firewatcher

My medically uneducated best guess would be hormones. During the shift to "adult-hood" there are wildly fluctuating hormone levels that effect everything from hair growth to blood volume levels. I would also venture a guess that this is why women (whose hormone levels fluctuate) tend to have POTS more often. Did you have exercise intolerance as a younger child (age 6)?

Grrrrrr, The press is beginning to call this "chronic laziness" and "lazyitis!" The quotes they are getting from Dr. Joyner are not in the fulltext of the article, where he states: "The Shibata study offers hope for these patients and shows that carefully monitored and progressive exercise training in a supportive environment is a treatment option that should be tried first. If deconditioning were a more mainstream medical diagnosis, perhaps the awareness of the average physician treating the average patient would increase and more formal therapeutic rehab programmes that include cognitive and behavioural therapy would emerge. In cases like POTS ‘secondary' deconditioning could be diagnosed and treated. For many other types of patients, like those with obesity and type II diabetes, the diagnosis might be ‘primary' deconditioning." NOT the now, oft quoted:"There's no need to join a gym or get a personal trainer: build as much activity as possible into daily life. Even walking just 10 minutes three times a day can go a long way toward working up to the 150 minutes a week of moderate physical activity the typical adult needs, Dr. Joyner says." Brethor9--Diabetes used to be considered a mental disorder too.

Get ready, here it comes again: http://www.sciencedaily.com/releases/2012/08/120813155143.htm Dr. Joyner (Mayo) is saying that POTS should have exercise as the first-line treatment...

"Some drugs may increase bicarbonate levels including: fludrocortisone, barbiturates, bicarbonates, hydrocortisone, loop diuretics, and steroids."--LabTestsOnline.org Also, if the tech that took your blood makes the band too tight or is too aggressive in the blood draw it will cause the blood cells to rupture, leaking potassium and causing pseudohyperkalemia (false high serum potassium.) My doc told me that elevated CO2 is often seen in dehydration/hypovolemia, especially if it was a fasting blood draw. He did a very gentle draw and sent it off and it came back "normal." My endo has a really rough nurse and I get elevated potassium every time it is drawn. If you truly have elevated potassium, the sodium should be low (they control one another.)

Katy, Kosher foods have been a lifesaver (quite literally) for me and my son. To be Kosher, you cannot mix milk with meat, so I look for the Kosher symbols (Pareve, (U) or a K in a star, etc.) on most of my son's pre-made foods to know if they are safe. Chinese and Japanese will be good too. They usually have no dairy and very little wheat. The gluten issue will be a pain though. She'll end up shopping on the outside of the grocery store: meat and veggie isles and very little or nothing pre-made. I have tons of recipes for dairy-free, but gluten is not our issue, so that won't help. Has she tried to go completely sugar free for a while? It is really hard, but may break the yeast infection cycle. Depending on where she is in Florida, she may have some really good Kosher options. Publix usually has a pretty decent Kosher section...

Katie, Does your Grandmother cook for herself? Is she "intolerant" or worse? My son is anaphylactic to milk and all milk products and that one is really hard! Milk products are in just about everything. I have lots of recipes, but eating out is out for most foods... Why is she being restricted?

Checking the box on this one! I've always been super-sensitive to bright light. I definitely can NOT watch 3D anything or even flat screen tv's. Strobe lights and "disco" lights make me super dizzy and nauseous. Even riding past a row of trees at sunset will trigger it. I haven't found anything that helped other than very dark sunglasses or just closing my eyes (not good while driving!) On the plus side though, I can see shades of color that very few people ever see.

Regular old acupuncture is just fine in ramping up the sympathetic nervous system, trust me. Adding electricity? I don't know. Remember the study was done on "healthy" individuals, not one of us. I would get referrals for an acupuncturist and then make sure that the person doing the needling stays with you while you are hooked up. It is common practice for the practitioner to leave once the needles are inserted and you may not be able to call for help if you feel faint. I have had good results with acupuncture, but others here have not.

Here's another question for you: is it related to the amount of sleep (going to bed at 10pm and getting up at 8am) or the actual TIME when you get up (going to bed at 8pm and getting up at 6am) I am always nauseated when I get up before my body clock's "wake-up" time regardless of how much sleep I get. I simply cannot put any food in my stomach before 9-10 AM. If that is your case, it is likely a circadian timing thing.

Yeah, good luck with that. Georgia seems to be geographical black hole for POTS knowledgeable docs. I know of a cardiologist between Sandy Springs and Dunwoody at St. Joseph's Hospital, but he is not what you would find at Vanderbilt or U of AL, Birmingham. PM me if you want his name.

As far as the write-up is concerned, I've started that since it is getting expensive to go in and THEN have the doc tell you that he won't/doesn't feel qualified to treat me. They still bill insurance and I still have to pay the copay...even if they won't treat!

Good Grief! Finding a primary care doc is worse than finding a husband! At least there are match-making services and speed dating! First, I was "inherited" by my current doc when my previous, fabulous doc was picked up by Mayo. Now, both my cardiologist and nephrologist are leaving their practices to "pursue other goals." I can't keep paying co-pays for new patient appointments only to have these people tell me that they won't treat me! I started writing short letters to doctors and clipping them to the shortest scholarly article that Dr. Grubb has written on POTS and delivering them to potential docs offices. Now, I'm getting nice phone calls rejecting me too! This is AWFUL!!!!!!!!! Aaaaarrrrrrrrgh! What in the blue blazes do these people go to medical school for? To learn how to treat blisters!!!!!! Where have all the medical brains gone?!

J Am Coll Cardiol. 2012 Jul 24;60(4):315-20. Midregional pro-adrenomedullin as a predictor for therapeutic response to midodrine hydrochloride in children with postural orthostatic tachycardia syndrome. Zhang F, Li X, Ochs T, Chen L, Liao Y, Tang C, Jin H, Du J. Source Department of Pediatrics, Peking University First Hospital, Beijing, China. Abstract OBJECTIVES: This study was designed to explore the predictive value of the midregional fragment of pro-adrenomedullin (MR-proADM) in assessing the therapeutic efficacy of midodrine hydrochloride for children with postural orthostatic tachycardia syndrome (POTS). BACKGROUND: Midodrine hydrochloride is an important therapeutic option for children with POTS. However, there has not been any method to predict response to the drug. The MR-proADM is produced in equimolar amounts to adrenomedullin (ADM), and directly reflects levels of the rapidly degraded active peptide, ADM. METHODS: Fifty-seven children with POTS were designated as the POTS group. Twenty healthy children served as the control group. The children in the POTS group received midodrine hydrochloride treatment. The plasma concentration of MR-proADM was measured, using a sandwich immunoluminometric assay. A receiver-operating characteristic curve was used to explore the predictive value of MR-proADM. RESULTS: Plasma levels of MR-proADM were significantly higher in children with POTS (75.0 [62.5 to 96.0] pg/ml) than in the control group (58.5 [50.3 to 69.0] pg/ml). Plasma levels of MR-proADM in responders to midodrine hydrochloride was significantly higher than that of nonresponders (76.0 [66.0 to 91.0] pg/ml vs. 59.0 [54.0 to 65.5] pg/ml, p < 0.01]. A receiver-operating characteristic curve on the predictive value of MR-proADM showed that the area under the curve was 0.879 with a 95% confidence interval of 0.761 to 0.997. Using a cutoff value for MR-proADM of 61.5 pg/ml produced both high sensitivity (100%) and specificity (71.6%) in predicting the efficacy of midodrine hydrochloride therapy for treating POTS. CONCLUSIONS: MR-proADM can help guide midodrine hydrochloride therapy in the management of POTS in children. Copyright © 2012 American College of Cardiology Foundation. Published by Elsevier Inc. All rights reserved. PMID: 22813609 [PubMed - in process]

My exercise intolerance (cardiac) also began before I ever started daily antihistamines, but I have had one symptom that is new to the last several years: when I exercise, my muscles fatigue at an unnaturally fast pace. I am stronger than most, but have no "strength endurance" anymore, there is not a gradual decline of strength but a sudden inability to do any more. Then the post-exertion pain is more like an injury than soreness. My cardio suggested lack of O2 in the microvasculature due to either ANS dysfunction or beta blockade. This article may suggest another theory. Most of my problems are, in fact, in my quads...

https://www.jstage.jst.go.jp/article/bpb/35/1/35_1_91/_article Apparently histamine released by exercise (not by mast cells) protects against fatigue...at least in mice. I wonder how much of my post-exercise fatigue is due to my antihistamine?

Easy there, some docs report the incidence of pineal cysts is up to 40% of the entire population. Not everyone with a cyst has POTS. They can usually tell (and radiologists are generally better than the docs at reading these) by the margins, shape and size whether or not it would be a problem. I would be really cautious about having a doc dig around in my skull to remove these, as the doc will probably do more damage to your brain and surrounding glands than the cyst will. This is a good article:http://www.ajnr.org/content/28/9/1706.full BTW, I have a pineal cyst too...it showed up on all three MRI's, but it took the last radiologist to notice it. It also took four years for any doc to mention my abnormally poor kidney function....but that is another story.

Mayo Clin Proc. 2012 Jul 13. [Epub ahead of print] A Prospective, 1-Year Follow-up Study of Postural Tachycardia Syndrome. Kimpinski K, Figueroa JJ, Singer W, Sletten DM, Iodice V, Sandroni P, Fischer PR, Opfer-Gehrking TL, Gehrking JA, Low PA. Source Department of Clinical Neurological Sciences, University Hospital, University of Western Ontario, London, Ontario, Canada. Abstract OBJECTIVE: To prospectively evaluate patients who met standard criteria for postural tachycardia syndrome (POTS), at baseline and 1-year follow-up, using standard clinical and laboratory methods to assess autonomic function. METHODS: Fifty-eight patients met the study criteria (orthostatic symptoms and a heart rate increment of ≥30 beats/min on head-up tilt) and completed 12 months of follow-up. All patients were enrolled and completed the study from January 16, 2006, through April 15, 2009. Patients underwent standardized autonomic testing, including head-up tilt, clinical assessment, and validated questionnaires designed to determine the severity of autonomic symptoms. RESULTS: Patients were predominantly young females (n=49, 84%), with 20 patients (34%) reporting an antecedent viral infection before onset of symptoms. More than one-third (37%) no longer fulfilled tilt criteria for POTS on follow-up, although heart rate increment on head-up tilt did not differ significantly at 1 year (33.8±15.1 beats/min) compared with baseline (37.8±14.6 beats/min) for the entire cohort. Orthostatic symptoms improved in most patients. Autonomic dysfunction was mild as defined by a Composite Autonomic Severity Score of 3 or less in 55 patients (95%) at baseline and 48 patients (92%) at 1 year. CONCLUSION: To our knowledge, this is the first prospective study of the clinical outcomes of patients with POTS. Orthostatic symptoms improved in our patients, with more than one-third of patients no longer fulfilling tilt criteria for POTS, although the overall group change in heart rate increment was modest. Our data are in keeping with a relatively favorable prognosis in most patients with POTS. Copyright © 2012 Mayo Foundation for Medical Education and Research. Published by Elsevier Inc. All rights reserved. PMID: 22795533 [PubMed - as supplied by publisher]

Zap, What was your dosage of Eucommia (DuZhong)? The soup recipes I found used anywhere from 15-70g (.5-2.5oz.) per recipe and the herbal formulas used anywhere from 5-15g per day. Did you end up making an ethanol extraction? Just curious.

http://www.marketwatch.com/story/combined-northeratm-droxidopa-data-from-two-phase-3-trials-confirm-symptom-improvement-in-patients-with-neurogenic-oh-2012-06-21 A lot of our docs are trialling this for orthostatic hypotension and it seems to be working....

I asked a former Air Force Instructor now airline pilot about this less than five minutes ago. He said: "There is generally very little (1.125 psi) or no pressure difference at take-off, and cruising altitude is about 8,000 ft atmosphere (8 psi.) There are only about 1.1 G's pulled at altitude during take-off. So there should be no physiological difference for the people on the plane." BUT...we don't respond to "normal" circumstances (like standing) like "normal" people do, so there is a possibility of hypoxia due to the slight increase in pressure. He suggested that you speak to your doctor and get a prescription for oxygen to take with you and use it as needed. The airlines will provide oxygen or you can bring it with you if you coordinate it with the Airline and your doctor before the trip. (I don't know the TSA regulations.) I have found that compression and hydration works for me, but I have not tried O2. I still have several hours of increased symptoms after flying, so something is going on up there.

When I was tested for Mitral Valve Prolapse, it was an exercise stress test with an echocardiogram to image the heart. I had no regurgitation and the valves all closed, but the doc noted an unusually high HR and contraction strength in response to exercise. You might check your orthostatics first thing in the morning for a couple mornings, just to confirm/refute the TTT. EKG's are to see trends in the heart's firing, to see if there is an electrical glitch or arrhythmia. Waiting to get better stinks...let us hope relief comes soon!

Another connection: http://www.sciencedaily.com/releases/2012/07/120712131529.htm "What this says is that the autonomic system of children with ASD is always on the same level," Christa Anderson, assistant research professor, said. "They are in overdrive."

Rich, I've read Dr. Grubb's article, but my diagnosis was made without testing NE levels. The doc at Vanderbilt showed me the difference between POTS and Hyperadrenergic POTS in my responses to the ANS tests: my BP did not drop when it "normally" should have, it increased dramatically as did my HR. I have flushing, tremor and increased sympathetic symptoms on upright posture. I think (and they do as well) it can have several causes from too much NE, to an overly vigorous response to what you do have.

I got my diagnosis at Vanderbilt with Dr. Biaggioni. He is a fantastic, understanding doctor, but it is unlikely that you will find "the cause" during that visit. Unless, you are an inpatient, the appointment can be rather brief with the standard autonomic tests. In my experience, Vanderbilt only diagnoses, they don't treat or follow up, but they are available for consultation by your doc at home. I gave up on finding "the cause." I would call and ask what is involved with your visit before driving that distance.

I was diagnosed as having Hyperadrenergic POTS at Vanderbilt and they never tested NE levels. It was based on physical symptoms in response to the standard autonomic tests. The NE levels don't really change the treatment options unless they are looking for a pheo...it is all still trial and error until you find something that helps.