firewatcher

I think it depends on the doc that diagnoses you. An endocrinologist originally found my problem with a "poor man's tilt test," and he often sees that with endocrine disorders. So I got the endocrine workup. When that bloodwork came in wonky, we moved on to the next specialist who should know why and so on. It also depends on the symptoms you're having. After getting a "final" diagnosis at Vanderbilt (I never got a TTT there either, just another "Poor-man's tilt") most of the testing stopped and everything got dumped into the POTS bucket. I take dDAVP, which requires regular blood testing to make sure that electrolytes are balanced, but other than that I don't see any doc regularly now except my endo. Because my symptoms were so classic for a pituitary tumor, I got a lot of tests.

Some of us are just looking for the cause/root of the "S" (syndrome) in POTS.

Yes, he made a schedule. Once I got to a certain point, I could not make further progress back and it was still not where I needed to be. That's when we tried "more drastic measures." Keeping to the schedule is incredibly hard and over 90% of DSPD patients relapse to their old schedule within one year of shift. The studies I've been reading show that you don't actually shift the circadian clock, instead it creates an artificial "override," and one weekend of sleeping in will negate 8 weeks of shift.

MSG

Erik!!!!

I know, now if I see a new doc, they'll think I'm a hypochondriac that watches House too much. I wish they could've at least gotten it right.

I have these problems too, with Delayed Sleep Phase Disorder. Nothing really shifts my sleep pattern which is why I am still awake now having been awake all night. Melatonin and sleeping drugs just make no difference however and whenever I take them. Sometimes a combination will work but have to be careful with that. Mostly I think it is a case of just accepting it; I've tried everything over a number of years with no long term success. What sleep I do have is not refreshing either, although sometimes if I have around 18 hours I get a good patch following for a few hours. As a way of life, it is not much fun !

I feel your pain. I've been this way forever. I have always felt better at night, even with exercise tolerance (I can almost jog at 11pm!) I am, so far, one of the unshiftable ones too. I have found that controlling the sympathetic overdrive with Klonopin and Inderal helps with the sleep onset, just nothing helps with the next morning! If I can sleep till 10-11AM, I'm actually pretty good energy wise, but getting up now (6:30) for the kids physically hurts! I am tachy, shaky and winded. One of the really nasty things about DPSD is that we don't recover from sleep deprivation like "normals," who fall asleep quicker after being deprived of sleep. Another nasty part is that our whole metabolism is based on our internal clock: lunch is really breakfast and the first time I am hungry at all during the day. I'm going to try to shift again this summer, but I have real doubts, if not fears! I think that messing with your circadian clock directly messes with your ANS, at least it did with me the last time.

Am J Hypertens. 2010 Apr 22. [Epub ahead of print]

Disorders of Orthostatic Blood Pressure Response Are Associated With Cardiovascular Disease and Target Organ Damage in Hypertensive Patients.

Fan XH, Wang Y, Sun K, Zhang W, Wang H, Wu H, Zhang H, Zhou X, Hui R.

Hypertension Division, Department of Cardiology, Cardiovascular Institute and FuWai Hospital, Chinese Academy of Medical Sciences and Peking Union Medical College, Beijing, China.

Abstract

BackgroundThe prevalence and clinical significance of orthostatic hypertension (OHT) remain largely undetermined in hypertensive patients. This study investigated the association of OHT and orthostatic hypotension (OH) with cardiovascular disease (CVD) and target organ damage (TOD) in hypertensive patients.MethodsA cross-sectional study was conducted in 4,711 hypertensives and 826 normotensives, aged 40-75 years. OHT was defined as an increase in systolic blood pressure (SBP) of >/=20 mm Hg, and OH was defined as either a reduction in SBP of at least 20 mm Hg or a reduction in diastolic BP (DBP) of at least 10 mm Hg during the first 3 min after standing.ResultsHypertension was only independently associated with a risk of OHT. After controlling for age, sex, and other confounders, OH was associated with peripheral artery disease (PAD) (odds ratio (OR) 1.49, 95% confidence interval (CI) 1.15-1.89, P < 0.01), left ventricular hypertrophy (LVH) (OR 1.48, 95% CI 1.12-1.93, P < 0.001), coronary artery disease (CAD) (OR 1.71, 95% CI 1.12-2.61, P < 0.01), and stroke (OR 1.72, 95% CI 1.19-2.34, P < 0.01), but OHT was only associated with PAD (OR 1.36, 95% CI 1.05-1.81, P < 0.05) and stroke (OR 1.76, 95% CI 1.27-2.26, P < 0.01). The adjusted OR for PAD, predicted by the quintiles of the orthostatic SBP changes, showed a J-shaped relationship in untreated hypertensive patients, as was also the case for LVH in hypertensive women.ConclusionsOH is associated with CV risk; the associations of OHT with TOD and stroke in hypertensive patients still need to be confirmed in prospective studies.American Journal of Hypertension 2010; doi:10.1038/ajh.2010.76.

PMID: 20414196

I'm not really sure this applies to us. I'm betting that 90+% of their participants had intact vagal responses. I think that the concern is a sudden BP spike in weakened or hardened arteries from long-term hypertension either blowing out or releasing plaque from the arterial walls and causing the stroke. Granted, we have W-I-D-E swings in our BP, but most of POTS patients aren't hypertensive to begin with. Some of us are though. Migraine increases our chance of stroke just as much. Who knows if they even checked for autonomic responses in their study group....

Hmmm:

Clin Auton Res. 2010 May 1. [Epub ahead of print]

Does an acute inflammatory response temporarily attenuate parasympathetic reactivation?

Jae SY, Heffernan KS, Park SH, Jung SH, Yoon ES, Kim EJ, Ahn ES, Fernhall B.

Department of Sports Informatics, The Health and Integrative Physiology Laboratory, University of Seoul, 90 Jeonnong-dong, Dongdaemun-gu, Seoul, 130-743, South Korea, syjae@uos.ac.kr.

Abstract

PURPOSE: Although observational studies suggest that inflammatory markers are associated with autonomic nervous system function, the causal relationship of this is not clear. We tested the hypothesis that acute inflammation will temporarily attenuate vagal reactivation as measured by heart rate recovery after exercise. METHODS: In this double-blind randomized study, 24 healthy subjects were assigned to receive either an influenza vaccine (n = 15) as a model to generate a systemic inflammatory response or a sham vaccine (n = 9). Heart rate recovery after exercise testing was used as an index of parasympathetic nervous function and was calculated as the difference between maximal heart rate during the test and heart rate 1 and 2 min after cessation of exercise. Both blood analysis and treadmill exercise stress tests were conducted before and 48 h after each vaccination. RESULTS: Inflammatory marker, log C-reactive protein (1.9 +/- 1.2 to 2.8 +/- 1.4, p < 0.05) was significantly increased after the influenza vaccine. Heart rate recovery 1 was significantly attenuated 48 h after the influenza vaccination (23.4 +/- 6.4 to 20.5 +/- 4.9, p < 0.05) but not sham vaccination. CONCLUSIONS: These findings show that acute inflammation is associated with a temporary deterioration in cardiac autonomic nervous system function in healthy subjects.

PMID: 20437076

May have implications in both the pathology and continuation of our symptoms...

I tried a light box. I'm going to try it again this summer. The problem with light and circadian rhythm is that TIMING is key. If you are off by one hour, you will either make things better or much, much worse. Light therapy is based on circadian nadir (the lowest body temperature point and metabolic activity for your body.) The greatest shifts in sleep timing/circadian timing occur when light is timed either during the hour before (delaying phase) or the hour after (advancing phase) your nadir. We totally screwed up the timing of my light therapy the first time and made everything horribly worse.

Timing for melatonin is also key. If you hit dim light melatonin onset, then a tiny dose will advance your circadian rhythm and make you sleepy at the right time. Again, one hour either side and it won't have the same effect. I cut a 3mg tablet with a pill cutter, slightly more or less at that dose is less critical than timing.

I was undiagnosed at the time of my sleep "therapy," so the intense ANS reaction came completely out of the blue and shocked the doctor. The attempt to reset my clock was what precipitated my biggest POTS crash ever, so be careful. I am very nervous about this next attempt and may chicken out.

I dislike being the odd one out but I drank diet Pepsi in the black can (Pepsi infusion?) and it had Taurine in it and I got terribly sick drinking it. I don't touch Taurine and am sure I don't need any in my system.

Tearose,

I didn't take it with caffeine. It was by itself. So far it seems to work. I am more sore today than I was yesterday. I will try it on Monday again and see. It may be placebo effect.

Firewatcher,

You mention the melatonin but what else did you ultimately settle into to help you sleep. Sleep is a huge problem for my son as well. He took melatonin for some time; it was semi-helpful but he had to take it at higher and higher doses for it to help. We finally gave up as then he began to sleep too much during the daytime, and that seemed to directly relate to the high dose of melatonin he was taking. When he came off of it, the daytime sleeping issues resolved. Just curious what you are taking besides the melatonin.

PotsMom,

Since I take a BB, it depletes the natural melatonin in my system. Timing is extremely important, you have to take it around 7-8 PM for it to work properly (dim-light melatonin onset.) If you take it later, it will push your natural sleeping schedule later and later till you want to sleep in the day. Also, he needs to take a small dose of melatonin (1.5mg) which is more natural, not a high dose. The morning beta blocker and evening melatonin works for me, but I am still extremely tired since it didn't shift my circadian rhythm into a normal realm. It is all very complicated and my sleep doc set the schedule according to my body's clock. I still have issues. I don't have a fix.

Perhaps "very pleasant" is medical code for "pain in the @$$!" Like "in no acute distress" is code for "I know there is something wrong, but I just can't figure it out!"

Ever curious, I consumed a Vitamin water (dragonberry has 25mg Taurine) 30 minutes before my workout. I usually drink gatorade. I did notice less shaking during the workout and I was almost able to finish a whole session of Pilates with "normal" people. Immediately after, I took 500 mg in capsule form. I was tired, but not like I have been. So far, I have not been debilitatingly sore like I normally am after my workouts. I've only taken it once, and intend to try it again before my next workout and see if it still works.

I would say, based on my one experience so far, that it works, but the experiment goes on.........

Just curious. I have an Internal Med doc, Endo, and Neuro. Endo is the lead, but the Internal Medicine doc is my primary. It is quite a circus.

Mine always start with "pleasant, well-nourished 3* year old woman..." It kinda makes me wonder what they say when you aren't pleasant, sometimes I'm not! Do they mention that you're a witch? :)

One has me as having diabetes melitus and being well controlled on insulin (NEVER had that!), and my thyroid has been described in as many different ways as I have docs! I think that malpractice threats have taken the honesty from the medical communities, just not the mistakes.

Nikki,

My husband is a commercial pilot. He has gone to Paris, London, St. Lucia, Puerto Rico, etc. and has asked me to go with him....just for two or three days. My parents have offered to keep the kids. But, I JUST CAN'T. I don't travel well, I don't sleep well away from home and half the time, I don't feel well. I'd love to be able to pick up and go with him, but after ten years, I still haven't been able to go. He is taking his parents to Hawaii in two weeks, I could go too, IF I COULD. He understands. He feels badly about it. But our marriage is strong and it can work. Understanding is key. Good luck!

bloodwork in two weeks and appts in the first week of June.

I did some more looking and i suspect thyroid. My neck has been feeling stiff in the front for about a month. I think I see a bulge, but it is probably my imagination.

I'll call my cardio for the event monitor my GP wants after looking at my BP printout if you'll call yours for this new bradycardia of yours. You really don't know if you have a potassium imbalance, electrolyte issues or whatever else it could be. We all know how much we don't want to go to doctors but they are the only ones who can order tests that can unearth problems. Possibly they will say just reduce the bb and you'll feel better - that wouldn't be so bad.

You never know what blood tests might reveal

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2694776/

AAAAAAAAAAaaaaaaahhhhhhhhhh! I wish I hadn't clicked on THAT link! Dang! Reen, you're getting as bad as me with those PubMed searches! OK! I'll go tomorrow.

bloodwork in two weeks and appts in the first week of June.

I did some more looking and i suspect thyroid. My neck has been feeling stiff in the front for about a month. I think I see a bulge, but it is probably my imagination.

With norepinephrine that high, no wonder you don't sleep!

I agree with the pheo idea:

reversal heart failure in pheo

Spinal block?

Yeah, it is a new pain, a new HR and new BP for sitting. I don't usually see sparkles when I'm sitting down. My normal resting HR is in the 80s, medicated in the 60s, the 40s is new. On the BB, my resting BP is usually 90-something over 50-something, not 130+/90+. I have been unusually thirsty lately and losing a lot of water weight everyday (2-7 lbs in 24 hours.) I intend to bring it up to my GP, the response I got was from a quick email to Vandy. I did have this type of pain and forceful heartbeat when I was more tachy, usually above 170bpm, right before I'd start blacking out and dry-heaving. I intend to keep an eye (and HR monitor) on it. I really don't want anymore testing or anything new.

Apparently it is quite common and nothing to be concerned about.

Thanks for admitting this ladies! I've had several fears, from brain tumors to rapid kidney failure, so many in my road to diagnosis that I'm all feared out. I take all the doom and gloom and look at it a bit cynically now, but cautiously research for confirmation. I do believe that depending on the root cause, dysautonomia can be ultimately fatal. Heck, life is ultimately fatal! Changes brought about by cerebral hypoperfusion, hypoxia, brain chemistry and body organs due to sympathetic overdrive are all possibilities. Way on down the road I hope, I fear that I am looking at a severely reduced quality of life in a wheelchair due to the drugs no longer working, or that final "unknown other" diagnosis being a major organ or gland just quitting. But for now, I can't spend the energy worrying about it. I can only treat what is going on now and try to live what life I have to the fullest, just like every other person on the planet.

This being said, by what mechanisms could POTS be fatal, other than passing out and smacking your head, or fainting in a pool?

Alright, I know this is a morbid topic, but we've all thought it at one point or another. Given the abnormalities and misunderstandings of POTS, and knowing that our final outcome will always be death (by car accident, drowning, head trauma, lightning strike or some yet unstudied medical complications) what are the logical, practical, feared results of our "syndrome?"

Obviously, POTS can be the presenting symptom of Shy-Drager or Multiple System Atrophy where there is a slow decline in autonomic functioning. Heart failure has been mentioned in another thread. Kidney failure or pituitary death float around in my crystal ball of symptoms.

For those of us who have been life-long dysautonomiacs, or have had it 20 years or longer, what complications have you encountered? Are there any common threads of progression?

On the flip side, for those of us who have been life-long dysautonomiacs or had it 20 years or longer, has there been improvement? Any rays of hope out there? I suspect that my mother and grandmother have some degree of dysautonomia (migraines, fainting, exercise intolerance and BP fluctuations) and my Grandma just celebrated her 84th birthday and is going strong. I know one member went from bedbound to ballroom dancing!

"So it seems the damage is done and I just wish there was way to reverse the process."

We all wish the same thing! Sorry it didn't work for you. There was some discussion a while back about the purity and strain of canabis and its effectiveness, you might do a search for it. I hope you find something that works!