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Goldstec
by Chelsea Goldstein
Our featured DINET member, Rachel, invites us to the Southern Hemisphere to learn about living with Autoimmune Autonomic Ganglionopathy (Seronegative) (AAG) in New Zealand. While some current political discourse highlights hard differences between peoples, Dysautonomia makes no such distinctions—often operating invisibly and affecting individuals all over the world. Rachel’s story reminds us that, despite our geographic distance and individual circumstances, the highs and lows brought by Dysautonomia are more universal than we may think.
Rachel experienced symptoms of Dysautonomia from a young age that became slightly exacerbated in her teen years, though she always felt they were manageable. In 2008, a virus triggered an autonomic flair that led her to see a cardiologist. This visit began her four-year diagnostic process in which she learned that her fainting spells were truly asystolic episodes. Her cardiologist implanted a pacemaker and diagnosed her with POTS.
During the darkest time of her experience with illness, she was told her condition was progressive. A career woman and a relatively new mother—her life came to an unexpected, abrupt halt. She lost her job, her marriage struggled as both her and her husband tried to grasp the uncertain future, friendships dissipated and, in retrospect, she realized her sense of self grew increasingly lost among her overwhelming circumstances. She feared, “dying, or worse ending up in a nursing home” unable to care for her two young children. Despite her insurmountable struggles, Rachel held an instinctual feeling that something about her diagnosis was not quite right. Thus, she self-educated and sought a second opinion from an immunologist who correctly diagnosed her with AAG, as well as provided more clarity, and hope, for her future.
Rachel’s symptoms began to slowly improve with a proper diagnosis until her AAG went into complete remission. She feels her current quality of life is surprisingly better than it was before chronic illness. Now, she approaches others with a new sense of empathy and thoughtfulness. For all that Dysautonomia taught her about the universal human experience, part of her still sees it as the “questionable ex” who could return at any time to threaten the life she has rebuilt.
I have heard Dysautonomia described in this polarizing manner many times—it is both a great teacher and a source of continual fear. We are thankful for the lessons it has taught us, and for the perspective it has provided us. But, simultaneously, we feel like we have had enough character-building experiences, thanks, and we do not welcome the opportunity to learn from Dysautonomia again.  All of us in periods of remission, or relatively good health, are moving forward while remaining keenly aware of our past experiences of illness. Every cough, sore throat, minor headache and moment of fatigue reminds us that it could resurface at any time. I have certainly experienced this fear, which I call Post-traumatic Dysautonomia. It’s often viewed as irrational by our loved ones, but for us, we know how quickly our health can spiral.
These sentiments of fear toward an uncertain future are all too real in our current world. One wrong play could set off a chain reaction of negativity, and we feel both responsible for keeping all elements of life, including our health, moving in a positive direction, but also helpless to do so. In these moments of rebuilding, Rachel can be a great model. She teaches us to do what we can to have purpose, but modify to be kind to our bodies. She got creative with her career to allow herself to work from home, which led her to discover a passion for writing. She reserves her emotional energy for the loved ones who continue to build her up—her children, her husband who grew with Rachel during her toughest times and her friends who remained constant sources of support. Most importantly, she has learned to value herself as she is, not how she could be. She found pride in her ability to remain connected to her children through her illness, and in the insight she provides to others through her writing. While that “questionable ex” will occasionally make her fearful, she remembers not to let it steal her freedom, or her right to exist.
**** Editor's note:  After this article was published we received requests from readers asking for more specific information about Rachel's treatment and remission.  Below is Rachel's response to readers.  Thanks so much Rachel for sharing with all of us.
A note from Rachel: My neuro-immunologist had read the scholarly articles of Doctor Vernino, and seen this presentation ( https://vimeo.com/32792885 ). He also spoke with doctors visiting NZ from Europe who gave their opinions on my case. Given that 50% of AAG patients are seronegative, he thought it was reasonable to try some immune suppression and see if there was any change in my symptoms, with a view to further, more serious immune modulation. 
A plan of Methylprednisolone infusions across 6 months was made, and potentially, IVIG or Rituximab infusions. The IVIG and Rituximab weren’t needed, as I went into remission on the steroids alone. I experienced dramatic improvement in all symptoms; my pacemaker episodes dropped to zero(!) I no longer endured urinary retention and all that it entails, I had energy again, the ability to move around easily, no dizziness, increased gastric mobility, and best of all, I was able to wean off all the medications I had been taking.  All of the symptoms that had plagued me were improving. Throughout the six months of infusions I had a roller coaster kind of response to the steroids, with each month less time relapsing into the symptoms.  This strong improvement was a surprise to us all. It is of course possible that I was already entering remission when the infusions began.  Sometimes patients with AAG spontaneously enter remission. But I believe it was the infusions because of the timing. Although I don’t understand how steroids alone could have achieved this, I’m sure they did and I am delighted!  
Please be aware that this is sadly not the silver bullet for everyone. It may not be a suitable treatment for all Dysautonomia sufferers. High dose pulse steroids can cause serious issues in many patients especially those with co-morbidities. Please seek the consultation of your doctors as each Dysautonomia patient has a different presentation.  I am always cautious about sharing my story as I have no medical explanation to support how it worked. A satisfactory explanation even escapes my very clever doctor!  He assures me that further research will some day shed light on the impact of inflammation at a cellular level on the autonomic ganglia. For now, I am content with the fact that my ganglia were not dead, but somehow impaired. Every single day I am grateful that I get to experience life away from Dysautonomia and enjoy physical freedom again.  I wish you all, the answers you need, I hope you find treatment that works for you.   
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SarahA33
Below are questions sent in by DINET members and answered by our team of medical advisors.  If you have a question for DINET's advisors, please send to dinetandforuminfo@dinet.org
Q:  My life has been on a steady decline since I started passing out running in the summer heat when I was 12 years old. I'm retired on a disability now at 64.  How can I treat this?  The florinef, salt, and water I tried twenty years ago didn't help. Thanks, Robert
A:  Thank you for your question. I am sorry that you have been feeling unwell. One challenge is that your physiology is not the same now, at age 64 years, than it was when you were 12 years of age. In terms of understanding if your blood pressure is still dropping or if you have excessive heart rate increases, it might be worthwhile re-measuring your orthostatic vital signs. Either at home or at your doctor's office, try to check your heart rate and blood pressure after lying down for a few minutes, and then after 1 min, 3 min, 5 min and 10 min standing. If you are still on the treatments above, including fludrocortisone, then it might be worth trying a "drug holiday" to see if you are better off of it. If your blood pressure is still falling a bit when you stand up, then it might be worth trying midodrine. However, the first step is to reassess how you respond to standing up and then to go from there.
Satish R Raj MD, MSCI, FPCPC
Associate Professor of Cardiac Sciences
Libin Cardiovascular Institute of Alberta
University of Calgary
Q:  My 23 year old daughter who has had POTS for 10 years is going through periods of extreme shortness of breath. Have seen pulmonary and were told she probably has asthma and gave inhaler that does nothing and gets worse after eating solid foods. We thought maybe it was related to acid reflux but testing was normal and medication, Nexium, helped for a short time but it came back. She says it feels like she can't breathe. I have heard pots can cause shortness of breath but to this extent?? Any help would be appreciated. This has been very difficult trying to figure out.   Thanks – Janet
A:  Yes, we have had POTS and especially vasovagal syncope associated with dyspnea. And this sounds more like reflux if it is food driven. I would then check with either pulmonary or cardiology to insure absence of their respective diseases. Bed resting or weight loss will aggravate many aspects of POTS.
Julian M. Stewart MD, PhD
Professor of Pediatrics, Physiology and Medicine
Associate Chair of Pediatrics
Director, The Center for Hypotension
New York Medical College
Q:  I teach at a small school of approximately 100  7th - 12th grade students in Asheboro (Randolph County) NC.  Two teen girls in my small school have POTS. One has a very severe case and had to leave school and one graduated in May. Now,  the female math teacher (mid 30s) from that same small school, has been diagnosed with POTS as well.  Is there some environmental connection? Should I call the health department,  EPA , anyone?? Statistically,  this doesn't seem possible.  Do you have any insight? Thank you,  Heather T
A:  POTS seems epidemic. I think it has hit the media. I would make sure that POTS has been accurately diagnosed. That means having non-transient symptoms that come about when upright and abate/resolve once supine. They also should have undergone a tilt table test
Julian M. Stewart MD, PhD
Professor of Pediatrics, Physiology and Medicine
Associate Chair of Pediatrics
Director, The Center for Hypotension
New York Medical College
Q:  My 18 yr old daughter has recently been diagnosed with POTS and Fibromyalgia. Her very first fainting spell happened approximately 6 months ago.  For the past 6 years, She gets a severe migraine in Nov-Dec. that it last for approximately a month.  Also, for the past 6 years and has had tachycardia. Every time she has passed out the first thing she says when she comes to, is complaining of severe legs aches. She lets me  touch her calf muscles and both are hard as rocks.  Can anyone tell me if this is a typical complaint for POTS patients, if so what do you do for the pain?  Pam P.
A:  First, POTS does not cause fainting. Fainting or syncope may occur on separate occasions in a POTS patient. Some fainters with intermittent episodes of fainting have high heart rates before fainting (actually around 40% by 10 minutes in youngsters). POTS is day to day chronic symptoms associated with excessively high HR but not hypotension (low BP) as occurs in syncope. Some suggest that all of these are migraine related and advocate migraine therapy. I am not familiar with rock hard legs but  Leg muscle contraction is a way to fight off syncope.
Julian M. Stewart MD, PhD
Professor of Pediatrics, Physiology and Medicine
Associate Chair of Pediatrics
Director, The Center for Hypotension
New York Medical College
Q:  My young adult daughter has gastroparesis and cannot consume the amount of water she needs to combat her pots symptoms.  Do you have any suggestions so she might be able to get help with hydration at least once a week?  Thank you!  Kris W.
A:  There are salt and electrolyte powders for use with water to increase blood volume (normalyte and banana bag company). Our GI experts have stated clearly that POTS does not cause such gastroparesis. Moreover, there is evidence to suggest the opposite is true. Anorexia and poor fluid intake secondary to gastroparesis can reduce blood volume which produces a POTS like illness. This is severely aggravated by weight loss and bed resting.
Your GI doctor should ensure that there is no eosinophilic esophagitis or gastritis. This has been seen. The expert on Peds GI and POTS is Gisela Chelimsky at Med College of Wisconsin.  
Julian M. Stewart MD, PhD
Professor of Pediatrics, Physiology and Medicine
Associate Chair of Pediatrics
Director, The Center for Hypotension
New York Medical College
Q:   I’m writing for our 14  y/o girl who was recently diagnosed with mild Dysautonomia. Recently she’s had an excessive number of headaches, as many as 4 times a week or as few as once in two weeks. They start as a dull ache in the morning that worsens with movement, but progresses to something like a migraine (though not quite as severe) if not treated with tylenol. A few months ago they did disappear for a couple of months completely.  My question is, is this normal for Dysautonomia? If this is dysautonomia related is there an a non pharmacological approach you can recommend? -Eleanor
A:   I’m not familiar with “mild dysautonomia” have no idea what this means. Migraine is your best bet.
Julian M. Stewart MD, PhD
Professor of Pediatrics, Physiology and Medicine
Associate Chair of Pediatrics
Director, The Center for Hypotension
New York Medical College
Have a question for DINET's Medical Advisors? 
email your questions to:  dinetandforuminfo@dinet.org
ashrapnell
As an individual with Autonomic Dysfunction, I know all too well that it is very important that I communicate effectively with my medical team.  However, I also know that I am one of those people who have difficulty asking for what I want or need from my doctor. Even though I am a healthcare professional, I find that when faced with the need to ask for something for myself, I avoid it like the plague. Even when I really could use some help, I still worry about being a bother to them.  I still feel that I am taking up the time they could be spending with another patient.  
I can’t help but think there are other people in this same situation of worrying more about the doctor’s time than their own needs. But it is critical that you find a way to comfortably talk to your healthcare professionals.  It’s possible to be polite and respectful and to still be assertive at the same time.  Of course, this is common sense, but it’s harder to do than it sounds when you are faced with a daunting appointment.
Without doubt, communication is crucial to good outcomes in healthcare. When people take an active role in their care, research shows they fare better -- in satisfaction and in how well treatments work. A passive patient is less likely to get well.  So, it is very important to be able to ask questions, voice concerns or be able to express it when you need extra support.
I am an active member of the Ehlers Danlos community in the UK, and I have witnessed friends and fellow community members struggle with similar issues because they are nervous about vocalising their concerns. I know many people who have left their doctor’s office in tears because they felt they weren’t being listened to or the appointment ended before they had gained the confidence to ask questions.
If you are worried about any aspect of your health (an ache or pain or symptoms) and your doctor dismisses it, find someone who will listen and help you with the concerns you have. It might be nothing (I know that my autonomic dysfunction is good at playing up for no good reason), but it might be something, so it’s best to be sure.
If your doctor recommends a treatment and you are unsure if you want to try it or not, ask for a second opinion, or even a third. Because although they may all agree with each other (or not) consensus between them may bring peace of mind.
Good doctors and healthcare professionals don’t feel threatened or offended when their patient asks for a second opinion, ordinarily they welcome the input. Good doctors want to be able to answer their patient’s questions to help them better understand what is or is about to happen to them. Within reason, a doctor should be willing to spend as much time as is necessary with their patient to ensure they are fully comfortable and understand their diagnosis and any potential treatments that might be available for them.
It is important that you feel you can trust your doctor. Without trust the relationship just isn’t going to work. You should be able to leave your appointment feeling satisfied that you were able to voice your concerns. And if your questions weren’t answered, be sure that either the doctor will look into them or that they provided you with the information you need to find the answers. Remember, the doctor won’t be able to answer everything – but the key is that they are willing to admit that and try to give you the guidance you need. Listen to your instincts. If someone or something makes you feel uncomfortable, seek help elsewhere. And speak up if you feel you have been inappropriately treated. If not for yourself, do it to save another patient from having a similarly bad experience.
Regardless of the rarity or severity of your condition, you must be your own advocate. Unless you are lucky and have a spouse, friend or family member who can attend every appointment with you, and be your voice, you must find your own.
If you continue to have the same symptoms or problem even after following what you and your doctor (mutually) agreed was a good treatment plan, ask about other options for treatment. Medicine is constantly evolving and the available options may have changed.
While it’s good to stay current on developments about your symptoms / condition, be careful about where you research information. For example, message boards or badly put together “informational” sites and random Internet searches are not necessarily the most sensible places to look. Using the internet is fine, but please ensure that you check the sources of the articles that you’re using. Internet information should generally be taken with a pinch of salt.  The same is true for advice from well-meaning friends and colleagues.  Always follow-up on any information you read or hear about by finding a credible source to back it up.
Ask questions, be heard, listen to your instincts. When in doubt, check it out. You’re worth it.
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Rachel Cox
A couple of years ago, I was at a function.  I was talking to a doctor acquaintance about life, the weather, and Dysautonomia, as you do. Well, when you are me, you do! I never, ever pass up an opportunity to answer questions about Dysautonomia.  Because the more people who know; the less people will suffer through years of mis-diagnosis and lack of understanding. If knowledge of this spreads through the community (both the medical community and the general community) there will be greater understanding towards people who suffer from it. It’s one of my missions. 
This guy, like many doctors, was a very intelligent person.  He asked probing questions, wanted to know who we’d seen and what the current situation was. He was sympathetic about the road we had travelled. He mused that ‘medicalised’ people like me were sometimes seen by doctors as a concern, especially when they look well.  Looking ‘well’ is a bit of a feature of Dysautonomia, so not something we can change. I was interested in his reference to ‘medicalised’ patients.  The term is not something I had encountered before, or heard from others about.  The attitude he spoke of was familiar to me, but not the expression.  Have you watched a doctor ‘think’ this before?
A patient who talks the talk? Who has been googling? (insert eye roll) Could it be a case of somatisation?
Somatisation is when people believe something is physically wrong with them for which there is no definitive evidence. Psychosomatic illness.  Hypochondriasis. There are a range of psychiatric disorders which follow this pattern.  Sadly, for people with Dysautonomias, many of the symptoms commonly present in somatic disorders are like our own.  Dizziness, chest pain, abdominal problems.  This is why, for many people with Dysautonomia, the road to diagnosis may have included earlier mis-diagnoses of anxiety, depression or somatisation before further investigations uncovered the facts.
Recently, the term ‘medical literacy’ came up in my readings.  It reminded me of that social encounter with the doctor and his word ‘medicalised’.  I thought I would look into it, because people like myself, who have been ill for a long time, do develop a different type of jargon than the average patient.  We use the correct medical terminology for things, because it is the most efficient way to explain what has been going on.  It seems far more practical to fast forward through all the translations between doctor speak and layman’s terms. Especially when consultation times are squeezed into just a few moments, a few moments to describe a month’s worth of symptoms. Also, have you noticed how many letters there are in medical words?  Phew, acronyms were invented for a reason!
We also talk with one another online. Among the patient community, the use of acronyms and medical jargon and abbreviations is commonplace.  So much so, that new members take a while to learn the lingo.  For the newly diagnosed Dysautonomiac, to become medically ‘literate’ means incorporating a knowledge of the autonomic nervous system, the various types of Dysautonomia, the range of treatments or medications used for various types (and how they work), recent research findings, the big players (in terms of doctors and medical institutions) and an understanding of the very wide range of symptoms that can be implicated in our conditions.
In New Zealand, ‘Health Literacy’ is the term we use in place of Medical Literacy (I believe the latter is an American term).  The Ministry of Health’s report into health literacy in this country defines it as:
-- Kickbusch et al., 2005; Kōrero Mārama, 2010
Just like literacy with language, being ‘literate’ in a medical, or health care, sense, means being able to respond to the data provided to you in an analytical way.  Literacy really means being able to make sense of information in context.  For people without science based or medical degrees, it can take some time!  For me, learning what was wrong with me felt like floundering in a morass of confusing information; I was at a loss to know how to even begin to ‘make sense’ of my diagnosis.  My cardiologist could tell me about what was happening to my heart, but this was only part of the bigger picture …and it didn’t include why it was happening to my heart.  My artsy brain wanted the philosophical lowdown! Over time, I have assimilated so much information.  There is more than just the condition to understand, there is also the wider health system, the politics of the consulting room, the process by which your needs are met and the differences between our health system and that of our fellow patients overseas.  I’ve seen countless conversations in various patient groups, where good information is redundant, simply because it doesn’t apply to the way our health system works here.  It might relate to my condition, but not to what is possible for my treatment.
These factors can be so daunting to a newly diagnosed Dysautonomiac, or anyone with a chronic, rare or invisible illness.  Developing this ‘literacy’ is crucial to your health plan. Simply having the jargon without the contextual understanding will compromise your care.  Particularly if doctors see you as a well-looking ‘somatic probability’ just because you can ‘talk the talk’.  Your use of medical terms must be accurately supported by a contextual understanding, analytical thinking… a fully literate comprehension of the subject at hand: your health.  This is a key component to getting the help you need from the professionals who are qualified to help you.
Here are four ways you can improve your health literacy:
Ask questions
Don’t be afraid to ask.  A specialist recently mentioned Occam’s Razor to me, assuming that I understood the reference.  I didn’t.  It’s a med school 101 reference.  I was confused, so I said “Can you explain?  I don’t understand …Occam’s what?”.  Occam was a monk a very long time ago who put forward a problem-solving principle: “among competing hypotheses, the one with the fewest assumptions should be selected. Other, more complicated solutions may ultimately prove correct, but—in the absence of certainty—the fewer assumptions that are made, the better”. (thanks Wikipedia for saying that better than I could remember it).  He was explaining why he believed I had one disorder over another.  It was the more likely choice.  The important thing to remember from this story is that asking is the short cut to the understanding you need to have, particularly in discussions with intellectual giants.  In my experience, most doctors like to be asked questions, particularly for clarification.
Read all about it
Use Google and Google Scholar, sign up for newsletters run by organisations who specialise in your diagnosis.  Use the excellent resource websites that are proliferating on the web, many have sections full of pertinent research documents and medical journal articles. Follow the Facebook pages of your not-for-profit organisations; timely information is often added, particularly after large symposiums where all the experts gather to discuss their ideas. Search for blogs written by people with your condition.  They will have access to information too.  Read it all, even if you don’t understand it.  If you like print copies, print things out, highlight, circle terms you don’t understand and find their definition.  If you read something scary, suspend your judgement about its pertinence to you until you have discussed it with your doctor, other patients in your support group, or until you have identified the relevance of what you are reading.  There is a great deal of pseudo-science out there that can trick unsuspecting readers.  Run it by someone with more knowledge than you before freaking out. 
Find your Tribe
Facebook and the internet abound with groups, forums and news boards that bring people with the same conditions together.  Look for groups with a strong set of user guidelines.   Read them and see if you agree with their code of conduct. There are some awful groups where bickering and mindless trolls like to stir the pot.  Avoid those.  If you find yourself in one, leave.  There are much better, well run groups of like-minded people out there.  It took me a long time to find a group that I consider to be responsibly administered.  When you find your ‘tribe’ you will learn a great deal more from them than from any other source. The experience of other patients is invaluable, particularly with a condition that is not common, or not commonly understood.  Finding your geographically relevant tribe is good too, because then all the information will relate to your experiences.
Delve into your Data
Get hold of your medical records.  In New Zealand, you can request these from your GP and your District Health Board.  Organise them into a file and refer to them. Examine your results and look for patterns.  Knowing (for example) what your iron levels or heart rate has been like over time means you can discuss these things knowledgeably with your doctor.  Knowing ‘thyself’ also helps you to see if there are any trends or significant changes in your condition.
Why does it matter?  If you, like me, suffer from a condition which is poorly understood by many in the health sector, being your own advocate, managing your own chronic condition and taking the leading role in your own health plan will be necessary.  Without strong health literacy, the likelihood that you will be able to take this responsibility on will be lower.  Not sure about that?  This is what the Ministry of Health had to say about people with poor health literacy:
The only person who will ever care about managing your health plan properly, is you.
Literally.
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Amy Keys
Some people honestly don’t remember a time when they were symptom free and healthy.  For others, a condition may have come on suddenly.  No matter how adaptable and flexible your personality may be, illness is guaranteed to be an adjustment.  Most likely it will include going through the grieving process.  Not only is that ok, but it is also necessary for a healthy mental state. 
Before I became ill, I had tummy problems off and on, and some pain, and issues with sleep, but I had good health overall and was living the busy life of a 29-year-old.  Enter dysautonomia.  When any form of dysautonomia is in full force it affects so many different parts and systems of the body.  Like most people newly diagnosed, my daily focus became taking medications, resting, drinking water, logging heart rate, measuring blood pressure, attending physical therapy and countless specialist appointments and testing on a regular basis.
With my health changing, I tried to remain positive and as symptom-free as possible.  I write a blog and I focused my writing on the importance of choosing to find joy.  While there is nothing at all wrong with working at a positive approach for coping with illness – attention also needs to be paid to the very natural emotions that come with loss.  I began to feel out of control in my life and questioned my worth and value.  Eventually I found a psychiatrist to talk to who helped me understand the grieving process and how important it is for mental health.   I had never considered that I would need to take the time to grieve for what “used to be” or that I would need to pay as much attention to my mental health as I do my physical.  Both are essential to having the balance and rational outlook on life that we all deserve.
There are five stages in the grieving process:
 denial  anger  bargaining  depression    acceptance.  There are no hard rules for how to go through these stages. Everyone goes through the process in their own way.  But there are also no shortcuts.  It is a natural desire to want to get on with life as soon as possible.  To try and jump to “acceptance” and skip the difficult steps in between.  But that only leads to suppressing the feelings of anger and depression that are natural and inevitable.  Jumping past the stages proves only to be counterproductive.
It’s ok to admit that you feel overwhelmed and a little bit scared. After all, every aspect of your life has changed.  It’s ok to be sad at times too.  It’s alright to worry about the future and how things will work out.  It’s normal to be mad or upset at times.  Without allowing yourself to face these feelings it is impossible to be able to move forward and cultivate a healthy mental state.  Another point to note, is that once this process is complete it doesn’t mean that you are done.  Grief does not unfold in fixed phases.  There may be specific days that remind you of something you used to do in a healthier time that you can’t do now.  The grief cycle will start over again multiple times throughout your life.  That is normal.
I am about a year and a half out from my hospital stay and diagnosis.  My very active lifestyle has changed significantly to a more sedentary one and with that has come some weight gain.   Little by little, I have cleaned out my dresser to remove clothes that are now two sizes too small.  I’m proud of myself for being brave enough to work on this project.  But, to be completely honest, I’ve cleaned out every drawer but one: my work clothes drawer.  I miss my job terribly and it’s just too difficult for me to get rid of all of my work clothes right now.  The truth is that if I was miraculously cured tomorrow and re-hired the next day, none of those clothes would even fit me.  It’s not the clothes that I am hanging on to, it is the memory of the “old” me. The pre-dysautonomia “me”.  I will clean out that drawer eventually, but it will be on my time.  Because this is all a part of grieving and all our journeys are different.
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edriscoll

POTS Links

By edriscoll, in POTS,

Comprehensive information on POTS:
Postural Tachycardia Syndrome, Beyond Orthostatic Intolerance. Dr. Satish Raj
http://link.springer.com/article/10.1007/s11910-015-0583-8
Anaesthesia
Postural orthostatic tachycardia syndrome: anesthetic implications in the obstetric patient:
http://www.ncbi.nlm.nih.gov/pubmed/17179264?dopt=AbstractPlus
Anaesthetic management of a parturient with the postural orthostatic tachycardia syndrome: a case report:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16698864&query_hl=1&itool=pubmed_docsum
Preoperative considerations in a patient with orthostatic intolerance syndrome:
http://journals.lww.com/anesthesiology/pages/articleviewer.aspx?year=2000&issue=08000&article=00041&type=fulltext
Autonomic dysfunction - anaesthetic management
http://www.anaesthetist.com/anaes/patient/ans.htm
Baroreflex
Abnormal baroreflex responses in patients with idiopathic orthostatic intolerance:
http://www.ncf-net.org/library/freeman-OI-2000.htm
Baroreflex control of muscle sympathetic nerve activity in postural orthostatic tachycardia syndrome:
http://ajpheart.physiology.org/cgi/content/full/289/3/H1226 
Catecholamines
The broader view: catecholamine abnormalities:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=
Retrieve&db=PubMed&list_uids=12102462&dopt=Abstract
Endothelial NO Synthase Polymorphisms and Postural Tachycardia Syndrome:
http://pt.wkhealth.com/pt/re/dyslipidaemia/pdfhandler.00004268-200511000-00008.pdf;jsessionid=LnhQwG11yV0fKLVmTywMzWdZLQfyhxRq1HLnJ9
1n7vhQ2rxnX4yv!-2048123402!181195628!8091!-1
Chiari malformation/spinal cord involvement
Watch a presentation by physicians at The Chiari Institute and NIH as they discuss the possible connection between POTS, Ehlers-Danlos syndrome and Chiari Malformation: (click on the Ehlers-Danlos National Foundation link)
http://www.thechiariinstitute.com/
Cerebral syncope in a patient with spinal cord injury:
http://www.ncbi.nlm.nih.gov/pubmed/11990670?dopt=Abstract
Chiari Malformation:
http://www.dizziness-and-balance.com/disorders/central/cerebellar/chiari.html
Chiari, fibromyalgia, gastrointestinal problems, gulf war syndrome, multiple chemical sensitivities/environmental illness, orthostatic intolerance:
http://www.cfids.org/about-cfids/orthostatic-intolerance.asp
Sinus arrhythmia and pupil size in Chiari I malformation: evidence of autonomic dysfunction:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=
Retrieve&db=PubMed&list_uids=8314116&dopt=Abstract
The Chiari Institute:
http://www.chiariinstitute.com/chiari_malformation.html
Autonomic nervous system disorders in 230 cases of basilar impression and arnold-chiari deformity:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=1494411&dopt=Abstract
Chiari I malformation as a cause of orthostatic intolerance symptoms: a media myth?
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11705431&dopt=Abstract
No increased herniation of the cerebellar tonsils in a group of patients with orthostatic intolerance:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12598952&dopt=Abstract
Orthostatic intolerance and syncope associated with Chiari type I malformation:
http://jnnp.bmj.com/cgi/content/full/76/7/1034
Orthostatic hypotension following spinal cord injury: understanding clinical pathophysiology:
http://www.nature.com/sc/journal/v44/n6/full/3101855a.html
Chronic fatigue syndrome
The importance of orthostatic intolerance in the chronic fatigue syndrome:
http://www.ncf-net.org/library/orthostaticreview.htm
MEDLINEplus health information on chronic fatigue syndrome:
http://www.nlm.nih.gov/medlineplus/chronicfatiguesyndrome.html
Chronic fatigue syndrome: A hypothesis focusing on the autonomic nervous system:
http://cs.portlandpress.com/cs/096/0117/0960117.pdf
Dental Considerations
Postural Orthostatic Tachycardia Syndrome: Dental Treatment Considerations by John K. Brooks, DDS; Laurie A. P. Francis, RDH: 
http://jada.ada.org/cgi/reprint/137/4/488.pdf
Diabetes and autonomic neuropathy
Chronic administration of pharmacologic doses of vitamin E improves the cardiac autonomic nervous system in patients with type 2 diabetes:
http://www.ajcn.org/cgi/content/full/73/6/1052
Value of scintigraphy using meta-iodo-benzyl-guanidine (MIBG) in the investigation of cardiac autonomic neuropathy in diabetic patients. Comparison with Ewing tests:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=9404408&dopt=Abstract
Abnormal cardiovascular reflexes in juvenile diabetics as preclinical signs of autonomic neuropathy:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=7346309&dopt=Abstract
Response of the autonomous nervous system of the heart in diabetes mellitus:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=529862&dopt=Abstract
MEDLINEplus health information on diabetes:
http://www.nlm.nih.gov/medlineplus/diabetes.html
Disability
Blood volume perturbations in the postural tachycardia syndrome:
PubMed

Quality of life in patients with postural tachycardia syndrome:
http://www.ncbi.nlm.nih.gov/pubmed/12059122 
Ehlers-Danlos Syndrome (Joint Hypermobility Syndrome)
Ehlers Danlos Syndrome. University of Washington, Seattle:
http://www.orthop.washington.edu/uw/ehlersdanlos/tabID__3376/ItemID__32/PageID__1/Articles/Default.aspx
Ehlers-Danlos National Foundation:
http://www.ednf.org/
Ehlers-Danlos syndrome, classical type:
http://ghr.nlm.nih.gov/condition=ehlersdanlossyndromeclassicaltype 
Ehlers-Danlos syndrome, hypermobility type:
http://ghr.nlm.nih.gov/condition=ehlersdanlossyndromehypermobilitytype
Joint hypermobility syndrome: a complex constellation of symptoms:
http://www.reumatologia-dr-bravo.cl/para%20medicos/HIPERLAXITUD/
www_jointandbone_org_RODGRAH.htm
Connective tissue disorders with spontaneous spinal cerebrospinal fluid leaks and intracranial
hypotension: a prospective study:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=
Retrieve&db=PubMed&list_uids=14683542&dopt=Abstract
Association Between Joint Hypermobility Syndrome and Panic Disorder:
http://ajp.psychiatryonline.org/cgi/content/full/155/11/1578
Is joint hypermobility related to anxiety in a nonclinical population also?
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15345789
Neurological manifestations of Ehlers-Danlos syndrome:
http://www.neurologyindia.com/article.asp?issn=0028-3886;year=2005;volume=53;issue=3;spage=339;epage=341;aulast=Mathew
Your eyes and Ehlers-Danlos Syndrome:
http://www.totaleyecare.com/ocular-complication-ehlers-danlos-syndrome-1.html?_ga=1.14621751.1418931888.1390611040
Exercise
The prevalence and significance of post-exercise (postural) hypotension in ultramarathon runners:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8614313&dopt=Abstract
Fainting
Certain cardiovascular indices predict syncope in the postural tachycardia syndrome:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8902319&dopt=Abstract
Fibromyalgia
National Fibromyalgia Research Association:
http://www.nfra.net/
MEDLINEplus health information on fibromyalgia:
http://www.nlm.nih.gov/medlineplus/fibromyalgia.html
Elusive syndromes: Treating the biologic basis of fibromyalgia and related syndromes:
http://www.ccjm.org/pdffiles/Clauw1001.pdf
Hormones
Influence of the menstrual cycle on sympathetic activity, baroreflex sensitivity, and vascular
transduction in young women:
http://circ.ahajournals.org/cgi/content/full/101/8/862
Hypovolemia
Hypovolemia in syncope and orthostatic intolerance role of the renin-angiotensin system:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=9274896&dopt=Abstract
Is this patient hypovolemic?
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10086438&dopt=Abstract
Idiopathic hypovolemia: a self perpetuating autonomic dysfunction?
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=9869552&dopt=Abstract
Lipodystrophy
Partial lipodystrophy in a boy:
http://www.indianpediatrics.net/jan2000/case3.htm
Magnesium
Erythrocyte magnesium in symptomatic patients with primary mitral valve prolapse: relationship to symptoms, mitral leaflet thickness, joint hypermobility and autonomic regulation:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=1844553&dopt=Abstract
Cardiovascular consequences of magnesium deficiency and loss: pathogenesis, prevalence and manifestations. Magnesium and chloride loss in refractory potassium repletion:
http://www.mgwater.com/cardio.shtml
Magnesium and therapeutics:
http://www.mgwater.com/dur01.shtml
Magnesium deficiency in the pathogenesis of mitral valve prolapse:
http://www.mdheal.org/magnesiu.htm
Review and hypothesis: Might patients with the chronic fatigue syndrome have latent tetany
of magnesium deficiency:
http://www.mgwater.com/clmd.shtml
The magnesium web site - Links to over 300 articles discussing magnesium and magnesium
deficiency:
http://www.mgwater.com/index.shtml

Medications/Treatments
Web Site for Cardiovascular and Autonomic Pharmacology:
http://courses.washington.edu/chat543/cvans/
Drug protects against nervous system failure:
http://www.news.harvard.edu/gazette/1997/04.17/DrugProtectsAga.html

Treatment of orthostatic hypotension with erythropoietin:
http://content.nejm.org/cgi/content/absract/329/9/611

Effects of long-term clonidine administration on the hemodynamic and neuroendocrine postural
responses of patients with dysautonomia:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=6295714&dopt=Abstract
Cardiac vagal response to water ingestion in normal human subjects:
http://cs.portlandpress.com/cs/103/0157/cs1030157.htm
Medicinal uses of licorice through the millennia: the good and plenty of it:
http://fkogserver.bmc.uu.se/course/B/Liquorice.pdf
Licorice root. A natural sweetener and an important ingredient in Chinese medicine:
http://www.iupac.org/publications/pac/2002/pdf/7407x1189.pdf
Licking latency with licorice root:
http://www.jci.org/cgi/content/full/115/3/591
Adverse drug reactions related to drugs used in orthostatic hypotension: a prospective and systematic pharmacovigilance study in France:
http://www.ncbi.nlm.nih.gov/pubmed/15991040?dopt=Abstract
Mitochondrial disease and dysautonomia
Mitochondrial cytopathy in adults: what we know so far:
http://www.ccjm.org/pdffiles/COHEN701.PDF

Mitochondrial encephalomyopathies presenting with features of autonomic and visceral dysfunction:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=
Retrieve&db=PubMed&list_uids=8736411&dopt=Abstract
A case of mitochondrial encephalomyopathy with peripheral neuropathy and autonomic symptoms:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=
Retrieve&db=PubMed&list_uids=7605684&dopt=Abstract
Neurologic presentations of mitochondrial disorders
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=
Retrieve&db=PubMed&list_uids=10641610&dopt=Abstract
Mitral valve prolapse
The phenomenon of dysautonomia and mitral valve prolapse:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=
Retrieve&db=PubMed&list_uids=8003350&dopt=Abstract
Exercise response in young women with mitral valve prolapse:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=
Retrieve&db=PubMed&list_uids=2805839&dopt=Abstract
Multiple system atrophy/shy-drager syndrome
SDS/MSA support group:
http://www.shy-drager.org/
Web site full of links to other sites about MSA/SDS:
 http://www.corwin-millman.com/shy-drager/links.html

Norepinephrine transporter
Genetic or acquired deficits in the norepinephrine transporter: current understanding of clinical
implications:
http://journals.cambridge.org/action/displayAbstract?fromPage=online&aid=168695
Orthostatic intolerance is not necessarily related to a specific mutation (Ala457Pro) in the human norepinephrine transporter gene:
http://www.ncbi.nlm.nih.gov/pubmed/12589229?dopt=Abstract
Phenotypical evidence for a gender difference in cardiac norepinephrine transporter function:
http://ajpregu.physiology.org/cgi/content/full/286/5/R851
The Nutcracker phenomenon
Does severe nutcracker phenomenon cause pediatric chronic fatigue?
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=
Retrieve&db=PubMed&list_uids=10749295&dopt=Abstract
Nutcracker phenomenon demonstrated by three-dimensional computed tomography:
http://www.medonline.com.br/nutpn.pdf
Diagnosis of the nutcracker phenomenon using two-dimensional ultrasonography:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=
Retrieve&db=PubMed&list_uids=9491284&dopt=Abstract
Magnetic resonance angiography in nutcracker phenomenon:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=
Retrieve&db=PubMed&list_uids=10230562&dopt=Abstract
An effective "transluminal balloon angioplasty" for pediatric chronic fatigue syndrome with nutcracker phenomenon:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=
Retrieve&db=PubMed&list_uids=10661488&dopt=Abstract
Nutcracker phenomenon treated with left renal vein transposition: a case report:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=
Retrieve&db=PubMed&list_uids=10331171&dopt=Abstract
The nutcracker syndrome: its role in the pelvic venous disorders:
http://www.ncbi.nlm.nih.gov/pubmed/11700480?dopt=Abstract
Outlook
Orthostatic hypotension in organic dementia: relationship between blood pressure, cortical blood flow and symptoms:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=
Retrieve&db=PubMed&list_uids=8924753&dopt=Abstract
Neurocardiovascular instability, hypotensive episodes, and MRI lesions in neurodegenerative dementia:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=
Retrieve&db=PubMed&list_uids=10818535&dopt=Abstract
Orthostatic hypotension in Alzheimer's disease: result or cause of brain dysfunction?
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=
Retrieve&db=PubMed&list_uids=10476310&dopt=Abstract
Orthostatic hypotension as a risk factor for stroke:
http://stroke.ahajournals.org/cgi/pmidlookup?view=full&pmid=11022055
Orthostatic hypotension
Orthostatic hypotension:
http://www.dizziness-and-balance.com/disorders/medical/orthostatic.html
Cardiovascular Causes of Falls by Brian J. Carey and John F. Potter:
http://ageing.oxfordjournals.org/cgi/reprint/30/suppl_4/19.pdf
Orthostatic Hypotension by Bradley JG, Davis KA.
http://www.aafp.org/afp/20031215/2393.pdf
Paraneoplastic syndromes
Immunological and endocrinological abnormalities in paraneoplastic disorders with involvement of the autonomic nervous system:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=
Retrieve&db=PubMed&list_uids=9241563&dopt=Abstract
Pheochromocytoma
Biochemical diagnosis of pheochromocytoma:
http://www.angelfire.com/hi/Pheochromocytoma/biodiag.html
MEDLINEplus health information on pheochromocytoma:
http://www.nlm.nih.gov/medlineplus/pheochromocytoma.html
Germ-line mutations in nonsyndromic pheochromocytoma:
http://content.nejm.org/cgi/content/abstract/346/19/1459
Porphyria
Diagnosis and management of porphyria:
http://bmj.bmjjournals.com/cgi/content/full/320/7250/1647
Postural orthostatic tachycardia syndrome/orthostatic intolerance (General Information Links)
Management of Postural Tachycardia Syndrome, Inappropriate Sinus Tachycardia and Vasovagal Syncope, Dr.'s Satish Raj & Robert Sheldon  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5013178/ 
Medscape: Postural Tachycardia Syndrome:
http://www.medscape.com/viewarticle/705183
The Postural Tachycardia Syndrome (POTS): Pathophysiology, Diagnosis & Management
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/
Orthostatic intolerance:
http://www.nymc.edu/fhp/centers/syncope/chronic_orthostatic_intolerance.htm
A review of the classification, diagnosis, and management of autonomic dysfunction syndromes associated with orthostatic intolerance:
http://publicacoes.cardiol.br/abc/2000/7406/74060008i.pdf
Clinical disorders of the autonomic nervous system associated with orthostatic intolerance: an overview of classification, clinical evaluation and management:
http://www.ndrf.org/PDF%20Files/disorders.PDF
The neuropathic postural tachycardia syndrome:
http://content.nejm.org/cgi/content/abstract/343/14/1008
Hereditary dysautonomias: Current knowledge and collaborations for the future:
Oct 3, 2002 http://www.familialdysautonomia.org/NIH_OCT3.pdf
Oct. 4 2002 http://www.familialdysautonomia.org/NIH_OCT4.pdf
Effects of head-up tilting on baroreceptor control in subjects with different tolerances to orthostatic stress:
http://cs.portlandpress.com/cs/103/0221/cs1030221.htm
Vascular perturbations in the chronic orthostatic intolerance of the postural orthostatic tachycardia syndrome:
http://jap.physiology.org/cgi/content/full/89/4/1505
American Autonomic Society: (be sure to visit the autonomic news section for information on the latest research)
www.americanautonomicsociety.org/
Postural tachycardia syndrome and anxiety disorders:
http://jnnp.bmj.com/content/80/3/339.abstract/reply#jnnp_el_4620
Pregnancy
Postpartum Postural Orthostatic Tachycardia Syndrome in a Patient with the Joint Hypermobility Syndrome:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2778448/
Postural orthostatic tachycardia syndrome: anesthetic implications in the obstetric patient:
http://www.ncbi.nlm.nih.gov/pubmed/17179264?dopt=%20AbstractPlus
Research Studies
ClinicalTrials.gov
http://www.clinicaltrials.gov/
DINET studies page:
http://dinet.org/index.php/information-resources/studies
NDRF clinical research page:
http://www.ndrf.org/dysautonomia_clinic_resea.htm
Support
12 More Pages:
http://www.12morepages.com
STARS US (Syncope Trust and Reflex Anoxic Seizures)
http://www.stars-us.org/
STARS - syncope trust and reflex anoxic seizures:
www.stars.org.uk
National Dysautonomia Research Foundation:
www.ndrf.org
Dysautonomia Youth Network of America (DYNA) (devoted to youth with dysautonomia)
http://www.dynainc.org/
Syringomyelia
NINDS syringomyelia information page:
http://www.ninds.nih.gov/health_and_medical/
disorders/syringomyelia_short.htm
Postural tachycardia syndrome in syringomyelia: response to fludrocortisone and beta-blockers:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=
Retrieve&db=PubMed&list_uids=11710800&dopt=Abstract
Involvement of the autonomic nervous system in patients with syringomyelia - a study with the sympathetic skin response:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=
Retrieve&db=PubMed&list_uids=8654321&dopt=Abstract
Hyperhidrosis as the presenting symptom in post-traumatic syringomyelgia: (hyperhidrosis is excessive sweating)
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=
Retrieve&db=PubMed&list_uids=8090551&dopt=Abstract
Cardiovascular reflexes in syringomyelia:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=
Retrieve&db=PubMed&list_uids=7139257&dopt=Abstract
MEDLINEplus health information on syringomyelia:
http://www.nlm.nih.gov/medlineplus/syringomyelia.html
Tests
The fainting patient: value of the head-upright tilt-table test in adult patients with orthostatic intolerance:
http://www.cmaj.ca/cgi/content/full/164/3/372
Autonomic diseases: clinical features and laboratory evaluation:
http://jnnp.bmjjournals.com/cgi/content/full/74/suppl_3/iii31
Syncope Care & Treatment:
http://my.clevelandclinic.org/heart/disorders/electric/syncope.aspx
Videos 
The Dysautonomia Information Network presents the first full length documentary about Postural Orthostatic Tachycardia Syndrome.
http://dinet.org/index.php/information-resources/pots-place/pots-video
POTS - Mayo Clinic:
http://www.youtube.com/watch?v=CatWlEGPqG4&feature=related
POTS syndrome - Mayo Clinic:
http://www.youtube.com/watch?v=iJ9bv7jx-Ls&feature=channel
The Woman who Kept Falling Down - Mystery Diagnosis 
 
 
edriscoll
Please keep in mind that recent clinical findings will not be included in earlier publications...
 
Cheltenham Syncope Clinic:
http://www.syncope.co.uk/
Vasovagal Syncope in 2016: The Current State of the Faint, Dr. Raj et al
http://www.openaccessjournals.com/articles/vasovagal-syncope-in-2016-the-current-state-of-the-faint.html
All that shakes is not epilepsy YM Hart Consultant Neurologist, Royal Victoria Infirmary, Newcastle upon Tyne, UK
http://www.rcpe.ac.uk/journal/issue/journal_42_2/hart.pdf
Syncope (NMS) in Adolescents by Martin A. G. Lewin:
http://hpps.kbsplit.hr/hpps-2003/pdf/10.pdf
Neurally Mediated Syncope by Munir Zaqqa, MD and Ali Massumi, MD, FACC:
http://www.pubmedcentral.gov/articlerender.fcgi?tool=pmcentrez&artid=101078
The Elusive Pathophysiology of Neurally Mediated Syncope by Rogelio Mosqueda-Garcia, Raffaello Furlan, Jens Tank and Roxana Fernandez-Violante:
http://circ.ahajournals.org/cgi/content/full/102/23/2898
Cardiovascular Causes of Falls by Brian J. Carey and John F. Potter:
http://ageing.oxfordjournals.org/cgi/reprint/30/suppl_4/19.pdf

Mechanisms
Cerebral Vasoconstriction in Vasovagal Syncope: Any Link With Symptoms? by Alfonso Lagi, Simone Cencetti, Vanni Corsoni, Dimitrios Georgiadis and Stefano Bacalli:
http://circ.ahajournals.org/cgi/content/full/104/22/2694
 
Treatment
Randomised Clinical Trials of Drug Therapy for Vasovagal Syncope by M. Brignole
http://www.escardio.org/communities/councils/ccp/e-journal/volume2/Pages/vol2no27.aspx
Pacemaker for Vasovagal Syncope: Good for Few by M. Brignole:
http://www.escardio.org/communities/councils/ccp/e-journal/volume2/pages/vol2_no23.aspx
Management of Recurrent Vasovagal Syncope by Means of Isometric Counterpressure Manoeuvres by M. Brignole:
http://www.escardio.org/communities/councils/ccp/e-journal/volume2/Pages/Vol2_no12.aspx
Neurocardiogenic Syncope Due to Recurrent Tonsillar Carcinoma: Successful Treatment by Dual Chamber Cardiac Pacing with Rate Hysteresis by Yue A. M., and Thomas, R. D.:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11877927&dopt=Abstract
Usefulness of a Tilt Training Program for the Prevention of Refractory Neurocardiogenic Syncope in Adolescents: A Controlled Study byEnrico Di Girolamo, Cesare Di Iorio, Luigi Leonzio, Panfilo Sabatini and
Antonio Barsotti:
http://circ.ahajournals.org/cgi/content/full/100/17/1798
Beta-Blockers no Better than Placebo in the Treatment of Vasovagal Syncope:
http://www.jfponline.com/Pages.asp?AID=1341
The Usefulness of Tilt Testing with an Intravenous Beta-Blocker in Assessing the Efficacy of Long-Term Therapy in Patients with Vasovagal Syncope byGrzegorz Gielerak, Karol Makowski, Ewa Dłużniewska, Alicja Stec and Marian Cholewa:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=14560324&dopt=Abstract
edriscoll
Please keep in mind that recent clinical findings will not be included in earlier publications.
General Information
Multiple System Atrophy, Dr. Andre Diedrich:
http://emedicine.medscape.com/article/1154583-overview
Multiple System Atrophy: Medline Plus.gov: https://medlineplus.gov/ency/article/000757.htm
Multiple System Atrophy by Laurie Swan and Jerome Dupont:
http://www.ptjournal.org/cgi/reprint/79/5/488
Primary Autonomic Failure: Three Clinical Presentations of One Disease? by Horacio Kaufmann:
http://www.mssm.edu/neurology/autodis/disorders/parkinson/Primary.pdf
Clinical Characteristics of Patients with Multiple System Atrophy in Singapore by RDG Jamora, A Gupta, AKY Tan & LCS Tan:
http://www.annals.edu.sg/pdf/34VolNo9200510/V34N9p553.pdf
Hypotension and/or hypertension
The recommendations of a consensus panel for the screening, diagnosis, and treatment of neurogenic orthostatic hypotension and associated supine hypertension, by Gibbons, C.H., Schmidt, P., Biaggioni, I. et al. J Neurol (2017) https://link.springer.com/article/10.1007/s00415-016-8375-x/fulltext.html
Sympathetically Mediated Hypertension in Autonomic Failure by John R. Shannon, Jens Jordan, Andre Diedrich, Bojan Pohar, Bonnie K. Black,
David Robertson and Italo Biaggioni:
http://circ.ahajournals.org/cgi/content/full/101/23/2710
Impairment
Neuropsychological functions in progressive supranuclear palsy, multiple system atrophy and Parkinson's disease:
http://www.neurologyindia.com/article.asp?issn=0028-3886;year=2006;volume=54;issue=3;spage=268;epage=272;aulast=Krishnan
Raynaud's Phenomenon
Raynaud's Phenomenon after Sympathetic Denervation in Patients with Primary Autonomic Failure: Questionnaire Survey by Rajeev Mallipeddi and Christopher J Mathias:
http://bmj.com/cgi/content/full/316/7129/438
Tests/Detection
REM Sleep Behaviour Disorder Differentiates Pure Autonomic Failure from Multiple System Atrophy with Autonomic Failure by Giuseppe Plazzi, Pietro Cortelli, Pasquale Montagna, Alessandro De Monte, Raffaella Corsini, Manuela Contin, Federica Provini, Giulia Pierangeli, Elio Lugaresi:
http://jnnp.bmjjournals.com/cgi/content/full/64/5/683
Multiple System Atrophy Presenting as Central Sleep Apnoea by L.J. Cormican, S. Higgins, A.C. Davidson, R. Howard and A.J. Williams:
http://erj.ersjournals.com/cgi/reprint/24/2/323.pdf#search
=%22multiple%20system%20atrophy%20filetype%3Apdf%22
Treatment
Diagnosis and Treatment of Multiple System Atrophy: An Update by Gregor Wenning and Felix Geser:
http://www.acnr.co.uk/pdfs/volume3issue6/v3i6reviewart1.pdf#
search=%22multiple%20system%20atrophy%20filetype%3Apdf%22
The Pressor Response to Water Drinking in Humans by Jens Jordan, John R. Shannon, Bonnie K. Black, Yasmine Ali, Mary Farley; Fernando Costa, Andre Diedrich, Rose Marie Robertson, Italo Biaggioni and
David Robertson:
http://circ.ahajournals.org/cgi/content/full/101/5/504
The Hypertension of Autonomic Failure and its Treatment by John Shannon, Jens Jordan, Fernando Costa, Rose Marie Robertson, and Italo Biaggioni:
http://hyper.ahajournals.org/cgi/content/full/30/5/1062
The natural history of multiple system atrophy: a prospective European cohort study, Dr. Christopher Mathias et al:   http://www.thelancet.com/journals/laneur/article/PIIS1474-4422(12)70327-7/fulltext
Support Groups
The Multiple System Atrophy Coalition
8311 Brier Creek Parkway
Suite 105-434
Raleigh,  NC  27617
Tel: 1-866-737-5999
www.multiple-system-atrophy.org
contacts:
Judy Biedenharn jbiedenharn@msacoalition.org
Vera James vjames@msacoalition.org
Pam Bower pbower@msacoalition.org
Carol Langer clanger@msacoalition.org
Don Crouse dcrouse@msacoalition.org
edriscoll

Pure Autonomic Failure Links

By edriscoll, in PAF,

Please keep in mind that recent clinical findings will not be included in earlier publications.
General Information 
Alternative Names: \Shy-Drager syndrome; Neurologic orthostatic hypotension; Shy-McGee-Drager syndrome; Parkinson plus syndrome; MSA-P; MSA-C
Vanderbilt University Autonomic Dysfunction Center:
http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=4790
A Review of the Classification, Diagnosis, and Management of Autonomic Dysfunction Syndromes Associated with Orthostatic Intolerance by Blair P. Grubb and Sergio do Carmo Jorge:
http://publicacoes.cardiol.br/abc/2000/7406/74060008i.pdf
The Natural History of Pure Autonomic Failure: a U.S. Prospective Cohort, Dr. Kaufman, Dr. Low et al: https://www.ncbi.nlm.nih.gov/pubmed/28093795
Identification of a Renin Threshold and Its Relationship to Salt Intake in a Patient With Pure Autonomic Failure by Henriette Hohenbleicher; Fabian Klosterman; Ulrike Schorr; Sepp Seyfert; Pontus B. Persson and Arya M. Sharma:
http://hyper.ahajournals.org/cgi/content/full/30/5/1068
Orthostatic Tolerance, Cerebral Oxygenation, and Blood Velocity in Humans With Sympathetic Failure by Harms M. P., Colier W. N., Wieling W., Lenders J. W., Secher N. H., van Lieshout J. J.:
http://stroke.ahajournals.org/cgi/content/full/31/7/1608
Causes/Mechanisms
The Distribution of Lewy Bodies in Pure Autonomic Failure: Autopsy Findings and Review of the Literature by K. Hague, P. Lento, S. Morgello, S. Laro and H. Kaufmann:
http://www.springerlink.com/content/cm7nrxyrh9lru35j/fulltext.pdf?page=1
Hypotension and/or Hypertension
Stress induced hypotension in pure autonomic failure by R D Thijs and J G van Dijk:
http://jnnp.bmjjournals.com/cgi/content/abstract/77/4/552
Orthostatic Hypotension by Bradley JG, Davis KA.
http://www.aafp.org/afp/20031215/2393.pdf
Autoregulation of Cerebral Blood Flow in Orthostatic Hypotension by Novak V., Novak P., Spies J. M., Low P. A.:
http://stroke.ahajournals.org/cgi/content/full/29/1/104
Neck and other muscle pains in autonomic failure: their association with orthostatic hypotension by K M Bleasdale-Barr and C J Mathias:
http://www.pubmedcentral.nih.gov/picrender.fcgi?artid=1296807&blobtype=pdf
Cognitive functioning in orthostatic hypotension due to pure autonomic failure by Heims HC, Critchley HD, Martin NH, Jager HR, Mathias, CJ, Cipolotti L.:
http://www.ncbi.nlm.nih.gov/pubmed/16683070
The Hypertension of Autonomic Failure and it's Treatment, Dr. Bioganni, Dr. Rose Marie Roberson et all:
http://hyper.ahajournals.org/content/30/5/1062.full
Sympathetically Mediated Hypertension in Autonomic Failure by John R. Shannon, Jens Jordan, Andre Diedrich, Bojan Pohar, Bonnie K. Black, David Robertson, Italo Biaggioni:
http://circ.ahajournals.org/cgi/content/abstract/101/23/2710?ck=nck
Vasopressin and Blood Pressure in Humans by Jens Jordan and Jens Tank:
http://hyper.ahajournals.org/cgi/content/full/36/6/e3
Outlook
Progression and prognosis in pure autonomic failure (PAF): comparison with multiple system atrophy by N Mabuchi, M Hirayama, Y Koike, H Watanabe, H Ito, R Kobayashi, K Hamada and G Sobue:
http://www.pubmedcentral.nih.gov/picrender.fcgi?artid=1739727&blobtype=pdf
Sleep
A Sound Night's Rest may do no good in Autonomic Failure! by Christopher J. Mathias:
http://cs.portlandpress.co.uk/cs/101/0619/1010619.pdf 
Tests
Hormonal and cardiovascular reflex assessment in a female patient with pure autonomic failure by Lopes HF, Consolim-Colombo FM, Hachul D, Carvalho ME, Pileggi F, Silva HB:
http://www.scielo.br/pdf/abc/v75n3/2870.pdf
Treatments
The Pressor Response to Water Drinking in Humans by Jens Jordan, John R. Shannon, Bonnie K. Black, Yasmine Ali, Mary Farley; Fernando Costa, Andre Diedrich, Rose Marie Robertson, Italo Biaggioni and
David Robertson:
http://circ.ahajournals.org/cgi/content/full/101/5/504 
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