cberau

I've had lots of torridol injections lately. Benadryl doesn't do anything for me.

I'm starting to think about disability. It's so surreal to be thinking about disability when you had just become qualified to be an airline pilot of all things. Grrrr.

I had never had any reaction to contrast, until I got injected with I-123 MIBG, the reaction only lasted two minutes, but it was the worst. Lab tech said I was just anxious about the needle, I just wanted to tell him "******* you have no idea how many needles I've had in me, I have zero anxiety about needles". It felt like fire going up my arm, sent me into the most severe hot flash I've ever had then I dry heaved for about two minutes, got drenched in sweat, and then I was fine. But gadolinium, and all those other radioactive dyes never did anything to me.

1.6 at 6:48am, however I feel it could have been thrown off. I was awake for over 40 hours due to my ever present insomnia, and I had just drove 2 hours from Prescott, AZ to Scottsdale. In may, my cortisol was 13.8 at 10am, both times were blood, never had a saliva test, and both tests were done at Mayo Scottsdale.

I'm expecting to hear from Dr. Goodman today or tomorrow hopefully. I wonder what he will say about both that and the cortisol thing.

I wonder how much of a pressure increase there is. Normal sea level pressure is 14.7psi, up where I live in the mountains it's somewhere around 12.5psi at about 6000 feet. I unfortunately don't notice any improvement of symptoms going to a lower altitude, but the increase in my heart rate while standing is slightly less when I go down to Phoenix which is about 1500 feet above sea level. Being acclimated to high altitude, I don't feel any ill effects from going on airliners travelling, as their cabin altitude while at 35,000 feet is usually about 6800 feet.

10.3, reference range ended at 10.1

I've definitely got that fragmented sleep garbage, even if I get to sleep. I use a withings pulse, and the sleep cycle alarm app on my iphone that uses the accelerometer in the iphone to measure sleep cycles and quality, and the highest percent sleep quality i can reach is 23%. Several doctors have told me they suspected I am never reaching REM sleep, also a psychologist that I got sent to because after hearing my symptoms a doctor thought I was nuts, psychologist didn't though.

It really needs to be called a disease...as the etymology of the word disease is... dis-ease, as in a dysfunction of ease of living.

If you are referring to the "w:255 l:128" at the bottom in white text, it is the image size, 255x128 mm(?) at .89x magnification. In most dicom programs you can turn that image info overlay on/off. It is part of the image metadata. The tech/dr who interpreted the test results should have noted in the report what that measurement was. Oh, yeah I'm not sure. All the report said was small incentaloma. No size. However talking to the radiologist he told me the size of it, and it was at least over 1cm by 1cm, if only slightly.

I've tried basically every med mentioned here, but the only thing that was worked for me, and you really have to have actual migraines for doctors to prescribe this in my experience, but the only thing is Zomig. My doctor won't allow me on it anymore because of my paroxysmal hypertension.

And Kris, yeah I will let you know. 5-HIAA for me was normal, I've never had a problem with glucose that I've seen. Been tested rather regularly for that. My cortisol in May was normal, I'm thinking it could be a fluke result because I was so exhausted when I got the test done, hadn't slept that night before. I have only had cortisol pulled via blood twice, no saliva test.

Just want to point out that the "w:255 l:128" is usually the whole image size, not sure if that is the size of the markers Those numbers are only marked on the images on the CD that have the red hash marks pointing out the spot, I guess that's what I thought it was. On my computer screen, that whole image is certainly larger than 255pixels by 128 pixels, not expanded or pixellated.

Dr. Barboi in Chicago highly suspects I have MCAS. I think I could, I'm not sure. I have had two plasma tryptase blood tests, one at 3.4 ion 5/21, most recent on 9/11 last week at 3.1. I'm not sure it's an easy one to find. I definitely get the extreme itchiness all over in the shower after about 2 minutes, then after scratching every single place on my body it goes away enough to shower myself.

You know upon further looking at the image, the size seems to be on there, it's just not obvious...from what I can surmise it is 2.55cm by 1.28cm

it might have been 5mmx5mm, I'm not terribly concerned about it, as my symptoms are much closer to hyper-pots than a pheo. My urine volumes are ALWAYS above 2.9liters, usually 3.5-4 liters. I do drink quite a bit of water because I am always so thirsty, dry mouth, dry eyes (which I know is an indicator of Sjoegren's, but I'm doubtful that's what it is). Creatinine levels, and other kidney tests have been done, such as albumen because I usually have frothy urine, however the doctors summed it up to the type of water here, no kidney problems found. I only only only drink water, I avoid caffeine a lot, but if I have caffeine, it causes no discernible difference in volume, nor do I really have any bad side effects from it in normal doses. Generally, I have nothing that is a diuretic in my system. Edit, however, the spot was clearly visible, and I could relate it in size to a vertebra as it was basically touching my spine, and it looked much bigger than 5mmx5mm (I grew up metric lol). Here's a link to the photo of it "https://www.dropbox.com/s/kcqy4sauhk68vmt/MIBG.png"

Unfortunately I haven't had too much luck on them. No negative side effects from propranolol, however I wasn't on it long enough and Dr. Goodman instructed me to stop all meds possible in order to complete the autonomic and blood testing. I'm just awaiting his word, hopefully monday, then maybe he will have me start on Propranolol again, or whatever. Good to hear you have some improvement on a BB.

Common for me. I used to be a varsity swimmer in high school until I started getting the really bad migraines and nausea associated with my hyper-pots. Now I can't do any sort of physical activity without having some sort of adverse reaction to it, with a really long recovery period. Sometimes I break out in hives and get dermatitis that persists for month from one period of enough physical activity to get sweaty. Other times I mostly end up vomiting with excruciating migraines, and excessive urination...upwards of 4.5 liters per day (found that out on multiple attempts on some 24hr urine labs, had to throw them out and try again with 3 jugs on hand, so annoying.) But yeah my sleep and stamina are totally the opposite of what I'd like them to be, and show no trend of improving.

I'm hyper-pots as well, and my sleep is only getting worse with time. it's never been good. Palpitations, tremors, hot flashes, sweating, itching, nausea, shortness of breath, dizziness all keep me from getting to sleep. If I do actually get into a real sleep, I sleep completely uncontrolled and would sleep through getting hit by an atom bomb, usually for 24-30 hours straight after 3 days of no sleep, then upon waking I am completely exhausted and can't move for literally at least 12 hours, and start the whole cycle again.

This stuff parallels my story so closely, especially you Kris. I am still very confused right now about my situation. I am waiting on word back about my latest testing battery at Mayo AZ with Dr. Goodman. My story started (after feeling really crappy since about 2002 but not complaining about it) about 1 year ago at my PCP office, she checked my BP and it was through the roof. She started asking me a bunch of questions (because she knows my BP is usually normal/low) and after about an hour with her, her expression started looking very concerned, she said she thought I could have a pheo, but it's very rare, and she had never personally seen one. So we do the plasma metanephrines and 24 hour catecholamines...negative. Still, she is very concerned, because my BP would fluctuate without provocation rapidly between 80/45 to 220/120, and she said I was a walking stroke. She somehow talked my insurance into paying for a I-123 MIBG at Yavapai Regional Medical Center in Prescott Valley, AZ before we got the catecholamines results back. I also got a CgA, which was falsely elevated because of being on Prilosec, when accounting for the average increase on prilosec, my number was dead normal. Anyway, I knew it would be negative, but I did it anyway, despite the radiation exposure, although the I-123 is nowhere near as bad as I-131. A few days later I called YRMC to see what the results were, and I said I'm sure they're negative anyway, but I wanted to get results to take to Mayo because I had an appointment with an endo, Dr. Cook. My PCP has been such an advocate because she knows me so well, she knows I'm not malingering or making any of my problems up. Well, the lady at YRMC told me that I shouldn't be so sure the result of the MIBG was negative, and that the final report isn't signed off but I was welcome to come and pick up the CD images and see for myself. So I get the CD home, and sure enough there is a bright spot on my right adrenal gland about 5cmx5cm marked out on about 40 different images. Later that day, I get a call from the radiologist, who said he had 3 more opinions on the image because it was borderline conclusive, but given the lab results, he thinks it's just an incedentaloma. However, he said in general, my MIBG scan was very "sparkly" and he had never seen anything like it before, and agreed with the fact of me going to an endo at Mayo because he thinks something odd is definitely going on in my body. Next day, I have an MRI at Prescott Medical Imaging, with and without contrast, they see nothing. Go to Dr. Cook, an endo at Mayo on May 21st, he says he doesn't think I have a pheo, but he did think I had POTS of some sort, he said he didn't expect to find anything on his specialized endocrine labs, and he didn't, all were normal. He referred me to Dr. Goodman. Dr. Cook ordered a 5-HIAA 24hr urine, but I never did it because I was too lazy, I ******* hate 24hr urine tests. Driving back up the hill to Prescott from Phoenix, I get a call from Mayo saying the next available appointment with Dr. Goodman was August 29th, which was just way too far away for me, so I requested an appointment with Dr. Barboi at Rush University Medical Center back home in Chicago, he called me personally that day and gave me an appointment on June 6th. So I fly back, unexpectedly to me he did all the autonomic tests (but no blood, urine, or standing catecholamines test, it was just technically a consultation). Dr. Barboi was a great doctor, best I've had so far, nicest guy ever, and you can tell he's incredibly smart. Anyway, during the TTT, he was feeling my hands, looking at the color of my hands etc, and said I was profoundly hyper pots, and he would definitely try treating me further if/when I move back to Chicago (which could be soon). August 29th was my consult with Dr. Goodman, I told him everything, but I couldn't tell if he either didn't believe me or what, he was hard to read, but he was taking a lot of notes. He ordered up autonomic reflex testing, standing catecholamines, a few other labs, 24 hour holter, ECG for Sep 11th and 12th. Some of the results are coming online now and holter indicated POTS as suspected, morning cortisol was very low, which I wasn't expecting, sitting norepinephrine was 475, standing 1690. Calcium was slightly high, sodium is normal I guess, although I'll wait for his word, urine volume was high, chloride low, lactate low. I expect in a few days I'll have more to report, but judging by my 1690 standing norepinephrine I've got a rather nasty case of hyper-pots. Like you, Kris, I was also hoping for a pheo. I am totally out of energy for living with this syndrome/disease, and with the dx of hyper-pots there really isn't any reason to be optimistic for me, as I have tried all the most common meds, clonidine, beta blockers, SNRI, tetracyclic (mirtazapine), midodrine, allegra, prevacid, lisinopril and more. Bad side effects from most, no net improvement from any. The only med that has worked on keeping my BP under control was 6 times the max recommended daily dose of lisinopril, but it didn't improve any of my somatic symptoms, just kept my PCP more at ease. Sorry for the super long post, but I don't know how to make my crazy story any shorter.

Ugh shingles is the worst, I'm feeling for you. I had it a couple months before I got dx'd with POTS earlier this year. Only thing I was prescribed for it was acyclovir, no pain meds.

Mine is in the high 30's to mid 40's with a pulse pressure of between 60-80, and then standing goes to 130-180 with a pulse pressure between 30-10.

Male, 6'7", 215 lbs, but I'm on a constant ebbe and flow between 190 and 230 lbs.

I haven't really dreamed much at all,or at least remembered any of my dreams since pots came into my life.

I just ordered some from an online pharmacy in Vanuatu, Jannsen brand, and expiration date in 2016. It seemed very legit, very good reviews online, and no prescription needed. I won't post the link, you should be able to find it. It was pretty cheap, they also had two other generic options. I remember being prescribed this stuff in New Zealand and it was the only stuff that worked for my nausea, nothing I've had since I moved to America worked. In NZ you need a Rx for it. Very happy this thread reminded me of the medication, ill be expecting it to be delivered in about a week.