MightyMouse

Unlikely that it was due to money. More likely that it was due to problems they had with a few members misusing the forum.

We ran out of shirts; for some reason, for people who had bookmarked the site page it was still there despite Michelle deleting the page. I have some orders that I've filled in boxes, and Michelle will be finishing mailing the rest for me b/c it ws too overwhelming for me to get to all of them. If she has any left over, I'm sure she'll contact you. Did you know you can make your own shirts on sites like Zazzle or Cafe Press? I did that before DINET offered t-shirts and made my own shirt.

You can do this. You HAVE to quit smoking. I've seen my best friend's dad die from emphysema and it's horrible... mack's mom is right--it's scary! Make a commitment to yourself, and get help if you need it.

Lieze, my dad is completely pacemaker dependent and has an implanted cardiac defibrialtor as well (ICD). It's gone of quite a few times--and when his electrolytes aren't good, it goes off more often. He's had it for a few years now, and the battery now needs to be replaced. He describes the cardioversion as being hit in the chest with a baseball bat--it knocks the wind out of him, and it sometimes causes him to black out if it goes off a few times in a row. Nonetheless, he's living a pretty comfortable and happy life. I find it so ironic that he thinks I'm a hypochondriac, making up all that's going on with my health (because, you know it's all so fun that I'd want this all my life ) but now he has many of the same problems I do. He can't tolerate the heat, he can't stand for long, he takes a bunch of prescriptions each day and sees as many doctors as I do...

Okay, back to topic...sorry for my sideways rant about my dad...couldn't help myself...to Skyblu

ablation: how you do afterward is really an unknown for many of us. There are some people here who had such dangerous rhythms that ablation was an absolute necessity...and others who had it done before realizing it probably made things worse or provoked more symptoms than beforehand. The outcomes run the gamut, from people who do amazing well afterward to folks here reporting they're more debilitated and then the folks in the middle somewhere.

Not sure that helps much, but the issue is rather muddy--if you don't yet fully understand why you have dysautonomia (i.e. is it post viral, is it hypermobility related, is it something else on the long list of causes? If it were me I'd suggest due caution before letting anyone zap nerve bundles in my heart. Once they're gone, there's no going back.

I hate to be Susie-not-so-sunshine right now, but there are *plenty* of us who never got better at all. It really depends on how you got POTS in the first place. Since mine's genetic, and I got really symptomatic in my 20's (I've been symptomatic since at least 4 yrs old), sorry, there's no getting better. The best shot at improvement comes if you're one that contracted a virus, and the onset of POTS happens during or shortly after that. For some, the body seems able to heal over time. However, there are way too many of us who never got better for me to "buy" the "you'll get better over time" argument.

Good to know that I have a resource nearby if I need one!

At a minimum, look up information on sleep hygiene. It's based on solid research/evidence. All of the stuff you do with following the sleep instructions are free. I only gave you a few basics, but others include not using your bed or bedroom for anything other than sleep (and that "other" stuff that happens in the bedroom )--that means no TV in bed, no reading in bed, etc. It's part of training your body to associate sleep with that location.

So if you need to lay down, but not sleep during the day, consider the couch instead.

I have enlisted the help of my general practitioner when this happens to me. I will take a short course of sleep meds, and also make sure to do a few good "sleep hygiene" steps: 1. take a warm/hot shower (as long as my bp is good), which in turn kicks in your body's natural system to cool off, and a body temp drop is part of the sleep cycle. 2) don't engage in activities that rev me up before sleep, like video games, excited conversation, physical activity. 3) keep room temp cool and 4) very dark. I also have use a fan in the bedroom which I only turn on when it's time to sleep so my body associates it with sleep. Then I take my meds, and get to bed. Sometimes it takes me up to a week to get it straightened out...my body sometimes fights the meds.

Drinking alcohol will interfere with your sleep cycle and is not the best plan.

I live in NJ and have never heard of him.

Shire does a turn around and instead of pulling out from the Midodrine market, requests a hearing re: Midodrine (ProAmatine).

http://fdanews.com/newsletter/article?issueId=14022&articleId=130084

Sorry, but even "expert of the experts" is not correct in this case. And, he/she is YOUR EMPLOYEE, serving YOU. You have every right to disagree and/or pose questions.

Sorry, but the autonomic specialist is not as well informed as he/she should be. You can look at the symptoms list on the main DINET page--and many, if not most, of those symptoms are recognized in research papers and medical reports/books/articles to be part of the constellation of symptoms of POTS. On the good side, sometimes really good management of the primary symptoms of POTS (the tachy issues) can make lots of the other symptoms improve.

I hope that helps...and please always remember that just because someone went to medical school doesn't make them always right. Although they probably know quite a lot more about how a body functions, medically speaking, YOUR body is YOURS, not what was in the text book, or in all the patient consultations before YOURS... you always have the right to question what you're told, and knowledge is power.

Nina

Another story, this one in Bloomberg's summary of this week in healthcare...skim down 2 or 3 headlines to find the FDA/Midodrine one

http://www.businessweek.com/lifestyle/content/healthday/642874.html

Yay indeed!!! I see the surgeon for follow up on the 15th. I'm sore as all heck today because I started back to work f/t yesterday (first day kids are back to school). I love that I have my summer break, but it is so hard on me when I try to readjust to the routine again and all those hours working. Having the pathology back made me feel so much lighter mentally. Now, I need a cheering section to make me do my dissertation ASAP... actually I need more like a whipping, beating, or some other serious punisher to remind me of the monkey on my back because the motivation factor (increase in salary, decrease in bills from university, less stress), alone, isn't getting me there.

So, my steristrips fell off today, but unfortunately, the incision site started bleeding... so I'll be sleeping in sturdy undergarments for the time being, stuffed with gauze!

Anyway, I got a call from my surgeon today (yes, on a HOLIDAY no less), she was just checking her faxes from home (she gets them digitally forwarded) and wanted to tell me the good news. The tumor she got most of on Thursday's biopsy was a benign fibrous adenoma. Yay for me! A few friends took me out to toast to my somewhat scarred up and bruised but otherwise healthy front end!! Was a nice way to end the weekend before I have to head back to my job again tomorrow.

Thank you to all who sent good energy my way; even though I live alone now, it's good to know you're all out there (here?) (oh, you know what I mean!).

Nina

DINET is one of the few organizations that represent us. The four largest groups for us that I'm are of are DINET, NDRF, DYNA and FamilialDysautonomia.

Even with more common diseases, there are often multiple representative organizations.

Each organization has it's own function, but we do often work together...for example, people who are organizers of two of the other organisations frequently exchange emails in private over major issues. Additionally, there are multiple physician groups that advocate on our behalf (see Heart Rhythm Society's page for what they've done to help us keep midodrine available). Is what you're asking "do we have an organization to advocate for us in government and community issues??"

In order to do things like lobbying for funding, unfortunately requires either someone(s) with the physical energy to do so, and the $$ to pay for trips to political offices, hearings, etc. So to make money, you need money. Lots of money.

On DINET's very limited budget (all donations) and staff (all volunteers), Michelle's focus here is to provide 1) a forum for all of us to share what does/does not work for each of us, 2) find reliable information based on the prevailing research (see the main site, all pages are cross linked with medical study references) and 3) improve medical awareness and public awareness (see brochures you can download and print, and DVD's which are FREE).

Dr. Grubb also treats some patients with Octreotide, as do some others. Good luck in finding a doctor with the NHS, I know it's no easy feat. Perhaps try to hook up with other UK patients here--I know Persephone is another UK patient and has used this med. You may want to message her.

I can't right now b/c the study isn't published yet, but as soon as it's released, I'll post a link.

I can give you general info though on mechanism of raising bp-- octreotide tells your gut that it's not time to digest right now, and forces some the blood flow used for digesting (30-40% of your blood volume) out to the rest of your body. That's why the cramping can happen... one of the worries of the researchers was that it might cause hypertension, but they were surprised to find that in hypermobile patients, that didn't happen.

Nina

I'm still doing a happy dance that our rag tag little crew of medically disabled folks brought the FDA to it's knees... or at least to where ever they had to stoop to reboot their server after we crashed it with our emails.

Seriously folks, here we are, a bunch of folks who have major medical problems, some who cannot function well without help and some like me who scrape along just enough to make it through a work day before completely melting at home, and we STILL were able to pull off a miracle. I'm so grateful to be a part of this place and to call you my friends.

Nina

Jonathan, I was just out to see an autonomic specialist and we discussed Octreotide. He suggests a starting dose of about 50 ml (I think that's the right units) per injection, 2 times a day, as much as 3 times a day. They're about to publish a study on the use of Octreotide injections for folks who have the hypermobile issues and POTS; If I recall correctly what he described to me, it did a really nice job of raising bp, stabilizing heart rate, without causing hypertension. I do know others in the UK using Octreotide-perhaps they'll chime in. Unfortunately, many of the docs there are suggesting max of 25 ml per injection, which is probably too low to get much benefit. My doc was saying he has patients safely taking up to 100 per injection.

I've trialed the med myself. I did have side effects initially, the first hour--it caused some intense abdominal cramping. I'm told that the longer I use the medication, that the side effects would not be nearly as bad.

good luck!

I've had several EMG's...maybe 5 or 6 so far. I've had my entire upper body and upper spine/neck. It was uncomfortable, but not bad enough to make me not do the test. Easier than getting a dental filling.

I finally figured out how to approve new waiting members Sophia.

I can't tell you all how proud I am that our rag tag crew (small as it is) locked up the FDA website because of the fuss we made over midodrine! Just goes to show that fighting against the government can actually go the way you need it to when you join forces. Couldn't be prouder of our members than I am right now.

Nina

Hope you continue on a path of less pain and more good times.

As for your messenger, I just figured it out myself. At the upper right of your page, you'll see your picture and name. Click on your name and a drop down menu will appear and shows the messenger word to click on. The forum software also now calls messages "conversations". Confused too, but I got some good sleep last night and am trying to figure it out.

Hang in there girlie.

That's okay Sophia, I'm clueless too. The interface for me to do my admin stuff is completely different... totally working on my learning curve.

friends took me to dinner tonight, and I have a doggie bag... so lunch is done for tomorrow! I'm really sore today. I have moments wHere I really don't feel much and then sudden ouch moments where the stitches are. I'll let you guys know when I get the results back.

Nina