New To Forum - Our Story

[POTSdad]

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

[Guest humanb4monitor]

Maybe I shouldn't say GREAT BUT GREAT! As hard as this has been and is, I have had this + other things since birth and no one HEARD me till 2004.

In my 40's.

I am GRATEFUL that your beautiful daughter will have a CHANCE at full life that I, and maybe others, didn't have.

(focus-learning issues-sleep issues-tired issues- hyper OR slow issues etc)

BUT our passion is light years above most so there is my vanity

God Bless you all. I had the Standing Test as well and at this point, I do not know if I--personally would do the TT because I am so symptomatic but obvioulsy you have answers.

I did make a daily plan that I didn't stick to last year BUT IT WORKED!

If you would like--I will post it here and I bet she could stick to it. I hope we all can try and that'll keep others trying

I will check back later because I have used all legal stimulants to TRY a day today, and need to drive and do errands while I can.

A reminder for her and you is that all flues, strong emotion, illnesses, prodedures will make things worse and may even bring on additional stuff so stay healthy>

Cancer ATTACKED my POTS in ways unspeakable in 1995 and a 103 degree flu is what led to the diag. So from 1 extreme to the other.

You are in my thoughts and will be all day. My family still won't accept what they

"cannot see" so you aret the #1 dad and family!!!!

~~*~~HEALING--SUPPORT---COMFORT--LOVE~~*~~

[Simmy]

Hi POTS Dad,

Welcome. It sounds to me like you are on the right path and have a great handle on things. Your daughter is fortunate to have parents who will stop at nothing for her health and future.

Everything you said seems correct, except, "My daughter is consuming as much sodium as possible". It's probably not enough. I too was advised to add "lots of salt", or at least 5 grams a day. However, if your daughter is simply dumping a lot of salt on food as I do, remember that a large amount ends up on the plate, the table, the floor, or the napkin. It's also hard to gauge exactly how much comes out of the shaker. If you have a kitchen scale I'd recommend preparing daily doses of salt in tiny cups, and whatever her doctor suggests the daily amount to be, add 25% for spillage.

I also want to mention squatting and how quickly it can stop tachy when she's standing and needs to lie down but cannot for whatever reason.

I wish her and you the best, but your actions will work far better than my wishes. Don't stop.

[handmadebyemy]

Welcome Pots Dad,

I'm glad to hear you finally got a diagnosis for your daughter. That's the first step, and the hardest! I got my first POTS symptoms at age 21 so I feel for her. The compression stockings help me immensely, as does swimming. What is the exercise program she is doing?

[tinkerbella]

Welcome pots dad...nothing is worse than having a child who has a chronic illness. may you find all the love, answers, friendship and support here. I PRAY, that with young adults that they out grow their Pots. So try to have a positive outlook and I hope you are blessed with the best of health providers.

keep us informed....

BellaMia~*

[maggie]

Welcome to the forum Pots Dad. It's good you have a dx and now can work on the medical issue at hand. I just have one word of caution for your daughter and your family about setting goals. Goals are great to motivate a person, but with pots it's a risky business. When I was dx with pots in oct 06 the doctor told me mine would be over in two to five years since I had a mild case. I thought to myself great in two years this will be over and I will be able to move on. I did everything I could to help me achieve this goal, but it came and went with improvement, but not gone. I was so discouraged that it took me some time to regroup and say ok maybe it will take just a little longer. It's now five years and I still see improvement, but am I anywhere near being normal, I'm sorry to say no. Be careful not to set the standard too high, it's very difficult to deal with not reaching one's goals. I will certainly pray for healing for your daughter and I hope she is able to get back into school by September. It really difficult to read on this forum when young people are so effective with this medical issue. May God walk with you during this journey.

Maggie

[PotsMom]

Your daughter's story is all too common - searching and searching for answers and finding few in the medical profession who are familiar with dysautonomia and recognize the symptoms. Her course and problems with school are also very typical. It is awesome that you have believed in your daughter and have not given up. I have two teens with POTS and I know all too well how difficult it can be finding answers. I often think about the many kids who are out there dealing with dysautonomia whose parents do not believe or recognize there is a real problem. My heart goes out to them!

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.

Your daughter is blessed to have parents who recognize there is a problem and will not give up in pursuit of answers!

[POTSdad]

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.

[Guest humanb4monitor]

I Believe with all I am THAT IF we ALl learn skills that (here's the trick) we remember all the time...we CAN BE BETTER. NOT CURED BUT SOOO MUCH BETTER.

"Dad" and others, yesterday afternoon I was committing MY day/goals to ME.

TO ME. Imagine???

I did something that..... because I do NOT manage, nearly let POTS steal it ALL AWAY.

(NOTE THOSE WORDS--rinse and repeat)

I was kinda jazzed all late a.m. and ealry afternoon to go MOVE MY BODY.

I made a phone call while dressing and that nearly sole it all. WHY?

Because (DAD!) this is what happened:

I forgot forgot forgot that IF that call became "engaging" and not just a quickie....it would change my HR and bring on symptoms and derail me.

IT DID. About 2/3 the way in (a doc office who I was hitting it off with reception) I got really really sad and felt my goals f-l-o-a-t-i-n-g AWAY. Being t-a-k-e-n! Taken away!

That the amount of time talking had STOPPED my momentum and I felt afraid. We finally hung up and all I wanted (not really but thought so) was to cave and lie down and cry and channel surf.

I kept at it, walked out he door, bought COFFEE and kept going but the whole time the DESIRE was gone. AND WITHOOUT A DOUBT IT WAS POTS DERAILMENT THAT I CAUSED BY NOT WATCHING..... ON PURPOSE ......TO MAKING THE CALL SHORT AND SWEET. BY NOT MAKING IT SHORT.

This as true of a POTS/HR derailment as it gets.

I made it though---to fitness. (been only a few times in months cause of surgery)

But I felt like my heart had broken but it's bene broken a long long time.

Thank the universe I made it but within seconds.....it nearly got taken. As my life has.

POTS steals. And aa it gets worse...it steals more.

That is why youth may get such a HUGE chance. You all can get a HUGE chance IF you manage every minute and I believe that once we start , it'll becoeme habit to manage.

It steals.

So new POTS dad---staying focused on tasks is CRUCIAL to staying on track and more happy than sad.

I recall---1 wk before diag. but didn't know that....I was crying so hard with my psychologist. I was silent for so long. I finally looked up and said:

"I can't STAY PUT."

he said, That IS what it feels like doesn't it? How do you find such amazing words?" I told him that all my life I had been looking for a way to say it---THAT was it.

8 daze later...I was diagnosed.

I heard Montel Williams say that until he woke everyday and said all said all day long, "I have MS," he couldf NOT stay fucused. I know I could get there more easily with support.

Love you all and shared this knowing it is the truth.

[maggie]

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

[POTSdad]

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.

[Guest humanb4monitor]

Please will you be MY dad?! Please.

You would do more for this 40 something in one post than anyone in my life--EVER regading these imbalances

[TXPOTS]

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. Just a hint, in case she has trouble getting to sleep from pooling in her legs while trying to sleep. I am also in the process of finalizing my application for Dr. Levine's protocol. I already exercise quite a bit, but I tend to go at too hard and too fast, so I need the protocol to pace myself. I am fine while exercising, but I crash when stationary. Your daughter has many factors, especially her age and a caring family on her side. Study comes out June 22nd.

[POTSdad]

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.

[Noreen]

I am so glad your daughter has you to look out for her well-being. It certainly sounds like you are approaching this in a highly systematic fashion.

Your charting is undoubtedly helping the medical professionals see the forest from the trees with your daughter's condition. Aside from her menstural cycle what other factors are you able to incorporate in your chart to share with the docs?

prayers and positive energy for healing -

noreen

[maggie]

Thanks for the info Pots Dad I'll begin looking for these items and see if they help.

Maggie

[POTSdad]

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.

[MomtoGiuliana]

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.

[POTSdad]

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.

[handmadebyemy]

I also use himalayan sea salt - i've heard its the best. my doctor told me to look for salt that isn't exactly white - it should be redish or greyish.

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

[issie]

One thing I've found very helpful is full body compression. I have Ehlers Danlos in addition to POTS and because of this there is allot of blood pooling in the legs and abdomen. If you look on the Bali Hanes web site, there is an outlet. They have a tank made by Barely There and some long leg pants. These are like body slimmers but work wonderfully for full body compression. It has helped with the nausea that I have daily too. I make sure I wear them when traveling or having to sit and not move around. They do make you a little hot, but I feel like it helps so much and try to stay where its cool. Since overheating can make everything worse. One suggestion is some type of cooling vest if she has to be in the heat. There are also cooling hats and scarves. There has been discussion on this site about those things. I applaud you're helping your daughter. When we feel so bad, it is so nice to have someone figure it out for you and all you have to do is follow through. I'm sure you are helping her to do that, even when she doesn't feel like it. (Just don't push her too hard. There are times when you just CAN'T!)

[PotsMom]

POTS Dad,

One of the many frustrating things about dysautonomia is that each patient is so unique and what works for one doesn't work for another, etc. What you're seeing with your daughter is a perfect example of that. I see it with my own kids. You just have to do exactly what you're doing, though, keep trying various things and hope to find enough individual "pieces", as I often say, to help improve symptoms and give better quality of life.

B12 definitely doesn't work for all. Doesn't work for my son but for daughter it has been one of the very helpful "pieces" that helps with fatigue. However, from experience we also found that certain types of B12 work better than others for any given patient. She uses the cyanocobalamin. At one point she had one injection with another type - the name escapes me now but I want to say it started with an h - anyway, that did not have any effect for her at all, though I've heard that that type actually works better for some.

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 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.

Keep us posted on the exercise program if she gets in. I will be interested to hear how she does and your assessment of that program in general.

[Christy_D]

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

[issie]

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.

[issie]

POTS Dad,

One of the many frustrating things about dysautonomia is that each patient is so unique and what works for one doesn't work for another, etc. What you're seeing with your daughter is a perfect example of that. I see it with my own kids. You just have to do exactly what you're doing, though, keep trying various things and hope to find enough individual "pieces", as I often say, to help improve symptoms and give better quality of life.

B12 definitely doesn't work for all. Doesn't work for my son but for daughter it has been one of the very helpful "pieces" that helps with fatigue. However, from experience we also found that certain types of B12 work better than others for any given patient. She uses the cyanocobalamin. At one point she had one injection with another type - the name escapes me now but I want to say it started with an h - anyway, that did not have any effect for her at all, though I've heard that that type actually works better for some.

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 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.

Keep us posted on the exercise program if she gets in. I will be interested to hear how she does and your assessment of that program in general.

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.