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Treatment options for dysautonomia/POTS?

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by alice111, Jun 11, 2015.

  1. alice111

    alice111 Senior Member

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    hi all,

    So maybe there is already post like this? But I'm wondering what are all the different treatment options for POTS/dysautonomia?

    Has anyone had success or improvements in this area?

    Supplements, protocols or RX drugs?

    Thanks!
     
  2. ahimsa

    ahimsa Sick since 1990

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    Most threads about POTS, NMH, and other forms of dysautonomia are in this forum:

    Problems Standing: Orthostatic Intolerance; POTS
    http://forums.phoenixrising.me/index.php?forums/problems-standing-orthostatic-intolerance-pots.7/

    Another place to look is on the dinet web site:

    http://dinet.org/index.php/information-resources/pots-place/pots-what-helps

    I hope you find something that helps! Treatment can be very hit or miss.
     
    Wayne likes this.
  3. Tired of being sick

    Tired of being sick Senior Member

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    Midodrin or Adderall is best if you have the Hyperadrenergic form of POTS with fluctuating BP
    from real high to real low..
    Drink at least a half gallon of Gatorade per day.
    Where compression stalkings if you leave the house for any amount of time..
     
  4. lnester7

    lnester7 Seven

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    Compression stockings + gut compression
    2) midodrine or any vassoconstriction herb.
    3) Florinef
    4) electrolyte ( I prefer pedialyte)
    5) avoid vasodilation: hot showers, baths, supplements, teas, herbs.
    6) if you have temperatures control I sleep w socks and I do not sweat so I avoid heat.
     
    ahimsa likes this.
  5. Valentijn

    Valentijn The Diabolic Logic

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    I seem to be doing better after starting electrolytes about a week ago. I've been doing Lo-Salt inna glass of water (now with sport-drink powder mixed in for flavor and sugar), but should have a proper mix arriving in the mail today or tomorrow.

    I also found Strattera helpful for low pulse pressure, and I now take Yohimbe for the same reason. But those might only be particularly useful if norepihephrine levels are low, and I take a pretty small dose of either of them.
     
    Wayne likes this.
  6. South

    South Senior Member

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    Yohimbe can actually lower blood pressure further in some people...and raise it in others! So a little careful experimentation might be in order to see if we are as lucky as Valentijn.
    http://www.drugs.com/npp/yohimbe.html
     
    Wayne likes this.
  7. Crux

    Crux Senior Member

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    Wayne, Violeta, adreno and 1 other person like this.
  8. alice111

    alice111 Senior Member

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    @Valentijn did you ever try midodrine or provigil ?
     
  9. Valentijn

    Valentijn The Diabolic Logic

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    I wouldn't say that it lowers or raises mine. It just raises my pulse pressure. My systolic stays about the same or rises slightly, staying at a normal level, and my diastolic drop a bit, also to a normal level.
     
  10. Valentijn

    Valentijn The Diabolic Logic

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    Nope.
     
  11. alice111

    alice111 Senior Member

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    Florinef?
    I ask about these things because they seem to be "first line of defence against pots" but I am nervous to try them
     
  12. SOC

    SOC

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    My daughter and I both take Florinef (fludrocortisone) and definitely benefit from it.

    We also make a point of drinking a lot of water (with electrolytes) and fluid-load before bed and first thing in the morning to compensate for overnight dehydration.

    Compression socks helped my daughter a very small amount and me not at all.

    Daughter is prescribed midodrine, but hasn't found that it makes much difference for her.

    I take a calcium channel blocker and Daughter takes a beta-blocker, both for tachycardia. Both help control our HRs much better, make us feel better in general, and seem to help a bit with fatigue and lack of stamina.

    For me, all of these treatments are very much worth the potential side effects. So far, none of them have given us any problems.
     
    J.G, Wayne, Sasha and 3 others like this.
  13. ahimsa

    ahimsa Sick since 1990

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    I'm taking midodrine, florinef, prescription potassium (time release), salt tablets, and plenty of water (3 liters daily). I sometimes mix up a liter of electrolyte mixture (it has about the same sodium and potassium as what is in a liter of plain, unflavored pedialyte) to get extra sodium and potassium.

    The thing about treatments for different types of orthostatic intolerance is that it is very specific to the individual. What works for me may not work for you and vice versa. There's a lot of experimentation involved and adjustment of dosages. But I do think it is worth trying these different treatments.

    And lifestyle changes (they don't count as "treatments", really, but they may reduce/prevent some of the symptoms) can be very helpful. For example, avoid the heat (that's a big problem for me), avoid standing, sit with your feet elevated whenever possible, use a shower chair, etc.

    Best of luck!
     
    Wayne, SOC and Sushi like this.
  14. Wayne

    Wayne Senior Member

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    Hi @alice111

    Just a cautionary note: I tried Florinef, and immediately afterwards felt like I had drunk 20 cups of coffee--and I felt that way for about a week. I felt terribly sick as well. I only took one dose, and it was one of the most horrible weeks ever for me. -- If you do ever try it, I would recommend starting out with a VERY small dose, and see how you react.
     
    Grigor likes this.
  15. Grigor

    Grigor Senior Member

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    @Wayne , I'm about to start trying it. How much did you take from the get go?? I'm always super sensitive to meds so a little worried.
     
  16. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    Sorry i can't remember the names of mine that ive tried so far (brain fog) but i've tried a beta blocker and calcium channel blocker.

    Both lowered my resting heart rate to the 60's, and stopped the tachy spiking when upright.

    The result of this was a near catatonic state. Prof newton told me to stop using my heart rate monitor and instead go off how i feel, instead of fixating on the heart monitor (which i never did)

    So i removed the heart monitor. Day one of calcium channel blocker i'm feeling tired, day two more tired, day three trancing more often than not. Day four staring at a wall for hours... By the end of the first week, i was catatonic and even drewling occasionally forgetting to swallow.

    We put my heart rate monitor back on and my pulse had stabalised with the drug in the 60's with no tachy. This resulted in me being a brain dead zombie.

    I told her that it made me ill the first time i tried it so i stopped, but she told me to stay on it for 3 months this time without using the heart monitor to tell me how i feel. The result was i got to the end of week one, exactly the same as the first time before i had no choice but to stop. As soon as i start blacking out, then i'm stopping!

    So for me, lowering the pulse and stabilising seems to have disasterous effects and stops my brain getting the blood it needs to stay conscious.

    For me my POTS seems to be my bodies method of keeping me conscious so it looks like i'll have to keep it :bang-head:
     
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  17. SOC

    SOC

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    It's important to remember when taking Florinef, and often tachy meds as well, that it's necessary to drink a lot of electrolyte water daily -- 3-4 liters. Tachy meds may not work, and might even make you worse, if you have untreated low blood volume.

    Florinef can only increase blood volume if you give your body enough fluid in the first place. That includes fluid-loading before bed and in the morning to compensate for overnight dehydration that can happen if you are prone to low blood volume (as many of us are). It is also potassium-wasting, so it's easy to develop low sodium on Florinef if you don't add more potassium to your diet via food or supplements.

    If you don't have enough blood volume, slowing HR will just cause you to feel worse. The high HR was probably compensatory. Slowing the HR without dealing with the underlying problem of low blood volume (with Florinef or desmopression, and increased fluids and electrolytes) could result in further loss of blood flow to the brain and periphery, making you feel even more crappy.

    If you are having trouble with Florinef, desmo, beta-blockers, or calcium-channel blockers, these are issues worth discussing with your cardiologist.

    That isn't to say that these meds are good for everyone, or that some people won't have bad reactions to them. We're all different. I'm just trying to point out that if you need these kinds of meds, it's a good idea to give them the best possible chance of working for you before you give up on them.
     
    ahimsa likes this.
  18. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    Increasing liquids and electrolytes doesn't make a blind bit of difference to me. It would be silly to take these meds without doing that.

    I wish prof newton would precribe florinef but until low blood volume is accepted, they won't do this. She's currently trying to get funding to research low blood volume. I don't know if she got it or not.
     
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  19. SOC

    SOC

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    Yes, I can see why more fluids wouldn't make a difference if you can't keep the fluids in your system with Florinef or desmopressin. It just goes straight through, so there's not much point. They didn't do me much good without Florinef, either. Neither Florinef, nor verapamil alone was anywhere near as good for me as the two together.

    You might have some luck if you could get hormones that control blood volume tested. That's aldosterone and vasopressin, isn't it? Sometimes you can get acknowledgement of low blood volume if you have consistently low pulse pressure (systolic minus diastolic).

    Let's hope Dr Newton gets the funding she needs to research low blood volume.
     
  20. Rlman

    Rlman Senior Member

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    the blog POTSgrrl has tons of info. She has a post on Florinef, tolerated it very well.
     
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