toddm1960

I had the 5 hour test last month and the hospital where I had it done wouldn't let me leave the lab waiting room.......FOR 5 HOURS......those chairs are tough for 5 hours. I had to be within their eye sight the whole time, I had a babysitter. They have to watch you so if you do passout in a hypoglycemic coma ( that they caused you to have ) it could be problems.....lol The hospital schedules these tests and makes sure they have enough staff when one is going on. Of course for me, I felt fine that day, I never feel fine after having such a sugary drink......but oh well such is dysautonomia. I have tested in the 50's and 60's on my own, just not during this test. Good luck with it, bring some good things to read or tunes to listen to........

Nice change Julie.........and I changed my vote

One thing that could throw off your results is the amount of time it took to get a diagnosis.

I just don't like where the study was done.....Department of Psychosomatic Medicine.

I get these when I'm over tired, it makes me nauseous and my vision real jerky. It's like looking through a camera that's jumping around.

I tried both Adderall and Ridalin, both gave the the interanl termers and shakes. Made me feel very weak and shivery, didn't increase my energy level at all.

1) Getting my dysautonomia and mitochondrial diagnosis. 2) Learning my energy envolope. 3) Aceppting what I have, enjoying what I can do, and not what I might be missing.

Is this also called a metabolic stress test? Where they put a mouth piece in and block your nose, then do an echo at the end? If that's the case it gives good inforamtion on your pulmonary function, and is part of most mitochondrial work ups. If it's something different could you explain the test and what it's for.

The range of exercise ability among our little forum runs from people that can run half marathons and being able to lift weights every other day. To some that can't walk to the bathroom. Those people that can't exercise should not be told all you need to do is try harder, and on the other side those that can exercise should not be told to stop because it may hurt them. We all need to find our little nitch and go from there.

Hi Heather, I'm sorry you're having such a hard time. You'll find a large group of us on here that, like you had been hard core exercisers but today can't seem to put 2 workouts into a week. I like you feel just awful for 2 or 3 days after. I'm a personal trainer so I know how to workout and how to start ultra slow, but after 6 years I'm still at square one. I still can't progress or build on a previous workout. I wont give up but you have to wonder at what point are you doing more harm than good. I hope you start to feel better and get back to your old workouts.

Take a deep breath, exhale.....ahhhhhhh......now FIRE HIM and move on to someone that has a clue about dysautonomia. BP has NOTHING to due with POTS, it's sad to see the lack of knowledge and misinformation out there. I really like the new definition it's added "in "absance of orthostatic hypotension" Here's a clip from the 2011 Consensus Statement: 4. Postural tachycardia syndrome 4.1. Definition The postural tachycardia syndrome (POTS) is characterized by a sustained heart rate increment of ≥ 30 beats/min within 10 min of standing or head-up tilt in the absence of orthostatic hypotension. Does our definition on DINET reflect this new addition?

There are somedays when I wake up with that bone crushing exhaustion (that's a medical term ) and I have it all day or sometime multiple days. It's by far my worse symptom and just small amounts of activity bring it on, and all I can do is lay down.

I can look back now and see I had symptoms when I was a teenager, but it was in 1987 that i got mono and it hit me like a ton of bricks. My life has never been the same since.

Before I was first diagnosed I also had a very low HR, always in the 30's or low 40's. I was a personal trainer and worked out like a house and just told I had a runners heart.....no need to worry. Now in the past 5 years my resting HR has increased steadly to the mid 60's. One more thing, DRINK,DRINK,DRINK

Sue I'm with you, my tummy grows while I stand and is tight as a drum. I look pregnant no gurgling here either. With slow motility grugling is a good thing

I'd love to be in this study also, just last week I had an MRI to check for lesions. My brain fog has gotten progressively worse. One point I want to bring up did you look at Vandy's criteria for POTS: Postural Tachycardia Syndrome (POTS) is a disorder that affects an estimated 500,000 people in the United States alone and is an important source of disability in young adults. It shows a strong predilection for females. POTS is a form of orthostatic intolerance characterized by an excessive increase in heart rate (>30 bpm) on assuming the upright position associated with orthostatic symptoms, but in the absence of orthostatic hypotension. Also under the exclusions: exclusion criteria •Previously diagnosed with Axis I psychiatric disorder •Previously diagnosed learning disorder •Previously diagnosed attention deficit hyperactivity disorder (ADHD) •Prior psychosis •past or present substance abuse •History of loss of consciousness •History of seizures Is Vandy now pushing orthostatic hypotension and loss of consciousness into NMC or NCS? Or do they only want pure POTS patients for this study? It's very nice to see someone separate the two

All we can ask is that they're willing to learn right along with us, ask him if emailing information to him gives him more time to investigate things. After 6 years I have found a neuro and geneticist just like this, willing to listen and work with me. Good luck on your search for zebras

Mitochondrial disease is an MDA disorder, MDA clinics will see other patients with mito problems and are much better at assessing and running the proper tests. UMDF.org, mitoaction.org and MDA.org are all great informational sites, check them all. For finding docotors close to all of us MDA clinics are the easiest way to go. Good luck I hope you find some answers.

My doctors appointments are exactly like that, I bring a list and go over everything. I even email studies and other things I find in between appts. If your doctor is overwhelmed or thinks you're nuts, fire him or her and move onto someone that will work with you. The biggest part of our treatment is finding a team of doctors that are willing to work and learn with you. Good luck with everything, let us know how you do.

Tennille that's exactly how I feel, and I've stopped using the F word. What I feel is exhaustion, everytime a doctor says the F word, I say no.... it's exhaustion. The best place to start checking for mitochondrial testing is on MDA.org find the closest MDA Clinic to you. Get and appt with one of the doctors listed there, they will either be a neuro or a geneticist. They can start the proper testing, becuase there are blood and other tests that need to be run before looking into a muscle biopsy. But the bottom line remains if you have a breakdown in any of the 4 complexes of your Electron Transport Chain only a fresh tissue muscle biopsy will find this. As for my treatment helping.....well it hasn't made me feel much different, but most times the best treatment avilible today only slows the progression. Again this is just my case, I hope it helps.

I have all of this also, but in my case I'd say it's a mitochondrial root cause.

You have to do alittle digging on this guy, he started recruiting patients for his study(s) back in 2005. His last two published results have cohorts of 28 and 18 patients, after thousands and thousands of people trying his program he can report on only 46. Also to join his little party you have to sign away your first born and swear to never speak of the details or negative results you may have. This guy is also very involved with NASA and looking at how a weightless environment can cause POTS, this form of POTS also happens to people bed bound for long periods after bad accidents or illnesses. What he's doing is looking for this very specific form of POTS caused by deconditioning, and curing it by bringing these people back to a normal status with mild exercise. Now look at his small heart therory, our heart is just a muscle if you don't use it for prolonged periods.....it shrinks!! OMG Where he goes off the tracks is he's trying to push this as a total cureall for all POTS patients. Look at the wording difference from his first study and now this one. The first conclusion said ALL patients have small hearts, ALL POTS is caused by deconditioning, ALL POTS can be cured with exercise....ALL....ALL.....ALL. This time he has toned his verbage a bit, he uses most have small hearts, some can be cured. This guy is not researching the type of POTS we have, but he's trying to push his narrow selection of patients and his crazy form of exercise as a cure for all of us. The real problem is he's pushing this out to other doctors who have little knowledge of POTS as the first line of treatment. No drugs....just exercise, if they don't get better they're not trying hard enough. Pushing the blame on patients. As others have said on this thread, exercise is just another treatment, it's not a cure, it doesn't replace drugs and actually can harm some of us. Dont waste your money or time on guys like this, give mild exercise a try....if it helps keep it up....if it makes you worse, stop. Sorry for the rant......ok I'm off my soapbox......

This guy is such a joke, but so you all understand he's calling each and everyone of us lazy. We're only sick because we're too weak to cure ourselves and exercise. I just heard Cinyloo Whoo rounding up the troups in Whooville, it could it ugly

It's ok to agrue with me I was talking about your direct question So, can my adrenaline problem not necessarily be due to my POTS? and I was telling you research has found this subgroup with the same types of symptoms and it is part of POTS. Could it be 100 other things, of course, but if one thing stood out in Stewarts low flow POTS research I'm sure they would have picked up on it. I'm just letting you know there are a whole group of POTS patients with these same symptoms.

Julian Stewart's low flow POTS group has increased adrenaline even supine, not that you couldn't have other things at work. But this still could be a POTS thing.