Steve

Do you mean the kind with wooden slats instead of box springs? If so, it depends on the bed. My mom has a platform bed and the wood panels come up an inch or two around the mattress. She has elevated the head of her bed and it doesn't slide. Are you asking because you're shopping for a platform bed?

Yes! That's the type of bed I mean. I'm actually shopping for a platform bed because I broke the more traditional bed I'd been using after raising it with bed risers. It's possible that it was a coincidence, but raising the top of the bed seemed to shift most of the weight to the bottom half, putting added stress on the joints. I'd had the bed for years, and this happened a few weeks after I raised it.

When I started shopping for a replacement, I noticed that a majority of beds now sold are platform beds. I thought they might handle the stress of bed risers better due to their design (low center of gravity, reduced weight from having no box spring, all-metal construction in many cases). Only then did it occur to me that the ones I'd been looking at had no panels to keep the mattress from sliding. It's good to know that some of them do. Thanks!

From previous threads, I'm aware that quite a few of you elevate the head of your bed for GERD or POTS. Do any of you do this with a platform bed? I ask because from what I've seen, the typical platform bed looks like this:

http://www.crateandbarrel.com/bed-and-bath/beds/isaac-charcoal-queen-bed/s598949

On that model, at least, it looks like the mattress simply sits on top of the platform and would slide off if you raised it at an angle. On a traditional bed, there are wood panels surrounding the mattress that would prevent it from sliding.

It feels like... .... .... I'll get back to yo-- what was the question?

I am hearing that the waiting time for Dr. Grubb is about a year? How long did you wait to see him?

When I called last year, I was told the waiting time was eight months.

I was recently told that the answer was no, but I find it hard to believe that with so many patients who live in and around the city who have diabetic problems like autonomic neuropathy and gastroparesis, there isn't a single hospital in Philadelphia that deals with these kinds of problems. I understand that not many doctors are familiar with terms like POTS, dysautonomia, etc. But isn't gastroparesis a common condition among diabetes patients? Given it is believed to be caused by damage to autonomic nerves, why isn't it considered necessary or at least desirable for patients to have autonomic testing done?

Mestinon was added to my regimen in February. It's supposed to boost blood pressure, specifically when I stand up, and it does, but about two days after increasing my initial dosage from 30mg x2 to 60mg x2 the side effects also started. I continued the plan and two weeks later increased it to 60mg x3, but had to cut back to 60mg x2, which is still more than I can tolerate.

I've experienced times when it has kicked in about an hour after taking it that, when standing up, instead of my heartrate going from 60 to 120 and staying there, it still hits 120 but then slowly drops, sometimes even into the 80's while still standing, before creeping back up. Too bad it doesn't also stop the headache and dizziness.

Are you the guy who posted this video? Just saw it the other day while googling Mestinon.

You could also try Nasonex - my allergist switched me from Flonase to Nasonex because (according to him) it causes fewer side effects. It's a little more expensive though, because it isn't yet available in a generic version.

I would also consider pseudoephedrine (Sudafed). It's a stimulant and can raise your heart rate, but it's also a vasoconstrictor that has been used to _treat_ POTS (it's mentioned in one of Dr. Grubbs' books). I've personally never had a negative reaction to it, and it definitely helps with my nasal congestion.

Wow! I wonder if the episode was inspired by this article: http://www.nytimes.com/2008/06/15/magazine...sis-t.html?_r=1. Lisa Sanders, who wrote it, is supposed to be the medical adviser for the show.

I have an opportunity to get one for $26 on Craigslist as opposed to the Omron for $60 I was looking at on Amazon.com. Just wondering if anyone has a review of it for me. Thanks!

-Darcy

Yes! I have one and I would recommend it. However, you can get a brand new one from Costco for $30 this week. If you don't have a Costco membership, I believe you can still order one online, though you'll have to pay shipping.

Link

This can be a problem for me too, and I do exactly what EarthMother suggested. If you have the newest Firefox (3.0), you may also want to go to View in the top menu, then zoom, and select Zoom Text Only (this is already the default option on older versions). The nice thing about Firefox 3.0 is that it'll remember your zoom preference for each site you visit, so you will only need to set it once.

These maneuvers work. If I squeeze my leg muscles or lean forward while I'm wearing a heart rate monitor, I can see my pulse drop in real time.

One of the most annoying problems that I have is that I am constantly thirsty yet always urinating. Some time ago, before I had heard of POTS, I read about diabetes insipidus and became excited because I thought I had finally figured out what was wrong with me. Of course, my doctor told me that I didn't have diabetes insipidus.

Well, it would certainly be easier if I had it. We know that diabetes insipidus is caused by a deficiency of vasopressin and can be easily treated (you just take a synthetic substitute called desmopressin). On the contrary, no one seems to know why POTS patients are always urinating. Very few articles about POTS even mention frequent urination as a symptom, and none I've read explains what causes it. Am I just not reading the right articles or does no one have the answer?

I've only come across one article that even attempts to explain what happens. Dr. Bell, who is a CFS specialist but has also done OI research, thinks certain blood vessels are so constricted in people with orthostatic intolerance that there simply isn't enough volume in the vessels to hold the fluids. (The analogy he makes is that a pipe with a diameter of half an inch can't contain as much water as a pipe with a diameter of one inch.) That sounds plausible, but he admits it's only a theory and the article was published nearly eight years ago.

Just came back from my doctor's appt and he would like me to start on either Provigil or Klonopin and I don't have a clue which one to try. I've tried Xanax and it doesn't help me with the wired.. tired feeling, hard to describe, but basically it's a very yucky sensation. I also have difficulty with making sense with words, and also word recall, but my mind isn't really foggy, just am to weak to put sentences together at times. Other times, I get short of breath and so weak just from trying to carry on a conversation... sensory overload is also a problem for me, along with light / sound sensativity. So with all that said, my doctor gave me the above drugs to choose from to try and I just don't know what I think of either. I need something that would both calm down my system but yet not leave me more weak than what I already am. Thanks for any input / ideas on this

- Tammy

Do you have to use one or the other? As I understand it, they are very different types of drugs. Klonopin improves your sleep and Provigil makes you more alert when you're awake. It sounds like Klonopin is the more appropriate drug for your kinds of problems though.

I've actually found that I do better at holding on to the fluids with a glass of water/splash of juice/ multiple shakings of juice than I do from gatorade or other sports drinks. I add just enough juice to flavor the water and then as much salt as I can stand without making it gross. I notice that I can drink two big glasses like that and not need to pee (sorry!), but if I drink the equivalent in gatorade or propel, I pee it out pretty quickly-- not sure why.

I would think you put more salt in your glass of water or juice than there is in Gatorade. I basically pee out water as if there's a hole in my body. I do slightly better with Propel, and much better with Gatorade. That makes sense since Propel has only a small amount of salt and Gatorade has three or four times that.

How does your drink taste?

There is a separate version of Gatorade with twice the sodium - Gatorade Endurance, I think. It isn't low sugar and I think it's mostly available in sporting goods stores. I'm totally trying to cut out sugar substitutes, so I don't think I'll be trying G2 anytime soon. It's too bad they can't come out with a decent tasting low sugar, high salt drink. I guess there's no way to make all that sodium taste good without the sugar!

Oh, there you go. You can get the Endurance powder and dilute it. Then you'd get half the sugar and the same amount of sodium as plain Gatorade.

well you can DILUTE Gatorade with water and make it half as fattening. Be like Pedialyte too that way.

Fake sugar does not agree with my insides at all.

Thanks for the heads up.

Of course, the problem with the diluting method is that you get half the sodium. But maybe you can dilute Gatorade AND add salt?

I had to read the label to see that G2 had sucrose. I was surprised because it seemed about half as sweet as regular Gatorade to me.

I picked up a couple of bottles of G2 from 7-Eleven today, so I can offer my opinion. I'd been looking forward to this product for two reasons. First, it was said to have half the carbs, which in Gatorade is all sugar. Second, it was supposed to have twice the sodium - a plus for those of us who can't seem to stay hydrated no matter what we do.

First the bad news: there isn't twice the sodium. This isn't a "light" version of Gatorade Endurance, as we were led to believe by the New York Times article that someone posted here a few months ago (it was the one about Tom Glavine and other professional athletes using Pedialyte as a less sugary alternative to Gatorade). In fact, the formulation is exactly the same save the lowered amount of carbs. The sodium and potassium content is unchanged, and it doesn't have magnesium and calcium like Endurance does.

On the other hand, the reduced sugar content is still a big deal to me. For one thing, it means half the amount of calories (25 per serving, or 70 per 20oz bottle). And as far as I'm concerned, the lighter taste is an improvement; I always found the original formula to be too sugary, especially since I drink at least two liters of the stuff everyday. I tried two flavors. Orange is pretty much what you'd expect; it's like the orange from the original line, but lighter. Grape, on the other hand, is my favorite Gatorade yet - light and refreshing, with a taste that reminds me of the diluted grape juice that I had for years in public school cafeterias (yes, I know some people will find that yucky, but I liked it). I'll be buying this stuff in bulk as soon as it's available in Costco.

I found really good prices on wrist heart rate monitors at Costco (link). Although it's Costco, I'm pretty sure you don't need a membership to order, and shipping is free. The Mio's are $50 and $100 at Amazon.

Grarduh:

I took me forever to remember to respond, but I thought what you said probably does have a lot of truth for myself and what I have experienced/observed. That was good thinking! I had not put it together like that yet!

Somedays and places are better than others...

So, I wonder... does anyone use a humidifier and find that helpful?

Thanks!

It's nice to know that my thoughts may be helpful. Humidifiers definitely make a difference to me. During the winter, my indoor humidity is around 26%. That causes sore throat and dry skin for even the normal people who live in my house, and kills me as I have eczema and am constantly dehydrated from peeing buckets of fluids. So I have humidifiers all over the house - small ones in bedrooms, and a big "console" humidifier that outputs 9 gallons of moisture a day in my basement.

I have to be one of the worst at this, and I think this is one of the areas were my can't sit still, or do one thing for too long really kicks in! (I think this is where they may have gotten the ADD thing from!)

That's interesting. I think I developed the same habit - not being able to stay still in one place for a long time because of physical discomfort. But that isn't ADD, even though it may lead to the same behavior.

well, this is the ONLY site that forgets my 'cookies' and I have gone to 5 other boards and NEVER have to 're log in'.

NEVER had to do that here until the last upgrade...so it's a difference in something technological here (behind the scenes where the tech wizards do the stuff) and not all our invididual computers !!

I think what Nina is saying is that the cookies are DESIGNED to expire periodically, in the same way that your Yahoo cookie expires every two weeks.

When I was in school I found that skipping lunch helped me keep alert and made sitting in a chair for long hours less unbearable. Of course, there was a trade-off because I felt hungry, but to me hunger was better than orthostatic discomfort. (I feel the same way about the cold; I don't enjoy the cold any more than hunger, but it invariably relieves my symptoms.)

Thanks for your answer, Morgan. It's hard to tell whether my arrhythmia makes me sick, as standing makes me feel sick anyway. And although I have noticed that irregular heartbeat warnings are more frequent when I feel worse, my heart rate is usually also higher in these situations. Maybe I just have to observe my readings more closely, so that if there are any patterns I'll be able to recognize them. There was a day recently when my heart rate was only a little above 100, but I felt terrible anyway. The only abnormality was a lot of irregular heartbeats. If that happens again I'll be paying attention.

Is Midodrine prescribed to those who have POTS without orthostatic hypotension? My blood pressure only drops immediately upon standing, and rarely below 100 from what I can tell. Within a minute my systolic pressure is usually normal, and my diastolic pressure actually climbs from 75 to 90-100 over time. I'm afraid that Midodrine would cause me to have hypertension.

I get "irregular heartbeat" warnings when I take my blood pressure while standing. Not on every reading, but on about half of them if I stand for about 10 minutes. I was never sure what to make of these warnings. First, I have doubts about how accurately a $50 blood pressure monitor can detect irregular heartbeat. Second, I am not sure exactly why irregular heartbeat is a problem, especially as it is related to POTS. I do understand that an irregularly beating heart does not pump blood through the body efficiently. But does that mean it exacerbates tachycardia? Or does it mean that the pulse remains the same but each beat does less? Maybe I completely misunderstand how this works. I would appreciate it if someone can explain.