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Postural orthostatic tachycardia syndrome -P.O.T.S.

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by Sallysblooms, Jun 8, 2010.

  1. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I decided to go on to see my doctor. Woke up more lightheaded than usual. I will take her breathing tests and talk about everything. No tilt table though.

    I forgot to answer your question. I take 1 1/2 tsp of D-ribose 3 times a day. The Carnetine once a day. About 1/2-1tsp. I like CoQ10 too. These have helped my fatigue so much that I have to sometimes take less or I do not sleep as well. I LOVE having energy again. If I could just get this stupid POTS to heal. I see it all as a challenge. I can't wait to learn more and feel better and WALK.
  2. Sunday

    Sunday Senior Member

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    About the CoQ10: I tried it and it helped some, but it helped more when I found that, for therapeutic doses for the cardiovascular system, they recommend a whopping 400-800 mg a day. Your mileage may vary as I find taking too much can be as bad as taking too little. I tried 100mg 2x a day, then moved to 200 mg 2x a day, which seems to help considerably though it is no miracle cure.
  3. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Everyone is SO different with CoQ10 etc. I have to take 60mg or less. I just get too much energy. Not jumpy or anything, just unable to sleep as well. I wish I knew about D-ribose, Carnetine liquid etc. years ago.
  4. OurDayWillCome

    OurDayWillCome

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    Hi Sally... another POTS person. I love my flowers too!

    If you are going to see your Dr, you might want to take this information:

    http://www.nature.com/nrneph/journal/v2/n8/full/ncpneph0228.html

    I had the crisis. One thing that has helped lots is having my D3 checked (low) and supplementing that. Antihistamines have also helped.

    Good luck.
  5. Resting

    Resting Senior Member

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    In my photo program I made them smaller (e-mail size) and then I added them as an attachment to the post. What an adorable little doggie you have! Just the right size for cuddling! Your violets look amazing! Very, very nice! They are little show pieces!

    Thanks. It seems I wasn't taking enough D Ribose to make a difference. I am going to try again at a higher dose. I never took (or heard of) liquid Carnetine. I am wondering if it is more powerful then the capsules. I used CoQ10 but kept hearing about it having negative effects so I stopped that too. Wow, I can't imagine having that much energy. Thank you for answering that question. Lack of energy is a major problem for me.

    I hate that you are having so much trouble. I know you said you can't take many meds. If you haven't tried Florinef, it is worth a shot. It helps most people with POTS and other types of dysautonomia. It causes retention of the fluids you drink to increase blood volume. You may already know that but I just want to share information in the hope that it might help. [I can't remember if you said you had tried that one already]

    I can't even tolerate the thought of the tilt table. Just picturing it makes me want to faint. So I don't blame you for wanting to skip that test.
    Hopefully the doctor is able to help you. Feel soon better!
  6. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Thank you Our Day will Come. I WILL take the information. She seems to think you need low pressure, but it isn't true. I will be getting info together for the visit. Nice to know you love flowers too!!

    Resting, you could try more Dribose. I get my supplements from doctors, good brands. You do have to have quality for sure. The liquid carnetine is good. Not sure if I can mention brands here.

    I have never heard of bad effects from CoQ10. Maybe huge amounts. Just remember to start one thing, then wait to see if it is good, then add another. I do that so I can see what works or what makes me feel bad. If you start lots of things at once, you have no idea.

    Our day will come...I have had my D3 checked. Three months ago. It was SOOOOOOOOO LOW! I have been on a good liquied D3 twice a week. I had it and many other things rechecked today. On the program I am on, I get the blood checked at the begininning and three months later. Then we see after that. I can't wait to see how my new numbers are! Will be about 10 days.

    I am sure I can't take Florinef. Doesn't it keep sodium in the body? I have high bp. Also, I think I read it is bad for keeping potassium. Is it a steroid? I saw too many side effects when I looked it up. I am VERY glad you can take it!

    I forgot, I LOVE my pulse rate monitor!!!! I have one with a strap around the chest. This way I can see the numbers when I stand. I wait until they have gone up and then they start down. Then I walk slowly as long as I can to get my lunch, feed my furry pup etc. It is a great tool for me!

    I do drink a lot to keep blood volume up. I am drinking my wonderful daily smoothie right now. A lot of it, ha. Packed full of good stuff.
  7. OurDayWillCome

    OurDayWillCome

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    You are right.... folks don't always have low BP. I don't know why so many of us have low D3, but we do. I'm glad they found that. I'm going to leave another link to a research paper. This is a long paper, but they discuss the high BP and Mast Cell involvement. Might be good to take to the Dr visit.

    http://hyper.ahajournals.org/cgi/content/full/45/3/385

    Your violets are beautiful! I raised them at one time, and cross bred some of them.

    Take care.
  8. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Thank you for that link. I looked at another after that one. I am saving it all to print out for reference.

    I SURE MISS reading fiction and other books instead of these studies and journals! ha.

    I showed violets when I belonged to a violet club. Fun.
  9. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Do those of you with Disautonomia do worse in the morning? I barely felt well enough to have my husband take me to get my new blood tests. It is all day, but mornings are hard. He feeds the pets before he goes to work so I will be free to stay in bed as long as I need to.
  10. Resting

    Resting Senior Member

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    Absolutely. They suggest not lying completely flat when you sleep for POTS. Propping up is supposed to ease the early morning dizziness. For me, since my dysautonomia is far reaching, I need to lie flat to get blood to my brain. It is a catch 22.

    My understanding of dysautonomia (as a layperson) is that since the autonomic system is not keeping things in check, your blood pressure can be elevated OR below normal. It can fluctuate either way because it is not being properly regulated. Sometimes mine is too low and other times it is too high. So there can be even dramatic fluctuation within the same person.

    Thank you for the reminder. Although I do know this, I sometimes get excited and want to try everything just to feel better ASAP.

    Sallysblooms, You are right. Florinef does keep sodium in the body to help keep the water you drink (thus increasing blood volume). I forgot that it is NOT good for someone with high blood pressure. It steals potassium and magnesium from the body so you have to have foods rich in those minerals or take supplements. I eat a banana almost everyday or potatoes. I also take 1000mg of magnesium everyday. It is a steroid. In terms of steroids it is a 1 on a scale of 1-10 (10 being the worst) but nonetheless it is a steroid. I also take Milk Thistle to protect my liver as a precaution. Unfortunately in my case it is the only thing that helps me to breathe. Hopefully I will be able to get off it someday.

    I am so glad you love your pulse rate monitor. It can also help other people to see (who might be questioning POTS being a severe illness) just how rapid your heart is beating. I will still wear mine on occasion to remind me to slow my pace down significantly. I paid $200 dollars to find out that info. It makes it more worthwhile when I can share it with others. I feel that I really got my money's worth. I learned some other neat things from that program too.

    I have upped my D-ribose and will wait to add in the CoQ10 and possibly L-Carnitine. Thanks for your much valued input. You are always a help!
  11. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I do sleep with my head up. I never turn over either. I just get up slowly. Once in a while I forget I am sick so I get up like I can hop out of my bed. Kind of sad. I put my monitor on for the day and get up. I do look at it to see if I should wait or walk, ha. Like a stop sign. Good to know others have a hard time in the morning also.

    I paid a LOT for my Dzugan program but goodness, what a blessing. I am so happy my CFS doc said I should think about it. I started it three months ago. With that, you do start all at once, or most do, ha. I knew what I could do all at once and what I would wait on. Also, what I was not ever going to be able to take. Wonderful. Constant care by phone or email. Did you see a doc. for that infor. or a program?

    I agree, EVERYTHING is up and down, on and off with POTS/ Disautonia. BP can be up or down. I will see what my doc says. My family, parents and all are glad I will see her. I would love to keep getting better, I hate to worry my parents. They are SO healthy. You never know, I might learn something, ha. It's just that is is a four hour drive and stress. Hot time of year too.

    Sounds like you are doing everything great so the Florinef will not be a problem. Nice that it is less "steroidy" than others. ha. Just not for my bp, but I am very glad it helps you BREATHE!!!

    I hope more D-ribose helps. Night and day for me. Everyone is diff. I have heard you need it throughout the day. If you get too much energy, cut the amount and maybe not at eve. Sometimes I take it only twice to make sure I sleep. I slept very well last night. That is the guide for me.

    Hubby and I did some errands. In Ace Hardware he pushed me in the w. chair. Then off to the nursery. One mandavilla vine died, so we needed another. He got a big pot of caladiums too. I sat in the car, hot outside. :( When it cools off, he can push me for hours there, wonderful place.

    Then to lunch. I walked in and sat. He got the menu. I wanted to try this pizza/Italian food place. You order at the front. They give you a buzzer. Well, hubby went to the restroom and it went OFF!!! It was loud too. Embarassing. Ladies nearby looked at me. I said I can't walk that far. Once got up and got my food! SO SWEET. Then Fred came out and got the rest.

    Not handy not to walk much. People can be so nice though.
  12. Resting

    Resting Senior Member

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    Ha Ha! I read what you wrote too fast and thought it said that you slept with your head upside down! Now that would be a feat. LOL!

    I am hoping the doctor has some new advice for you. Four hours away is a really long distance in my book. I can't go an hour without lying down in the back seat. I don't envy you that ride but I'm sure you will gain some much needed help, making it worth the trip.

    Never heard of Dzugan before. It sounds like it is helping you and well worth your investment. I did Staci Stevens' Workwell Program on how to stay conditioned. My doctor recommended it to me. All of the exercises are done lying down. If you can do something with your feet up it is even better because your pulse stays lower. You do the breathing wearing the monitor while doing these exercises. When I say exercise though I don't mean what you traditionally think of as exercising. It is very mild. I did it through phone and e-mail since it is based in CA.

    It has been in the upper 90's and humid here so I can't imagine trying to travel. Keep cool.

    I love mandavillas. We started them last year. Ours didn't survive the winter so we had to buy a new one. They are so pretty! Caladiums are neat and would go nicely around our mailbox which has a lot of shade but I think they have to be brought in for the winter (at least here). We don't bother with many annuals (except the mandavillas which are worth the effort).

    Yeah, it really stinks not being able to walk. I am glad there were kind folks around to help you get your meal. That is so nice! I have heard several people say that where you live has some of the nicest people they've ever met. We almost moved there too, several years ago. The heat would have killed me though.
  13. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    It gets hot, but the ac works very well, ha. VERY cool in my house and anywhere you go. Yes, I live near Houston, TONS of doctors, but I go 4 hours to my CFS doctor!

    Mandavilla's usually do have to be replaced. They do NOT like to be cold. They are amazing in the heat though. Gorgeous. I need to get a new pic. of my arch with vines. Caladiums only do well in summer/shade. No one has them in winter here.

    I need to find out about exer. while lying down and sitting.

    My mother was here earlier. She was here for a high school reunion. It was wonderful to see her old friends. I know Dad and her poodle are happy that she is home now. I was lying on the couch talking to her. Hubby made a nice lunch for us. Wonderful day. Napped, watered my violets and now I am nauseated... Oh well, always something.

    We always spend the night in a Bed and Breakfast. So, that is four hours one day and then a day or two later. I SURE hope she has something new to tell me.
  14. Resting

    Resting Senior Member

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    I'll try to locate the info on the exercises. I'll explain more about it when I do find my "stuff."

    Sounds like you can turn your doctor appointment into a little R & R for you and hubby! Nice!!

    I can't sleep in a hotel (never tried a B&B). There is one doc I have been to who is 3 hour away but I can't make it there. I tried once and it was brutal. It took many months to recover from that "trip." We need the days when doctors made house calls to come back. Some people are just too sick to get to a doctor. Years ago that was understood, now the really ill people are forgotten by the medical profession. I always joke that if you have a splinter, there are 5 doctors "on it" but if you are really sick, pfffff, you are too much bother. Sad but true. *sigh*
    I digress.

    Anyway, I'll get back to you about the exercises after the search!

    So what is the Dzugan program????
  15. Resting

    Resting Senior Member

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    WARNING: LONG ONE!! :eek:
    OK, I finally found my exercise information. Here it is summarized:
    **All of these are to be done lying down.** Use heart rate monitor while exercising so that you will not exceed your personal limit.
    First and foremost work on focused breathing. These breaths should be taken slowly and deeply. Put a box of tissues on the stomach if you are not sure you are doing it right. The box should rise on inhalation and fall on exhalation. Inhale 3 sec. exhale 3 sec. Do this before you start exercises and 10x between exercises. [Breathing helps oxygenate the blood & facilitates recovery from each exercise.]

    Next, work on TVA (transverse abdominal) These muscles are at your body’s very core. Start by making a Haaaaa sound when you exhale (as if you were fogging up a mirror). Do this to a count of 3 then release

    Start off doing 1 set of 4 reps to ensure no payback
    ~Toe points: Point toes then bring foot back towards leg as much as comfortably possible
    ~Contract thigh muscles (quadriceps) for count of 3- release
    ~Contract gluteus muscles for count of 3- release
    ~Contract biceps by bringing fist up to shoulder then back down to hips
    ~Overhead press: start fist by the shoulder, rotate fist outward, extending
    arms then back down to shoulder

    Once you are sure there was no payback, increase reps, then when ready increase sets ex: 2x/day then 3x/day. After you have increased to 10 reps 3x/day then you can add therabands to toe points, leg extensions (leg up in air, knee bent back toward face, push out to create a diagonal), bicep curls, overhead press. These are color coded according to the amt. of resistance. Purchase at sporting goods store or online.

    This next bit is not for everyone. It is very expensive. It is called the Pilates Reformer. If it is possible for you to use this machine the benefit would be great to those with POTS & ME/CFIDS. This machine works perfectly with this illness because most things can be done lying down which keeps the pulse lower. You can actually “walk” while lying down if it has a rebounder on it (mini trampoline). Many exercises are done with your legs in the air which helps the pulse rate to stay down even more so! It is almost as if it were designed for this illness.

    I hope this makes sense. Please feel free to ask for clarification if I didn’t!
  16. taniaaust1

    taniaaust1 Senior Member

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    Dysautonomia can be quite confusing at times. It is possible for one to have severely high BP due to having a low blood volume and hence then correcting the blood volume fixes the BP but yeah.. very dangerous to do anything which would boost blood volume with high BP if the blood volume isnt low.

    If anyone wants to know more on this kind of thing.. i'll try to find the link (it was written by a CFS expert.. umm it may of been David Bell? on the different forms of dysautonomia and his CFS patients). He had to immediately give one 1 Litre saline (he'd previously the day before tested this patients blood volume so he knew it was severely low) as his BP was so high he thought he was about to have a heart attack.
  17. taniaaust1

    taniaaust1 Senior Member

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    You can find out if you definately have POTS or not by monitoring your heart rate while laying and then from there to standing (or if someone held you upright) and take heart rate at one minute, five minute and 10 min mark. It's the "poor mans" tilt table test.

    If it goes up over 120 beats per minute when upright or up 30 beats a minute from the laying resting rate. That's POTs.

    A big warning.. if being held upright.. make sure the other is prepared for a faint and observes you. If you are about to faint stop this test!!. i went unconscious from the POTS, while being held upright and was out cold for 5 mins. Made me really aware why i actually lay down when i feel faint lol.
    ..........

    POTS may improve or the episodes may stop entirely if the CFS improves. Now that my CFS is much better, i dont get POTS so much.

    i keep my POTS controlled by fluid loading (i drink 4 cups) just as im about to go out anywhere, refilling and taking my drink bottle with me. Then i continue to drink at about the rate of 1-2 cups per hr (sometimes more), if i forgot to drink for an hr or so when out, i end up getting POTS symptoms. i drink up to 28 cups on a hot day (but if hot would try to avoid going out, that can be a risk).

    As it's dangerous to drink that much (water intoxification).. i drink sports drinks as they have the sodium, sugar and potassium. With all this drinking thou.. i can prevent a POTS headache, dizziness, exhaustion, confusion or a complete collapse.

    Finding out i had POTS and learning to deal with this.. has helped me to gain control over many of my CFS symptoms i get while upright (cant get rid of the memory issues thou). Hence i think it's highly important for anyone with CFS to know if they have POTS or not.

    (i also put a lot of salt on my food due to the POTS but dont recommend that to you with your high BP unless you know what your blood volume is like, and even then i wouldnt recommend unless you had a doctors support)

    best luck

    ps. ive thought about buying like an ice vest which i could put on when out when it's warm. Someone told me that some athlete's have them to keep cool, i dont know where one buys them from thou.
  18. richvank

    richvank Senior Member

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    Hi, all.

    Here's a repost of what I just posted to another thread regarding POTS, in case it would be of interest to people reading this thread:



    Many people who have CFS have POTS as part of their illness. Perhaps your doctor is not aware of this. It has actually been studied quite a bit, and there is published literature on it.

    In my view, there are three things that occur in CFS that are likely contributors to POTS:

    1. The total volume of blood in the body is often lower than normal. This likely results from a "mild" diabetes insipidus (not the same as diabetes mellitus) which is often present in CFS. This in turn is caused by lower than normal secretion of antidiuretic hormone (ADH) by the hypothalamus/pituitary. In my hypothesis, this is caused by glutathione depletion in these organs. The low ADH secretion causes the kidneys to dump too much water from the blood into the urine, and that lowers the total blood volume. People with diabetes insipidus have high 24-hour urine volumes (sometimes much higher than the normal average of 1.5 liters per day), and they have constant thirst. They drink a lot of fluids, but can't keep up with the loss of water into the urine, so they run at lower than normal total blood volume all the time. The osmolality (depends on concentrations of solutes, including the electrolytes) of the blood is higher than normal, and the osmolality (and specific gravity) of the urine is lower than normal.

    The low total blood volume causes the venous return of blood to the heart to be lower than normal, and that lowers the stroke volume, since the heart can pump out only what it receives. The cardiac output (the product of the stroke volume and the heart rate) is particularly lowered when standing, because of the additional effect of gravity. Low cardiac output prompts the autonomic nervous system to speed up the heart rate in an effort to raise the cardiac output and deliver more blood when standing, and that constitutes POTS.

    2. Most people who have CFS have dysfunction of the HPA (hypothalamus-pituitary-adrenal) axis. This causes the cortisol output to be abnormal, usually too high in the early part of the illness, and then dropping down to be too low later in the illness. This interacts with the secretion of adrenaline (epinephrine), and noradrenaline (norepinephrine). Among other things, these hormones control the operation of the heart and the circulatory system. This dysfunction may also contribute to POTS. In my hypothesis, this dysfunction is also due to glutathione depletion in the hypothalamus and pituitary.

    3. Many people with CFS have diastolic dysfunction of the heart. This means that the main pumping chamber of the heart (the left ventricle) does not fill with enough blood during the diastolic phase of the heart's cycle, and that also limits how much blood is pumped out (stroke volume). A low stroke volume again prompts the autonomic nervous system to speed up the heart rate in order to raise the cardiac output. Diastolic dysfunction is caused by too low a rate of supply of ATP to the heart muscle cells by their mitochondria. In my hypothesis, this is caused by glutathione depletion in the heart.

    The bottom line is that glutathione depletion can explain all of these aspects as well as many more aspects of CFS. In recent years, we have found that the glutathione depletion in CFS is linked to a dysfunction in the methylation cycle, and that lifting the partial block in the methylation cycle will restore glutathione and correct many of the aspects of CFS. If you want to read more about this, you can find information at www.cfsresearch.org.

    Best regards,

    Rich
  19. kerrilyn

    kerrilyn Senior Member

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    Hi Rich,
    I just posted asking about water intoxication on another thread. After a TTT this week the doc wants me to increase my water intake to 2-3L per/day. I can't do that. After 1.5L I don't feel well, 2L and I'm really unwell. I thought about diabetes insipidus but I don't think I urinated frequently like I read about others on this forum. I'm thirsty a lot but I DON'T drink a lot of fluids.

    I did a test one day and water intake was 1.7L and 2.2L urine output. The TTT was done at an autonomic clinic so they understand dystautonomia but I doubt the same understanding of CFS. They did bloodwork for catecholamine levels, but not likely ADH, unless that is with routine autonomic testing. Is it important to be tested for this or can a person rely on symptom involvement alone?

    I've watched Dr. Cheney's lecture and he said this is difficult to diagnose. It interested me because when I did a poor man's TTT, my systolic BP doesn't fluctuate but my diastolic level bounces up and down until it and my HR just plummet and I will faint. During the TTT this week, I did faint, but I don't know how my BP reacted during the test. The doc wants me to take Midodrine to raise my BP and I took one yesterday morning. Before pill, BP was 90/60, after the pill 101/63. My diastolic pressure was not affected much. My diastolic pressure seems to behave differently than the systolic level does. Is that enough to suspect diastolic dysfunction?
  20. kerrilyn

    kerrilyn Senior Member

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    There is a thread about Cooling vests here http://www.forums.aboutmecfs.org/showthread.php?5386-Cooling-vest I'm thinking of getting one too, the heat is brutal!!

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