Lethargic Smiles

The current cost is 5,000 which includes the equipment you need to use at home following the accelerated 2 week program.

What I've read is with a lot of practice, it just becomes automatic. My understanding is it is sort of like when people are re-learning to walk. They are very conscious of each step and placement of each foot, but with time, they are back to walking around effortlessly without a second thought. The body just remembers what to do supposably. Patients from this program also do maintenance sessions after the initial intense training (2 weeks in Dallas/3 months at home) to keep everything fine tuned. Interested to hear someone's perspective who has actually done it since my knowledge is all from reading.

I've always wondered the same thing Bebe and now we know. Sometimes I don't want to clog up the thread by saying something like "I agree" or "You go girl!" and wish I could just click "like" as a form of encouragement.

Carrie -- thanks for that interesting link.

Wonderful news Charlotte!

Any store with a drug section should have them. It varies where they keep them. Some keep them by pain medication (especially the Excederin), sleeping pills, or diet pills. I've noticed it is overwhelmingly kept on the bottom shelf. They typically come in 200mg pills and are pretty cheap for what you are getting, especially compared to a caffeinated drink!

Does anyone have questions they would like me to ask while I am at the treatment center? I'm not afraid of going in with a list. Lynnie -- Daddysgirl can probably answer this better than me but I thought I'd share what I know. It is all about recognizing when your ANS is going in sympathetic mode and deep breathing to help switch it over to parasympathetic mode. My understanding is it is a couple hours of biofeedback training each day. It starts with you in a recliner and you work your way to standing (if able). So while I am concerned it will be exhausting for me to do something for such a long time, it isn't like they're throwing me on a tilt table or making me exercise like they had to for all my testing at Mayo... so I'm hopeful. Some people actually report the sessions making them feel better rather than symptomatic. I've grappled with the idea I can breathe my body into being less symptomatic on my blog today. Sorry I always reference my blog, it is just I write all of my POTSy thoughts on it so it is relevant to a lot of our conversations. Also, my insurance company (BAS) said if my PCP sent a letter of medical necessity, they'd consider covering the intensive 2 week treatment. I'm thinking this is because, were I doing twice a week visits over many months, they would cover it.

Thank you everyone! You all are amazing.

You could always try caffeine pills (cut them up!) if you don't like coffee but would like to see how your body reacts to caffeine.

I used to measure out my salt at the beginning of the day in a little dish. I'd sprinkle it on my food throughout the day, but don't always eat much so I had trouble getting it all in. I found broth (and Campbell's tomato juice -- more sodium than V8) to be the answer for me. First thing in the morning I drink 1.5 cubes of some vegan chicken bouillon diluted into a pint of water. This gives me 2400 mg of sodium. I then drink 1 cup of almond milk because I love it, but it also gives me 270 mg of sodium. I feel like it gives me a base level of sodium to start the day and let my body hold on to the 2 pints of water I chase all of this with. My morning routine. I've had good luck starting my day with this regimen, but always have wondered how much time I need to give the sodium to get into my system before it is effective at holding on to water. Is it almost immediate (I know people with high blood pressure say as soon as they eat salt, they can feel it shoot up) or does it take time?

I know someone who went and only needed to be there 3-4 days. If they're like Mayo, once you get there they may order additional testing which will tack on days. My original visit was 5 days, but it ended up being something like 10.

I really would like to use it because I've heard wonderful things. I choose not to because I try and only consume products made with whole foods.

Dizzysillyak, thanks for the suggestion. How did you find out about the parasites and h pylori? I had a colonoscopy and endoscopy. Luckily there was no h pylori! My sister had POTS and my mom has EDS, so I think I was predisposed and getting really bad mono set it off. Tachy, thanks! I always go into every treatment thinking, "this is going to be it", even after 5 years of failure. I'd rather be optimistic and disappointed for awhile than always pessimistic. So, I'll say it -- I have a feeling this will bring me at least some relief!

I was surprised to not see any polls on sodium intake.

I'm happy you guys feel we were well represented. I will be blogging in detail about my experience and will leave you guys a link when the time comes. Looneymom -- I think waiting until every possible root cause is ruled out to try biofeedback is a good idea. If I knew the root cause I've my POTS, I'd focus on that first. I've given every new treatment option 6 months (each new medication, exercise, fluid adjustment, salt therapy, etc...) with little significant improvement. Right now it seems I have all of the information I'm going to get for the time being, so I'm looking forward to trying biofeedback in hopes it at least helps me be able to exercise and keep up the house!

I don't think anyone has answered what they do during a sleep study, so I thought I'd share. I had it done before I was diagnosed as a measure to rule out sleep issues as what was going on. Although I didn't learn anything from it (except I HATE sleep studies), I think it is good to rule out sleep problems. If your daughter isn't getting adequate rest from sleeping for whatever reason, that could really stall the success of treatments she may try. Please excuse my lack of medical terms. I don't know much about the terminology for sleep study tools. You arrive at night in jammies. I had asked for there to be a fan in the room since I always sleep with one. The room is sort of attempted to be set up to look like a normal bedroom and there is a camera in the corner so they can watch you and see how much you're moving and such. They put electrodes all over you, similar to an ekg. They put something (I can't remember if they is electrodes, I think they were) on your legs to measure movement. They use goopy stuff to put electrodes on your scalp to measure brain waves. The stuff comes out pretty easily the next day with a shower. Lastly, they put this little thing by your mouth (a little stick type thing) to measure air blown out through the mouth and something (oxygen mask nose attachment) in your nose to measure air blown out that way. Then, they say do your thing and sleep. I read for about 30 minutes then tried to go to sleep. I woke up all night long, at least once an hour for most of the night. Most people I've talked to had trouble getting to sleep, but didn't wake up over and over like I did.

Here is a blog post from someone with Dysautonomia about heat intolerance: http://jillinoisrn.com/2013/02/05/another-season-of-dysautonomia. Make sure to check out the comments as well.

Two thoughts... 1) I am happy this story is being told. 2) The woman who said her daughter was put is a locked psych ward... The scene sequence implied this was done against her will. In the US, involuntary psych admissions occur in only very extreme circumstances and only if imminent danger to the person is near. I worked on a crisis hotline, so I know this to be true. Some people WANT to be admitted to a psych ward and are actually denied because no imminent threat exists. Are the laws different in some European countries? (Not sure where this is based but noticed accents)

Lynnie, it is a symptom and probably was the earliest sign my autonomic system wasn't a happy camper. It started after I got mono in Feb 2008 and has never gone away. It tends to run 99.9 to 100.3 on "normal" days. It wasn't high enough to warrant serious concern. I was only 18 and was trying my hardest to hide how cruddy I felt since I was a freshman in college with the world at my feet. I suppose that contributed somewhat to the lack of them immediately pursuing in depth testing.

I wanted to make a new topic for the newspaper story about me and POTS I had asked for tips on. I'm very happy with how this came out. It explains POTS in the little bit of space a newspaper allows without minimizing nor catastrophizing it. I think your average person could read it without their head feeling like it is going to explode and they would walk away with a basic understanding of POTS I just suggested the story and (granted I know the reporter very well) they said yes! It makes me think anyone who would be willing to be in the newspaper should contact them and offer their story... Especially in smaller areas That'd really help with awareness and help others get diagnosed. Here it is: http://mywebtimes.com/archives/ottawa/display.php?id=477736&query=Pots

I take ambien most nights... It's not the best drug, but for now it helps get me much needed sleep.

I take 10mg 2x/ day. If I have a long day, I take a third 10mg dose, but usually it isn't necessary. I started at 5 mg with our intention being from the beginning to get up to 10 mg after I got used to the 5 mg. I was instructed to send her my blood pressure readings from each day for a few weeks so she (my PCP) could monitor the levels. It has helped so much with my lightheadedness. A few months after starting and getting my blood pressure as stable as its going to get, I was able to add a beta blocker... something I never could have tolerated with my hypotension.

Alan, sorry to hear about the increased blood pressure, but it is great you are keep us so up to date. It will help others know what to possibly expect should they find they are helped by trying out cabbage juice.

Blue -- I LOVE how you specifically asked the receptionist to write down your doc was fired. That gave me a good laugh. Freaked -- You made me think of something I forgot to include because it was something I had to do in my pre-POTS days but actually would be useful with doctors who are suspicious POTS is in our heads. I'd go to various doctors searching for answers. Specifically I wanted to know why I had a low-grade fever a minimum of 5 days a week for 6 months straight. You know what I was told when they didn't find answers? I probably don't even have to tell you. Yep, depression and/or anxiety. Really? Depression causes fevers? That's a new one to me. I finally paid for a professional in-depth psychiatric evaluation. The psychiatrist said he had no idea what was wrong with me other than it was clear I had hyper-somnolence and it wasn't due to my lifestyle or a psychiatric issue. I took that evaluation with me to each doctor and would present it to them. I found a lot more doctors were willing to say, "I don't know what is wrong with you" after that point. That's the thing; we don't insist these doctors know it all. We just want them to acknowledge there is indeed a medical condition occurring, but the do not know what it is. I'd imagine this would be extremely helpful for doctors doubting POTS. I find my Mayo Clinic visit has the same clout as my psychiatric evaluation did. I'd ask the psychiatrist to make sure to address if there is or isn't somatization, as well as catastrophizing, type tendencies present.