Poohbear

I don't normally make these types of specific recommendations but in your case I feel strongly about this..... Is there ANY way you can get to Mayo Clinic in Rochester, MN and get your physicians to specifically request Dr. Win-Kuang Shen (there are several Dr. Shen's at Mayo so make sure the request is specific to this Dr). Dr. Shen is GREAT and he truly knows when and where IST crosses with POTS, when Ablation is truly needed and when it would make things worse. He has cautioned me several times (since I have POTS in addition to other idiopathic cardiac issues) not to let anyone else touch me in terms of ablation. He specializes in neuro-cardiac components of the heart and knows POTS very well. They have been great with my pacemaker settings as well. I've had mixed experiences at Mayo clinic but Dr. Shen quite honestly has been the BEST Dr I've ever seen there (I personally think he's better and has much better bedside manner than any of the autonomic team in MN (Dr. Shen is in Cardiology obviously and not in the neuro dept but obviously works closely with the autonomic team when needed). It may take a couple of months to get in but push your Dr.'s to get an appointment with this specific specialist if at all possible. Please please please consider seeing Dr. Shen before having any further ablations done. You could get worse instead of better if you proceed with another ablation done by someone who doesn't truly understand the complexities of a case like yours! P.S. I understand what you are saying about your situation but speaking in general terms, everyone on this site with POTS has IST----meaning, POTS, by it's nature, is sinus tachycardia and the rate is inappropriate for the activity level of the person thus almost always inappropriate sinus tachycardia for everyone. I just don't want the terminology to confuse some folks on here.

There are plenty of dysautonomia patients who have increase in both bp and heart rate. I would clarify with the Dr what his thoughts are. Maybe he thinks that because your heart rate starts coming down fairly quickly that doesn't fit the diagnostic criteria and/or that if your heart rate starts coming down right away that there's really no symptom he could treat. You don't say what your symptoms are or what led you to seek the help of the Dr. It could be that you have OI but it could also be that you are dehydrated or on medication that is causing a SYMPTOM (or hundreds of other reasons you could present with these symptoms). Just because you have some symptoms doesn't necessarily mean you have a DIAGNOSIS of OI. You might...but you might not. Certainly keep looking for answers and ask lots of questions until you understand things yourself. You might get better direction from folks here if you explain more about your situation--what your symptoms are, how long you've had them etc etc. Good luck to you!

I can only share my personal story on this one..... I had horrible problems with symptoms being much worse at certain phases in my cycle (to the point I ended up in the ER about every other month). A couple of years ago I ended up having to have a hysterectomy on an emergency basis not directly related to this illness. I chose to leave my ovaries because I'm still on the "young side" and not close to menopause. Nobody was sure what would happen in terms of how, or if, it would impact my symptom flares related to the dysautonomia. All that time I suspected it was hormone related. Now...after having the hysterectomy (but still having the ovaries) and still having normal hormone fluctuations (they have been tested a few times) I do NOT have the same flares. I still get some of the symptoms of PMS (bloating, more emotional, tender breasts) but I do NOT have the increase in dysautonomia symptoms with these hormone cycles/fluctuations. In MY CASE, I suspect that the bigger problem for me was the frequent blood loss (I had very heavy periods and was also having them about every 2 1/2 to 3 weeks) and fluid shifts. It seems (in hindsight) that was more of an issue for me than the hormones in and of themselves. It took several months after the hysterectomy for me to recover but once I got over the initial trauma of surgery I did notice I wasn't crashing every 2 or 3 weeks like I had been. I still have crashes but they are not related very often to my hormone cycle.

Researchers are TRYING to do something. There are literally hundreds of reasons a person can develop dysautonomia. There is suspicion that some people have this because of an underlying autoimmune disease. However, to date, no specific antibody has been found as the cause. This is an active research process and there are at least two centers currently involved in researching and looking for the antibody(s) potentially responsible. Until it's identified no specific treatment can be recommended across the board. Autoimmune diseases can be a beast of their own and as some have found through their own trial and error process of trying different treatments (IVIG, plasmapheresis, various meds etc) that there are substantial risks to these treatments and there are very few people (dysautonomia patients that is) who've had success with these routes--probably in part, due to the fact that, unlike some other autoimmune diseases where they know what antibody to target, POTS does not have an identified antibody to target making the process much riskier and more of a crap shoot. Until this disorder gets enough research funding and antibodies are identified it will remain a much slower process. How do you know your POTS was caused by Lyme? Isn't it equally possible that your POTS symptoms are maybe a result of damage done to the body from the antibiotics since you say you had no symptoms of POTS UNTIL you started treating for the Lyme? You wrote, "The pooling in the extremities, or in my case, the "Hyperadrenaline" type seems to be merely a symptom rather than the true disorder or should I say underlying cause" Pooling in the extremities does not = having hyperadrenaline POTS. You state, "And just so you all know, my Lyme is a clinical diagnosis which means it didn't show up in my blood. Only about 35% of the people diagnosed with chronic Lyme actually show an antibody in the blood" How do you know you haven't been mis-diagnosed? How can you be confident you actually has lyme disease if no objective data confirms it? Aren't you concerned of a potential misdiagnosis if there is no objective testing to verify the diagnosis? "the body doesn't recognize the bacteria as foreign as it takes on the "L form" and is ignored by the immune system, so there will be no antibodies made are seen in a blood test" If the body doesn't recognize the bacteria as foreign and the immune system "ignores" it then how is that considered an autoimmune disease? Autoimmune diseases are where the body attacks itself so if the immune system is "ignoring" this then it's not a disease process in which the autoimmune system is responsible. I certainly hope you find answers and get good treatment. It's worthwhile to pursue any avenue that may bring better health but try not to close yourself off from other explanations or potential sources that have other root causes.

I am not familiar with the specific brand you are questioning but based on my experience with these decisions here are some suggestions. 1-Decide where you will use the chair. Inside? on carpet or hardwood? Outside? Limited to smooth surfaces or grassy areas? If you plan to be on carpet or grassy or rocky areas you probably need the heavier chair that will be sturdier. 2-Pay attention to the wheel size and if all 4 wheels are the same size. Do the wheels have good traction? Read reviews online of other people's experiences 3- It's nice to have light weight and portability but some of the light weight chairs really limit where you can go with them. You also don't want a chair that is so lightweight that it makes it easier for you to accidentally be 'tipped out'. For example navigating a low curb or sloped incline can pose a problem for you (or others who may push you) and if your chair is very light weight it can be much easier to tip out and/or lose control of the chair. 4-Ask if there is an option to return and exchange the chair if upon arrival you realize it's not a suitable one for you. If you are talking about a weight difference of 5 to 10 pounds between chairs then my advice is to go with the heavier chair. 5 to 10 pounds is really not much different in terms of portability in the "lightweight" chair categories and I've found that too light of a chair just doesn't manuever very well (unless you will mostly be on hardwood, smooth interior surfaces). Hope this helps! Good luck with your decision

From what you've written here it doesn't sound like you have POTS. Dizziness can be a symptom of POTS but you said your heart rate is 70 resting which is normal and good. You don't say what your heart rate goes to upon standing. POTS has several criteria to be diagnosed: (From one of the many Medical Journal Articles put out by Vanderbilt: "Diagnostic Criteria: Criteria for the Postural Tachycardia Syndrome Heart rate increase > 30 beats per minute from supine to standing (within 5-30 min) this should occur in the Absence of orthostatic hypotension (a fall in blood pressure >20/10 mmHg). Symptoms get worse with standing and better with recumbence Symptoms lasting > 6 months Standing plasma norepinephrine > 600 pg/ml (> 3.5 nM) Absence of other overt cause of orthostatic symptoms or tachycardia (e.g. active bleeding, acute dehydration, medications, prolonged bed rest). The syndrome must occur in the absence of prolonged bed rest, medications that impair autonomic regulation (such as vasodilators, diuretics, antidepressants or anxiolytic agents), or any other chronic debilitating disorders that might cause tachycardia (such as dehydration, anemia or hyperthyroidism). The mere observation of orthostatic tachycardia is not, by itself, sufficient to make the diagnosis of POTS." I have not read anything that indicates any connection between Hashimoto's and POTS; except perhaps that if the hypothyroidism is not treated it could make other symptoms worse. Adrenal problems can overlap but it's hard to tell---you would have to find out if the root cause of your problems is adrenal or some other root cause. You may have symptoms of autonomic disturbance but that doesn't necessarily mean you have POTS or Orthostatic Intolerance--you might but then again the symptoms you describe fit many other problems and conditions as well. If you feel like you haven't been evaluated thoroughly I would encourage you to seek out a specialist. Good luck to you.

I know this is a repeat topic but here is another link. http://www.ncbi.nlm.nih.gov/pubmed/1711050...Pubmed_RVDocSum

Mack's Mom.....share away I've had both good and bad experiences at Mayo with certain physicians especially in the GI dept. but in the MCAD issue the three Dr's I saw were really good. I'm not sure if Dr. Lee is at the Jacksonville location anymore--he was originally in the pulmonary dept but the last time I tried to contact him I got no response and I see his name is "greyed" out now but the other two are still w/ Mayo (one in Jacksonville and one in MN). Especially in MN if you go in with a ANS diagnosis already existing they know about the research/data on the connection between the two.(or at least Dr. Volcheck and his assistant were) I don't know how to answer your question about anaphylaxis because from what I've seen you post on it before that is not what any of my Dr's would have called anaphylaxis. I have had some anaphylaxis episodes in the past but those were true allergies and didn't appear to be MCAD related. I do get "autonomic crashes and varying degrees of respiratory problems" that have been labeled as MCAD triggered. My meds help some but I am far from controlled however, I have several rare conditions working and being triggered at the same time so my case is extremely rare. No, treating my MCAD has not improved my autonomic stuff (but again....that is probably because my root cause is coming from a rare condition).

Mack's Mom, I had no problem at all with Mayo clinic (either location I went to) recognizing my MCAD. I saw Dr. Volcheck this past summer in MN who was wonderful to work with. Initially I was diagnosed back in 2004 with MCAD when they were still trying to even decide for certain what they would call this condition and what the criteria was going to be etc. etc.--that was through Mayo in FL and I saw a Dr. Gillham (who was also GREAT and validating and knowledgeable) and also Dr. Lee who was also wonderful. So....if you ever need to find a Dr. through Mayo for this, look up one of the above. Hopefully now that you have a diagnosis and treatment plan you won't need them though!! My histamine comes back elevated on 24 hr but not extremely high but after spells it is definately much higher. My situation is extremely complex though in that it looks like I am also dealing with neuroendocrine tumors so it greatly complicates treatment approaches. LOL...I can related to your comment about "spells". Initially some Dr's may have been calling them that because they didn't have a definitive term until the last 4 years or so. I went to an endo last year that wrote "spells" under a diagnostic category and the check out clerk had a fit--she kept saying "What kind of spells?" I finally said code it as Autonomic crisis and that worked. Yep....the meds are definately trial and error. I also have a long list of foods to avoid that seem to have made a big difference for me.

I am not up to reading all the threads so I apologize if I'm repeating something someone else has already said..... Regarding the TTT and your insurance claiming it is "experimental". If you feel you need the TTT and you believe you have POTS you can try sending your insurance company some information. If you are interested, PM me and I will see if I can help you appeal that decision.

If you agree with the theories of psychosomatic causes then genetic disorders aren't excluded from that category. It has been shown in science that genetic disorder does not necessarily mean a person was BORN with a genetic defect. They may have been but there are also other things that cause genetic defects---viruses, trauma, stress etc. So to that degree...a genetic disorder could still fall under psychosomatic. In the end it doesn't really matter---people are dealing with what IS. I think we owe it to ourselves to try whatever we can at our disposal to get better and hope that it works. If it doesn't, it doesn't mean we are to blame or to judge others about it. Catelynnw3, I think you know your body best. There is definite connection between mind/body. I don't think anyone can deny that. It sounds like you have already figured out that your body is responding to something physical and then responds with an exaggerated response to a normal stimuli. The root cause may be different from someone else who may have anxious thoughts first and then a physical response. In the end....the root cause may be different but the treatment (to some degree) or what controls symptoms may be similar or even the same in some cases.

Hmmmm.... I was told by specialists at both Mayo in MN and Mayo in FL and Vanderbilt that these are NOT the same tests. Histamine and methylhistamines tests are two seperate things. The agreed upon consensus I've heard is that when testing for MCAD histamine is not usually very reliable (it's not a very good or stable test) unless it is done right after an episode. I've been told repeatedly that methylhistamine testing is the preferred test and much more reliable. (I believe they said it has something to do with the assay's used to process the labs). When I was going thru the diagnostic process I was instructed to go to the ER immediately after an episode and be tested both for the histamine and tryptase and that it has to be done within 2 hours (preferably one). For either case, there can be false positives and certain food and medications can also cause false positive results. High histamine does not necessarily mean you have MCAD or mastocytosis; there are other diseases and conditions that can also be responsible and other things that would need to be ruled out. I'm actually allergic to benadryl. I do get a lot of benefit from Chromolyn and Pepcid (h2) though.

Waterbaby, It's interesting that ice works for you. We are all so different sometimes aren't we even though many of us deal with the same symptoms?! I discovered (kinda by accident) that warm water sometimes helps my nausea. I have to be careful because sitting in a tub of warm water will sometimes cause problems for heart rate and bp so it's a trade off for me. Heat (like a hot water bottle or heating pad) don't help as much as sitting in a tub of warm water. Zofran helps for me but my insurance severely limits the quantity per month. Sipping on a cup of hot chicken broth will sometimes help, ginger is good for some people to help with nausea. I wish I had some good answers for you (for myself too!)

I understand where you are coming from! I am extremely sensitive to medications and I even have to compound meds so that I can take them in baby doses. When it comes to anti-depressants it really is an individualized thing and sometimes involves a lot of trial and error. Do some research and consider going with one that is available in liquid form---that would give you more freedom to titrate the dose slowly. I know Lexapro is available in liquid. Best of luck in your search!

I'm sorry you are feeling poorly! The figures you posted actually look 'reasonable'. As others have said, it is important not to take your bp too much because sometimes it will just keep us focused and unneccesarily anxious about the numbers. ALL people have fluctuations in bp with changes in activity, before or after meals, exercise, time of day....anything and everything effects blood pressure and that is normal. I think everyone on this board has these same types of fluctuations. And some of us who have been dealing with this for a long time will also tell you that sometimes you can FEEL absolutely horrible and your blood pressure and pulse will be "perfect". How you feel doesn't always correlate to what is happening in your body. Some Dr's will say don't take your blood pressure on a daily basis at all; others will say take it once a day..maybe around noon to get a "fair" balance of the day and then only take it if you have a unusual episode (that is unusual from your norm). It can take time to adjust to these sensations and feeling bad and learning ways to try to distract yourself from all the symptoms--be gentle with yourself. Talk with your Dr and see if he/she feels you need to be checking your bp often. If you are not able to tolerate BB's then maybe you could consider other treatment options. Best of luck to you!

http://ohsr.od.nih.gov/info/sheet6.html Note the below questions NIH has outlined.....including "will the results of the study be shared with you?". Obviously, the fact they even pose this question means researchers don't necessarily have to share results with you or even the results of the overall study. AMA guidelines aren't the same in this case because the participant is giving consent to be a research patient. That doesn't mean patients don't have rights....they do, but it is per outlined under the "Office of Human Subjects Research" not AMA. Some studies are sensitive in such a way that patients names are never part of the research file---the record is given a number and the researcher may not even know what file number goes to a given patient. Some studies are "double blind" to deter bias from the researcher or the participant--how could a researcher release specific patient data in a truly double blind study? They can't.....thus in some cases, patients do not get the data that resulted in their participation in a study. Why is this research being done? Why are you being invited to participate? How many people will take part in this research study? How long will you take part in this research study? What do we do to decide if you are eligible for this research study? What procedures, drugs or other treatments are involved in this research study? What are the risks and discomforts of this research study? Are there any benefits to you if you take part in this research study? What other choices do you have? Are there reasons that your research participation may end early? What will happen when the research study is over? Will your clinical and other test results be shared with you? Will the results of this research study be shared with you? Will any of your blood, tissue or other samples be stored and used for research in the future? Will you receive any compensation (money or other) for taking part in this Research study? The following CC minimum language is part of the consent template and must be used: ?In general, patients are not paid for taking part in research studies at the NIH. The amount paid to research volunteers is guided by National Institutes of Health policies.? Add appropriate language if compensation is to be paid, including the amount of compensation. Do any of the researchers or the NIH have a financial interest related to this research study? What privacy and confidentiality procedures apply to the information gathered about you in this study? I hope this clarifies some of the confusion.

I've had some dealings with this area several times as I have been a research patient multiple times at various different institutions. The short answer to your question is "no". In general, researchers are not required to release data unless they are court ordered, required by the FDA to be released to them, members of congress, law enforcement. They can CHOOSE to release information but are not required. I've never known a U.S. institutions or researcher not to release information if the information could potentially change your treatment options or if the information they gathered was important for you to know (for example, if they found a rare gene defect---they may offer you the option of knowing about it with the understanding it could negatively impact you if there was no other treatment option; like in the case where insurance could base decisions on that information). This is a time to also strongly encourage people to carefully and thorougly read all consent forms to participate in the research before you sign and agree to be a research patient. Those papers will usually tell you if you will be given results or not; if they don't specify and it's a concern to you, then do not sign the consent form. Those consent forms are legally binding. Ernie, go back and review the copy of "consent to research" paperwork. If what they are doing goes against what you consented to then you can try calling the patient representative at NIH. You will need the study title and IRB # before calling them (which will also be on the "consent to research" paperwork). Most facilities that do research have two seperate files--your Medical file and your research file. You ARE legally entitled to your Medical file but not necessarily your research file.

The recall was back in late Jan. and I believe the recall was only on the generic Toprol. You should be fine now as long as you get the brand name. You may need to have your Dr write a new script for "Brand Necessary" so that your insurance will cover it. As for atenelol.....I was on that for a long time and did well with Brand name but had to take twice as much of the generic to get the same benefit and even then....the brand name still worked much better.

Ask your Dr but I don't think you should drastically increase your sodium intake if you are taking Florinef----you will be doing "double duty" (so to speak). But, your Dr should be closely monitoring potassium levels while you are on Florinef. I would imagine since you were just in the hospital that they know your potassium levels are ok and it's too soon to check since you just started taking Florinef. Also, FYI, Dr. Rowe that Mack's Mom talks about specializes in pediatric cases and the majority of Dr. Rowe's work and advice is for pediatric population which is sometimes very different than what works for adults. There are some adult patients who need higher doses of Florinef. Having said all of that....it sounds like your symptoms were worse after eating and not necessarily tied to the midodrine or the florinef. I have had many episodes like you describe after eating. It could be medication or it could be eating or it could be a combination of the two or some other factors. Many people are troubled with exaccerbation of symptoms after eating....blood rushes to the stomach to digest food which pulls it away from your head. You could also have some orthostatic hypotension or orthostatic hypertension going on after meals. Michelle, please do ask your Dr about using Midodrine and Florinef together. The PDR does show potential drug interactions with these two meds. Specifically it states, "Fludrocortisone/ increase risk of supine hypertension, intraocular pressure and glaucoma" (this is in reference to taking the two drugs at the same time). Meanwhile, try eat smaller portions --some say 6 small meals a day. Keep a food diary if you can so that maybe you can see "trends". Some people have food insensitivities that bring on symptoms, some are sensitive to too many carbs, some people tolerate food earlier in the day but not later, some tolerate food better later in the day but not earlier----it can really be a HUGE range of things that happen. If you can keep track of all these logs for a few weeks you might start to figure out what works or doesn't work FOR YOU. If possible, only try one treatment at a time so that you can better sort out what is causing what. Best of luck!

Is there anything you could take (or increase the dosage of) on a short term basis to see if it helps with the anxiety? Sometimes people find if they can get their body to rest and not stay in the fight or flight response then everything else will calm down. I wouldn't apologize to the Dr' for being anxious but I would try to explain where I was coming from and ask for his input on treatment options. I know it's scary when your heart is racing and doing things you are not used to but try to take comfort in the fact that the Dr is telling you it's normal sinus rhythm. Are you on a bb? You may want to consider asking about trying a tiny dose of a short acting bb---I say short acting because I know you have bp drops and slow heart rate sometimes too so the nice thing about a short acting bb is that it wouldn't stay in your system long. You might could try taking it midday and see if you get a better balance to the day that way. I hope you get to feeling much better soon and that the anxiety will abate!!!!

It's good that your heart is structurally ok. Beta blockers don't work for everyone What form of dysautonomia were you diagnosed with? Unless your case is viral related it doesn't sound like the typical initial presentation of autonomic dysfunction but you may have multiple things going on. Have you seen an endocrinologist or a GYN who specializes in hormone issues? They may be helpful in helping you sort some of this out as well. There are many many reasons why you could be having tachycardia. You also have to give it time (sometimes a month or more) when you go off a beta blocker or switch---for a period of time you can get a re-bound tachy. issue and it takes your body time to adjust. The cardiologist may not know what to do--ask him. If he doesn't know what else to try then ask him to refer you to someone that he thinks can help you. I hope you get some answers soon

Have you considered taking her to Mayo Clinic in Jacksonville? There are cardiologists there who are familiar with POTS---Dr. Thomas Flipse and Dr. Fred Kusumoto are two that I know are knowledgeable. I would HIGHLY recommend you not let anyone but a "POTS" specialist perform any cardiac ablation. If you are able to travel, Dr. Win-Kuang Shen @ Mayo in Rochester deals with cardiac autonomics and is a wonderful and knowledgeable Dr. I can also recommend Vanderbilt--both their Autonomic specialists and their cardiac Dr's. If you were to go to Vanderbilt you might need both teams (autonomic & cardio) to work together but they are familiar with how to seperate out patients with autonomic dysfunction who truly need an ablation vs. those that don't. I would let your local physicians do a cardiac workup but I absolutely would not give them permission to do any ablation without input from autonomic specialists. I do have a cardiac pacemaker and have benefited from it but I was fortunate to have Dr's who were educated on all of this stuff. I have both NCS and POTS (among a long list of other problems). The first 5 years I had my pacemaker it almost completely stopped my syncopal episodes (although it does NOTHING for tachycardia) but after 5 years my disorder progressed and has changed and now I pass out just as much as I did prior because my bp drops before my heart rate sometimes. In my case, the pacemaker is still helping but it's unusual for pacemakers to help a 'typical' POTS patient (of which I am not) and even though it helps I am significantly disabled. As for the Midodrine. I AM NOT A DR so ask your Dr's and ask your Pharmacist but.....this is what my 2006 Edition of PDR Nurse's Drug Handbook says..... Under "Dosage....Orthostatic hypotension. 10 mg 3 times per day given during the daytime hours when the client is upright and pursuing daily activities (e.g. shortly before or upon arising in the morning, midday, and late afternoon--not later than 6:00 p.m.). Under "Client/Family Teaching the book states, 1. Take during the day while up and around. Do not take after the evening meal or within 4 hr of bedtime. 2. Use OTC products containing phenyllephrine (e.g. cold/allergy remedies/diet aides) cautiously; may increase supine BP. 3. May experience supine hypertension, check BP regularly while lying and sitting and keep a record. Stop drug and report blurred vision, pounding in ears, headache, cardiac awareness, increased dizziness/syncope. Good luck to you both!

Do you mean during the TTT or in general? If you mean is it normal to pass out during a TTT with or w/out the nitro I would say "it depends". if you pass out without the nitro that's not "normal" but it also doesn't necessarily mean there is anything dangerously wrong with you either (it could be either way---there could be something dangerous wrong but there might not be). If you pass out after being given nitro. then that may not be normal either but again...wouldn't mean there was necessarily anything truly wrong with you either especially under the conditions of having it happen in a TTT study. As for passing out (sycope) in general--there are many reasons why a person could pass out. Some are a sign of a dangerous root cause but most are not. It goes back to needing to find the root cause if possible. Most people pass out at some point in their lives--in that sense it's "normal". If it's interferring with your life or connected to other symptoms then you certainly have to check it out, but again....there are hundreds of reasons why a person could pass out.

Brianala, I am NOT a Dr so I can't give you a physician's answer. I have been dealing autonomic dysfunction for well over 15 years. My first TTT was 12 years ago and I've had many along the way (as well as many many other tests). I've seen many of the "top" specialists in this field so it is through my own journey, tons of research and reading and lots of conversations with the specialists ---it's a combination of all of these things that I have learned from, but again....keep in mind that I am no Dr. My PERSONAL OPINION is that a positive TTT after receiving nitro, isoproterenol or any other drug is potentially questionable. There are lots of factors that have to be considered. A patients test could clearly be positive prior to administration of any drug but the Dr may want to see what happens after one of these drugs is given. You could have a patient who had a test within normal limits who reacted only once one of the drugs was used. In my opinion these two scenarios (and there are many more) are very different. Physicians need to be educated and trained. A positive TTT in most any of these scenarios, in and of itself, is not enough for a definitive diagnosis from what I've read. You could have a patient who maybe has a mild disturbance that only reacted with the drug on TTT--one that in general is not problematic in day-to-day life but if the Dr uses that one and only test to diagnose and treat the patient then potentially he could maybe be doing a disservice to the patient. Likewise, there are probably patients out there who benefit from the suggested treatment regardless of how their TTT turned out. Here is a link that may help you with some of your questions http://www.pubmedcentral.nih.gov/articlere...i?artid=1501099 We hear about so many physicians that don't follow a good procedure for how the TTT is done and we know that can affect the outcome of the test. For POTS it's several criteria that have to be met for diagnosis but as someone at Vanderbilt pointed out to me, "Remember....POTS is not an "end" diagnosis, it means we've identified you have a cluster of symptoms that fits the syndrome but there are probably a hundred different reasons why patients develop the syndrome and we just don't know yet what all of those are. Sometimes we get lucky and find the root cause, but to date, most of the time we do not"

There are many suspected causes for POTS and there is a theory that some people do have an autoimmune disease as the root cause. There is at least one facility getting ready to undertake a research study on this (if they haven't already recently started) to look for the antibody potentially responsible. To date, in most cases, even when the POTS is suspected to have an autoimmune root cause the antibody responsible is unknown. There has been some talk about trying IVIG treatment but the GENERAL agreement among most of the specialists at this point is that it's too risky. If they know what antibody to target then IVIG therapy might become a more promising option but without knowing what antibody to target it's not been very successful in most cases. There was also discussion in the past about plasmapharesis but again---the risk was too big, hypovolemia could be a severe issue in patients like us so most physicians agree that this too is an option that would be too dangerous with the knowledge that is currently known. It is also true that if a person has one autoimmune disease they are much more likey to have several autoimmune dysfunctions/disorders. It doesn't surprise me to hear people say they have multiple autoimmune problems.