POTSdad

We have received Dr. Levine's customized POTS Exercise Program for my daughter, and we have already completed day 1 of the program. My daughter, her doctor, and her physiotherapist are all committed to following the program and to carefully recording the results. My daughter's cardiologist is also very supportive.

Reading the documentation we received from Dr. Levine, it became clear that we are part of the 300 patient study, which is yet to be published. Sorry for the confusion. The paper that was just published is the preliminary paper to the larger study.

Personally, what I've read and the several anecdotal reports I've heard are enough to convince me it is worth a try. At this point we are trying anything that could help, especially if it has little or no side effects. A well designed graduated exercise program with support and accountability I think is a very good thing for anyone.

I just heard that Dr. Levine's POTS exercise study was published and is available as of today. It was published in the Journal of the American College of Cardiology.

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.

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).

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.

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.

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.

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.

You sound like a great dad. Glad you found the forum, although sorry you are here. Welcome.

Just a comment on sodium...it was recently brought to my attention by my specialist that over-intake of sodium can cause an imbalance of electrolytes as the kidneys will increase excretion of potassium. For me this can be a problem b/c I have a tendency to over-excrete potassium--and apparently this is not unusual in POTS patients. The sodium is definitely important--however so is electrolyte balance, obviously. I know some of us have found coconut water helpful for hydration--but in any case, eating foods high in potassium is generally important for us.

This is one of the reasons I liked the Elete electrolyte solution, because it provides potassium. In fact it contains more potassium than sodium. It also contains magnesium, calcium, and phosphorous. It seems like a well balanced electrolyte drink and it has 0 calories to boot.

We showed the Elete fact sheet to both my daughter's cardiologist and family doctor. Both were in agreement that it looked very good and well balanced. They were also both in agreement that my daughter could work up to 8,000 mg sodium per day (6,000 mg from food, 2,000 mg from Elete water). Every person's situation is different, so check with your doctor. Our family doctor also gave us a requisition for several blood serum electrolyte tests every few weeks, just to make sure everything is OK.

We also use natural Himalayan salt on food, which also contains quite a bit of potassium. I wasn't able to find out the ratio of sodium to potassium in Himalayan salt, probably because it is not standardized.

My daughter also eats lots of bananas to get extra potassium.

Today I'm going to angle her bed to a 15 degree angle.

I could not withstand the 15 degree angle straight away. My husband started me on some wooden blocks, and I have been slowly increasing the tilt of my bed.

I need to make a correction to my original post. We set my daughter's bed angle initially to 5 degrees, not 15 degrees like I originally wrote. A 5 degree angle seems to be agreeable with my daughter.

From my reading it seems advisable for us to check sleeping blood pressure, because if it goes too low, then bed tilting may not be advisable. We will test this with an ambulatory blood pressure monitor for 24 hours, which automatically records blood pressure every 30 minutes during the day, and every hour during the night. With these results, we will then look to get more guidance on bed tilting from our POTS doctor later this month, and also from Dr. Lavine's POTS protocol, which I understand also recommends bed tilting.

It sounds like you are doing the right things for trying to treat the symptoms. Each patient is unique and what works for one doesn't necessarily work for another. It is a lot of trial and error. Excercise can definitely have its benefits but it has to be slow and gradual. My daughter, 18, has had a lot of help from excercise, particularly leg work. If there is something that your daughter has enjoyed in the past that is good for the legs, e.g. skating, biking, weight training (particularly squats), starting something like that verrry slowly and gradually could potentially be very helpful. My daughter has come a long way since being totally debilitated at 12 and 13, but even with the very significant improvement she is constantly reminded that POTS is still very much alive and if she misses the regular exercise of her legs for more than a day or two she starts getting a lot more dizziness, lightheadedness, etc. On the other hand, my son has not been able to tolerate the exercise and we are struggling to find significant progress for him. As I said, it's a lot of trial and error and finding what works and doesn't work for a given patient. It sounds like you are very diligent and that is what it takes. Places like this are also a big help for sharing and getting ideas of things to try - read, read, read - forums like this, articles, etc. One other thing that is very helpful to my daughter is B12 injections. That is a topic in and of itself as there are various kinds of B12, some more effective than others for a given patient, etc. and for some it is not helpful at all. It helps my daughter some with fatigue issues. Some young women are also helped by some of the oral contraceptives, especially those who have worsening around the menstrual cycle, so that is also something to consider with your doctor.

Hi PotsMom

We have been learning about execise for POTS. It appears that starting off slow doing recumbent exercise (recumbent bikes, rowing machines) is key for the first few months. Our daughter is also doing leg and core strength training exercises all lying down.

We tried several B12 injections from a Naturapath several months ago, before we knew about POTS. I think it was called a B12 cocktail, but I don't recall the exact name. It did not seem to do anything for my daughter. What type of B12 injections should we look for?

We also tried three types of oral contraceptives, and each one made the symptoms worse. We are seeing a specialized gynecologist in a few months, and we're also getting a pelvic MRI. Our daughter experiences extreme pelvic pain during her period, and pain killers don't cut it. I'm now wondering if POTS related blood pooling in the lower abdomen could cause some of the symptoms. The physiotherapist is working out the transverse abdominus muscle, which according to him could help reduce blood pooling in the abdomen. We also had an osteopath confirm this saying that working out the transverse abdominus muscle is very key for my daughter.

Pots Dad,

I just looked up Elete and what I understood from my research was that there is 125 mg of sodium in a dose of this product for 2 liters of water. How do get so much salt into your daughter's diet besides using this product? I also am getting reviewed by Dr. Lavine's clinic to see if I qualify for his program. I also have been researching for products to help with salt intake. I have been reading that our regular table salt is so refine, like our white surgar, that it has taken out most of the sodium in this product. Has anyone else on this site have input to this? I am so confused now as to where to get my salt intake. Any info on this would sure help.

Maggie

Hi Maggie,

The dose size for Elete is 8 oz. , and each 8 oz. serving of Elete has 125 mg of Sodium at the suggested concentration. There are 33.8 oz in a litre. We mix in a bit more Elete (2/3 teaspoon of Elete drops to 1 litre water) to get a higher concentration (it still tastes OK), so we end up with about 680 mg sodium per litre. With my daughter drinking 3 litres per day, this gives her 2040 mg sodium daily. Elete is made from concentrated sea water.

We have also switched to a unrefined Himalayan natural salt you could get at a health food store. Several studies (including a placebo double blind) have shown this type of salt has many benefits over regular table salt.

THANK YOU everyone for all your support, comments, and suggestions. My daughter, wife, and I certainly appreciate it!!

We haven't been too precise in tracking the amounts of sodium, but we will take the suggestion to track it more carefully. We read lots of food labels, and focus on high sodium foods. We are aiming to work up to 8,000 mg per day, because with the POTS exercise program you need more. Currently we are probably averaging around 5,000 - 6,000 mg sodium. She gets 2,000 mg sodium just from drinking 3 litres of Elete water daily. She prefers Elete (drops you put in water) over many of the other electrolyte drinks.

The exercise program developed by our physiotherapist involves 3 cardio workouts a week, and 2 strength trainings per week (focused on legs and abs). All the exercises are done wearing compression stockings and while recumbent. During exercise we monitor her heart rate continually with a heart rate monitor (chest strap and watch) that sounds an alarm when the heart rate goes too high (over 70% of max HR). Once it went over and we noticed syncopes later that same day. We understand it is really important to start off slow and to gradually develop endurance with consistent exercise (even when you don't feel like it).

We have not started yet with Dr. Lavine's POTS exercise program. We are currently going through the application process which involves your family doctor. Apparently this exercise program has a precise protocol developed by working with hundreds of POTS patients, and it has been very successful. The results of a large study done with 300 POTS patients will be published in a cardiology journal this summer. Dr Lavine also developed a program used by NASA for astronauts who have developed POTS from being in space too long.

We are tracking symptoms daily in a chart. Our physiotherapist is also performing a 10 minute stand test once a week. I put all this data into a chart, so we could see the trends over several months. We know my daughter's symptoms fluctuate considerably based on the phase in the menstrual cycle, so tracking this helps us to make sense of the fluctuations we observe. What we are looking for is changes over several months, so tracking would help us keep focused, encouraged, and on track.

Hopefully some of these ideas I've shared will be helpful for some of you.

Thanks again everyone for your prayers, moral support, tips, and suggestions.

We are grateful to be part of this forum. Here is our story:

After 4 years of eliminating numerous possibilities, we finally got a diagnosis of POTS for our 17 year old daughter a month ago. This was confirmed by 2 neurologists and a cardiologist. Multiple 10 minute stand tests showed HR increases by about 40, and BP remains the same. She has not had the TTT yet.

Our daughter now is wearing a loop event monitor for 2 weeks. With this we are hoping to capture some syncopes. The syconpes seem to happen for about 2 weeks every month starting about 10 days before the start of her menstrual cycle (mid luteal phase). We are also doing a 24 hour catacholamine urine test when her symptoms are at their peak. We are also getting EMG/EP tests done.

These tests will be done before we meet later this month for an initial consultation with the top POTS specialist in this area. This specialist does TTT along with catacholamine blood tests.

Our daughter has lost much time from school due to severe POTS symptoms, and had to transfer over to a reduced home school instruction program. Our goal is to see her back in full time school this September.

We are currently preparing our application for Dr. Levine's POTS exercise program after hearing about the excellent results. 3 weeks ago we started working on recumbent exercises with a physiotherapist who is skilled with POTS (not Dr. Levine's program), and we also started her on compression stockings a week ago. My daughter is consuming as much sodium as possible and drinking 2-3 litres of electrolyte water (Elete) per day. We are starting to see some results already, especially with the compression stockings. Today I'm going to angle her bed to a 15 degree angle (correction made later - we actually set it to 5 degrees). We will also put foot stools where she sits, so her legs could be elevated.

We would appreciate any further suggestions.

Thank you