Broken_Shell

Dear Desperate Mom, You and your family are in my prayers. Let your daughter know that there are people out there whom she doesn't even know that are praying for her. In terms of treatment, there may be some options still, but right now it sounds like she needs something acute to get things under control. My thought right now would be that her MD should be able to admit her to the hospital for any reason - dehydration, malabsorption from all of the vomiting, medical supervision, intense pain, anything. Have you considered just taking her to the ER? Perhaps they will see how sick she is and admit her. I am new to the forum, but it seems like a lot of people here have a lot of ideas and support to offer. Hopefully once you can get her health crisis under control then you can begin another wave of strength to look for a long term treatment that will help reduce some of her symptoms. Hang in there! ~ Broken_Shell

Hi, I am wondering the same thing too. I was diagnosed by a neurologist and have not seen a cardiologist. I am also looking into the Cleveland Clinic, and was informed that Dr. Robert Shields is the head of the autonomic dysfunction clinic there through neurology. I was in the hospital in January and was consulted by an endocrinologist who treats patients with dysautonomia. Maybe various specialties have expereince with this syndrome. Casey and Babette, I look forward to hearing about your experiences in Cleveland! Good luck and best wishes! ~ Broken_Shell

Hi Michele, Sorry if I made you more confused with what I wrote. I really think it's just a matter of semantics and opinion... I copied this from the home page of this website... 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. Postural Orthostatic Tachycardia Syndrome Often more simply referred to as postural tachycardia syndrome, or POTS, this disorder is characterized by the body's inability to make the necessary adjustments to counteract gravity when standing up. The defining symptom of POTS is an excessive heart rate increment upon standing. However, as you will discover, there are a multitude of other symptoms that often accompany this syndrome. As such, POTS can be a difficult disorder to detect and understand. So, I stand corrected in saying that POTS is a syndrome with symptoms, but in my way of thinking it is a specific example of an autonomic dysfunction. It probably depends on how your doctor defines things too. I don't think either way is "right" or "wrong". The doctor who diagnosed me referred to my symptoms as dysautonomia. My understanding is that if I only had symptoms of orthostatic intolerence then I would just be diagnosed with POTS, but since I also have a lot of gastrointestinal, blood sugar, pain, etc. symptoms then my diagnosis just becomes dysautonomia because more than just my cardiovascular system is affected. I hope that helps to clarify what I meant to say. I think that everyone on this website is talking about the same thing no matter what we call it... kind of like potAto/potato with the short and long "a" sound This isn't a scientific article or anything, but it's something I read several years ago that really tied my symptoms together into a single diagnosis instead having everything as a big puzzle. It refers to the big picture diagnosis as dysautonomia and POTS as a subtype of it, so that's probably why I started using that name for it too. If you want to take a quick browse the link is http://heartdisease.about.com/cs/womensiss...ysautonomia.htm. I hope that helps explain what I meant Sorry again about causing confusion. ~ Broken_Shell

Hi Michele, Miriam & Others, I was just reading the dialogue about POTS vs. non-POTS symptoms... I don't know if this helps to clarify, but I think that the differentiation is whether a symptom is related specifically to POTS or just to dysautonomia. For example, lightheadedness and palpitations when standing can be attributed to POTS, but a lot of the other symptoms we tend to experience (like gastrointestinal symptoms, excess or lack of sweating, myofascial pain, etc.) result from autonomic dysfunction, but they do not necessarily result from POTS as it is defined. My understanding is that POTS is just one "subtype" or symptom of dysautonomia. People can have dysregulation of all sorts of autonomic functions without having POTS per say. To me dysautonomia is the syndrome of which POTS can be a symptom. (The way that shortness of breath with exercise or cough are symptoms of asthma). Does that sound right? ~ Broken_Shell

Hi Babette, I am thinking of heading to the Cleveland Clinic. I understand that Dr. Robert Shields is the head of the autonomic center there. Can you please let us all know how your appointment there goes and what the doctor has to offer? Thank you! ~ Broken_Shell

Hi Michele, One more thing... has a chiari malformation been ruled out? You mentioned you had mri's, but if it hasn't then you might want to check with the doctor because having this physical abnormality can cause autonomic dysfunction that can be helped with surgery. I thought of it because you talked a lot about pressure at the base of your skull and neck. I also have these symptoms (I told doctors for years that there was something wrong with the junction between my neck and head) and have ruled out them being caused by any type of neurological malformation. I get craniosacral and Upledger method myofascial work done weekly by a physical therapist, and this helps to reduce these symptoms. My physical therapist also taught me to use kinesiotape on several of the muscles around my neck and face which has been helpful. I also have the difficulty you mentioned where you have increased symptoms with head movements - I get very disoriented feeling and tight all over my head and neck from moving my head around. Hope that helps! ~ Broken_Shell

Hello Michele, Welcome to the forum. I am also a new member who has had dysautonomia for about 7 years now, and I just read your post. I was literally sitting on my couch saying "oh my gosh... yes!" I am 26 years old, and I have a story similar to yours. I never drank alcohol so I can't relate to that being a trigger (although alcohol use can lead to hypoglycemia), but when I was in college I began having "episodes" following a "viral illness". I initially had a hard time describing my symptoms to doctors because I just didn't feel "right" and told them that I thought I must be having seizures. I too have seen doctor upon doctor for years and been called a puzzle. Finding this forum has been wonderful for me because I see other people who struggle as much as I do everyday just to survive because we are constantly fighting our own bodies. I wish I could tell you that there is a magic way to get your life back, but after 7 years of searching I have yet to find one. My symptoms began when I was 21 years old and have progressed since then to the point that I had to leave graduate school two years ago, just one year short of completing my doctorate degree in pharmacy. Everyday I look at my life and can't believe what has happened... I went from being a very healthy, active person who was in dance and played tennis and had a lot of ambition and goals to someone who is 26 years old and can't even drive or go anywhere by myself because of my symptoms and episodes. I have an autonomic dysfunction with symptoms composed mainly of wooziness/dizziness, pressure and pain in my head/neck/face, daily episodes of hypoglycemia, GI problems - constipation/diarrhea/nausea, heat and cold intolerence, lack of sweating, and the list goes on and on. My symptoms vary from day to day and minute to minute. I have included a link at the end of this note that you might be interested in reading. I also have multiple "strange" neurological symptoms, many similar to those you have described, most notably I can relate to the sensations in the base of your head (shaking, pressure), the internal/abdominal shivering/tremoring feeling, the feeling of being on a moving ship or a floor that is swaying (I told this to doctors for years - I feel like I am on a rocking ship or standing on a "balance ball" that keeps shifting), feeling "out of it" and "fuzzy" in your head, etc... I completely understand when you say that you just don't feel like yourself - I haven't for years since this all started. I could type a really long response to you, but I have a difficult time using the computer and sitting up for a long time... I can tell you though that you are not alone and that your diagnosis of dysautonomia sounds accurate to me. Just like you, I have a long document about my story and list of symptoms typed up that I use to send to doctors to determine whether or not they feel that they may be able to offer anything to help me. Five years after diagnosis and two years after leaving graduate school, I am still deep in the hunt for a doctor or treatment that will help me to regain some of my ability to function. I have found some things that have been helpful for some of my symptoms, but I still completely disabled by them. I know that you and your family are scared. Just try to take it one day at a time and realize that even though having a diagnosis of dysautonomia gives you an answer, it is probably not quite the answer you were hoping for because there is no magic treatment to fix your symptoms, but there are ways that you can help yourself. I am new to the forum, but I have read several discussions and been amazed at how similar the lives of other forum members are to my own life. I would encourage you to ask questions and read posts (use the search tool) because it seems to me that the people on this forum are really interested in helping one another and offering advice about things that have helped make their lives better. I can tell you from personal experience (as I'm sure everyone else on the forum can) that having dysautonomia means that you will likely have to change a lot about your life, but hopefully it will make you a stronger person and help you to truly appreciate the little things that are so easily taken for granted. That is all I can write for now, but please feel free to respond to my message or post any questions. I am not yet familiar with the forum, but I think that there are both discussion boards and mailboxes where we can write things. Like the response from potsgirl says, "we need all the support we can get!" Here is the link: http://www.associatedcontent.com/article/1...omia.html?cat=5 Best Wishes, Broken_Shell

Hello, I also have a difficult time with showers. I have found a few things that are helpful, some of which have been mentioned in previous posts. I also use a shower chair to alternate between sitting and standing while in the shower. The other things that have made my shower experience more tolerable are these: I drink a lot of cool water while in the shower - I keep a bottle of cold water on the shower ledge and drink at least 1 -2 cups during my shower. I also shower with the bathroom door wide open and the shower curtain partially open. Having this contrast between the warm shower water and the ambient temperature of the room being much colder makes me feel better. When I start feeling too lightheaded, I pull the shower curtain open a little more to let in a draft of colder air and take a drink of cold water which seems to help for a few minutes. The last thing that I have found helpful is that when I get out of the shower in the winter I put the heater on so that I don't get a chill, but again I leave the bathroom door open so that I have the warm air blowing on only part of my body but cooler air surrounding a majority of my body. My feet are still the color of lobsters when I get out of the shower, but these things at least help with my symptoms. Speaking of all of these problems with the heat... has anyone else noticed this? I have a difficult time standing near the stove if a burner is hot. I often have to place an ice pack on part of my body just to remove food from the burners when it is done cooking or sit in the kitchen while the stove or oven are in use. I am just curious if this sounds familiar to anyone else or if you have any suggestions that help you in the kitchen. Thank you! ~ Broken_Shell

Hello, I also have a problem with my body either over-reacting or inappropiately reacting to medications. After several disasters, I now only try new medications when I have someone to monitor me, and I only try incredibly low doses of medication to begin with. I literally use a pill cutter to sometimes take as small of a dose as 1/8 of a tablet. For capsules, you can open up the capsule and pour some of the medication out and then put the capsule back together and take the lower dose. Although it's not an option for most medications, I try to use either non-oral or non-systemic dosage forms (such as patches or gels) when possible. (Obviously this wouldn't be an option for midodrine or Florinef). If you have a good compounding pharmacy near you, they might be able to make lower dosage preparations or prepare medications in alternate forms (a suspension where you can easily meausre and vary the dose) or non-oral dosage forms. I am glad to hear that others have problems with medication intolerence too! ~Broken_Shell

Hello, I also have noticed since developing dysautonomia that laughing - even for a few seconds - triggers lightheadedness and makes me feel unwell. I have noticed the same thing if I sing in church. It is frustrating because I think "laughing and singing are great activities... shouldn't they make a lot of happy neurotransmitters that trump the dysautonomia?" Unfortunately, that apparently is not the case! I don't have any suggestions to offer but wanted to share that I have had similar experiences. ~ Broken_Shell

Hello, I am new to the DIN forum. I have suffered from dysautonomia for the past seven years following a "viral illness." In the past few years my symptoms have progressed to the point that I had to leave graduate school and am unable to work, drive, or function well enough to care for myself. I have read several discussions on the forum and have been amazed, thinking to myself "wow - I didn't realize that other people live this way too!" One question that I would appreciate feedback on is whether or not anyone's symptoms have a "circadian" pattern to them. The degree to which I have symptoms upon awakening varies from day to day, but my symptoms rapidly escalate in the morning after eating breakfast and having a bowel movement. My most prominent and disabling symptoms involve wooziness and a sensation that I am moving or falling, hypoglycemia and rapid fluctuations in blood sugar, muscle spasms, pressure, and pain (especially in my neck, head, and face), and bursts of either physical "anxiety-like" symptoms (although I feel mentally completely calm) or feelings like I am drugged (i.e. "floaty" and out-of-it). In general, the intensity of my symptoms tends to decrease somewhat by the late afternoon and evening, with the exception being a large increase in symptoms from eating dinner. On most days, I feel the best in the late evening, around 9 to 11 o?clock at night. At this time, I feel the most ?normal? that I feel all day, and I am able to function the best. I hate going to sleep each night feeling the best that I do all day knowing that when I wake up in the morning my symptoms will begin again in full force. Does anyone else notice this type of pattern to their symptoms? If so, have you found anyway to reduce them or function better during the mornings? Thank you for your feedback. I look forward to being a member of the DIN forum. ~ Broken_Shell