MightyMouse

I guess in my job, all I do is write OAP notes I'm a behavior analyst, and we leave out the subjective and go straight to objective, observable and measurable things--assess based upon the data, and tailor plan to address based upon that assessment.

Good for you! Even if you don't get a reply, once you send it, you will likely feel better--at least I did. The replies I got only made me feel better. My final thought on this is to also check if the hospital has a patient advocate--most hospitals do. You may want to either cc that person, usually a nurse, or give that person a call and see what support they may be able to offer you.

I actually did a very similar thing as Jackie suggested once--I wrote 3 letters. One directly to the doctor who essentially told me that if I did biofeedback and exercised more, I'd "get well."--yeah, right, that'll fix my genetic disorder. I wrote another to the director of his practice, who also happened to be my neurosurgeon, and another to the board of directors of the affiliated large teaching hospital. The doctor who made the statement was part of an interdisciplinary team and was a general neurologist. I received a WRITTEN apology from the offending doctor, and a phone call from the head of the practice who told me who upset he was that I had been treated that way. I have to say the call from the head of the practice was very satisfying.

Here's what I've done: wrote a letter explaining reasoning for leaving, and then requested a complete copy of records. I would expect that they will charge you for your records--especially if you're having them sent to you, not another doctor. (I personally request my records as complete with doctors notes b/c sometimes they'll edit out things like letters they may have sent to other physicians I had at the time). Sorry you had a bad experience. Doctors, unfortunately, are subject to the same human failings as the rest of humanity

I haven't b/c i'm allergic to ragweed, and chamomile is a relative. However, I have used tumeric, which I make into my own capsules. I get the ground tumeric at my local indian/pakistani grocery--a pound costs me under 10$, whereas getting tumeric capsules at the local health food store are very pricey--20$ for a 100 or so. The active ingredient is Curcumin There is some evidence out there that curcumin has anti inflamatory properties: http://www.cancer.org/treatment/treatmentsandsideeffects/complementaryandalternativemedicine/herbsvitaminsandminerals/turmeric

I have faxed my questions in writing, which at times seems to get a better response. Sometimes it's not the doctor by the administrative staff answering the calls who aren't necessarily getting the "meat"of your message. I have a few treasured doctors who have given me their direct email addresses and ask me to skip calling the office and just write them.

Please note, that while I DID remove gluten from my diet, it's after I was tested for Celiac and told by my GI doctor that I needed to be gluten free from then on... You can try it and see if it helps you, but if it doesn't it's so restrictive for those who don't live close to specialized grocers or big cities where restaurant options are easily found that I wouldn't suggest it to the average person with autonomic problems as a life choice

there are PLENTY of other meds to try before beta blockers. Most of them work on other pathways than cardioactive

My test was very short and they stopped before I passed out b/c they got what they need and the doctor told me I failed with flying colors.

All the friends I've known who used it were getting it shipped from Canada. As long as you have an Rx you can fax or scan to them, you can have it shipped to you.

ahahahahhahahaha! I always feel hot!!!! I got teased by my family growing up because I was always complaining "it's hot in here!"and "I feel like I'm gonna puke!" No one else felt that way, and I should have figured out earlier that I wasn't made the same inside--32 is kind of late to have figured that out, given I had my first full on faint at age 4.

My body usually doesn't let me pass out--it gives me plenty of signals to get flat or sit, like shaking, sweating, nausea, tunnel vision, feeling like a huge weight is on my shoulders and upper back, feeling like my legs are full of lead, difficulty thinking. If I ignore all those, then I will eventually drop. The event that finally sent me for my diagnosis was at age 32, mowing the lawn in 90+ degree weather and very high humidity. I passed out on a hill that was visible from my neighbor's home, who saw me drop and lay motionless. Freaked her out more than me. Then later that day, I nearly passed out in the shower (well, I was all sweaty and covered in grass clippings, so I kind of needed one), but my ex was with me and I started yelling from the bathroom to come help me. I now know better than a hot shower when symptomatic--cool shower better idea.

I sweat a lot, feel sick to my stomach, hard to think straight. Then I get exhausted afterward, and need to rest or sleep. I often wake up feeling like I'd run a race; sore, achey. I have occasionally gotten to the point where I needed assistance to walk or in a few rare instances, needed my ex to pick me up from work. To avoid that stuff, if I know I'll be standing a long time, I will reluctantly wear my support hose (hate them). I also will wear my cooling vest if it's going to be over about 72 degrees.

Exactly. I have two diagnoses--- POTS and NMH

I was laid down flat for 10 minutes, then 80 degrees upright for all of 5 minutes before the doctor ended the tests (no meds administered) because they lost my blood pressure at 50/-- and my heart rate was climbing fast, I was just about to faint and they put me down. At 15 minutes, my cardio said "You failed with flying colors"

I have a friend who's seen him--try looking up posts by "flop"using the search feature. Are you 100% certain you'll see him and not one of his research associates/consultants? Also, from what I understand, you may gain insights from him, but your local consultant may or may not utilize the input from him as a private physician and not an NHS doctor. just drawing from memory of discussions by others on this topic over the past decade. i'm not in the UK

We're all different--I have low bp in the mornings so the coffee helps my heart keep up. Without coffee I'm a mess--but it's a balancing act because too much and I have a whole different mess. I drink no other caffienated beverages during the day--no cola, mountain dew, etc.

I was told to drink one cup in the morning by my doctor. If i have more than that, I get too jittery and tachy.

From what I was told by my doctors, I needed to be off florinef for a full two weeks prior to any testing b/c I was told it takes a long time to clear your system. Additionally, the day of the test, I was allowed to bring my rescue inhaler but was asked to avoid using it if at all possible b/c the medications in it tend to help speed up heart rate, which can interfere with test results. I was permitted to continue taking zyrtec and singulair, but not take ANY medications with a decongestant like Allegra D, etc., again b/c the stuff in the "D"are cardioactive.

I'm now on my second cooling vest. I left my coolsport vest and 2 sets of packs in the garage over the winter and spring... sadly everything is moldy--including the interior of the packs. So, I bought a new one from a different company this time, the one by glaciertek. I saw a friend wearing it and it looks so much more "fashionable"...if that's even possible!

I sweat like a faucet and have severe heat intolerance. It's very typical of our group of patients.

I have venous and arterial spasming every time I've had an IV or A-line... and I had it as well during a cardiac catheterization at NIH. I had 2 ep cardiologists in the room--one was physically present during the test and I was not on any anesthesia other than local at the insertion site, so I remember everything with clarity. The other was there remotely but was able to see the rhythm and provide a second opinion during any "events. I did end up having a weird run of heart rhythms, mostly inverted sinus, and felt dizzy/faint despite being flat on my back--however, the doctors both said it would pass and that the rhythm I was in was not dangerous. During EVERY test with an IV and/or A-line, I could feel the spasms--it was painful but eventually settled down after 20 or 30 minutes (one of my tests lasted more than 8 hours with lines in while I was inside a PET scanner)

Bebe, a few years ago, I had a neurologist consult which started off very badly. I could tell from his facial expressions and body language that he thought I "looked very healthy". I wasn't going to go back to him for a second visit, but my ex convinced me to go so I could at least get copies of the results of the tests he'd ordered. As it turns out, I am a perfect example of not judging a book by it's cover. He actually said something to the effect of how deceptive it is that I come in such a cute and healthy appearing package--and yet I'm a complete mess. It was everything I had in me not to leap across his desk and strangle him because as a doctor he should know that's possible. At the same time, I know that he sees plenty of people seeking drugs b/c his practice specializes in pain management. Whatever. I kicked him to the curb too. While I may have taught him a quick lesson, I don't want a doctor who's first thought is that I'm either a liar or exaggerator. Nina

You are welcome Andy. I've been to the place you are... be kind to yourself, give yourself time to be sad, and when you're done with that... move along! You deserve better than someone who doesn't have the guts to say goodbye BEFORE moving to the next partner.

There are over 3000 members of this forum; as Katherine says above, I'm only aware of one who had a heart attack in my tenure here--which is approaching 10 years. That being said, of 3000 people the incidence of heart attack should be more than one if you just base it on the general population studies-- CDC says it ranges annually from 1 to 7 people per thousand and somewhat depends on where you live; for example the deep South areas of the US have the highest death rates. So that would mean a minimum of about 3 people PER YEAR based on our membership numbers could be having a heart attack (or 30 people in 10 years). All that being said: many of us are followed by cardiology specialists a minimum of annually AND many of us take medications that control our blood pressure...and many of us are intolerant of some of the things that are correlated with increased risk, like drinking alcohol and smoking. So, we have a better preventative regimen. In all the years I've been doing reading about POTS (about 18 or 19 years), I've never seen ANY published scholarly research showing increased heart attack risk in our population. However, I can't recall if there are medical studies of folks with POTS being at higher risk for stroke b/c of uncontrolled or very high/very low bp, but from a logical standpoint, that could exist. Additionally, there IS research showing some people who have developed severe problems with fainting after having cardiac ablation that limits the heart's ability to speed up are at risk for things like head injuries from fainting... which is particularly problematic if you're blood pressure is dropping--the body's natural response is to quicken the heart rate to get blood to precious areas like the brain... The few people I know who have NET transporter defect gene also have sets of problems that differ from most of us with POTS-- my one friend has a ICD and pacemaker, and still faints, and has seizures. If you want to investigate for yourself, a good resource is google's scholar search b/c it sifts out articles not supported by research.