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BTD Forums    Diet and Nutrition    The Encyclopedia/ D'Adamo Library  ›  I've been diagnosed with POTS.....
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I've been diagnosed with POTS.....  This thread currently has 3,457 views. Print Print Thread
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JJR
Tuesday, December 7, 2010, 11:31pm Report to Moderator Report to Moderator

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Kyosha Nim
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Postural Orthostatic Tachychardia Syndrome

My EP doctor says this is what I have and wants me to take Mestinon or Pyrodistigmine. He did admit they don't fully understand it and it's possible some of the other things I'm dealing with are causing it.  But not knowing which thing to fix as a cardiologist, he said the drug will hopefully help.  Or, it could cause diahrrea and muscle weakness.  Great, just what I need.

It does sound like what I have, due to how I feel and the tests they ran showed that.  The tilt table, and I noticed in one of the doctors office down at mayo she took my blood pressure sitting and then standing and I noticed it had gone down about 15 points while standing.  

This website shows more about it:

http://www.dinet.org/pots_an_overview.htm

Including the fact that being low in nitric oxide can cause it.  Ding Ding.  I may have to get some from Dr. D and see if it helps.  I don't know if that will solve all my problems, but it may help.  Because to me, this POTS seems like an affect of all the different causes I may have.  What the cause is of all the other causes, I don't know.  But I'm going to keep plugging away with the doctors and see what I can find.  And of course eating good foods that are right for me.  

Maybe I should do like Lola said and give Dr.D a call and do a phone consult.  I wonder how much that costs and how beneficial that would be.  

Anyways, it at least explains some of the way I'm feeling.  Maybe not all of it, but I think it just gives it a name.  Which will be good for my in laws.  They're always skeptical of me being sick.  Like I have no reason to be.  They're becoming much more open to it now though.


The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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C_Sharp
Tuesday, December 7, 2010, 11:39pm Report to Moderator Report to Moderator

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Sa Bon Nim
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I have a niece with POTS.

I ran SWAMI for her a few months ago. She seems to be doing better on it, but not a full cure.

I am not sure that I through all the right switches for POTS.


MIfHI                            I follow a SWAMI diet.
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JJR
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That website shows that it could be numerous things that cause it, including viruses.  It may take a while to track down the trigger.  Although it may be that correcting some things may help overall.  I don't know.  I think I'm going to start following my swami, as it has me eating more meats and this may help in the blood pressure department.  I don't know.  I had my wife pick up some of the meats that my swami says are neutral.  Plus, I have a lamb roast for tomorrow.  And it's been a LONG time since I've had any red meat at all.  I have to try rabbit sometime too.  I just never see it anywhere.

But, like you say, it may not cover it completely.  At this point I'm open to taking the drug he wants me to take, just to see how it does.  

Plus, I was vitamin D deficient and the Endo guy prescribed 50,000 IU gel caps once a week.  I'm kind of worried about taking that much at once though.


Does your niece have hypotension with it?  Because I guess you can have it with and without.  Or something like that.  Have they prescribed any other medications that seemed to help?  The drug they want me to take actually regulates acetycholine by blocking it's breakdown.  Which, I'm not sure I want that, but it's better than some of the other drugs I think.


The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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C_Sharp
Wednesday, December 8, 2010, 2:25am Report to Moderator Report to Moderator

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I believe she has hypotension at times, I do not know the readings.

I get rabbit from a friend that raises rabbit.

I used to get it at Mexican markets.


MIfHI                            I follow a SWAMI diet.
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Lola
Wednesday, December 8, 2010, 2:49am Report to Moderator Report to Moderator

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call the clinic and ask all your questions about a phone consult....

I know you pray, and that for you is a diamond!!
so you re in good hands!


''Just follow the book, don't look for magic fixes to get you off the hook. Do the work.'' Dr.D.'98
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Goldie
Wednesday, December 8, 2010, 3:55am Report to Moderator Report to Moderator

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I would call and find out what all the questions might be that you need to ask, then see what will be suggested.. sometimes having a label helps, just a word can make it easier, but still SWAMI might be the most least expensive way to actually deal with any illness or condition.. fixing it will take time, but so what, it is the only way you can make any difference, so call the office.. as it will speed some things up..

glad you found out why you felt so bad.. (past tense) because you have gotten better some.... ?!


Being here is invaluable, but not enough. We need ALL the Doctors. I needed them for a very small cancer spot-I could never feel!!! Please do your mammograms! Doing so saved me from cancer later on. I am grateful! Thanks for learning from my experience! I was lucky! I wish the same for YOU!
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Amazone I.
Wednesday, December 8, 2010, 11:36am Report to Moderator Report to Moderator

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a little bit of more psychosomatics ....


MIfHI K-174
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Lola
Wednesday, December 8, 2010, 5:59pm Report to Moderator Report to Moderator

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following Dr D s advice when it comes to physiological individuality and a particular sup, has so far worked like a charm!!!
I don t plan to change the strategy, until I read or hear otherwise, during one of his conferences or in the posts he at times graciously participates in.


''Just follow the book, don't look for magic fixes to get you off the hook. Do the work.'' Dr.D.'98
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JJR
Wednesday, December 8, 2010, 7:31pm Report to Moderator Report to Moderator

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Quoted from Amazone I.
a little bit of more psychosomatics ....


Could be, everything has an emotional component.  But if you look at the symptoms, I have them all.  One thing it (the website I linked) tells you not to do is fly on commercial airplanes.  And it explains exactly how I felt, even though I didn't know why it was happening when I did it (to and from mayo in jacksonville, fla).  As soon as they started to pressurize that cabin, I started breathing deeper and needed to drink water like it was going out of style in order to keep my heart rate not going above 120.  Plus I used some calcium channel blockers.  If I wouldn't have had those, I would've been in big trouble.  So, I thought I was just having anxiety, but the fact of the matter is, if your vessels aren't constricting or dialiting like they should, it can give you big problems.  

Is it all in my head?  I don't think so.  Will working on my head help?  Definitely.  



The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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JJR
Wednesday, December 8, 2010, 7:48pm Report to Moderator Report to Moderator

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Quoted from Goldie
I would call and find out what all the questions might be that you need to ask, then see what will be suggested.. sometimes having a label helps, just a word can make it easier, but still SWAMI might be the most least expensive way to actually deal with any illness or condition.. fixing it will take time, but so what, it is the only way you can make any difference, so call the office.. as it will speed some things up..

glad you found out why you felt so bad.. (past tense) because you have gotten better some.... ?!


Yes, thank you for asking.  I do feel better.  Not tons and back to normal, but things have calmed down some.  I have been sleeping better and much less pain and inflammation then when it all started.  In fact, that's pretty much a non issue, although I can still feel it.  Wiki says that IBS can be linked to this POTS and I have a feeling that's all it is.  

I just got back from my Holistic MD and they might have figured out a better thing to take than the drug the EP doctor wanted me to take.  They do muscle testing and are saying the Mestinon probably wont make me feel better.  I think I'll still try it but it seems like my body needs Acetyl Carnitine, instead of something that stops the breakdown of acetylcholine.  I'll give the drug a try possibly, just to see if they're right or wrong, but at least I have some options.  

And the 50,000 IU's of Vitamin D prescribed by the endo doctor, I'm not touching.  I always felt terrible when taking just a little bit of D3.  Problem is you don't know what kind of D they're giving you.  They're these greenish gel caps.  If I feel terrible with 400 IU's, I'm not sure 50,000 is wise.  You know?


The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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Jane
Wednesday, December 8, 2010, 8:01pm Report to Moderator Report to Moderator

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It's not unusal to get the prescription D.  I took it once a week for 4 weeks to try and get my levels up and last time I was checked, I was still low.  I'm currently taking 5000 IUs of D3 a day.
Glad you have at least identified what your problem is.  Hopefully the meds will help.
Jane
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Narc
Wednesday, December 8, 2010, 9:07pm Report to Moderator Report to Moderator

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I read the link. If I understood it correctly, the cause of POTS seems to be centered around the function (or malfunction) of ones Autonomic Nervous System (ANS).

During early life experiences, the mother functions as a surrogate for the ANS. The mother fulfills the childs basic bodily needs by intuiting when to feed, stop feeding, how to hold, regulate temperature with clothing and blankets, etc. If this "holding environment" (D W Winnicott) is disturbed or inconsistent, the child may develop with an unconscious and ubiquitous absence of faith in the basic functions of the body such as those regulated by the ANS.
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Ribbit
Wednesday, December 8, 2010, 9:27pm Report to Moderator Report to Moderator

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Interesting, Narc, but babies do communicate needs.  It's not just motherly instinct.  I do believe, however, that listening to your baby and answering those calls could play a big part in ANS development.

ABNW, I'm glad you've at least got a name for it.  ((hug))


ISTJ, BTD since 5/05.  Battling chronic Lyme disease since ~1985.

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Narc
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Quoted from Ribbit
Interesting, Narc, but babies do communicate needs.  It's not just motherly instinct.  I do believe, however, that listening to your baby and answering those calls could play a big part in ANS development.



I have no experience in being a mother. My statement is purely theoretical. The point I was making was not whether or not the child communicates its needs (I am sure it does), but how effectively the mother seamlessly meets those needs. A disturbance is inevitable, it is a matter of degree, and such disturbances may relate to the regulatory functions of ones ANS in later life.


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Amazone I.
Wednesday, December 8, 2010, 9:41pm Report to Moderator Report to Moderator

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complete of mine.. I know what you're talking about but be assured, it is nothing dangerous... may I ask you to look and lay back into the booklet of Louise Hay ....


MIfHI K-174
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JJR
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I couldn't remember the name you are always talking about.  But maybe it's time to look into it.  I'm open minded.  And at this point, anything that can help is welcomed.  What book should I get or CD's or whatever and where is it.  My mind needs a good flushing.  And I appreciate your loving persistance to help me in this area.  You are beautiful.

As far as the mothers inputs and all that, I do know this, when I was concieved, born and reared, it was a stressful time in my Mom's life and mine.  My parents were divorced when I was 7.  And I remember being scared a lot of my younger life.  I'm sure it's affected my health.  I have a missing major pectoral muscle on my left side and according to one of the Dr.D books, that spells stress in utero.  So there you have it, I'm all messed up.  Hehehehe


The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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Lola
Thursday, December 9, 2010, 3:43am Report to Moderator Report to Moderator

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TG you are not a nonnie!!


''Just follow the book, don't look for magic fixes to get you off the hook. Do the work.'' Dr.D.'98
DNA mt/Haplo H; Y-chrom/J2(M172);ISTJ
The harder you are on yourself, the easier life will be on you!
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Amazone I.
Thursday, December 9, 2010, 11:19am Report to Moderator Report to Moderator

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ABNoWay... we've to observe how we are creating our thoughts... fist a thought...next a feeling and then it may come along with fear or other nagative outbursts... go for positive affirmations, it really works for us, equal if nonnie or sechi... it works for all of us!!! And perhaps would you like to renifle a little bit in the Ruiz programs, its easy to listen even easy to do and it works then on your own... justamente beautiful 5 little sentences to incorporate... but we've to do it...and really all is about *agreements* feel hugged from Isa


MIfHI K-174
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Goldie
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Quoted Text
Yes, thank you for asking.  I do feel better.  Not tons and back to normal, but things have calmed down some.  I have been sleeping better and much less pain and inflammation then when it all started.  In fact, that's pretty much a non issue, although I can still feel it.  Wiki says that IBS can be linked to this POTS and I have a feeling that's all it is.


THIS IS what I was looking for!! Good job..

So now you have a label.. so now you have a compass.. and now start the work you already started..

SEE if you can get DrD's Encyclopedia.(from the library) . read up on all his protocols.. then read in-between the lines what he recommends.. some sups can be found in real food.. some are worth buying when food is not enough..

as for the mental stuff.. that is also connected to the foods we eat or don't eat.. I for one have started to drink hot cocoa for about a month and my cravings have diminished to the point of non existence.. I have no Idea how this particular item can do that.. ONE spoon in the morning in hot water is enough.. why how come?? I am not saying this for you to try it.. I don't know if it is on your food plan, but I am telling you that what I should have tried 15 years ago, might have saved me many miserable hours or days..

It's interesting for me to know that it was one food next to meat for me (O) that I never gave up no matter how ill I was..

I am not familiar with what you need to eat, but you need to be looking at the encyclopedia as for you most important.. then since that was written a long time ago, there is a lookup here to make sure you will do the up to date protocols..

feed your body and the mind will follow..  for all there is a time when we do certain things.. some years we need to be enticing a spouse.. some years we need to feel the nurturing of a child, and then come the years when we learn about our SELF and you are in that time frame when we have to take some time to learn where we came from and what we need to do about it to HEAL all the baggage.  

Close your eyes and let your body tell you -- a memory pain , review it and then set it aside, by doing what it is that you NEEDED when YOU first experienced that 'pain'.. if a massage is needed give it, if a hug is needed give it, if a food is connected - respond lovingly (within our borders), if a bath would be good, then clear the space to make it your own, if lighting a candle in memoriam is what feels right, light one, if a candle for romance is needed then light many,  buy flowers for your self.. even if you only give them to a partner or a friend.(keep the reason for the flowers to your self) . we can heal and it is doable,, but we have to do the work..   so off you go to a life worth changing and you changing with it..  you are in that age when this is the beginning of YOUR OWN LIFE.. this will go on for a few years..          


Being here is invaluable, but not enough. We need ALL the Doctors. I needed them for a very small cancer spot-I could never feel!!! Please do your mammograms! Doing so saved me from cancer later on. I am grateful! Thanks for learning from my experience! I was lucky! I wish the same for YOU!
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ruthiegirl
Thursday, December 9, 2010, 2:16pm Report to Moderator Report to Moderator

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At least now you have some more information about what's happening with your body, and you can use that information for healing.

I don't know enough about POTS to know if conventional medicine is a good idea or not- of course in conjunction with natural healing methods, not in place of it.

If old emotional baggage is a part of the issue, Bach Flower Remedies may be helpful.


Ruth, Single Mother to 19yo   O- Leah , 18yo O- Hannah, and  12yo B+ Jack


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Louise Hay, thanks Amazone I., http://www.louisehay.com/enews/thankyou2.php#.


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Quoted from Debra+
http://www.bodytalksystem.com/learn/access/cortices.cfm

Awesome, awesome, awesome stuff.   With BTD/GTD...EVEN MORE SO.  

Debra


I take it you're the one that emailed me. Cool!  I'll have a look at that.

I have to say something, my BP has been up consistently today.  I ate lamb last night for the first time in a long time.  When I say "up" I don't mean dangerously up.  I took it twice and the last one was 105 / 78.  That's not high, but it's higher than it's been in days.  I bet you 10 bucks it was the lamb.  Well, I have a feeling it had an impact.  

Now I'm having the brain fog symptoms.  Which in the past has meant adrenals.  Or possibly yeast.  But my tongue isn't too bad looking.  I'm pretty sure I still have it though.


The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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Quoted from Lola
TG you are not a nonnie!!


I got enough problems.     You think it would make them worse?  


The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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Bound to;) As Lola said...Thankfully you aren't

Not sure what to say - but good you have a name for it & the knowledge/advice not to fly
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