MightyMouse

Aaron, how fortunate that you got your diagnosis so quickly. That doesn't happen often, as many of our members can attest. As to stress/ panic, it will definitely cause problems because it involves huge release of catecholamines, which speeds up all your body systems.

I know patients who've been able to pick up cancellation spots, but his office does NOT keep a 'will call list' because of the volume of people wanting an appointment. They way the folks got those appointments was by calling the scheduling folks from time to time, and always being pleasant while asking about openings/cancellations. I have been a patient of Dr. Grubb's since 2001. I have found that when I'm there, I have always had his undivided attention. But being 10 or 11 hours away is far from optimal. I made it a priority to find a local cardiologist who's willing to learn about my disorders and become a better expert--that way if I'm in a crisis, it's much easier for me to get treatment in person as a well established patient. FYI, it took me a few tries to find the right cardio -- and the few before I found him were horrible. One actually told me I was perfectly healthy and to go home and have a nice life and stop going to the doctor. Right. That worked out well. NOT (sarcasm).

Good for you Alyssa. I have to tell you, when I had to wear a hard brace for my neck for more than a year, people did stare. I only lost my composure once that year at Applebees of all places. An entire family of 4 (two teen sons and mom and dad) stared at me for what felt like forever. I finally got up walked to their table and said "what are you staring at?" All four burried their noses in their menus and didn't say a word or make eye contact, so I then said "Clearly your children learned how to be this rude from you two." I know, I know, not very buddha of me (I try to follow a path of kindness)--I clearly lost my noodle in that moment. I then went back to my table and finished my meal--with my neighboring table avoiding looking my way as if they'd catch fire if they did. I suppose staring at 'what's different' is human nature. We like our conformity. Enjoy your non-conformity knowing you are NOT alone. Peace, Nina

Even if you live in the middle of nowhere, you can get really good gluten free stuff online and have it shipped to you. Here are my favorites: all of the Tinkyada brown rice pastas-they taste closest to the real deal, but DON'T make extra to re-heat later b/c it will turn to mush. Aunt Annies Mac & Cheese MyDel g/f cookies There are some really good g/f breads out there that I buy frozen at my grocery store (Wegmans). I've really liked the Trader Joe's brands of g/f stuff too I did NOT like any of the eNjoy life's items... Love Mary's Gone Crackers brand stuff--made with seeds and good stuff. I usually eat a Paleo diet, which is easy on a g/f diet b/c no grains are in a full paleo life. I follow the Mark's Daily Apple blog--I find his advice to be the most balanced--a few other sites were too militant, and I really need to eat dairy to keep my gut flora in check and many of the other paleo "gurus" eliminate all dairy. Good luck and there is LOTS of stuff out there. Consider a google search for safe and unsafe foods--I use this site for their list if I"m not sure, and you can buy stuff through them too (by the case, so try elsewhere to buy just one to taste test, and if good, I purchase in quantity and save myself $$).

@Mac's Mom, it's fine to reprint it here on DINET. If reprinting other places, you'd need permission.

I think what the article was saying is that MCS isn't, in and of itself, a diagnosis accepted by the majority of the medical research--that doesn't mean it doesn't exist (or that it does), and it certainly doesn't discount MCAD/MCAS at all. All 3 disorders might be related...or they might not...research will tell us the answer some day...just not today.

I take 300 mg of gabapentin (generic Neurontin) once in the am and once in the pm. I take it for spinal nerve pain/neuropathy, not for dysautonomia. I know others who take it for migraines (I do have slightly improved migraine issues while on it). If you have neuropathies associated with your dysauotonomia, I suppose it could help.

Serbo, the body doesn't treat psychological stress any differently that physical--both set off the fight/flight reactions the same way; and that includes huge dumps of histamine into the body.

You might want to search the archives because I know this topic has come up before.

I've never been able to get off of a proton pump inhibitor; I started on them around age 23 or 24...and now I'm 47. I've tried several times but the heartburn and pain just got so out of control so fast that I went back on; I need nexium 2x a day in order to survive. I also am on benedryl, zyrtec and singulair every day.

There is conflicting information on the diagnosis of multiple chemical sensitivity. I am not contesting the improvements some have seen--just saying that there's limited data at this time supporting the diagnosis and treatments out there. As time goes on, better information may be available supporting or opposing. When I read about or hear about treatments I'm not sure about I usually check Dr. Barret's website to see if there's info. -Nina

I used to use a recumbent bike that had a built in heart rate sensor... my hr would do very odd things... and I had a watch that did the same--when I used to run, my hr would sometimes drop into the 50s for several seconds at a time...and then pop up into the 120s. I used to think it was a fluke but it also happened during treadmill testing at the cardiologist office. He didn't seem concerned; chalked it up to my personal body quirks.

Oh, and ditto to Mack's Mom's suggestion to report the entire incident to the director of the clinic, or to their board of directors, as well as filing a complaint the Nevada Dept. of Health/Medical Board, who would oversee the credentialing of all doctors in that state. If it is possible that you weren't completely medically stable, that's another issue too--at that point, there IS a duty of care to treat you or transfer you to hospital ER

As part of my degree program, I had to take a course in ethics for psychologists--who actually have even stricter guidelines than physicians. In general terms, the first major rule is "what would a reasonable person do" in that situation? And, if there is an exchange of money, they physician then does have a "duty of care" to treat you/stabilize you, etc--which explains while he returned your money in order to absolve himself of that duty. However, in my reading of the law, he was operating in an emergent care capacity--so all he needed to do was to tell you that you are stable and let you know that he cannot order the tests because his role is just to deal with the imminent emergency. Then his next step should have been to refer you back to your primary doctor. Doctor's in emergency facilities do not have a duty of care to take care of you long term--just stabilization and then referral to the proper speciality and/or admission to hospital. Always remember that the only difference between the rest of humanity and any doctor is the amount of time spent in school. They aren't necessarily any smarter, any nicer, any better a human than the average "joe." And, they can be stupid too...as a famous american comedian says "you can't fix stupid." Might I suggest that you consider getting a written order for the tests you need from your primary or specialist doctor? That way in your next potential crisis, you can head for the tests right away. My doctor and I had done that with order for a specific type of GI testing so that I could have it done when I'm symptomatic.

I wonder why florinef wasn't suggested? Or many of the other well known meds that are mentioned here by many patients--mestinon, ocreotide, yada yada yada... heck, maybe he could have read the "what helps" page on the main DINET site

that medication is also available as a suppository. I'm allergic to it, but it did work for my nausea when I used it.

I have worn one for about 10 years, and I decided to go with MedicAlert brand for the tag and maintenance of records, which I can update online. I make my own bracelets for the tags, and I have instructions on my website on how to make your own. Go to left menu and click "make bracelet"--gives you step by step instructions, with photos of each step, and ideas for where to obtain the materials you'll need. The bracelet came in very handy when I was in a major car wreck in 2009--the ambulance called the info in and before i arrived in the trauma bay, the hospital already had my list of medication allergies and conditions, and had my gp ON THE PHONE with the supervising physician during my trauma treatment.

the autonomic systems absolutely DO have some of the control dilation and constriction of the pupils. Mine are particularly huge in the mornings.

I don't have chest pain ever--with the exception of when I have asthma, bronchitis and/or pneumonia

Whether or not you have remission, or permanently get better completely depends on *WHY* your body is malfunctioning in the first place. For folks like me, with a genetic cause, remission is unlikely. People who have major nerve damage or major damage to the systems that produce the hormones and other chemical systems that regulate bp, heart rate, digestion, etc. also may not experience remission. It's been reported in the literature that people who have a sudden onset following a major viral infection are the most likely to someday get better--that being said, sudden post viral onset is not a guarantee of recovery or remission. Years of experience here and on other forums make it easy for me to say with assurance that *most* patients experience a waxing and waning of symptoms--relative periods of "betterness" (not usually *all* better to pre illness levels, but better than the bad times) and relative periods of "worseness." Nina

Emma, for an overview of research, try looking on the main DINET site under the mechanism's section, and then the associated references. http://www.dinet.org/what_are_the_mechanisms_of_POTS.htm As for a concise description, you may consider downloading the free pdf handbook from NDRF, and in the chapter on types of dysautonomias, there's a section on the hyper type http://www.ndrf.org/NDRF%20Patient%20Handbook/SecA_pp59-134.PDF

Actually, behavioral research shows that some people learn to control it very well... look, for example at some branches of Buddhism, where there are monks who have learned to slow their heart rates down amazingly slow. Others have learned to change their response to external temperatures, and nearly naked outdoors in subfreezing, are able to sustain their body and skin temperatures overnight, wearing wet sheets. Those are extreme examples, but anyone who's had training in biofeedback has the potential to control heart rate, blood pressure, startle, etc.

Midodrine's side effects are mostly having "goose bumps" all over. It can also cause high bp while laying down so my doc told me not to take it within 4 hours of bedtime. Any side effects are very short lived b/c midodrine only stays in your system for a max of 4 hours per dose--so if it's something you can't tolerate for some reason, it'll only be in your system a short time and then gone.

Julie, your son and I are opposites--Claritin did nothing for me. Also, I tried Alegra, but it made my heart rate go wild. For some reason, certain brands of zyrtec are just perfect for me. I suspect that it's the carrier stuff my body doesn't like when I've had problems. I've never had a problem with the name brand version.

Sorry, but the rest of the world usually doesn't get it. Even others with chronic illness will sometimes say those things b/c our illness isn't as obvious. My family has said horrible things to me over the years. But, others here are correct, this is the place to vent about it, to talk to people who know that you don't just "get over it" (well, unless, of course, you're one of the few who really do just get better... I'm not one of those), and get ideas and information.