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For my son, we purchased him an adjustable bed. He can raise his feet, if they start turning purple or raise his head. He loves it. Since he spends so much time in bed anyway, it makes him more comfortable to be able to sit up when he wants or is able. I kind of looked at it as not a luxery, but something medically that he needed.

Christy

What brand of adjustable bed did you get? There are so many of them.

We got him a Temperpedic, but only because I work for a bedroom store retailer and get a good discount. The other brand was out of stock and we would have had to wait a month for it to come in. Otherwise, I would have bought him the store brand that we carry, which is still a good brand also. My husband has a bad back and he has the other brand as well, Boyd, and it is just as good. One has a wireless remote and the other has a wired remote, other than that, they are comparable.

When my son's friends spend the night, they kick him out of his bed because they love it.

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I've never heard of the Boyd brand of bed. Is it an air type bed like the Select Comfort? We tried that out and didn't like it. I like the feel of the Temperpedic but because of my dis-ablities, I can't turn over or get out of them. Any other suggestions?

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I've never heard of the Boyd brand of bed. Is it an air type bed like the Select Comfort? We tried that out and didn't like it. I like the feel of the Temperpedic but because of my dis-ablities, I can't turn over or get out of them. Any other suggestions?

I myself have a softside waterbed. Can't live without it, I hate staying in hotels because I can't sleep a wink! Boyd is a bed manufacturer, they make air beds, waterbeds, latex, memory foam, adjustable beds,etc.. My husbands Boyd adjustable bed is not like the temperpedic. It is more of a pillow top style but with an adjustable base.

If you had an adjustable base, you could raise it before trying to get out of bed??

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POTS Dad,

I have a question for you. You mentioned that your daughter will be having a 24-hour blood pressure monitoring. Is your doctor ordering that or do you have equipment for doing that? Just curious. That is something I've thought might provide some beneficial information for doctors in my son's case and I haven't actually heard of it being done before. I would be interested to hear more about that.

Hi PotsMom,

You asked about the 24-hour blood pressure monitoring. My daughter's cardiologist made a requisition for it. We have to rent it from the local hospital. Our health insurance doesn't cover it, so we have to pay $75 for it.

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POTS Dad,

I'm sure you've probably tried cataflam and Anaprox for cramping but just thought I'd throw that out there in case you haven't. We have found those very helpful. It may well be that the pooling is making it worse and one has to wonder too if the cramping itself perhaps even triggers or exacerbates pooling and thus also exacerbates the pain.

.

I when younger, before my hysterectomy, had horrible pain w/periods. I did use Anaprox. It had a damaging effect on my liver. Must be very careful with it. It did help the pain. The reason for the issues, in part, was endometrosis. I'm finding out that there are allot of POTS patients that have this. It has to be all connected. They are thinking, two lines of thought, it could be inflammatory or an allergy response. If an allergy response, it makes me think Mast Cell Activation Disorder -- which can go along w/POTS. As for inflamatory, we all seem to have pains and issues that very well could be inflammation.

Hi PotsMom and Issie,

We haven't tried cataflam and anaprox yet. One pain management specialist we saw did suspect our daughter has endometriosis, and that's why we're getting a pelvic MRI done. After the MRI we are seeing another gyncecologist that specializes in pain issues. I'll mention cataflam and anaprox, to see if it would be suitable.

One specialist mentioned our daughter should try Lyrica for pain, but this was before we had the POTS diagnosis. My daughter does not have fibromyalgia or nerve pain, so I don't think Lyrica would help.

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POTS Dad,

To my knowledge there is only one way to find endometrosis. You have to have a laproscopy done. It is a surgery and they put a scope into your belly button to look around. As far as I know, that's the only way they can find it. It can be very small, like pinpoint and can still cause pain. Everyone has a different pain tolerance. With endometrosis, with time, scar tissue can form adhesions and if they pull on the ovaries, that is very painful. The thought is, that there is an imbalance in the estrogen/progesterone ratios. They feel that the estrogen is too high. The solution is to balance the imbalance. There are natural bioidentical hormones that are applied to the skin. They can be obtaiined from the health food stores if you get the pharmacetical grade, or they can be compounded by a pharmacy at a compounding pharmicist and this requires a prescription. One of the BEST books I've read on hormone replacement is by Dr. Johnathan Wright. Also, there is a book --What your doctor may not tell you about Perimenapause. Even though this isn't where your daughter is at, it explains the process of the hormones, very well.

My endometrosis was sooo painful. I do not recommend though that she take massive doses of the Anaprox, although that was the only thing I found to help the pain. As I said before they did damage my liver. My life revolved around when it was my period. I had all together 8 abdominal surgeries, because I had wanted kids. The last one was a hysterectomy at age 36. Because estrogen was the culprit and my adhesions were so bad, I had everything taken. I then stayed off hormones for 5 months so that if they had missed any spots, it wouldn't come back. Then the bioidentical hormones. My pain was over and my colon issues resolved. My friends that had their ovaries preserved, had to have them removed within 2 years of their uterus removal, because the pain of the ovaries and the endo, coming back. I know this is not what you wanted to hear. But, knowledge is invaluable and I think it's better to know what you are dealing with.

I can only speak from my own experience. Some others may have different thoughts on it. But, I did research it to death. If she can get on the progesterone, it may put the endometrosis at bay. Some people have even reversed it. I wish I had known about it before all my trials. It may have prevented allot of pain and surgeries. Don't use the synthetic progestin -- that has all sorts of horrible side effects. Also, don't use the birth control pills to stop the period -- that only ups the estrogen. ( I did that too.) I hope you can find a doctor who is knowledge about the bioidentical hormones and will work with you. There are certain times of the month where she will use it and parts of the month when she will leave it off. Dr. Wrights book tells you how to do it. I think he has recently written a new book. I havent seen it yet though.

Hoping the best!!!!

Issie

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Thanks Issie for all the great information! You have certainly been through a lot.

I guess balancing hormones is a real art. We tried 3 different oral contraceptives for several months each, and symptoms were considerably worse with all of them (we had to go to emergency 3 times). My daughter then decided she no longer wants to try manipulating hormones.

We are tracking all POTS and hormonally related symptoms in a chart, which hopefully will give further insight when we see the gynecologist and the POTS specialist. The phases that give the most difficulty with POTS like symptoms are Late Follicular, Mid Luteal, and Late Luteal. The phases that give the most difficulty with Menstrual Symptoms are Late Luteal and Early Follicular.

We will have the pelvic MRI prior to seeing the gynecologist. Apparently MRI technology has advanced and is quite effective in diagnosing endometriosis. What is required is a high resolution 3 Tesla MRI machine, which not all hospitals have. Most hospitals still have the older MRI Machines, which are not effective in detecting endometriosis.

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Thanks Issie for all the great information! You have certainly been through a lot.

I guess balancing hormones is a real art. We tried 3 different oral contraceptives for several months each, and symptoms were considerably worse with all of them (we had to go to emergency 3 times). My daughter then decided she no longer wants to try manipulating hormones.

We are tracking all POTS and hormonally related symptoms in a chart, which hopefully will give further insight when we see the gynecologist and the POTS specialist. The phases that give the most difficulty with POTS like symptoms are Late Follicular, Mid Luteal, and Late Luteal. The phases that give the most difficulty with Menstrual Symptoms are Late Luteal and Early Follicular.

We will have the pelvic MRI prior to seeing the gynecologist. Apparently MRI technology has advanced and is quite effective in diagnosing endometriosis. What is required is a high resolution 3 Tesla MRI machine, which not all hospitals have. Most hospitals still have the older MRI Machines, which are not effective in detecting endometriosis.

You are so welcome! Hope she doesn't have it, but if she does ---please consider the natural progesterone.

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how did you apply for dr levine's exercise program? i'd love to look into it. i did some searching online but didn't come up with anything

Hi Handmadebyemy,

Here are the steps of how we applied for Dr. Levine's program

1. Send an email to THR-IEEM-POTSRegistry@texashealth.org saying you would like to apply for the POTS Exercise Training Program.

2. They will send you an email which you could take to your doctor. Your doctor must then directly request the application package.

3. Once your doctor receives the registration package, you setup an appointment. Your doctor will have instructions on how to do the 10 minute stand test, which your doctor must complete.

4. You and your doctor must complete and sign a number of forms and then your doctor sends in the forms for processing.

We just completed step 3 and 4, so now we are waiting for a response back. We are looking forward to a followup phone call and then getting the customized exercise protocol. We have signed a non-disclosure agreement, which means we can't share the details of the exercise protocol.

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My daughter has now had three 10 minute stand tests done over the last 3 weeks. This is how much the heart rate has increased by the end of the 10 minute stand test:

Test 1 - 38 beats per minute increase at 10 minutes - early follicular phase

Test 2 - 34 beats per minute increase at 10 minutes- late follicular phase

Test 3 - 75 beats per minute increase at 10 minutes - late luteal phase (had severe POTS symptoms at this time)

30 BPM increase is the criteria for POTS. Clearly there are times were my daughter's POTS is borderline, and other times when it is quite severe.

All tests were done in the morning around the same time, not wearing compression stockings. Blood pressure was stable for all 3 tests.

I find it interesting to see how these numbers correspond to the intensity of POTS symptoms, which are related to the menstrual cycle phase. It appears that the menstrual phase has a big impact on these numbers. Has anyone else found the same?

The physiotherapist suggested we do a 10 minute stand test once a week so we could see how we are progressing. We thought taking these measurements will keep us focused and encouraged. I think it is also important to factor in the variability caused by the menstrual cycle. Does anyone else on this forum do stand tests regularly?

Apparently after completing Dr. Levine's 3 month exercise program, many see their numbers improve to the point where the 10 minute stand test results are negative for POTS (less than 30 BPM increase).

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Does dr levine judge the effectiveness of the program with only a 10 minute stand test?

It's great to be able to stand that long without a hr increase but I would think you could still have POTS even if you can stand for 10 minutes

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Does dr levine judge the effectiveness of the program with only a 10 minute stand test?

It's great to be able to stand that long without a hr increase but I would think you could still have POTS even if you can stand for 10 minutes

There is more data that they collect once you get accepted into the program.

The complete results and data from a study done with hundreds of people with POTS will be published this summer in a major cardiology journal. This should give you an idea of the parameters that are tracked.

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Does dr levine judge the effectiveness of the program with only a 10 minute stand test?

It's great to be able to stand that long without a hr increase but I would think you could still have POTS even if you can stand for 10 minutes

There is more data that they collect once you get accepted into the program.

The complete results and data from a study done with hundreds of people with POTS will be published this summer in a major cardiology journal. This should give you an idea of the parameters that are tracked.

Dr. Levine told my husband June 22nd. We'll see. I am in process of getting sponsored to start the protocol. I believe they just get a starting and follow up heart rate after 10 minutes for the data base, but I could have misunderstood. He probably does a very comprehensive work up and follow up if you are one of his patients. I am looking forward to reviewing and dissecting the study. I am curious regarding the number of patients tested, exclusion criteria, and what end points he studied. I believe his team works under the premise that POTS patients have smaller hearts than the rest of the population. The exercise program is designed to increase cardiac size and function. Rowers have the largest hearts of all athletes. That's where the rowing ties in.

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Please tell me I am looking at the wrong article, and the study did not involve all of 19 patients. How do you proclaim to rename a syndrome based on a study with 19 patients? I'm so glad that exercise helped improve the quality of life of these patients, but seriously, 19??? Someone tell me there is another study. I believe they started with 25 patients, but 19 patients completed the protocol. He may be correct in his hypothesis, but I was under the impression this was a large study.

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Please tell me I am looking at the wrong article, and the study did not involve all of 19 patients. How do you proclaim to rename a syndrome based on a study with 19 patients?

Telling people we have "POTS" is bad enough! Hope we don't have to say we have "grinch syndrome" :) !!!!

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Here's a link. Not that groundbreaking in my opinion...I guess if your POTS isn't severe, then the 9 bpm decrease would be good. I'd need about a 45 bpm decrease in my standing heart rates to no longer meet the POTS criteria. :(

http://content.onlinejacc.org/cgi/content/...ract/55/25/2858

Am I being too harsh? What do you guys think?

Dana,

I'm really let down. I have experienced a 60 bpm drop in standing with treatment and exercise over the past 6 months, so I am a big exercise proponent. That being said I still am still extremely debilitated and symptomatic every time that I stand. I would be interested in reading more about the patients quality of life scores, but my interest waned when I read there were only 19 patients in the study. I thought the study was large and totally groundbreaking. After all that build up, I'm hearing the Charlie Brown wah wah wah.....

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Please tell me I am looking at the wrong article, and the study did not involve all of 19 patients. How do you proclaim to rename a syndrome based on a study with 19 patients?

Telling people we have "POTS" is bad enough! Hope we don't have to say we have "grinch syndrome" :( !!!!

LOL!!! Thanks for the laugh, summer. I really needed it today. I was one of the members drumming up this study. I feel like I just did a crash and burn.

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Dana,

I'm really let down. I have experienced a 60 bpm drop in standing with treatment and exercise over the past 6 months, so I am a big exercise proponent. That being said I still am still extremely debilitated and symptomatic every time that I stand. I would be interested in reading more about the patients quality of life scores, but my interest waned when I read there were only 19 patients in the study. I thought the study was large and totally groundbreaking. After all that build up, I'm hearing the Charlie Brown wah wah wah.....

I agree. I felt like this study was supposed to be "mind blowing", "absolutely amazing", rah-rah-rah! lol And, now that I read the little abstract, I'm not really understanding what all of the build up was for. Do you think it was seriously just fabricated by this doctor and his team?

After I read the study, I looked at my echocardiogram and my heart isn't small at all. In fact, it is definitely on the higher end of normal now. I'll just keep doing what I'm doing as this study hasn't changed a thing for me... :(

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LOL!!! Thanks for the laugh, summer. I really needed it today. I was one of the members drumming up this study. I feel like I just did a crash and burn.

I'm guessing the name change idea was a joke... But seriously, I can understand why you guys are so upset by this study. I'm sorry it is so disappointing.

Summer

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I was disappointed too, I thought it was going to be a larger study and that there was going to be a more dramatic improvement. Plus it talks about POTS without dropping bp. If i remeber correctly my

bp drops so does that change the study for me? And the grinch syndrome...is that a joke?

I've been thinking about it a lot today and any impovement is improvement. I think the aim of the study is more to reverse the deconditioning we can easily experience so that any problems we do have are actual POTS not decondotioning

all i know is it isnt the revolution we all hoped

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Am I being too harsh? What do you guys think?

I agree - this is very disappointing. It would be interesting to read the entire article and to have details about the patients in the study. Small heart? I would think that that is something that could easily be identified with testing, and if that is the only issue then yes this might help those patients, but clearly a small heart is not the cause in severe cases!! I thought it was also interesting that the conclusion was that there was no autonomic dysfunction. Then how to explain all the many various symptoms that go hand in hand with dysautonomia? I also don't think a decrease of only 9 bpm is going to have any significant effect on a patients symptoms. I have many questions in my mind about the details of this study and hope at some point we can get access to the full text. I'm going to try to reserve further judgment until I can see it in full, but what I see in the abstract version makes me feel the article does more harm than good.

Exercise does help some patients. Certainly exercise involving the leg muscles has been and continues to be of benefit to my daughter. However, her progress has been very slow over a long period of time, and while it can be a contributing beneficial factor, it is by no means the cure for POTS or any other form of dysautonomia nor does it relieve all the symptoms, by a long shot.

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