Racer

It appears that the forum was once "protected", and now it is public for anyone to google/browse? Or was it always this way

Went from able to work to housebound over a year. Most of my days are spent in bed now

Welcome Beneficii I think most doctors recommend increased hydration, sodium, exercise for OI in most cases at first. I think the hard part for many is when this treatment does not work, and they cant convince the dr. Many dr just dont know how to treat oi beyond that (or even what pots is). I think Vanderbilt would be worth the three hour drive, since they are one of the few places in the country with a dysautonomia clinic.

I absolutely love fireworks (and anything that makes a big bang), but I did not get to enjoy fireworks this year thanks to being to sick...

I have "some" regurgitation, and was told by numerous cardiologist that it is a normal finding. I have also read that regurgitation is common in athletes. I guess it probably depends on the amount of regurgitation. The echo report should list the amount of regurgitation and your general heart function

This is confusing, what is considered a high folate level? Everything I seem to be reading only lists a low level for deficiency. I was prescribed folic acid, but just assumed my level was low. I was told that I have a problem with metabolism. High homocysteine level, b12 deficiency, mma mildly high (I think), low potasium, high ketones, low wbc count. I was started on the various vitamins while I wait for doctors to figure this out. My dys. dr suggested ivig, but non of the doctors seem to agree on test results. I suspect I am not going to get a defanant answer from my doctors if it is the cause of my dysautonomia

http://my.clevelandclinic.org/patients-visitors/parking-lodging-transportation/lodging.aspx http://www.expedia.com/Cleveland-Clinic-Hotels.0-l6148324-0.Travel-Guide-Filter-Hotels http://www.kayak.com/Cleveland-Hotels_Cleveland-Clinic-Campus.L6313.4321.hotel.ksp Seems to be some awful rough sections around Cleveland clinic (at least it always looks that way)

I dont do anything on that list other then cleaning my room up This is exactly what a occupational therapist is for! A alternative would be a living skills trainer that could assist you threw your local living skills center. They help you develop ways to accomplish those tasks independently. I recieved help before threw living skills center (because of asperger).

My opinion, ask for a neurologist. The neurologist in the neuromuscular center are the same ones who dx and treat dysautonomia. I am not sure what role the CNP plays in the neuromuscular center, but I would want a doctor to look at "burning sensation inside body".

thanks for the suggestions. I think I qualify for medicaid, but only if I dont work because they consider me disabled. That would pay for basic meds, but the problem is I need to be able to buy basic necessities also. I am sure I can eventually get disability, but I am not sure what to do till then. My parents do provide me with a little help and sometimes food (and a room!)but I also need to pay 200 per month in bills and at least 100 a month in medical supplies that wouldnt not be covered under medicaid. My parents cant afford to help me with all that. I am just looking to get the minimum I need to survive. looneymom, I see a dr at the cleveland clinic along with some great doctors at a different hospital. This was my local internal medicine dr. I need to find a new one Thanks everyone for your replies

Just curious why you are seeing a nurse and not a neurologist or even a physicians assistant?

My doctor says I am temporarily disabled, to disabled to work, but they put down on the form that they predict my disability to last one day short of 12 months, just so I wont qualify for disability. My health insurance has run out (again) and I haven't been to work in awhile. It seems my only option is to try to get a job, but if I don't get health insurance quick I will need to stop taking my meds because I cant afford them. I am going to start taking half my seizure med so it lasts longer. I already take minimum on other meds because I couldn't afford to take as often as needed. I dont know how I can work, but I feel the only option I am given is get a job and pay my own way, or die. I feel so bad, they told me I needed to apply for disability, that I would qualify, to get the papers and they would fill them out. Then they turned around and changed there mind when I showed up with the paper work. Not only that but everyone treated me so bad, like all I am trying to do is take advantage of the system or something. The stress this is causing me I cant keep any food down

My original reply was "I drive", but since then my drivers license was forcibly taken from me. I really feel that I can drive, but I would need to provide proof to the state that I am totally cured before they would think about giving me my license back. It is really depressing to me, because I used to travel so much before. I haven't left the house to do anything fun in a year. I just spend all my time siting in my room now.

I think you need to go to someplace like Cleveland Clinic, Mayo Clinic, etc. Regardless, good luck with your test

No, I meant to keep telling them, like when you show up for the test let them know again. I would keep asking something like "are you sure you will catch me when I fall" or make comments like "the last thing I want is a head injury". The last thing you want is a head injury, so I dont think you want to have a seizure in a uncontrolled setting. Plus, it will probably not mean much diagnostically without the seizure being caught on a eeg. A eeg and stress test are totally different tests. To test for the seizure, the eeg tech could possibly have you do deep breathing, hyperventilation/valsovagal maneuver, etc. They had me hyperventilate for over a minute, long enough that my arms went numb and I felt faint. You could also ask about a ambulatory eeg, they send you home with the eeg for a few days. I also had sleep deprived eeg off seizure meds in the hospital, another common eeg. I guess I am not understanding why you are wanting to try to diagnose a seizure problem with a cardiac test I would ask the doctor about the pharm. stress test if you need it done for the breathing issue. I would let the seizure stuff to the neurologists. That brings up my next question, why is your cardiologist diagnosing a respiratory problem with a cardiac test, do you see a specialist for your breathing?

Pharmacological stress test might be a option? They do all the work and you just try to relax. I am to much risk for a regular stress test. I had a EP drug challenge, similar in that they just hooked me up to the ekg and pumped the med into me that did all the work. I just had to relax and stay calm. My test was done in the ep/cath lab and I was hooked up to the defibrillator just in case, but I dont think they do that for a regular pharm. stress test? Anyway, let them know (like a broken record) you feel you have a likely chance of falling, having a seizure, etc.

I use Natures Bounty cherry flavor (what was prescribed to me). It tastes okay, no medicine taste, more like a chalky tums texture flavor. It can sometimes take forever to dissolve, especially with a dry mouth.

Have you seen a neurologist AND a electrophysiologist? Neurologist and cardio tend to do slightly different TTT and can interpret the results in much different ways. You could have one that is normal, and the other abnormal, etc. The much more comprehensive autonomic workup by a neurologist usually includes neuro TTT, qsart, breathing tests, standing catecholamine battery, 24hr urine, etc. The electrophysiologist tends to rule out heart rhythm causes with standard tests like ekg, holter monitor, cardio TTT, etc, and functional problems with a echocardiogram, chest x-ray, etc. I would like to believe that most with a definitive diagnoses have had all or most of those tests done. My neurologist wouldn't treat me until I had the full cardio testing.

Yes, I have times when I cant speak. It is very frustrating at times, but I just deal with it. I need more time and patience then most people to communicate. Much of the time I feel misunderstood. To often people complete sentences for me, wanting to just get on with there busy day. People can be awfully rude, and I have been made fun of, picked on... I was bullied in school, I have been fired from jobs... At my best I have conversations, and at my worst I cant speak at all. I was born with the problem and went to speech/language therapy as a kid. I also have trouble with spelling and grammar and use assistive communication software on my laptop to make posts, email, etc. I am thankful we live in a time when we have access to great affordable technology like smartphones and tablets.

Rice and beans, and enchiladas... good lord!!! I cant imagine that enchiladas (or food with spice, in general) is very good for sensitive stomach! I currently take zofran for nausea, and it works a little for me, but tends to help many. If you haven't already, I would find a good gastroenterologist. If you are loosing weight, malnutrition might become a concern, something a dr can monitor. I cant offer much advice, I have been experiencing the same problem for the past 9 months. I have tried every medication available with no luck.

My neurologist explained to me that the main difference between the cardio TTT and neuro TTT was the specialty of the techs and dr doing the test and interpreting the results. Evidently they cant have neuro and cardio techs and doctors in the same room doing the same test... that would be to crazy and conserve to much time and money. I fainted during both the cardio and neuro TTT. The cardio TTT was positive or negative according to if I fainted or not, and they left the table up till I was totally unconscious. The neuro TTT they wanted to keep me up as long as possible, but avoid me fainting. Unfortunately I couldn't speak a word once I reached the point of nearing faint, and they couldn't get the table down fast enough. I thought the qsart was very painful also! I am not sure if the level of pain is normal. I rank it up there with the pain felt pealing bandages off a bad burn.

Becia, you might want to look up "sensory integration" or "sensory processing disorder". I have had sensory processing issues my whole life. It affected me severely as a kid! I have found many ways to deal with it. It takes time, but you can get it under control. I have a endless number of tips for dealing with particular situations. For constricting clothing, I have taught myself relaxation technique to breath threw it and relax. Most of the time for me it is the built up tension, stress, and panic feeling that make it hard to handle. Noises can be handled with ear plugs, but we cant always get naked, so for me releasing the built up tension and stress is the only way to deal with it. A few things that come to mind that help... seamless socks, seamless underwear, toeless compression socks, compression vest, soft fleece blankets, weighted blanket, heated blanket, earplugs, headphones, stress balls, silly putty, massage, aromatherapy scents, lavender and calming lotions, gum or something to chew on, rocking chair, yoga, meditation, relaxation, bubble bath, theraputic body brushing (using surgical brush)... basically stuff that is seamless, soft, comforting and relaxing.

I am thinking most of those people post on dinet, and many members have blogs, just not much traffic on the chit chat forum I find this person amazing, has been threw so much http://livingwithgp.com/blog/

I am much better at expressing myself in text then I am verbally. Throw in stress and I totally freeze up verbally. My brain is not wired for conversation. During conversation I tend to freeze up when I need to process and respond to questions or keep the conversation going. I also don't do very well at all with handwriting, spelling, grammar, and math. It seems that these are generally skills required to get a "good" job. Past jobs I believe they made decisions to hire me not knowing anything about my disabilities, with misconceptions I had a intellectual disability or something. Ultimately I was mostly fired for "poor communication", and the other issues just added fuel to the fire. The communication problems also cause me trouble with doctors visits and getting proper treatment. It all causes it to be harder for me to even go apply for assistance, and the thought of even applying for disability seems like a overwhelming task. I need help to go apply for assistance, and it is one road block I have hit several times in the past. It is probably a good idea to follow everyone advice and go on disability. I just cant get the feeling of failure out of my head. I should probably see a therapist, but I wont, because it is a slippery slope of them forcing treatments and options on me that I do not want

Jan, MedicGirl, Thanks for the advice My post and my problem with working has as much to do with having asperger syndrome and learning disabilities as it does being sick from dysautonomia. I might be able to get healthy enough to try to get a new job, but the aspergers and LD have always been the main issues preventing me from getting a good job and keeping them. In the past I went threw vocational rehabilitation twice and received help from a living skills trainer. I exhausted all the help available for these issues. That basically got me dead end jobs from people who were sympathetic only or just wanted dirt cheap labor. I really did have a dead end job digging ditches in the rain! I want a job that makes me feel like I am worth something. My standards are not very high... dignity would be high on my list. I first learned I was "different" when I entered the first grade and was thrown into the special education system. From that point the focus was on what I couldn't do. The focus of the teachers was to fix me. At some point, the focus of other students was to point out my issues, call me names, typical childhood bullying. At some point around 12 years old I decided I didn't care much about life anymore. Probably the first time I ever became really depressed. I lived in a abusive house, and on a constant bases my dad would call me the "r" word because he knew it hurt me so badly to be called that. As you can imagine I had 0 self esteem. I was never given any opportunities, couldn't go to college, etc... I graduated high school with no skills to get a job or live life independently. After high school I was in the worst depression ever and it took me awhile to pull myself together and claw myself out of that. I have accomplished many great things since then, but have yet to get a good job. I am okay with going on disability because of dysautonomia, but I feel like I have failed on the other aspect. If I go on disability or something, I feel like "they" have won. "they" is all the people threwout my life who put me down or didn't believe in me. This job was another failure, and it is extremely hard for me to handle that. I know I should be thinking about things differently, but when you have grown up thinking about things one way, it is hard to change.