in to my head---POP on to this discussion forum Take Care,Julie Quote Link to comment Share on other sites More sharing options...
blackwolf Posted July 13, 2004 Report Share Posted July 13, 2004 During my TTT i had no iv and still shook like crazy. My Doc didn't say anything about any tumor to me so i really don't know what to say. As to your other question, mabey check the Vandy site. they are usually some of the first to suggest poss. reasons.Blackwolf Quote Link to comment Share on other sites More sharing options...
Ernie Posted July 13, 2004 Report Share Posted July 13, 2004 I agree with what Julia just said. I have no tumor and my adrenals just produce and produce and produce and doctors don't know why. Research on the subject is still an ongoing process.Ernie Quote Link to comment Share on other sites More sharing options...
nantynannie Posted July 13, 2004 Author Report Share Posted July 13, 2004 The doc did not give me the isuprel because my heart rate was already too high. He stopped the test at 25 minutes, right when my blood pressure started to drop 125 to 90, because I was shaking too much. I do not know if it would have continued to drop if he had not stopped the test. So you guys also have too much adrenaline...has anyone been tested (24 hour urine) for excess adrenaline/catacholamines and what was the outcome? I just don't understand how I could have too much, but test negative. Does everyone with POTS have too much? I guess there could be other causes as well? I will check the Vanderbilt site. Thanks!Ann Quote Link to comment Share on other sites More sharing options...
shayden Posted July 13, 2004 Report Share Posted July 13, 2004 Also make sure that it is not your meds causing your shakiness. Every single time my Doctor prescribes a new medication....I look at him and say "the more meds I take....the more my body shakes". In other words...he needs to increase the drugs that make me not shaky to counterbalance what he is doing.I recently spoke with an Endocrinologist (?) regarding the adrenaline/POTS factors. He said that since POTS affects all of your autonomic nervouse system, which includes your release of adrenaline, a POTS patients could release too much, too little, or simply have a bad reaction to their own adrenaline. I would advise all POTS patients to consult with an Endocrinologist. They are awesome in explaining all the mechanisms and all the parts/organs being effected by this disease.Best of luck!Susan Quote Link to comment Share on other sites More sharing options...
nantynannie Posted July 13, 2004 Author Report Share Posted July 13, 2004 Susan,Thanks, I think an endo will be my next stop. I am not on any medications. I tried the beta blockers and had a terrible reaction. It felt like the beta blockers quadrupled my adrenaline and I felt like I was going to jump out of my own skin. They should have had the opposite effect. Oh well! Thanks for the info...Ann Quote Link to comment Share on other sites More sharing options...
RunnerGirl Posted July 14, 2004 Report Share Posted July 14, 2004 Nantynannie:I have been worked up for pheochromocytoma multiple times. Keeping in mind that these are extremely rare tumors - most often presenting with the major symptom of episodic or sustained HIGH blood pressure - I WOULD recommend the following. If you've only had one 24-hour urine test and you did not have an episode during the collection, you may want to consider a repeat test while (or immediately after) you experience symptoms. Some pheos secrete catecholomines episodically, while others do so continuously. In the instance of the former, it is possible to get a false negative. If your cardiologist REALLY suspects pheo, however, I would recommend you ask him to order a plasma FREE metanepherine test, a relatively new and highly accurate blood test developed at NIH. This test is reportedly 99% accurate in diagnosing pheo, as it is able to measure the bi-products of these tumors even when they are NOT active. The blood draw can take place in a local lab, but it needs to be sent to the Mayo Clinc for processing. I can provide you with more specific info if needed, as I've been through this test multiple times, as well. It is very unusual to start doing CT scans and MRIs for pheo if there is no biochemical evidence of one. The diagnosis is usually made via blood or urine tests, then the search for the sometimes elusive tumors begin. My docs have definitely ruled out pheo in my case, and their hypothesis is that I simply have a hypersensative response to NORMAL levels of adrenaline. I think many folks with the hyperadrenergic forms of dysautonomia have this situation. The NIH is also conducting a trial for a syndrome they call "psuedopheochromocytoma" - for folks who have all the symptoms of pheo but do not have the tumor. It's unclear what mechanisms cause this - a mind-body connection or some physiological issue - that's part of what they are hoping to learn from the study. Sorry for rambling on, but I do hope some of this info is helpful. Best,RunnerGirl Quote Link to comment Share on other sites More sharing options...
nantynannie Posted July 14, 2004 Author Report Share Posted July 14, 2004 RunnerGirl,That was very helpful, thanks! I told my doc that I think I am having an overactive response to a normal amount of adrenaline. He considered this and said it was possible in theory, though he had never heard of it. He does not really understand POTS either. I have an appointment in August with an autonomic dysfunction specialist that I found on the website. Meanwhile, my cardio is CONVINCED that it is a pheo because of the reaction he saw during the test. My tilt results say "Inappropriate sinus tachycardia in response to catacholamine excess with cyanosis in the extremities." I am going for a CT on Thursday. It is just as well for me to do this test and convice him that I don't have it. Otherwise I would have to go you know what in the bottle for 24 hours up to three more times.After hearing from you and others on this site, I am certain that I do not have a pheo. I am interested though in what it is that causes this response. Sometimes at the slightest noise my heart starts racing (when I am not startled.) When the alarm clock goes off my heart races as if I was just shot at or something. It is quite ridiculous.THANKS FOR YOUR INPUT!Ann Quote Link to comment Share on other sites More sharing options...
POTSMama Posted July 14, 2004 Report Share Posted July 14, 2004 Ann,You sound like me - - I hear a noise at night that startles me from sleep (my cat meowing, our baby crying, a car going by) and my adrenaline totally surges and my heart starts racing and I get shaky and anxious. I am overly loud sound sensitive sometimes anyway - - can't handle loud noises like fireworks as they cause me to adrenaline surge even in the daytime awake. This is how my symptoms first started: a loud noise in the middle of the night with serious tachycardia produced. In addition to tachycardia, I also appear to have volatile blood pressure with adrenaline surges (it can go up or down, and often bounces according to my home measurements). I read (Vandy website maybe?) that there is a transient increase in serum epinephrine levels with standing in POTS patients with levels falling when supine so I've wondered if that is why a 24 hour test can show normal levels but we can still feel we are having excessive adrenaline surges, but I don't know.Carol Quote Link to comment Share on other sites More sharing options...
opus88 Posted July 14, 2004 Report Share Posted July 14, 2004 I have read that the 24-hr. test doesn't really give a clear answer. Think about it - it's just averaging your output, not showing surges and drops. There is another way to test, but I don't remember now if it's hourly collections or exactly how often. I wish I knew where I had read that, but maybe you could ask your doctor about it. Quote Link to comment Share on other sites More sharing options...
RunnerGirl Posted July 14, 2004 Report Share Posted July 14, 2004 For those interested in the best biochemical test to rule out pheo - often necessary in the process of diagnosing POTS, IST and other dysautonomias - check out: http://www.ibl-hamburg.com/catecholamine/l...enders-2002.pdfRunnerGirl Quote Link to comment Share on other sites More sharing options...
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