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Daughter diagnosed with POTs: Questions regarding meds

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by soulfeast, Apr 12, 2012.

  1. soulfeast

    soulfeast Senior Member

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    My daughter is 14 and diagnosed with POTS at ANS disorders clinic. She has a persistant low BP and tachy when standing. Her BP drops when standing initially.

    She has been prescribed a low dose beta blocker: Bystolic and Zoloft (to help raise BP and Im assuming from blood vessel constriction?)

    She is of course to increase fluid and salt intake, etc.

    I am concerned to give her the SSRI and am thinking about her Yasko Nutrigenomic Methylation panel results:

    She is homozygous for MAO and heterozygous for COMTs. I know there is a relationship here with both of these snps and seratonin. I think Yasko recommends low dosing 5-htp through out the day to keep serotonin more stable because as I understand, it can swing which can cause mood swings. I need to get back into the Yasko info. Its been a while.

    I am also concerned because she has an ACE deletion and not sure how supplementing with high dose salt 3000grams a day effects that.

    Thoughts and experiences would be appreciated, even if it is to tell me its good to take the SSRI!

    She does not have CFS and her main symptoms are the POTS (which is presenting mostly as tachy, grey outs and being very anxious). I have developed the CFS and hope to keep her out of my spectrum. I am crashing constantly esp with detox (obviously its own thread).

    Thanks so much!
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I saw and ANS specialist and, as I remember, he didn't find zoloft a good choice for POTS. He was more likely to prescribe cymbalta and strattera for vaso constriction as they both affect norepinephrine in the peripheral veins. (As I remember!)

    I found strattera particularly helpful.

    Sushi
  3. adreno

    adreno 3% neanderthal

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    I have the same SNPs and take an SSRI. I only tolerate half the regular dose, though.

    I agree with Sushi that an SNRI would likely be more effective here, or an alpha 2 antagonist, like mirtazapine. Perhaps even midodrine.

    I am also doubting that a beta blocker will be a good choice here, since it will lower her blood pressure even further.

    Can't say about the salt, but for me, potassium helps. I take a ton of it, about 5000mg daily. I don't have low bp though, only POTS.
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Potassium and salt both help me too. And, my doctor also said he found that a beta blocker was only helpful for about 2% of patients. Course your daughter could be in that 2%!

    BTW, his daughter had POTS too.

    Best wishes,
    Sushi
  5. adreno

    adreno 3% neanderthal

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    Maybe I should clarify; I take salt also, but I take potassium:sodium in a 4:1 ratio.
  6. nanonug

    nanonug Senior Member

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    Make sure you look for histamine overload as the cause of POTS/low BP. Urinary N-methylhistamine and plasma histamine and tryptase would be markers to look at.
  7. soulfeast

    soulfeast Senior Member

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    I have really been wondering about the beta blocker as well. I take one and it helps the tachy but now my BP is lower. She is half dose and I will keep a check on her BP and pulse. I want to hold on the SSRI. I am really confused. I did not have low BP, so it probably dropped when I stand but tachy put it back in range well. But she is low all the time. THe neurotransmittor balance has me concerned.

    You all are too smart for me. I need to play catch up with the info. The trick is to keep her blood fluid up and constriction or vascular tone Im thinking. And if the betablocker pushes BP too low thats going to trigger more adrenaline I would think?? I wonder if thats one reason I might get adrenaline dumping when I detox? Vasodilate and Bp drops too low then this made worse with beta blocker??
  8. Carrigon

    Carrigon Senior Member

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  9. xchocoholic

    xchocoholic Senior Member

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    Please excuse my bluntness, but I hate reading that children are being diagnosed with chronic illnesses
    when there's possibly an easy solution.

    Fwiw, I'd forget about following what our experts, all traditional mds, tell us to do. They're
    trained to keep us sick and on medications not help us heal. This is what med schools teach them.

    I tried salt loading and drinking 8 - 10 glasses of water a day for several years, but of course it never helped my dysautonomia. The salt keeps my bp up of course but that's all. I'm eating more raw fruits and veggies now to balance my electrolytes. And drinking less water. Imho, in hindsight, this is a no brainer.

    If possible, I'd see an integrative doctor. These doctors realize how limitted their education was and have moved on to practicing both traditional and holistic. They know that sometimes holistic treatments work and sometimes the patient needs a drug. The very first thing these doctors will recommend is changing her diet to exclude known food intolerances like gluten, dairy, soy, corn, etc and all chemicals.

    I've had more progress changing my diet than anything else. At this point, I'd recommend listening to
    Dr. Terry Wahls TED video on how she cured her ms. It sums up what took me 6 years to learn.

    And based on how many of us have adrenal problems, I recommend absolutely no caffeine. Zip. Nada. Lol .. And No chocolate .. At least until your dd is calm 24/7.

    Hope your dd feels better soon.

    Tc .. X
  10. soulfeast

    soulfeast Senior Member

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    Dysautonomia runs in our family. My niece flatlined in school a month ago. Paramedics nor ER MDs could find her BP. How this can happen is beyond me unless there was a loss of peripheral BP and they needed an arterial line to find it? My sister, her mother, was diagnosed by one of the premier ANS MDs in the world over 15 years ago after years of symptoms since childhood that went completely out of control and feeling like there was something wrong with her mind because how can anyone present with her symptomology. The diagnosis was a life line for her. It could have kept her from killing herself.

    She had wildly swinging BP and pulse and of course many other symptoms. Vanderbilt (fledgling researchers at the time, now I believe well known for their research in the field) didnt know how to deal with her. She needed a life line and they could not give her one and yes that was a diagnosis. They left her out in the cold alone to figure this out on her own with an ailing specialist (one of the first and like I said premier in the field) who was able to help her when he could at the time becasue and who "normalized" this with a diagnosis for her ... she didnt fit into Vandy's then liimited boxed view of dysautonomia, which they later revised. This benevolent MD is the one the ER MDs called close to frantic when they didnt know how to stablilize her BP and pulse and this was all too common an occurance for her. So when my sister or I see this manifesting in our children, you better bet we are going to pursue allopathic and integrated then ask questions and make decisions based on all the info we can get. Dysautonomia can get very out of control and has to be managed and your thoughts are relevant but may not be enough for all people.

    We unschool ( a form of "home" schooling), which means we think school and its diagnoses, boxed curriculum and standardized testing is stupid ( read John Holts books on education and the Underground History of Education by John Taylor Gatto). We don't give grades or go by grade levels. We think thats silly or so I thought until my daughter wanted grades and wanted a grade level. My son still thinks its silly. I think its a ridiculous limiting mindset that boxes children into stupid ideas of who they should be based on how they perform based on generalized impersonal performance standards. But, my daughter wants grades and a grade level and now wants to go to school. Who is right? Me or the need she sees for herself at this moment in time?

    My sister has a life now because she has openly dealt with her ANS dysfunction the way she needed.. she needed the diagnosis. (clonidine actually finally shifted things for her along with body work and brain retraining.. she figured this out long before the programs were developed). We do see integrated and alternative mds. I have been sick for over 8 years now and have been through many practioners and types of practioners.

    I think there is a time and place for all kinds of practioners. I suspected the POTs as it was rather obvious but I wanted a tilt table et al diagnosis for her more than for me. And I am now here questioning the treatment. I don't trust any system, allopathic, alternative or integrated, esp when I do not see any flexibility of thought or on the other hand, flightiness which I have seen alot of on the alternative end of the spectrum and that includes diets.

    I would not have had my environmental (integrated) MD perform my sinus surgery (invasive fungal issues which can be pretty dangerous)nor perform my colonoscopy and remove my precanerous polyp. I saw integratred practioners for years that i told about certain issues which went right over their heads because these issues were not in their speciality. Because of that, my disease process continued and worsened.

    A beta blocker has been a "life saver" for me as has increased salt intake and electrolytes/minerals. Knowing my Yasko genetics has as well because knowing COMT++ status reveals a bit about my hyperadrenergic state and how at least not to feed it even worse than it is. I do not think mycotoxocosis from living in a mold contaminated house for 10 years is helping the situation either.

    My daughter is being treated for heavy metals, chronic yeast and was living in a mold contaminated house for most of her life. she has been tested repeatedly for food sensitivities, hormones (currently treating with an integrated MD), and adrenals (same). She has been treated for lyme and I can't second guess that though I know it didnt help wth the fungal issues. I think I have some sort of handle on the big picture. What I want to do is address her POTs in the best way I deem for her as her mother and in a way that helps her feel good about herself.

    The ANS MD also said no caffeine sugar, etc. I think thats pretty obvious. My concern is she is not being very discerning with the treatment protocol but thats why I do have an integrated MD or more actually to bounce things off of as well. Too much water without electrolytes can dehydrate you. This MD did not share nuances with me about that.. the direfctives were to drink 60-80 oz a day. I agree with you... Its simplistic and cookie cutter which is why I posted here. We have to limit fruits and sugars because of the fungal infection, but I get what you are saying.. you managed to find a healthy way to hydrate.

    In the meantime, if a beta blocker helps, I'm using it. She has enough anxiety on her plate and if this helps calm her system down without swinging it out of balance then I'm up for that experiment. I am less willing to experiment with an SSRI esp without undertstanding why this might be helpful and without undersrtanding how it can be harmful beyond noted side effects or without pursuing other ways to help her with vasoconstriction. I am also pretty sure hydration is not going to solve blood vessel mal contriction, but I am open to being wrong about that. Dealing with metals and fungal infections and mold toxins more likely might. Im not sure the (potential) blood volume loss is not due to mycotoxicosis.

    My daughter has been on the GAPS diet and gluten-dairy free. I am pretty familiar with the SCD as well. Grain free, BED, etc. We are currently trying out the Perfect Health diet. I think kids exp need some carbs (after exploring paleo). We are all about diet, lifestyle and alternative ways to address. But she thinks there is something wrong with her and I prefer an allopathic diagnosis over her thinking she is crazy.

    Thank you for caring, X. I know you do. Its not easy when it comes to your own kids and making these decisions.
    Carrie-Louise likes this.
  11. soulfeast

    soulfeast Senior Member

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    Thank you, Carrigon. I started one video and this may be good to help me understand more and my daughter as well.
  12. soulfeast

    soulfeast Senior Member

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    Thanks for these specifics, nanonug and thanks to sushi and adreno. I think this info will be on her OAT test or some should?
  13. nanonug

    nanonug Senior Member

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    By OAT I assume you mean Organic Acid Test? None of the histamine stuff will be, I would assume.
  14. soulfeast

    soulfeast Senior Member

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    Where would I get the histimine testing? Thank you.

  15. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    If you have "good insurance" and have met your deductible, Genova's NutraEval tests just about everything (pretty sure it tests histamine, but you'd have to look at it on their website. It is a combo of a number of comprehensive panels) and is not expensive if your insurance pays.

    Best,
    Sushi
  16. ahimsa

    ahimsa Senior Member

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    possible typos?

    I'm sorry that I can't answer your question (don't know anything about ACE deletion) but I thought I'd ask whether this is a typo. Did you mean 3000 mg a day (3000 mg = 3 grams) instead of 3000 grams a day?

    I have heard of people taking even more salt than that, sometimes 5-6 grams (which is quite a lot), but never 3000 grams. At about 2400 mg sodium per teaspoon of salt then that would be about 1,250 teaspoons of table salt each day (please check my math, I could have messed up somewhere).

    Again, I wonder, is this typo? One prescription potassium pill, e.g. Klor-Con (time-released version), comes in a 10 mEq dosage (750 mg) meant to be taken once a day. You'd have to take 7 of those prescription tablets daily to get to 5000 mg (7 * 750 = 5250).

    FYI, I supplement both sodium and potassium so that's why I'm curious about these numbers.

    PS to soulfeast: Best of luck getting the right treatment for your daughter - she's very lucky to have you in her corner!
  17. nanonug

    nanonug Senior Member

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    Mayo Clinic Labs and Quest offer the test for N-methylhistamine, which is considered the gold standard for histamine issues. Labcorp offers plasma histamine and tryptase.
  18. adreno

    adreno 3% neanderthal

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    No, it isn't a typo. I use potassium citrate powder.
  19. ahimsa

    ahimsa Senior Member

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    That seems like a lot but if it's working for you then that's great!

    Just curious, but do you take 5000 mg of the potassium citrate powder? Or did you calculate the amount of powder that would equal 5000 mg of potassium? Since the powder is a combination of potassium and other elements (C6H5K3O7) then the amount of potassium in 5000 mg of powder is less than 5000 mg.

    For example, according to one web site about 275 mg of this powder is about 99 mg of potassium (the rest is the other ingredients). Doing the calculation (again, hope my math is correct!) then it takes 13,750 mg of the powder to equal about 5000 mg of potassium.

    I guess the point is that all these different units can be confusing, at least to me. :confused:
  20. xchocoholic

    xchocoholic Senior Member

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    Hi again. After re-reading what I wrote, i can see that I probably sounded harsh. My apologies if I came
    accross that way. I'm glad you understood that I said it because I care. Apparently too much sometimes ..

    Fwiw, I'm using a tablet most of the time now and my cfs brain is focusing too much on one finger typing .. Lol

    I have a dd who grew up with health problems including a high ana and anaphylaxis so I understand. Fwiw, she's an adult now and on a vegan gf diet and feeling the best she has her whole life. She's also juicing. Of course she still carries an epi pen just in case so I get that her health's not 100%.


    That's part of the reason I feel so strongly about kid's health. We wasted her whole childhood because we trusted her traditional doctors when they told us drugs were the answer. And I was a hyper / zombie mom for 15 /2 years after getting me/cfs because I trusted my specialist. No one told us how important diet was. And now we both wish we could get those years back.

    But, while I do have strong beliefs about using diet, supplements, etc to help our bodies heal, I realize that this doesn't always happen. No matter how much we want it too.

    I'm glad you saw an integrative doctor but sorry to hear you're not happy with the results. I guess I'm lucky to have an integrative doctor that I feel I can trust. It helps that my traditional doctors
    have all referred me back to her and really seem to think she's sharp. I do too. Fwiw, I would have to say they trust each other because she refers me to them for what they know too.

    Not that she's cured me but I feel like I have a much better understanding of why. But most of my me/cfs symotoms are under control via diet. Kow. I'm a celiac who also has neuro problems from gluten who
    isn't smart enough to avoid gluten so I keep making myself sick. I just ate out at whole foods on wed and I knew not to trust the food on their buffet to be gf but I caved and ate it anyways. According to my stool tests, I overproduce gluten antibodies. In my defense, I'm hungry all the time.

    As far as picking a diet goes, Imho, i was fortunate enough to be directed to the paleo and low oxalate diets back in 2007-8. I don't know which one helped but my candida is gone finally. I've read that the low oxalate diet would help this tho if you want to try it. There's a yahoo group for this.

    I hope you get this worked out whatever you do. Tc .. X

    Ps. Hugs from one mom to another.

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