POTLUCK

Hey, you did manage to do the zoo thing, congradulations! I have been finding many people seem to have a different set of symptoms. For me I do not notice a lot of tiredness with reasonable amounts of exercise ( meaning what I could do before POTS minus out of shape from POTS some ) I have a lot of fatigue and it is hard to get myself going. My walking heart rate is lower than standing, so I think the Circulation is helping. do not like the idea of giving advice as it is tricky, but my thought is exercise is mostly thought to be good for POTS so when posssible I would go with the exercise, rather than a scooter. Again with family, doctors involved, as I do not know all the facts for you. But glad you went to zoo! I always liked the tigers, black ones ( ? panther) best.

Did you check have metanephrines in urine or plasma checked? re: pheo brethor9

" I am worried they will take it as a "normal" TTT and try to tell me I don't have a POTS issue!!" I would worry they might decide that also glad you have 3 others to back you up. I did my lying and standing HR many times before my TTT on different days ( cause I wanted to know it would show up ) and although almost every day was a positive test I found the difference could vary by a huge amount. ( 64 point difference one day, 27 another ) After the test saline made left me very little lying standing difference. Anyhow, for the arbitrary record they did mine with my arms strapped parrallel to body toward feet.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC425340/

I feel great, symptom free during massage ( which is one of only times ), and I am not symptom free lying down normally. I suspect it is venous return plus being flat plus relaxation. I am dizzy on standing after, drink LOTS of fluid, and try to lie around that evening while feeling better. But it does not last to next day. I like incredibly deep tissue massage.

Rama, What happened to the post you wanted, and was it on Diamox also? I found Diamox via Driscoll theory, via Claire's Virginia site via google, and am wondering what else there is on it. Wondering about Naomi's question too before trying to get doc to try it. Sounds interesting. Need to see if they rule out Pheo too.

I read my above post and did not make it clear that it seems likely the MIBG scan was low intensity, low predicitve value but still read positive by radiology. Again it is just upsetting that tests that are supposed to be sure are all contradicting each other and require multiple experts to figure out.

Kayjay, Happy Easter. The couple friends I share this with are very supportive and my girlfriend is also, though she knows nothing about medicine, she is still very supportive. My research this weekend is showing there is a rating system for MIBG scans and a scan that is not as bright as the liver has a very low positive predicitve value. I am guessing this is the case as my specialist first said he was "not impressed" and then said he talked to radiology and there was " slight uptake" and the CT was negative. If the scan was low level, it would be low on the rating system and thus he is probably right. Either way I need someone to run a metanephrines to make sure. I am currently thinking he is probably a _ _ _ _ , but still correct and the radiologist read it positive. It would be nice if radiology would at least then read it borderline. I am strongly thinking it is back to the drawing board with me. I am so sick and really hat this, it is really agony. I am not leaving house much, did not go with girlfriend to family, am not even getting a movie at blockbuster most days. A lot of fatigue. I went walking 2 miles a day 4 days in a row ~10 days ago so I do not think my body is weak, just fatigue/stress/low level chest pain/(brainfog:dysphoric, hard to think, spells of lightheaded, dizzy, blank on words), poor sleep, and the nausea has been really bad. I have Zofran ( have never taken it-got Rx with another that caused nausea ) but think I should wait till after metanephrine test so no RX interference concern. Sorry to complain, it all gets so tough, I can not sort out how I would feel if getting negative news like this and body healthy. Thanks for listening. Not a large chance of dying from POTS, by literature. If a Pheo that chance goes up a lot, but Inderal controlling HR, might help, so not worried about it. Really only thing I am worried about is getting some relief. Well, also worried back to work deadline coming up. Not as worried about that as relief. best,

I hope I do have Pheo, as I can get rid of my symptoms which are awful and go to work. I do hope it is not malignant. A lot of people who have responded to me here know quite a bit. Dr. Karel Pacak is the doctor your mentioning. I am pretty sure what I need is a metanephrine test next. ( There are two, the Urine 24 hour and Plasma and either one could be done along with catecholamines.) I do not know anything about VMA. These should give more info than most things now. PET is available in area if a doctor feels needed. The NE being so high was supposed to make the likelyhood of interference zero or near zero depending which expert I believe. That was the reason the scans were ordered instead of metanephrines. The expert I talked to and e-mailed both semed to agree on the primary Endo choice to do scans. My experience with the Pheo specialist was bad in the way he dealt with me. Also, he said the MIBG was negative-he put it "not impressed" with it, but radiology read it positive at same center. He read the CT himself, then with radiology( they noted he was there on report). Thus, he thinks I do not have Pheo now, a complete flip from the 99% sure I did statement. It seems to make my chances less but he is a bit to all or nothing for an odds calculating job. I think I need metaneprine test and second opinion on scans at another facility. I have not really been able to figure out what symptoms of Pheo would distinguish it from hyperadrenergic POTS. Either the lab made a mistake on both Epi & NE on both blood tubes ( Lying and Standing tube )-4 errors, and radiologist made mistake on reading MIBG scan positive or Pheo specialist is making a mistake on his read of MIBG and CT plus radiology is mistaken on their read or not picking up tumor on CT. Whether or not I have Pheo it is just way too many huge errors for tests that are supposed to be so good.

No, I am thinking Metanephrines plasma or urine with catecholamines added, as comparison can help, would be main thing they will want to do now but specialist was such a _ _ _ _ that he hung up after results without waiting for questions or goodbye and did not mention any tests. I will probalby see him as I have Mon appt anyways just to get RX for test. Also thinking contrast may block test so need to wait a bit for lab till contrast out of body and specialist may know how long need to wait if at all. Or go over other RX that could be problem for test.

Thank you doozlygirl. A lot of info. Thank you Sue. NIH is a long way, especially if I do not have it, as I am in such bad shape. I appreciate the recommendation though and will be keeping it in mind. I wonder if they would do a phone consult. Before I did the scans I wrote to 3 of the 4 main POTS centers I could think of about my NE 8000+ They wrote back saying they had not seen over 2000. They forwarded to a "the world expert" in catecholamines, as the docor put it, and a SR researcher at NIH who said " If the assay was done right NE of 8000+ would mean pheo" suggesting that the ONLY possibility was Pheo or lab error. It is hard to believe both NE and Epi levels in both tubes lying and standing could come back elevated. ( that is 4 seperate results, though I do not know how likely one mistake is to mean another at the same time. ) Then the MIBG is positive. The really harsh part is the specialist who says 99% sure I have it, then sounds as if he is sure I do not, yet does not seem to care. For example when I asked about checking with Radiology and he said he would try he actually said " I have a day job." I am such a mess now. Sort of like being in shock or trauma with autonomic levels sky high and someone puts you on a rollercoaster. I am so fatigued and just going through the motions typing etc.

Pheo specialist originally said based on NE 8000+ and Epi that he was 99% sure I have a Pheo. He did not call with results like he said he would, and said when I called he was "not impressed" with MIBG, and then looked up CT on computer and said it was negative. Radiology read the MIBG as postitive MIBG as "Persistent focus of increased activity within the left adrenal gland that suggests the presence of pheochromocytoma." and CT as negative. I am guessing Pheo doc will recommend a repeat lab though he did not even say so on the phone. All of this is awful. I hate the entire medical establishment. Patients are treated so poorly and tests that are supposed to be sure are not. I would guess I do not have this but am not really sure now, and will not be for a while. Meanwhile I still have symptoms, still can't function, can't work, feel awful. Feel much worse but MAYBE when stress of testing done will go back to just bad.

This may be after the fact as you said tommorrow. I am west coast time too. I can not say for you, this depends on how you handle and react to things. I was pleasantly surprised in being forced to walk around in a nonstressful environment at a reasonable pace for quite a long time yesterday that I felt better not worse after. Will there be a way you could break on a bench or something, someone who would stay with you if needed?

I agree vitals do not necessarily reflect how I feel directly. I would of course consider RX influences and ask my doctor. I am also wondering about HR variation, as opposed to number. Sometimes my HR will be going up and down and this must cause problems, yet the overall number, for example on my BP cuff that averages the minute will be fine. My sports watch or pulse ox HR will show a different picture. I would consider what is the lying to standing difference in HR &/or BP especially right after I stand up and consider when does the dizziness occur, and see if there are any connections that are obvious. ( For example dizziness on standing and drop in HR that corrects ) I believe my dizzy/lighthead/brainfog symptoms may be due to volume depletion. This has not been measured so I do not know this. If the blood vessals are "squeezed" like a squeezing the water out of your garden hose to store it, and then held upright ( standing ) the only water ( blood ) runs to the bottom. This does not leave enough at the top. Like a bottle of water partly consumed, the gap at the top where your brain is when you stand. Hope you can figure it out.

They can do more advanced continuous home EEG, stimulated EEG, inpatient EEG etc. It is harder to decide whether what you experience is caused by seizure such as simple or complex partial epilepsy, or whether lack of oxygen to the brain causes the resulting seizure. this can be caught on EEG and video. The smell of burning rubber for 30 sec-2min with a maximum of 30 minutes is near pathognomonic for epilepsy. Hope the info. helps.

The Peter Rowe video posted here recently agreed it is very affective in most people. On my tilt test my HR went from lying 85-105 ( doctor said 87-90 ) to over 140, the nurse said as high as 156 and low as 80 ( or 86? ) Anyhow, after the test the doctor left and nurse said bag of IV fluid before I left. When I stood up I was suprised as HR was about 115. I pointed it out and asked if I could stand there which she let me and it was lower and more level by far. Before IV saline I was very positive on the tilt. After IV sailine it would be a negative test. I still felt dizzy, but felt better after leaving.

I just watched the Rowe video said to raise it 15% if tolerated, ( the amount of 2 bricks they said ) because it does something that may make the kidney conserve some fluid If I was sure it was causing me headaches I would not do it myself, as I would figure everyone is different.

I have a CVS drug store arm cuff. Why can't you use a wrist monitor lying down?

It seems like "POTS" may be caused by many different things. It is good medicine has chosen a cutoff for diagnosis and research that can be measured with a tilt test. However, simply looking at numbers for an unexplained illness. ( ex. Deciding your tilt test HR went up 29/min, you do not have "POTS" even if you have symptoms, or your HR went up 60 you have "severe" POTS is very arbitrary. ) If I went to the doctor feeling terrible, and he could not why I felt terrible but said my fever showed I was sick but not very sick, I would get another opinion. Comparing the high fever with a strep throat to the low fever with a rare but deadly viral illness would not be useful either.

Thank you everyone. I feel a bit better today, and it is good to remember as you pointed out Emma "you can rely on the fact that as POTS is so random you will feel better soon." I am quite certain the stress of waiting is making me far worse the past week and onward, and once I know either way I will feel better. Although hope it is not malignant, I do hope for Pheo. Sweetfeather thanks for info. Welcome to the forum. I do not have any flushing like MCAD/MCAS but it is something I have considered. I am reading a lot about the test and drug interference. ( believe me ! ) What I have found suggests levels as high as mine are not drug interference. Most interference are mild elevation & even 4x normal was a case report in itself. (From reading:They use HPLC test and thus the drugs themself do not effect the level just the effect of drug on the NE/Epi which is mild, though above normal.) I am very glad you are doing better yourself. I cannot know whether scans will be show I have it or not. Just have to wait. best

Thank you. You are right about the randomness, so good advice.

I think that will get an incredible amount of press for POTS patients.

I am trying to make myself eat also. I think it is nausea but also decrease energy and not wanting to stand to make anything. It is a bad week.

Sorry to complain. This is just an awful week. I have scheduled my MIBG & CT scan to check for Pheo. Am hoping so badly that it is a benign Pheo so I can get better. ( Of course hope it is not a malignant tumor as 5 year survival is 50% and almost all die early. ) 10% are malignant. I am more stressed that it may not be a Pheo than stressed over if it is malignant. The stress of the tests ( scheduling, resceduling due to their error etc.) are making my POTS or my Pheo so much worse. I have left the trash can sitting at the curb for days, as do not feel like going out to bring it in. Fatigue, head is spinning/lightheaded often, feel pulse pounding (high not tachy, measured), chest dull ache, nasuea, hard to get myself to eat, or to make anything to eat that requires ANY effort. Yet, only a week ago I walked 2 miles 4 days in a row. I would probably feel better if I exercised now, but can not get myself to do anything. ( I am dysphoric but not sad or blue, no panic attacks and anxiety does not do this to your HR so I do not think there is any underlying psychologic component beyond clearly stress is affecting whatever I have.) I have been considering if this could be a Pheo but the symptoms are simply to similar to Hyperadrenergic POTS. Off my B-blocker I was a mess with HR (85-105) lying and HR ( over 140 and oscillating to 160 & way below 140) standing. Intermittant symptoms of headache, chest pain, palpitations, fluctuating but always high BP, sweaty, postural change in HR, felt like mountain lion in room, lighthead, dizzy, brainfog, cognitive difficulties. I do not know if most Hyperadrenergic POTS patients are this bad without RX, There is so little writeen on it, it is easier to find stuff on Pheo than Hyper-POTS. Also, Pheo patients frequently have weight loss, as I have had in the last few months, and elevated sugars. ( My Diabetes started with POTS symptoms 2 1/2 years ago and worsened with symptoms worsening 1 1/2 years ago and I am thin -BMI ~22, not common for a DM 2. ) My NE is off the charts but without scans or another test, predictive value is not necesarily high because the tumor is so very rare. ( 1000 per year US, but prevalence .05-.2 in HTN pts which I am clearly when off RX ) Thus, bottom line is I may have it or may not have it at all, I have to wait for the scans to see. The stress is just making my symptoms awful. Also stress tells me that going back to work is going to make my symptoms awful with stress. ( Though there will not be as much stress as waiting for this test. ) Anyways, thank you for listening to my complaints. I just knew there are few people who can understand what is like to feel this bad (without looking like you are walking away from a car crash on the outside) other than people who have POTS so thought I might get empathy, not just sympathy. best, POTLUCK

I was taking 0.75mg for 1-2 months at night to help sleep. Cut to 0.25 (1/4 of 1 mg pill) for a week and stopped but added Ambien CR 6.25mg in replacement. I have not had any troble with change in symptoms that I can correlate with this change if this is of any help. Ambien affects the same GABA receptors so not sure if it is any better. They both help sleep but I still have some trouble on both.