firewatcher

"Manufactured" supplements in pill and capsule form can be of truly questionable origin and efficacy. All the herbs that I take are quality tested for pesticides, heavy metals, etc. and most are organic. My Herbalist makes all his own "supplements" so they are tailor made specifically for me and my conditions as they present from week to week. It is the closest thing you will ever get to custom pharmecueticals. I have made huge improvements in the last year of taking them, so much so, that I can now hold down a full-time job outside my home and I take 2/3 less of my POTS drugs.

Will they get you where you need to go, can they take others with them and how much is it going to cost you in gas!

I can lose up to 8lbs in one day. I usually fluctuate 4-6lbs per 24 hour period, and less than that if I have few symptoms. Mine is definitely always fluid/volume. My labs look awful when I am 8lbs down.

My downfall, literally, is a playground swing. I used to love them, so I took my kids when they were little and got on one myself. I ended up with nausea on all fours while they swung...it was awful. I havent' tried roller coasters in a long time.

From a post entitled "Klonopin??" from about a year ago: Opioids: Addiction vs. Dependence by Karen Lee Richards, ChronicPainConnection Expert One of the greatest obstacles chronic pain patients face in their quest for adequate pain relief is the widespread misunderstanding of the difference between physical dependence on a drug and addiction. Many patients, the general public, and sadly even some physicians fear that anyone taking opioid medications on a long-term basis will become addicted. As a result, pain patients are often labeled as “drug seekers” and stigmatized for their use of opioid medications. Worst of all, their pain frequently remains under-treated. Understanding the Terminology Before we can adequately discuss this topic, it is important to clearly define the terms we will be using. Addiction is a neurobiological disease that has genetic, psychosocial, and environmental factors. It is characterized by one or more of the following behaviors: * Poor control over drug use * Compulsive drug use * Continued use of a drug despite physical, mental and/or social harm * A craving for the drug Physical dependence is the body's adaptation to a particular drug. In other words, the individual's body gets used to receiving regular doses of a certain medication. When the medication is abruptly stopped or the dosage is reduced too quickly, the person will experience withdrawal symptoms. Although we tend to think of opioids when we talk about physical dependence and withdrawal, a number of other drugs not associated with addiction can also result in physical dependence (i.e., antidepressants, beta blockers, corticosteroids, etc.) and can trigger unpleasant withdrawal symptoms if stopped abruptly. Tolerance is a condition that occurs when the body adapts or gets used to a particular medication, lessening its effectiveness. When that happens, it is necessary to either increase the dosage or switch to another type of medication in order to maintain pain relief. Pseudoaddiction is a term used to describe patient behaviors that may occur when their pain is not being treated adequately. Patients who are desperate for pain relief may watch the clock until time for their next medication dose and do other things that would normally be considered “drug seeking” behaviors, such as taking medications not prescribed to them, taking illegal drugs, or using deception to obtain medications. The difference between pseudoaddiction and true addiction is that the behaviors stop when the patient's pain is effectively treated.

No, dependance is NOT addiction. There is a huge difference. By several of these definitions, a type I diabetic is addicted to insulin. I have taken Clonazepam/Klonopin daily for over three years and while I am dependant, I am not addicted. I have tapered off three times for testing, and while it was difficult, it was not impossible...I merely had a return of the symptoms that I was taking it for. As I have improved, I have been able to taper down to a sub-clinical dose, but have not been able to come completely off due to my symptoms. It is one of the very few drugs that has put any kind of dent in my daily migraines, and it assists my beta blocker with my tremors. I will search for the old post that details the difference between addiction and dependance and link to it if I can.

http://www.sciencedaily.com/releases/2012/02/120214134938.htm "Scientists know that stress elevates the levels of pro-inflammatory cytokines (signaling molecules used in intercellular communication) and promotes hyper-excitable conditions within the central nervous system. This hyper-excitability is thought to be a factor in epilepsy, autism and anxiety disorders."

http://www.dailymail.co.uk/health/article-2001407/Marchs-child--woe-Babies-born-spring-likely-develop-wide-range-diseases-autumn-children.html Season of birth and illness article.

I think that a more "legitimate" investigation would be season of birth. There are many studies done that indicate that "season of birth" influences the susceptibility for many psychiatric illnessess, eating disorders, Autism, Parkinson's, etc. Apparently the current theory is that maternal infection by influenza influences the development of the fetus, dependant on when in the process of development, the infection occurs.

When I was at my worst, and before my diagnosis, Benadryl was the only thing that ever helped. I took the liquid at the max dose, every four hours. It actually has incredibly potent action on the nervous system; its antihistamine effects are simply a byproduct. The other closest relative is mirtazipine/remeron. I also had disembarkation disorder without travel. Klonopin and Propranolol helped the greatest at first, now I would say dDAVP. I truly think that this will calm down with proper treatment. I also would suggest that your wife become either a member or lurker on this site. There is as much stress on her as there is on you, and she needs the support that you can't give her now. You need to support yourself and not feel guilty about it. Good luck!

I go regularly. I would agree with ramakentesh, that it is in my top three as well.

I wholeheartedly agree. The problems are: 1. Actually finding a good practitioner 2. Being able to get the herbs...One of the herbs I am on, which has been the most helpful, is completely banned in Europe and Australia and there is no substitute! 3. To get the full benefit, you have to cook them yourself...no pills or powders! The issue with this is that if you don't do it exactly like they say...you can end up really dead! Other than these, if you can find a good practitioner, I have found the Chinese Herbal remedies are much easier on the system and work much better.

I was showing symptoms of a pituitary tumor and was referred to an endocrinologist. He did a "poor-man's tilt" on me in the office and found the huge HR jump when I nearly fainted (thank God for strong nurses!) He told me that I had Mitral Valve Prolapse Syndrome, so I immediately went to a cardiologist, who checked and found no prolapse! I wondered how I could have MVP without prolapse and found University of Alabama's Mitral Valve Prolapse and Autonomic Dysfunction Center website. I printed out some info for my primary doc who sent me to Vanderbilt for confirmation, but he was pretty sure it was POTS after reading the literature from the UAB site. I still have pituitary issues, but no tumor!

I believe that this is more like diabetes. First there was only the juvenile onset/type I, then there was the adult onset/type II. Now there are also adult onset-autoimmune/type I and the juvenile onset-obesity/type II. I would guess that there are distinct mechanisms that cause similar presentations, but have radically different causes and treatments.

ddavp

Yeah, Julie, I was thinking of exactly that. But, I was also hoping that someone here might have seen this group and would have feedback.

Only research patients were required to go off all meds. TXPOTS saw Dr. Levine and had an approach tailored to her needs. Good luck with your daughter!

I have a special interest since my nephrologist says that POTS probably caused my kidney issues... I'd love feedback on the quality of these docs if anyone has seen them: Cardiorenal Med. 2011;1(2):113-122. Epub 2011 Apr 15. An Emerging Role for Understanding Orthostatic Hyp'er'tension in the Cardiorenal Syndrome. Buddineni JP, Chauhan L, Ahsan ST, Whaley-Connell A. Source Division of General Internal Medicine, University of Missouri-Columbia School of Medicine, Columbia Mo., USA. Abstract Orthostatic hypertension (OHT) is a clinically important problem increasingly recognized in persons with borderline hypertension, diabetes mellitus, and autonomic neuropathies, and in the elderly. Moreover, the association of OHT with progression of target end-organ damage, especially coronary heart disease and chronic kidney disease (CKD), and the attendant increased cardiovascular disease (CVD) and CKD risk, is gaining attention but is still underappreciated. There are various mechanisms that contribute to the development of OHT: excessive vascular adrenergic sensitivity, baroreceptor reflex abnormalities, and inappropriate activation of the renin-angiotensin-aldosterone system, which are also mechanisms that lead to cardiorenal metabolic disease (CRS). While the evidence is compelling for the clinical importance of OHT, more investigation is needed to evaluate the effects of OHT on CKD and CVD. The notion that the development of OHT is a risk factor for the development of CRS raises the need for further clinical and investigational attention to this clinical dilemma. PMID: 22258398 [PubMed] PMCID: PMC3101511

http://www.prohealth.com/library/showarticle.cfm?libid=16778 Article: Induction of chronic non-inflammatory widespread pain increases cardiac sympathetic modulation in rats - Source: Autonomic Neuroscience, Jan 21, 2012 By LR Oliveira, VJ Santana-Filho, et al. [Note: The autonomic nervous system works below the level of consciousness to maintain the body’s balance – regulating blood pressure, pulse, breathing rates, etc. as needed in response to changing physical demands. Two parts of the system are sympathetic function, which involves ‘pushing’, balanced by parasympathic function, which involves relaxing. One type of autonomic dysregulation is when heart rate increases and blood pressure/volume decreases abnormally on standing, causing faint feeling (postural orthostatic tachycardia syndrome - POTS).] Abstract: Fibromyalgia (FM) is characterized by chronic non-inflammatory widespread pain (CWP) and changes in sympathetic function. In attempt to elucidate the pathophysiological mechanisms of FM we used a well-established CWP animal model. We aimed to evaluate changes in cardiac autonomic balance and baroreflex function in response to CWP induction in rats. [baroreflex function refers to the body’s mechanism for maintaining blood pressure.] CWP was induced by two injections of acidic saline (pH 4.0, n=8) five days apart into the left gastrocnemius muscle. Control animals were injected twice with normal saline (pH 7.2, n=6). One day after the second injection of acidic saline or normal saline, the animals had pulse interval (PI) and systolic arterial pressure (SAP) variability, and spontaneous baroreflex sensitivity (BRS) evaluated. After induction of CWP, there was an increase of power in the low frequency (LF) band of PI spectrum (12.75±1.04nu), a decrease in the high frequency (HF) band (87.25±1.04nu) and an increase of LF/HF ratio (0.16±0.01), when compared to control animals (7.83±1.13nu LF; 92.16±1.13nu HF; 0.08±0.01 LF/HF). In addition, there was an increase of power in the LF band of SAP spectrum (7.93±1.39mmHg(2)) when compared to control animals (2.97±0.61mmHg(2)). BRS was lower in acidic saline injected rats (0.59±0.06ms/mmHg) when compared to control animals (0.71±0.03ms/mmHg). Our results showed that induction of chronic widespread pain in rats shifts cardiac sympathovagal balance towards sympathetic [pushing] predominance and decreases BRS [blood pressure/flow]. These data corroborate findings in humans with FM. Source: Autonomic Neuroscience, Jan 21, 2012. Department of Physiology, Federal University of Sergipe, Sao Cristovao, Brazil; Graduate Program in Physical Therapy and Rehabilitation Science, University of Iowa, Iowa City, USA. [Email: visf@infonet.com.br]

I am going to play devil's advocate on this one. While Dr. Levine does call his program a "cure," I would contend that it is more likely a compensation regimen. Exercise changes the physiology of some POTS patient's bodies enough to compensate for a physical shortcoming/malfunction. While there have been no long-term follow-up studies, anecdotal evidence shows that most symptoms return within a month of stopping the daily regimen and then you have to start all over. He does have patients that were not "cured" by his regimen and he does use medications. I simply wish that there was enough understanding of those that could be helped and those that cannot to know which is which. The danger is always that doctors make the assumption that POTS or any condition is a singular group of symptoms that has a single cure without taking the uniqueness of the individual into account. Just because he makes you mad, doesn't mean he isn't right...FOR SOME PATIENTS. BTW, Exercise is a help for me...in limited doses. If I want to do cardio, I just wait a while before taking my morning meds and I'll get a half-hour of my target HR and a soaking sweat just sitting there!

I don't know who is doing the new testing.

There is a newer DI test involving copeptin along with water deprivation. It is a more accurate marker of ADH and is easier to measure. A European study has the cutoff values for DI, partial DI and psychogenic polydipsia.

Yes, it would indicate diabetes insipidus. Anecdotally, my Vandy doc said that many POTS patients show a "diabetes insipidus-like" condition. My ADH was measured at Vandy and shown to be non-existent, and I have been dxed with partial DI.

"Do you mean subjectively or as demonstrated in clinical research? Most of the clinical research Ive seen on traditional mixtures has broken up the constituents to see which one does the thing they are after..." I mean "cooked all together," and the clinical research proves it out! There have been Chinese and Tiawanese studies trying to make drugs from these formulas that have found that if you don't cook the herbs together, the chemicals in the plant/mineral are not released in the same way or quantity as cooked alone. MuLi is oyster shell, it is a "cook for an hour, before you add other ingredients:" and it completely changes the ph of the cooking water and releases different chemicals in the herbs than if you don't precook it. It also doesn't work as well in the body if you don't follow the instructions! This is an OLD medical tradition! It has over two thousand years of human trials behind it, if these formulas ended in the death of the patient, they would NOT be commonly used! HOWEVER, they are prescribed for very specific symptom parameters, and something as simple as "thirst" or "no thirst" will completely change the formula diagnosed.

Yes, and I believe that one type of POTS will be found to be generated by faulty action of the renal system. But I do not think that all POTS has the same root cause or the same treatments.