MightyMouse

If I'm not mistaken, Hannehman offers autonomic test... or maybe it was Jefferson? Also, I see an ep cardio at U of P at their 8th and Spruce campus--he's *NOT* an autonomic specialist, but he's had me as a patient for more than 10 years, so he "gets it". Nina

oh, and if your doctor is being really fussy, you can separate it into "autonomic dysfunction" as that says it all. What's more, there's a very well established condition (genetic, mostly seen in Jewish families) called familial dysautonomia... Oy. Some doctors can be so hard headed.

Rather than head over to a medical dictionary, I went to the website many doctors use you look stuff up: the National Institutes of Health. They not only define the term, but have a full page dedicated to describing fully what it is, how it happens, etc. http://www.ninds.nih.gov/disorders/dysautonomia/dysautonomia.htm

I have also written to my congressman (Christopher Smith) and the FDA. I'll let you know if I get anything more than a form letter back.

Katherine, you got the information correct as far as my understanding goes. Also, you've provided nice, concise, well written explanation and request for support. Well done. Nina

Inside only so much as Michelle and I are within the email loop/cc list for a good sized group of doctors who were blind sided with this last week and now strategizing on what would be the most likely way of getting patients what they need. I haven't heard anything new today.

Reen is correct, it's NOT a safety issue. If it were safety related, the drug would have been black boxed (restricted use to last resort) or removed entirely from US market.

Calling your POTS specialist doc is probably not necessary at this point--I can tell you definitively that, YES, they are strategizing. I have read numerous emails from most of the names you'd all be familiar with. Rather than clog up their phone lines, your time might be better spent contacting the FDA, if that's something you're inclined to do. As to the specialist in the US who've been emailing with each other about this issue, when I get info on what they have collectively decided to do, I will share that information with you, to do with what you will. There are already wheels in motion with regard to some special committees working together to try to either pool data that may already exist or lobby the FDA to keep proamatine around using other means. There's no more yet, but I can tell you that certainly within cardiology circles, there's loads of POTS savvy physician's working on this. It's possible that the generic makers may be able to take over, and they have longer than Shire to get data together (until at least some time into the end of Sept according to some of the emails I've gotten). Additionally, there are also special circumstances for what are called "orphan" drugs, where the FDA may let them continue in the market. It's possible that proamatine may end up there. Lastly, it may be available from overseas or Canada even if not here in the US, such as some of you do with domperidone aka motillium. Seriously, clogging up your POTS specialist's phone line at this point doesn't have much value with regard to keeping the drug available--and uses up resources in their office that could be put to better use. If you're calling, however, to try to switch meds now in the event that the drug does leave the US market, that's another story.

Wow. That's really unfortunate for those taking midodrine here in the US. I wonder if it will be possible to import from other locations such as Canada, Mexico or Europe in the event that the FDA withdraws approval?

reminder to all ... please be patient. Thanks!

Typically, no, the patient with dysautonomia has no MRI abnormalities aside from the same variations seen in the general public. This is at least the case with research so far. There is some evidence that cerebral blood flow is compromised during a syncopal episode, but once flat, blood flow should be normal (based on fMRI) and hemodynamic studies (studies of blood flow). Nina

Thank you for the reminder Michelle. I'm excited to see the new website up and running... hopefully, I'll get the hang of the new features quickly! Nina

The NeilMed is not a neti pot, it's a bottle where you're head is leaning down and forward over the sink--the water should not go down your throat at all if you are positioned correctly. I cannot use a neti pot because of my fused neck and being unable to tilt my head the way you're supposed to. Nina

I just realized someone suggested colloidal silver... I'm going to disagree. You can get metal poisoning from colloidal silver; it was used heavily before antibiotics were discovered and can cause permanent skin and eye discoloration. There are other options, such as the xclear mentioned. I use agrumax. Again, the NeilMed system is really my only saving grace with infections. My allergist wont see patients long term if they aren't using it or some other rinse method b/c the research shows how much rinsing matters in keeping your sinuses clear of allergens, bacteria and foreign substances that can cause inflamation, which in turn can cause stuff to get blocked and infected.

My issues may not be bacterial as much as fungal, so to my NeilMed system mix, I add a few drops of a natural antifungal called Agrumax, which is an extract from grapefruit. I prefer the NeilMed bottle to the neti pot b/c I have poor movement in my neck to get in the proper position for the neti pot--and also, the bottle allows for a faster flow of liquid volume to pass through and clean stuff out.

Loose joints, full and/or partial joint dislocations, early onset of arthritis-like changes to joints can all indicate a collagen problem. Could be EDS but could also be something else. No, it's not POTS exactly, but is an issue that can actually contribute to POTS symptoms. Personally, I'm having problems with 3 major joints right now from sitting in my car for too long over the past few weeks--my right hip, right shoulder and knee. I know they are all out of alignment, my hip actually "locks up" within the joint when I go from seated to standing up. I used to be able to get the joints to return to position on my own, but as I'm finding out now, it's not as easy any longer--probably have scar tissue or arthritis boney buildup that's in the way. If you want to look over the main DINET site on how EDS and other collagen defects can cause POTSy issues, please read the "mechanisms" and "causes" sections. http://www.dinet.org/what_are_the_mechanisms_of_POTS.htm http://www.dinet.org/what_causes_pots.htm

You don't have to be able to sew to make a vest-- you can buy two inexpensive vests, lay them together and use hem tape, which is an iron-on product, between them to make the pockets. The tape I use is the heavy duty version of "stitch witchery" and can be found at any sewing supply or craft store

the only thing I can share with you is that I always remind myself that this is a rollercoaster ride... and eventually (although I never know when, kind of like Disney's Space Mountain), it will chug bag up out of the gully.

I had decades of unsupportive family, as well as some who actively undermined me by telling other family members that I was not really sick and just a hypochondriac wanting attention. Eventually, a few members of my immediate family came around, and I can now really rely on them in a pinch, which would have been impossible even 5 years ago. Hang in there as best you can, and I like the idea of sending them the DVDs b/c it's sometimes easier to see what's going on with a stranger than it is with a family member. Nina

She did not need surgery, the meds took care of it all. I will tell you though, that she needed to have her husband bring the meds to her in bed because she got horribly nauseated if she didn't--which they warned her about. She was prepared to have surgery, but like I said, the medication took care of the tumor, which shrunk enough for her to eventually no longer need them, and then get pregnant. It's important that your MRI be one that's of good enough quality; the MRI's where you're seated upright, or not in the "tube" are generally to poor quality to look for the type of problem they are trying to rule out for you. I hope you get the answers you are looking for.

Hi prolactin, high cortisol that didn't follow the correct time pattern, and abnormal TTT, but didn't fit POTS or NMH/NCS. She was initially diagnosed with autonomic dysfunction, then that changed to pituitary tumor following seeing my GYN, who said, and I quote: all roads lead to pituitary, you need to get a brain MRI. The next day she had the scan, and i went with her to pick up the films and report--clearly said there was a mass. She responded perfectly to treatment with meds, and got healthy, and eventually had 3 children. With the high prolactin, she sometimes had breast tenderness/swelling, but rarely had any type of discharge.

I often feel like my legs are made of marshmallow when it's really hot.

Fri, I'm still sick from living that way, but I didn't really have a choice. I wanted to go to a hotel, but that would have meant it would take longer to come up with the thousands of dollars to replace the central air. Tomorrow makes 1 week with the AC back on. During those 3 weeks, I stayed in the basement, but the last few days it got up to about 80 in the basement, which is too hot for me. I used my cooling vest, I bought large bags of ice and put the ice in huge pots, which I placed in front of the fan in the basement (yeah, air conditioning circa 1932). I also used a water mist on my body rather frequently and then stood in front of fan for about 60 seconds of happiness. It was so hot inside the house at one point that my automatic ice maker in my fridge made exactly one batch of ice all day -- 6 cubes. Normally, it can fill the holder, which is usually enough for a big dinner party without ever running out. I've been sleeping a lot this week and need every minute.

Welcome to my everyday driving world! I am used to driving here, so when I go to other parts of the country, I feel like everything is going in slow motion. The only thing that rivaled the skill need to drive in NJ and NYC is when I drove through the mountain/cliff highways in Croatia. Holy smokes. They do those darned steep switchbacks and curves at high speed. At least then, I didn't understand the curses they were screaming at me! Now I might "get it" because I actually speak enough to get by. Hoping to go there for a kayaking vacation next summer... a girl can dream (I don't have any $ currently... okay, that's an understatement)

Maxine, I'm cracking up about your commentary regarding crazy driving... you just got a small taste of how crazy it can be. Head up to NJ if you want to see ultimate crazy driving; your first test would be navigating traffic circles, which on the way to the shore, I pass several. In fact, before my dad let me drive unaccompanied, he made me drive from our home to my grandparents and back, which went through no fewer than 6 traffic circles--and these aren't little small town circles, these are in the middle of 2 or more highways. Add the fast driving to the failure of many NJ natives to yield to other vehicles and you get a white knuckle thrill ride. You can get a close approximation if you rent a car at Newark airport and then try to find your way to your destination while other drivers whiz past you, tailgate, honk, and give you the local hand signals to welcome you to our area of the country (I never feel at home until I've gotten at least one bird flashed my way). Nina