Racer

I have similar issues, when I stand my hr goes from a resting of 50-60 to around 130 and my bp crashes. My understanding is that atenolol can lower your bp, so if you bp already goes really low, it could possibly make the situation worse. They dont mess around when they suspect LQT syndrome (to prevent sudden death!). I couldn't make three steps without fainting and was mentally not with it while on atenolol. I only took it for a very short time before it landed me in the ER.

I am fairly certain that the EP prescribed meds according to my symptoms along with the TTT results. I guess I will check to see if he went into more detail in the medical record. I guess if I need to explain to other doctors, it will help if I can be a bit more specific of the dx? Is "autonomic dysfunction" even considered a specific diagnoses or just a umbrella term? I am picking up the prescription tomorrow (I had a insurance issue), so I am not sure yet. I was originally wrongly prescribed Atenolol by a different doctor who misdiagnosed me with LQT syndrome (I am "borderline"). That doctor didnt realize my fainting was caused by BP crashing. I wont be making that mistake again!

This is scary similar to my situation! Down to the whole brother issue! I have a brother and experienced similar things. Someone needs to develop a dysautonomia dating website!

Do a search on "sensory integration dysfunction" or "sensory processing disorder". Currently it is not officially considered a distinct diagnoses, but is considered a symptom of many different conditions. Most people are sensory sensitive to certain sensory stimulation. Example, most normal people cover there ears to hearing nails on a chalkboard. I guess it all comes down to severity. Many people with autism are head banging and self injuring to distract themselves from the pain the sensory problems are causing. My understanding is that Temple Grandin experienced the more severe end of the sensory spectrum.

Oh NO, that was hypothetical lol, they use the "17:43" on the vdot as a example. I am not much of a runner. I guess my point was that the vdot is based on averages, and is a system used to make a training plan. While heart rate is only a tool that gives you the absolute value to go by, and can be used in conjunction with any plan along with appropriate target zones. In my experience, in training, a system would be something like the vdot calculator you use to make a training plan. Any sort of system, "program", gimmick, that is used to make a training plan. A training plan is the specific workouts you want to do, all planned out. A schedule is the training plan on a calender. You should be able to change your schedule as needed, but still be able to stay on plan. For instance, when I start a year, I first think of the goals I want to accomplish over that year. Next, I come up with a specific plan to accomplish those goals. My plan has specific workouts and how often I want to do these workouts. Next I roughly place my plan on a calendar. The goals are marked on the calendar, and I keep track of my progress on this calendar. The plan is to achieve a goal, so if I find myself unable to accomplish a specific workout, I adapt by changing the plan inorder to still accomplish the goal. Regardless of what you do, or how you do it, the key to a successful plan is flexibility in the schedule and a focus on your goals. Many people are to rigid in a plan and only focus on completing x number of workouts in a week. Trying to follow to rigid of a schedule and focusing to much on individual workouts leads to failure for most people. Focusing on missed workouts and bad workouts does not help people achieve there goals, while focusing on adapting to keep goals in focus does help. No one can plan for illness and injury in a workout plan, so the only option is to adapt.

I visited my EP today to discuss the results of my tilt table. I had known the tilt table was positive (I fainted), and had a idea from the tech who did the test what the dx would be. So the EP reviewed the results of the TTT and said it confirmed "autonomic dysfunction". This is the first time he used the words "autonomic dysfunction", but he did not elaborate on specifics of it (I should have asked way more questions!). He prescribed me meds (waiting on the pharmacy), so the plan is to see if meds help. So I am wondering, is a dx of "autonomic dysfunction" sufficient, or should I really be looking for a more specific diagnoses?

Found a interesting study done on this (I wont pretend to understand any of this ) http://www.ncbi.nlm.nih.gov/pubmed/19043581 This link says that the Mitochondrial disease is known as "OXPHOS". Of importance might be the references at the end. http://www.mitoaction.org/files/Autism-OXPHOS_1.pdf

I know how you feel! I am single, and live with my parents. While it is great to have my parents for a little support, I sure dont want to stay at home forever! (AHHH!) I have never been in a relationship (I know, pathetic), and I just cant see it happening due to my keen ability to say the most inappropriate things at the most inappropriate times (not intentionally of course). One option you have (if you live in the US) is your local center for independent living. I have went to them before for help, and they have been great. They should be able to help you with finding housing and care options. One option might be a apartment or house with another person (or a couple people) who have similar issues. In this sort of arrangement, everyone does there share according to individual strengths. A nurse can usually be scheduled to stop by at specific times threwout the week if needed. The next step from this, might be something like a group home. These sorts of places usually have more people, along with rules you need to follow, but also more care when you need it. You usually dont have a choice of who your housemates are though! Good if you get great housemates, but bad if you have some creepy guy following you around all day! Nursing homes are reserved for people who absolutely need 24/7 care and supervision. While they can be warm and caring places, I worked at a nursing home for a few years (in activities). The particular place I worked, spending 8 hours a day there, I witnessed many of the big issues with these places on a regular basis. Anyway, just wanted to say I can relate to being single, and that there are many options if you need day to day assistance

How about a "other" for the third question. It hurts my head (bad), but I wouldn't say it feels like it is full of blood. I just always guessed that it has to do with BP fluctuations in response to posture changes.

I get the bad nightmares, the people trying to kill me type. I usually have a hard time getting back to sleep after these

I have good long term memory, but bad recall. This means that I have trouble remembering the past, but can remember it normally if someone provides me with enough details. I couldnt tell you what I did yesterday at work, or what I eat today for lunch, but would remember with enough hints.

I was wondering if this topic would ever pop up on this forum. I feel like I am a expert on this topic. I hear people asking this same question all the time, and I always give this simple response! Ask yourself if you consider your autistic traits to be disabling or not? If you dont consider them disabling, then what would you possibly want to get out of a autism label? If you consider it disabling, then you might have something to gain from a diagnoses. A autism spectrum diagnoses is only useful if you want to get treatment for the set of issues that falls under this dx. Outside of treatment and services, a autism spectrum dx serves little purpose, since it is based on a very loose set of observed behaviors (not actual symptoms). ALL (I will repeat that ALL) people have at least some of the same behaviors that fall on the autism spectrum. The difference is that most with the autism dx have behaviors bad enough to interfer with daily functioning, and are perceived as disabling. That being said, I have the HFA / Asperger's syndrome label, and have experienced many problems. As a kid, I had terrible trouble with social skills! I attended so called "treatment" and a social skills group, that only helped a little. I had lots of trouble with sensory stuff. Some sensory stuff and extreme emotions was so unbearable that the only way I could distract myself from it was to bite my hands. I graduated highschool without any friends and was so depressed I contemplated suicide. Luckily I learned how to deal with things, made friends, and live a much happier life! I continue to have trouble with social stuff and executive functioning, and accept that I will always have some trouble with them. How this fits in with all my other troubles, like fainting, constant headaches, etc, I am trying to figure out. One thing I have noticed over the years is that most people on the autism spectrum have went on to find they had some undiagnosed underlying cause that was treatable all along. One thing the medical professionals need to understand is that autism is simply a set of traits with a underlying cause, not just some mental health issue. This is slowly changing as more is learned about autism, but all to often parents are simple handed a autism dx, and there child is given the #1 treatment for autism, antipsychotics! Parents are simply told to hope for a cure, and millions are funneled into organizations like "autism speaks", that uses this money to find this so called universal cure. Okay, I better step off my soapbox now...

While I dont know much about the Dr Levine program, in general target ranges would have to be tailored to your individual needs. Everyone is different, with different resting and max HR, along with differnt threshold levels, and different base conditioning levels.

I know I have had something since birth, or at least I developed something early on, by at least age three. My history is long and complicated to say the least! I had obvious "delays" as a kid, that were never properly investigated. A quick overview, At age 6, I got the dx of learning disabilities, speech/language disorder, motor skills disorder, started speech therapy, started occupational therapy. I developed sensory integration problems and real bad trouble sleeping. The help I was getting did help in some areas, but many things simply got worse. Around the age of 10-12 I developed double vision and nearsightedness. I then developed cronic motor tics and OCD, also developed painful swallowing, had my first blackout, developed headaches and experienced my first migraine, also dx hearing loss (mild). As a adult I got the dx of adhd, developed acid reflux, and developed exercise induced asthma. I experienced worsening of the headaches, dizziness, double vision, memory trouble, and last year developed frequent fainting. Developed worsening nausea when eating meals, and I vomit if I eat early in the morning. My whole life it seems I have been very succeptable to infections. In the past year I recieved a dx for aura migraines, and the recent positive tilt table got me a vasovagal syncope dx. The tests I have had in the past year have been, the positive tilt table test, normal ekg x6, echo x3, brain ct, chest xray, urinalysis, bloodworks, abdominal ct, lung xray. I was always very active up till the problems forced me to cut back. This past year has really forced me to look into what is going on. It is hard to describe to doctors in words what is going on and is very frustrating, it seems most doctors dont have patience for me.

A buddy had similar unexplained bruising, went to see a doctor and found out he had a really serious life threatening blood disorder! He survived it after bone marrow transplants and a year of treatment. Unexplained bruising was his only symptom! Standard blood tests didnt show much of anything, but a bone marrow biopsy showed the problem. Just saying, many blood disorders need urgent attention.

Just found these doctors listed on a dysautonomia website, might be worth a try, Dr. Michael J. GiulianiUniversity of PittsburghDept. of Neurology325 Scaife HallPittsburgh, PA 15261Phone: (412) 687-5424Dr. Susan Baser, M.D. Allegheny Professional Building 490 East North AvenueSuite 500Pittsburgh, PA 15212Telephone: 412-359-8860Fax: 412-359-8809Specialty: Neurology, Movement Disorder, Shy-Drager Syndrome

I am interested in the same thing! I live about a hour outside of Pittsburgh, and am trying to find a doctor in my insurence coverage area. If you dont mind me asking, what insurence do you have? Have you tried UPMC? I am trying to determine if UPMC has any doctors that would be helpful. It might be worth a call. Sorry I dont know any doctors to suggest, but I will sure let you know if I find one!

With the exception of Familial Dysautonomia, can a person be born with dysautonomia, or develope it within the first 5 years of life? I cant seem to find any research that actually suggests this?

No, I havent called my insurence company, I will look into getting a case worker. I looked into and applied for state aid before, for other health issues, but was denied. I think I was denied because I didnt take medication at the time, I dont know I have had trouble getting a good paying job because of trouble with learning disabilities/asperger. Going on disability is not a option at this point, since it opens up the chance of many problems for me. Thanks, I will try to contact the insurence company

Sorry your son has trouble. I guess I am lucky. I didnt realize how much trouble some people have with it. Taking miralax cures any issue I might have with constipation, but anything short of constipation, and I have trouble making it to the bathroom in time. I guess I was vague because this is embarrassing.

If my coworkers knew the messages I type on this phone at work!

Ohh! Looks like I am doing good then Seriously though, sorry you are having such trouble!

I just deal with my regular once a week, since anything that makes me go more frequently causes a whole new problem! : (

VO2 Max cant be accurately tested outside of a lab test. Any VO2 max "calculators" are just taking a educated guess based on the average person. Most large hospitals with a sports medicine program do VO2 max testing. I am not sure about the VDOT calculator, but after looking at it, I believe you are supporsed to use a HR monitor along with the calculator. For intstance, if in my last race, I ran a 5k at 17:43, then it is showing a easy pace of 7:41 with a HR target zone of 65-79% of max. They use the target HR zone that you set on the monitor, since simply running a 7:41 pace wouldnt take into consideration the difficulty of the terain you are running on. You must take into consideration that the calculator is using averages based on average people, and average max hr (usually based on age) and does not take into consideration your individual needs. The VDOT calculator is a training system, while a heart rate monitor is only a tool that must be used with a training system/program. Because of that, you couldnt compaire the calculator to the monitor, but instead would have to compair it to a HR based program. Just imagine if you went to the hospital, and besides hooking you up to a HR monitor, they simply calculated you HR based on what the average persons HR was while sitting, then went with a treatment based on that, combined with how well you ran your last 5k!

My health insurence (UPMC Health Plan PPO) only covers part of Pennsylvania. It seems it only covers one major hospital (UPMC) and a number of regional hospitals. There looks to be great hospitals within driving distance from me (like Cleveland Clinic), yet they seem to be out of network/area. I dont know, this sort of stuff really confuses me Do people normally pay out of pocket to go to those sort of hospitals? If so, how do the lower income poeple (like myself) actaully get a proper diagnoses and treatment?