I have attempted to clarify the forum rules

[Guest Julia59]

I just wanted to chime in a bit here. I think this is an excellent forum, and I think the moderators have done an excellent job handling the situation.

Michelle, I remember talking with you, when you came to a few support group meetings and you told me you were making this web site----so i've been with you from the beginning, and I think its a job very well done.

At one time or another some things are bound to happen---as this is a learning process for everyone. There will be a kink from time to time, but in all my years on earth I can tell you this particular situation has been handled with the utmost care and consideration of all the members of this site.

The professionalism of all who run this website is to be applauded.

Thank You for making this place of refuge for us.

Julie :0)

[KathyP]

Hello Everyone, and especially to Michelle;

I am a fairly new member, with only a few months under my belt at this site. If I may, I would like to put my own 2 cents on this subject. I don't have hundreds of posts logged here. I try hard not to get off topic. As far as religion goes, I don't feel that it is too personal to share with others when and where it is appropriate. (I totally agree that this is NOT the place).

BUT: I hope I DO NOT offend anyone here by saying this!

This is the DYSAUTONOMIA INFORMATION NETWORK. When I came to this site I was looking for answers. I was feeling horrible, my symptoms were ruining my life and my doctors didn't know much about this sydrome. I was looking for alternative things to take back to my doctor to discuss and try.

I have been to other sites. I must say, if this were a Dysautonomia Support Forum it would be the best on the web. But this site, as it is stated in the membership agreement is an Information site.

I am saying this because there are alot of people who have probably logged on, having the same problems as we all do, only to see threads that have nothing to do with Dysautonomia or enough information geared toward their specific situation. Please understand, no offense to anyone, I came to this site looking for information relevant to the problems I was having in conjunction with my symptoms.

I have to be honest here, there were many times that I answered threads that were for support or off topic. But, when I started visiting here I read so many different medical terms I thought were all connected to Dysautonomia. One word that confused me the most was POTS (or the POTS hole). I thought that was the tachycardia I had, but later found out it wasn't. At first I thought I must have it because it was so dominant with this site that you didn't have Dysautonomia if you didn't have POTS. I was beginning to think this was the POTS information and support site. DYSAUTONOMIA has many many faces. Not personally but medically. POTS (which I now know is Postural Orthstatic Tachycardia Syndrome) is only one aspect of Dysautonomia. I have IST - which is Inappropriate Sinus Tachycardia. These 2 only scratch the surface of all of the Tachycardias and Palpitations associated with Dysautonomia. Other factors also include: VasoVagal Depressor Syndrome, NeuroCardiogenic Syncope, Irritable Bowel Syndrome, Gastroesophageal Reflux Disease, Polysystic Ovarian Sydrome, Fibromyalgia, not to mention all of the Phobias as well as panic and anxiety disorders. All of this is what a Dysfunction of the Autonomic Nervous System is about.

With all of this being said, I can totally understand why there is an important need to keep this web site on track. Michelle: You have your work cut out for you and I respect you for it. This site is for the purpose of information on Dysautonomia. It has to be open to EVERYONE diagnosed with this syndrome. That has to include EVERYONE of race, color, creed, as well as male and female. I know there is alot of men out there who have it but there aren't many here that I have seen in this forum. Usually on forums the first page is read to find out what the site is about. If you can't find answers to what you are looking for then you leave and don't come back.

I guess I feel I need to say this because I understand the need for the information and sharing it with others. Please, Michelle, correct me if I am wrong!! I looked into this site for information about Dysautonomia so I can discuss alternatives with my doctor. What works and what doesn't work. To see if anyone here has tried anything new that has helped them or what reactions sensitive medications have on this syndrome.

There are many warm, caring and understanding people here that want to help. I would never dispute that. I don't think it was any one person who did anything wrong. The objective may have been getting too personal. I wouldn't want to say the wrong thing to a very sensitive person because they are having a bad day. That is not what this site should be about. Yes, I do think it is wonderful when someone passes a great milestone, it gives us all hope. But, I feel that should be shared when someone comes to this site with hopelessness and feels there is nothing positive to their suffering. Also, eventhough I consider myself a Christian, my beliefs do not belong here at an information site. I want to help others, if I can. I want to share my experiences with everyone and I don't care if they are atheist, Jehovah's Witness, Jew, Muslim or Christian. Dysautonomia is a very confusing, life dibilitating and not well known syndrome. We must share everything we can with others without giving unprofessional medical advise or being religiously threatening. Telling others here, "I have been where you are now, I know what you are going through", means more than "You are in my prayers". I now realize that telling people that they are in your prayers can give some people a negative feeling like saying, "Gee, what you have is so bad that I am going to pray for you!" Letting people know that you were once where they are now only says that you survived and it will be OK.

If I could make a suggestion: If you find you like someones approach and would like to get to know them better then you should ask them for their e-mail address. Form a support group outside of this site where we can all visit and share life's wonderful experiences with eachother. Michelle is doing a great job of keeping up this site. Maybe someone else should me moderator of a support site. The more sites to go to the better.

I am sorry I have been long winded here. And I am sorry if I offended anyone with what I have written here. I look to this site for information to help me deal with struggles I have with Dysautonomia. I am hoping that what I said doesn't result in my losing my privilage to this site. This really is a great resource. Thanks for listening.

KathyP

[Ernie]

Hi Kathy,

I can understand your point of view from the perspective of a newbie. The problem is that after a while you know most of what is going on with this disorder and if you are like me stuck for life with this life altering disorder with not much quality of life you also need a support system. It's give and take. The newbies are taken care by Michelle and Nina but a lot of the work is also done be the oldbies.

Most of the time newbies asks the same questions over and over. Often they could find the answers in the archives or in the FAQ but many of them still personally post it.

After a while on the forum you want to share more of your life and you want to make friends on the forum and have fun with the others. It's not the same thing posting on the forum and sending a personal email. This is one of the most important need that oldbies need to fulfil. If we can't get our needs satisfied we will also leave. I have been on other forum where this has happened. So it is a delicate balance between satisfying the needs of newbies and the oldies.

Ernie

[Merrill]

KathyP, I think I heard about this site from another forum, the one at NDRF.com (national dysautonomia research foundation), which my doctor recommended. This site was referred to as potsplace.com ... and in fact, that's the address I type into my browser when I want to visit the forum. I was always confused that the URL changed to DINET once I came to this section of the potsplace web site.

All that's to say, more than a year ago when I found this place, I thought it was completely dedicated to POTS. (This is as opposed to the ndrf forum, where folks seemed to suffer from more wide ranging diagnoses. And it bugged me at first that the people with pots didn't converse with one another inside a sub-topic conversation group dedicated to pots that had been set up by those who run that forum. People, it seemed, wanted to be together no matter what their diagnosis, and they didn't want to split into subgroups! There's a lesson here somewhere ...)

I've learned that we all take different paths to get here ... but we seem to share in common the goals you describe: to gather and share information and to gather and share support that sustains us along our healing journey, as EarthMother so lovingly and aptly puts it. I've also learned that yes, this place is for anyone with symptoms of dysautonomia, pots or otherwise. (By the way, I'm like you--I first got the pots diagnosis and then recently got an IST diagnosis. I didn't know that IST was a form of dysautonomia until you just said so ... )

My personal opinion is that we should just keep on keepin' on and not think about separating our different kinds of posts to different sub-groups. It's clear that not everyone reads and responds to all the posts anyway; in addition, it's easy to sort through what's here to find what you're looking for. The search function is fast and effective--just be sure to search farther back than the last 3 months or so!

I don't think think I've ever been personally offended by posts on this site ... annoyed from time to time, maybe. But I expect that! This is the INTERNET! If there's a link I don't want to click or a topic I don't want to read, I don't.

I'm super tired and my thoughts are unraveling in a disorganized kind of way. Final thought: I think we should all take a deep breath and relax. We're fine; everything is fine.

merrill

[Michelle Sawicki]

Thanks for your thoughts, everyone. Actually, I like that we support each other through tough times, and that we help each other through. I think that is what brings people to this forum time and time again. I am all for support.

What makes me leary of off-topic posts (posts that have nothing to do with dysautonomia) is that I get more complaints about off-topic posts than any other posts on the forum. My time is precious, and I choose not to put myself in a position where I continually have to get get involved in people's arguments that have absolutely nothing to do with dysautonomia.

I gladly moderate posts dealing with dysautonomia. However, I strongly feel I should not have to referee political debates, religious disputes, or (hypothetically) have to tell Ms. X that no one really wants to hear daily updates on her cats. There are topics that clearly belong here and then there are topics that clearly do not. What lies in between is a grey area that I am attempting to sort out.

Best to all,

Michelle

[Michelle Sawicki]

To Merrill and others who may be confused about our name:

I started potsplace.com years ago, with no intentions of it becoming a nonprofit organization. I was simply a POTS patient who had gone through what many of you have...I'd become ill, no one could figure it out and even when they finally did (after I found the information myself) no one could really explain it well to me. No one had a convenient list of the things that might help, and the things to avoid. This led me to do my own research. I learned a lot, but still heard from many, many patients who were struggling to find information on POTS. That is what fueled me to create a website about POTS, potsplace.com.

I quickly realized that potsplace.com was costing me quite a bit of money. I paid for the website, domain name, research articles, etc. I was spending money I didn't have to help other people. The expenses continued to add up, and I knew I would have to be able to ask for donations to keep things going. And so, I started a nonprofit organization.

I could have named it potsplace, as this was the original website name. However, I also wanted to help those with other forms of orthostatic intolerance. I felt the name "potsplace" limited me to POTS, so I named the organization "Dysautonomia Information Network" and expanded our website to include other forms of dysautonomia. We own the potsplace.com, potsplace.org and dinet.org domain names. So that is the story behind why we are called by two names. "Dysautonomia Information Network" is our official, registered name.

Michelle

[KathyP]

Thanks Merrill and Ernie for you responses.

I was not suggesting seperating into any kind of sub-groups. When a new person to the site logs on to this site they don't look for archives, they look for new information. I am no longer considered a "Newbie" here but still find new information being advanced. I hope I didn't ask the same questions over and over that irritated the "oldbies"(?). As long as I am not functioning normally with Dysautonomia I will always be looking for new solutions to better my life.

Merrill, I was never diagnosed with POTS. My doctor diagnosed me with dysautonomia and he ordered a TILT Test with a cardiologist. That cardiologist diagnosed me with IST and Vasovagal Depressor Syndrome which are only 2 aspects of my syndrome. I also have agoraphobia, Mitral Valve Prolapse Syndrome, Polycystic Ovarian Syndrome, thyroid problems, Insulin Resistance as well as a severe panic disorder. I was told that these are all factors of Dysautonomia. The cardiologist told me to look up Dysautonomia and I landed here.

Please Michelle; Let me know if I am at POTSPLACE.COM or Dysautonomia Information Network or DINET.com . Maybe that's my problem. I may have landed in the wrong place looking for information. If I am in the wrong place I apologize. I will inquire again with NDRF.com where I can find the information I desperately need for DYSAUTONOMIA. There is not many places to go for information about this syndrome.

Now I clearly see why there is a need to clarify things at this site!!!!!!!!!!!!

KathyP

[morgan617]

I find this site to be helpful for all types of dysautonomia. In fact, in a recent article by Dr. David Robertson, he says most specialists refer to all types of dysautonomia as Orthostatic Intolerance. This is inclusive of all types and symptoms. I believe that so many of us have overlapping symptoms, that it's sometimes impossible to just put a single name to it. Some of us have not had the advantage of being accepted to the large facilities back east and therefore must find answers on our own, or if we're lucky, with the help of our primary care doctors. I have so many symptoms that over lap, I tend to just say My system is broken. And that's what my doctor says.

Kathy, as far as being a newbie, we have periods where we get bombarded a lot by the same questions, but there is always someone willing to help you find answers, or at least tell you of their experiences. Or direct you to the archives. As time goes by, hopefully you will find things that help you and give you the information you so desparately (sp) want.

It takes time to come to terms with the things going on in our bodies, and even us oldies have really bad days. I have lost almost all of my friends due to this illness, as have many people, and sometimes this is just a nice place to come and get a little comfort. I agree, we don't need daily updates on our cats, but when my son was hospitalized recently, I found great comfort and support on this board, that I didn't have elsewhere.

I just skip threads that do not interest me, or that I have no answers for. So I pick and choose. That works for me. This illness does impact everyone around us and I hope that it is okay to occasionally post about something that is traumatic or upsetting that affects our illness from a ripple affect.

This is the best site I have been to, as far as people getting along with very little friction. And lots of info. But like anything, there are ups and downs. If it were perfect, we would be in paradise, like the Bahamas or something.

Anyway, no offense was taken but I do agree with Ernie, and I also understand your point. We have to have a sense of humor at times or we may as well give up. morgan

[briarrose]

I'm very relieved that this website is here for us to share our experiences and support each other. I respect everyone here and think of most of these guys as family

I rely on the elders here to answer my questions and steer me through new experiences that I haven't had before. I've also found information here that I'm not going to find anywhere else because this is still all so new to the medical community. There isn't much published information.

Chronic Illnesses have different stages of coping. Obviously when we are first diagnosed we have the sudden need for information. You can't possibly read fast enough or find enough info to read. There are the emotions of anger, frustration, depression, etc that are important to talk about. As time goes on you have the change or addition to your symptoms. You seek others experiences with medications, doctor's, symptoms, etc. As years pass, you seek each other for support to ongoing frustrations, especially since this is still considered "Rare."

Who else can you talk to that can really understand what you're saying?

I think that if there are certain things that annoy people they should try to avoid or stop reading it. Skip those posts. Stick with what's important to you or things you want to know about. I've found myself backing out of some posts.

I agree with several posts here and disagree with a couple of things said but that's the great think about being in America. The Freedom and ability to share which we so often take for granite.

Ernie You are so on the money with your post. You had so many great things to say and I agree with you whole-heartedly

Morgan, Merrill you guys had good things to say too.

Kathy, I think that the majority of us are POTS patients but most of us have Dysautonomia too. Everyone is welcome to share and I know that you aren't the only one that has IST here on this website. It doesn't matter if our dysautonomia is diabetes, IBS, POTS, IST, OI, NCS, etc. We all have common experiences and ideas that can and do help others.

I posted 3 definitions of Dysautonomia from 3 different websites. I did this to show that we really are similiar no matter what our main diagnosis.

In case we've lost track, these are various definitions of Dysautonomia.

From POTS Place -

Dysautonomia literally means dysregulation of the autonomic nervous system. The autonomic nervous system is the master regulator of organ function throughout the body. It is involved in the control of heart rate, blood pressure, temperature, respiration, digestion and other vital functions. Dysregulation of the autonomic nervous system can produce the apparent malfunction of the organs it regulates. For this reason, dysautonomia patients often present with numerous, seemingly unrelated maladies.

DINET provides information and personal stories on several types of dysautonomia, with a focus on the following:

NDRF

What is Dysautonomia?

Postural Orthostatic Tachycardia Syndrome (POTS) , Neurocardiogenic Syncope, Mitral Valve Prolapse Dysautonomia, Pure Autonomic Failure, Multiple System Atrophy (Shy-Drager Syndrome) are some of the many disorders that involve a dysfunction of the autonomic nervous system, or Dysautonomia.

Our bodies have a complex task of maintaining a stable internal environment and respond appropriately to changes that take place in the external surroundings. This complex task is directed by the Autonomic Nervous System.

The autonomic nervous system manages most of our bodily systems, including the cardiovascular system, gastrointestinal, urinary and bowel functions, temperature regulation, reproduction and our metabolic and endocrine systems. Additionally, this system is responsible for our reaction to stress - the flight or fight response.

When our autonomic nervous system malfunctions, it is known as Dysautonomia. Other terminology that is used includes - Autonomic Dysfunction, Autonomic Failure and Autonomic Neuropathy.

For those afflicted with Dysautonomia, there is a range of symptoms that can vary. The prognosis may be one that calls for an abatement of symptoms, or an adjustment to living with a chronic impairment. The following statement, by Dr. David H.P. Streeten, provides an excellent summation of the impact of Dysautonomia:

While we are not constantly aware of the activity of the autonomic nervous system as we are of unusual sensory and motor events, the normal functioning of the autonomic nervous system day and night, from heart-beat to heart-beat, plays a largely unconscious but vital role in our livelihood. It is not surprising, therefore, that autonomic abnormalities, though they are usually more difficult to recognize than a severe pain, a sensory loss or paralysis of a limb, may be even more important in impairing the quality and even jeopardizing the continuation of life.

Autonomic Disorders are classified into two divisions

Primary Disorders (e.g. Orthostatic Intolerance Conditions, MSA /Shy-Drager Syndromes)

Secondary, or Acquired Disorders (e.g. Diabetes Mellitus)

Mitral Valve Prolapse website

http://www.mvprolapse.com/dysautonomia.html

Dysautonomia

The autonomic nervous system is the "automatic" or "unconscious" nervous system. It controls and regulates virtually all of our body functions and systems, such as blood pressure, pulse, body temperature, breathing, sweating, bowel function and sleep patterns. The autonomic nervous system is made up of two parts: the sympathetic nervous system tends to increase and accelerate or speed up body functions, the parasympathetic nervous system tends to slow down, relax, and put the breaks on body functions. In a normal situation, the two divisions of the autonomic nervous system work together to control these functions in a continuous manner reacting normally to stimulus

[corina]

Because of the POTS or dysautonomia I sometimes have trouble expressing myself, as well as understanding what others mean. I feel a little uncomfortable right now. This website has made such a difference for me. My doctors came to understanding dysautonomia and I got new friends. Friends who understand what I have, who encourage me and who I wouldn't want to miss for the world. I don't always want to talk about being sick, I like to talk about other things as well, because when doing some little thing my friends her on the forum understand that for me that is a big challenge. Also, by telling everybody that the sun is shining, can bring a smile on someones face. I love to joke with Emily and Merrill and Ernie and Nina and EVERYBODY (can't think of more names right now, sorry). I couldn't find people in my own country who have POTS or dysautonomia (as I usually call it) and I feel so much warmth and help and friendship from all of you. If I don't want to read things (or if I can't) I don't. If I'm up to reading and answering I do. If I want to joke, I will. This place means the world to me (litterally). I'm a little uncomfortable now and have trouble writing this because of brain fog, it's just that I wanted too.

Quoting Merrill: "Peace" (hope you won't mind Merrill)

Corina

[Merrill]

KathyP, I'm not Michelle, but I'm online this morning and I just wanted to say YOU'RE IN THE RIGHT PLACE!!! All roads lead here! (All three domain names, that is--they all bring you to this same place. Stay awhile! We're a nice bunch and we'll help you and you'll help us sort through this wild and wacky world of dysautonomia and its many symptoms and syndromes.)

To everyone, I think it's good that newbies come and post their questions--even if those very same questions have been discussed in the past. Remember how great it felt to find a place where you could safely ask a question and have someone answer you--someone who maybe experienced something you had or whose doctor had shared some information or advice that they could pass along to you? Remember how great it felt to find your voice and discover that you could use it to communicate to others how it felt, deep inside ... to finally let go of something you'd had to hide or disguise? Or something you didn't understand at all and that was scarey to you?

Those of us more comfortable using the search function can copy and paste links to old threads, if desired, to help share a wider version of an answer. But I think newbies should ask for information and those who feel up to sharing can do so.

Corina, I'm sad that you say you feel uncomfortable ... from what I've seen of your posts, you're using the forum in a completely appropriate way ... people here get so much from your humor, your insight, your support, your cyber-roses, and your medical experiences. I'd like to continue offering you the same from my neck of the woods. (Know what that means? )

Michelle, I'm half teasing when I say I hope I haven't strayed too far off topic or too far into your domain as owner/operator/visionary of this site... but we all make meaning where we can, and this clearly is a place where people come to do just that.

Thanks for listening,

merrill

[Kite#7]

briarrose,

Your last post is an excellent example of the measure of import that this forum has for all involved here. The labyrinth of info we all must traverse daily , on top of trying to maintain some semblance of normalcy in our lives I think is typifyed by the support of all in this forum and all its "posts". A common , excuse the pun, thread seems to be obviated thru all posts here ; we all need the forum and we are all capable of freedom of choice. The benefit of information and distraction are sometimes equitable in nature. For one who came to this site not as a POTS sufferer , I apprciate all the posts as they benifit me. Autonomic Dysfunction is Life Altering and so to has this site been - and will continue to be.

Kite 7

Ps thank you again briarrose for your post as it is truly informative to those of us that "fall" into those other categories

[MightyMouse]

Kathy, the answer to your question is that you are at the forum for the Dysautonomia Information Network, AKA DINET.org --

however, Michelle still owns the POTSPLACE web domains, but when you direct your browswer to that name, you will still come up with DINET, the newer name.

and, you are correct, this place is all about the entire spectrum of autonomic problems, aka dysautonmia. My first diagnosis was NCS (neurocardiogenic syncope) and second was POTS. Dysautonomia has a continuum of diagnses and symptoms, as well as a continuum of severity.

If I'm interpreting what Michelle has said correctly, I think this forum is designed not just for information...but also for support through accurate information and sharing of experiences with various treatments, doctors, life changes, as well as sharing of info on diagnostic stuff, etc.

Nina

[Sophia3]

Michelle and others,

As a somewhat new poster to this site I think the confusing or off topic threads could be helped by one thing: Specific topic names of a new thread. SOme have generic titles that don't tell you enough about the subject matter, imo.

Many post "Help, what's this?" and we have no idea what they mean. OR they type off topic and you don't know what that means. OFF TOPIC like they want to rant about a problem with a kid or off topic like getting a parking ticket??

As far as updating on cats each day, has SOMEBODY really done that? LOL. I am a proud, responsible, Kathie Lee Gifford type CAT mom of two indoor 'kids' but would never think of wasting valuable space here for pet news or daily diaries of my stuff.

If folks want to keep personal diaries, to it on your own site.

If people would be, in GENERAL, more DETAILED in naming certain threads, that could help MANY OF US that simply don't have the energy to read all the posts here.

I admit, I don't read many posts here but it would be nice to know what I am clicking on by the 'title' of the topic. Maybe that's a HUGE thing to ask but just a suggestion. That way, if folks aren't interested in a certain problem or poster they can just SKIP IT. None of us are forced to read all the threads when we come here. Why choose to aggravate yourself by a subject or poster? We are all adults and should not bother Michelle and Nina with minutia, jmo. Part of using the Internet is to act and behave responsibly like an adult. Oh, and another IMPORTANT FEATURE I have used many times...the EDIT button!!! that way, if one of us has temporarily lost our senses and ranted and raved, we can apologize and or EDIT our posts.

I have had shoelaces hanging out of my mouth on occassion (from inserting my foot!!) but have NEVER hesitated to state my case, edit and or apologize. Part of this illness IS feeling like **** and being cranky but it is NO excuse to be hateful to people.

oh, and the off topic stuff about MUSIC and MOVIES should NOT TRULY be off topic but "coping mechanisms" in dealing with chronic illness. aka Therapy!! It's all about common sense and moderation in how we present our posts.

Thanks for all who moderate this place. And BIG THANKS for keeping RELIGION OUT of the picture. That's a personal situation.

[briarrose]

Kite 7

Thank you for your very nice post, it's very much appreciated.

My daughter suffers from IBS and I know one day she might come here and ask some questions. I know that she will be treated well by everyone and even though she doesn't have POTS, everyone here will take her in under their wing, thats the kind of great people we have here

Michelle

I feel the need to give you an explanation for some of my posts.

I find that I often have a stong opinion about something and I want to put it out there but I know that since this isn't a verbal conversation and I usually deal in fact over emotion that I sometimes might come across as gruff. I usually try to stick to the facts and I like to give as much information as possible. When I was a new patient I couldn't get enough information about Dysautonomia, POTS, symptoms, treatment, doctor's, etc. Every little bit that I could read helped curb that need to know.

This is off topic for a second but I would like to share something because I feel it has relevance. I work in an ER and last week we had a patient that didn't want a certain medication that was very vital for her. She was scared to take it based on something her friend had gone through and she didn't have all the facts about the benefits of why she needed to take it. I got online and printed her 2 or 3 credible pieces of information about the medication, she read all the information and then allowed us to give it to her. Moral of the story - information is a good thing, sometimes people don't have the means or know how to get that info. I feel that I'm not a very big support emotionally but I really try to make up for it when you guys need information.

I know sometimes I'm off topic but there is usually some relevance. Sometimes it's good to see that people with other chronic illness experience the same ups & downs. We didn't invent the wheel and why should we go back to square one when we can learn from others and their experiences

I know that most of us go through a phase at one point, why me, why did I get this illness. We think about things we did or didn't do. We think about what could have caused this life altering illness. According to Chris Caulder's story, POTS can be brought on by chemical exposure. So I've posted some stories about the environment, chemicals in it, etc. Just to allow us to think and be exposed to possibilities.

Steph