POTLUCK

Thank you for the responses to the poll again, especially those who did not have there NE tested but took the time to vote. Endocrinology has ordered an MIBG scan and CT of the Abdomen and Chest for possible Pheochromocytoma or similar tumor. Radiology is not familiar with MIBG ( though they can do it ) but I am thinking of seeing if I can move the test to a big center, as my old primary doc tells me it is important if you may have this to get the scan done right. I faxed the results to my old primary and though he does not stay up to date on Pheochromocytoma info. ( he is older and going out of practice ) he called personally, and he thinks I have it. I am still wondering about the person on the poll that had 5000+ standing, other than my vote. Would love to hear. Hope everyone is as well as possible. I am trying. This Pheo thing has me stressed. More worried I don't have it. Maybe a warm bath, it's raining here in CA, USA. best,

Is that U. of Toledo with Dr. Blair Grubb or is there another in Ohio? If it is I called recently and it is a 12 month wait for Dr. Grubb and a 9 month wait for the cardiac NP PHD who works with him. Also Mayo-Rochester and Vanderbilt both told me 6-7 months if interested.

Hi, Someone PM'd to ask if they were checking on Pheochromocytoma, and a few people above are mentioning ( thank you all for the concern ) and yes my Endocrinologist who ordered this test got me in right away and is sending me for a CT of the abdomen and of the chest and an MIBG scan. He was very nice and the help was appreciated but did not have much experience with this to advise me as they are rare. He said 2 of them he found with 24 hour urine screens and the 3rd he was a resident and the NE was over 2000. He has also had 3 patients with POTS, not sure if that counts me, but he mentioned someone else with Hyperadrenergic POTS. I do not think he was the main POTS doctor so he did not know the NE. I asked if he thought I could have pheo, but all he could offer is "it's possible." I do not think my Cardio who is the main POTS doctor does fractionated catecholamines, and he will not have seen any pheos is my guess. I am hoping it is a pheo, as I would like to have them cut out my POTS and be rid of it. Put it in a jar and say that was when I had POTS. I do realize it is a serious tumor and operation and there is even potential for loss of the adrenal gland. Sue, I do not know about the Propranolol, but I would think the body would increase NE ( and potentially Epi ) in response to blocking the B1 and B2 receptors, the endo thought this was certainly possible also. I do not think it would normally increase it to anywhere near 8000+ but maybe in POTS. It seems like anything can happen in POTS. Thank you all, Potluck

Hi Martiz, I think someone else voted 600-2000 lying and someone else put 5000+ standing- that is what I was asking about. That is not good or bad, I am just interested in how high POTS can go. Did you have a standing test done also, and that was 5000 and up? If not someone voted it. I am interested, to know, if I might have a Pheochromocytoma, and wondering if numbers as high as this show up otherwise. No apology for voting is needed ( anyway about it ) , but thank you for voting, for clarifying, and for the thought. best,

Cognitive problems have been a big part of the major symptom of "dizziness"/lightheadeness/brainfog/dysphoria etc. which is all the same, and is my biggest problem by far. Before I knew I had POTS I spent a lot of time explaining it to doctors, often while not being able to think very clearly, making it harder to explain. I tried telling them it is like someone is choking you, or you are drugged. The cognitive problems include word finding, trouble adding numbers quickly ( I know I could do this fine 3 years ago, ) recalling what I am in the middle of saying, attention, working memory, what I have described to doctors as "my A game is off " because I used to be sharp, and know what is going on around me. Also difficulty integrating a variety of sensory stimuli at once, like your looking to the right and something comes at you quickly from the left, or I am walking down the sidewalk and someone is in the car window parked next to me. I do not just "know" it like I used to because my brain is just not tracking normally. I know for a fact that this is true and that it is different than I used to be and that it gets better and worse at times. At its worst I fumble things, and drop things, something that I spent 20 years of my life without doing. But before the POTS diagnosis was made just try explaining the above to a doctor and see how they look at you. I can still interpret that.

Hi, Someone just added 600-2000 lying ( for a second one ) and 5000+ standing. I would love to know about it, if anyone wants to comment? Martiz, Thanks for input. I was told sitting could increase NE in POTS, as you are upright. I do not know if it increases as much as Standing.

Thank you for the kind wishes Issie & the thoughts on VPA Rama. I also appreciate people taking the time to vote who have not had it tested, in additon to those who have had it tested, as it really makes for a much more complete picture of where the population of people who are on Dinet are at. ( Other than my 8000+ in both ) it seems like everyone responding so far who was tested is below 600 Lying and above 600 standing. Again thanks, I am very interested to see where people are at.

Well, I did manage to set up a poll. I am truly wondering if I am the only one who has over 8000 Norepinephrine levels. Hope people will answer even if the answer is you have not had it checked, just so I can get an idea. Thank you everyone. POTLUCK

I am wondering what these run. Do not know if this has come up before. ( Trying to set up a poll, not sure I can do this.)

All along when I go to a member page my computer freezes (locks) and I have to close off site. It interferes with trying to PM because I go to the member page and start typing new message and it locks up. I have had times I have had it lock up on 4 PM's and I had to keep coming back and trying to finish the message. I am just looking at Rachel's added message about upgrade, thank you. Maybe it is something with my system in my case since it has been all along. It only does it on Member pages not on forum pages. best to all,

Thank you for the replies. It did make me wonder about Pheo, and I have contacted the Endo who ordered it. I did not think Pheo would cause increase HR standing as it is a tumor not connected to feedback, just doing it's own thing if I understand. Has Anyone had a NE this high on the site? What are typical Hyperadrenergic results like? Does anyone take Inderal/Propranolol at a dose of 140 per day or higher? Also has anyone had a pheochromocytoma diagnosed?

Could not sleep ( not unusual ) - lab faxed my copy Catecholamines Fraction: Supine Plasma: Epinephrine: 121 H reference <50pg/mL Norepinephrine see note ref. 112-658 ( Results are above the Clinical Reportable Range for this analyte which is 8000pg/ml) Dopamine see note <10 pg/mL ( Results are below reportable range for this anylyte which is 10 pg/mL Catecholamines Total see note ref. 123-671 pg/mL ( Results are above the clinical Reportable Range for this analyte which is 8121 pg/mL) _______________________________________________________________________ Catecholamines, Fraction, Upright Plasma Epinephrine 270H ref. < 95 pg/mL Norepinephrine see note ref 217-1109 ( Results are above the Clinical Reportable Range for this analyte which is 8000 pg/mL) Dopamine see note <20pg/mL ( Results are below reportable range for this analyte, which is 10pg/mL ) Catecholamines, Total see note 242-1125 pg/mL ( Results are above the Clinical Reportable Range for this analyte, which is 8270 pg/mL) _______________________________________________________________________ I guess the note is what is in the brackets ( ), as there is not other note. Bold print is mine to note the DA was below normal, but I do not really understand how below 10 can be below reportable but normal is below 10 on the supine. Do I win a cupie doll? What might this mean? I am on B-blocker ( 140 a day ), seems that might raise it, But above 8000. Has ANYONE had this?

I read " The GABA and NMDA receptors should be balanced, but after an injury or viral attack, NMDA fires more than GABA. Minor and Hunter (2002) have proposed that prolonged exposure to inescapable stressors will eventually deplete GABA, thus reducing an important form of inhibition on excitatory glutamate transmission. " here http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3022475/

Just had to smile after reading that last bath post Jen

Good Questions. Interesting that all 3 answers are the same for all 3 of us so far!

Forevertired, Sorry, I wanted to quote this line " Does your blood pressure range a lot, like mine does? Or does it only range within about 15 points (like 115/70 to 130/80 for example)?" so it would call your attention to the answer, but I cannot figure out how to quote part of a section, ( tried highlighting it and hitting quote-maybe someone can tell me) Anyways, generally my BP is high. Off meds it was all higher than 135 systolic and 85 diastolic, it bounces in the opposite direction of the HR, but stays over those numbers. On Propranolol 140 a day ( 80LA AM & 60LA PM ) it goes a little lower, and now with 75 of Losartan on board it seems to go to a lowest of 110 Systolic and 73 Diastolic- standing, but still fluctuates. Off topic but did they come up with something to help you sleep?

I am also a fan of the poor mans tilt test that can be done by you or your doctor right away. From a 2012 summary paper on POTS: Head-up tilt table (HUT) testing is the standard method to assess a patient’s reaction to postural change. This involves placing the patient on the tilt table, and measuring blood pressure and heart rate. Then the table is tilted upright to a 60~80 degree vertical angle for approximately 45 min and blood pressure and heart rate are again measured, either continuously, or at least every 2~3 min.[12] The standing test, considered to mimic real life, is another test for POTS.[13] The patient is asked to stand upright without any assistance, so the patient supports his own weight and maintains balance.[13] One study suggested that, though both the standing test and HUT have the same criteria to diagnose POTS, the standing test had a specificity of 79% compared to only 23% for the HUT.

I am on the long acting form of Propranolol but have to take it twice a day and even then it wears off. I am a mess without it. I take (80AM and 60PM) because my HR runs higher in the day. The 80mg AM dose lowers my HR in a couple hours to ~65 Lying and ~85 standing in the morning, I feel worse then -more hypoperfusion (brainfog) when it is this low, but by later in the afternoon it rises to 80 Lying and 105 standing and I feel better. If I take a 60mg AM dose instead I feel better in the morning with higher HR, but go to HR of 115-120 standing by late afternoon and start to feel like a lion just walked in the front door of my house.

I was wondering about his program, so will be interested to see what people say also. How is it going so far? I find I feel a little better after cardio exercise but it speeds my HR up. ( like 90 standing to 115 standing for the next few hours afterwards ) I have no idea why but went for a walk today for 2 miles and was thinking I should exercise daily. Does the program require you not to exercise standing up? Is there an advantage? Is it supposed to be for all types of POTS patients?

Forevertired, Thanks for weighing in. You have the high HR like me. If you don't mind my asking what about your BP on standing off meds, or on tilt? ( Up, down, about the same ?) best,

Thanks, I believe I follow you. I appreciate your noting the categories. What do you think about Stewart's "regular flow" category that is supposed to have increased NO with increased splachnic pooling but not feet pooling. I ask specifically because I figure I am not category 2 above, as I can be standing and staring down at my blue or white ice cold toes, and I am never looking at pooling in my feet or toes. Also, I do not faint, and my BP does not drop on standing. But I could be "normal flow" type with splanchnic pooling.

Rissy2D, Thanks for all the info. on IST. It seems likely there is a connection, as it does not seem like chance you would have POTS and your sister would have IST but I am sure you realize tht much. Off B-blocker my HR is 90-105 just as yours Forevertired, and on tilt I was over 140 also. One notable thing is off meds my standing HR oscillates up and down every minute or so. It went as low as 80 and as high as 156 standing tilt. B-blockers are effective in many Hyperadrenergic POTS patients in Blair Grubbs paper on this type of POTS. My HR definately rises on standing, even on B-blockers so it sounds less likely I have IST. I do not intend to have any kind of ablation's at least for a long time from now anyways, so maybe I'll let the IST idea go. Thank you,

Hi, I was thinking this warm bath thing might help with sorting out the types of POTS, which, of course, is something I am trying to do. Rama, in answer to " POTLUCK - do you have prominent veins?" yes, but I noticed on the thread on veins the other day that people with both types replied yes. My BMI is 23, ( thin so veins stand out more) and I try to continue doing exercises such as my hand grips-3 sets, and PU-20 and crunches - 15 at least half the days. ( I try for daily, and off meds found I did them very little. They make me dizzy. Exercise seems to do that more with the start and stop than while doing it at a continuous pace. ) I was doing these exercises since years ago so that would increase vein size. " The big question is how does extreme vasoconstriction cause dizziness? low blood volume? effecting autoregulation ?" I am thinking it is vasoconstriction in the brain resulting in lack of oxygen to the brain in a "low flow" or hyperadrenergic scenario, and it is lack of blood being pumped up to the brain in a "regular flow" ( splanchnic or visceral dilation and blood pooling there ) or a "high flow" ( blood pooling to lower extremities ) so in the last 2 scenarios the heart is pumping faster to try and push the blood to the brain as it falls down, and in the first scenario ("low flow" "hyperadrenergic") the constricted vessels are never letting enough blood to the brain and the HR is increased even lying down to try and push enough blood in to the brain, yet the pipe into the brain is too small so not enough is going through. Then, when the hyperadrenergic person stands the HR has to go even faster to push the blood through this narrow pipe into the brain against the force of gravity. The low volume just seems like it would go with the fact that all the vessels are squeezed more tight so the volume is forced out at the kidney. The low valume might not be the cause of the problem just a result of the narrow pipes (blood vessels) Now, this does not take into account how these actual mechanisms ( receptors that tell the body how much oxygen it needs, how much urine to secrete etc. ) work, as I certainly do not understand it all.

sugartwin, Did you have CoQ tested?

I should note that, as a possible side effect it does not mean it is the cause. I was on Propranolol at high doses 20 years without depression.