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It's been a looong 6 years...


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3 cardiologists, 1 internal medicine specialist and 1 neurologist later... I finally have a diagnosis of hyperPOTS. Is it wrong to say that I was actually relieved when the doctor told me? Lol. No more "Oh you just have anxiety" or "You're probably just lacking sleep". It almost feels validating in a way to know that I wasn't just crazy all those years.

It sounds like getting a diagnosis is just half the battle though? I'm super sensitive to a lot of medications so that will most likely be some trail and error. I also need to continue making some (slow, subtle) lifestyle changes as well to try and beat this constant fatigue. Does anyone have any light exercise recommendations that I could start with? Preferably indoors as I don't do well in heat.

Thank you in advance. Hope everyone has a great weekend :)

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I am very excited for you!!!! I know that feeling. When my cardiologist called me and told me my tilt table was positive for POTS I almost cried. 

From my research HyperPOTS can be tough but I am sure you will figure it out. I am sure some one that has HyperPOTS can give you some good suggestions. Sorry I can't help more I just wanted to cheer for you. 🍾

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Hi - I have hyperPOTS and what has helped me - other than my meds - is this: do what you can when you can ( I am most energetic in the morning, so my chores get done then ). Rest as soon as you feel symptoms ( they are different for anyone, in my case it is palpitations, chest pain, leg heaviness, cold hands/feet, tremors … ). DRINK FLUIDS and EAT SALT! ( If OK'd by your doctors since hyperPOTS causes hypertension). … Do not mess with your meds - and be careful with new meds, many POTS patients are very sensitive to medications. Many of us get overstimulated easily - make sure you can retreat when that happens. -- Most of all: keep your head up! Be calm when you get hyper and have docs who will take endless calls if needed - there are so many scenarios that can happen with hyperPOTS when we are not sure what to do!  Best wishes and - be well

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2 hours ago, jklass44 said:

3 cardiologists, 1 internal medicine specialist and 1 neurologist later... I finally have a diagnosis of hyperPOTS. Is it wrong to say that I was actually relieved when the doctor told me? Lol. No more "Oh you just have anxiety" or "You're probably just lacking sleep". It almost feels validating in a way to know that I wasn't just crazy all those years.

It sounds like getting a diagnosis is just half the battle though? I'm super sensitive to a lot of medications so that will most likely be some trail and error. I also need to continue making some (slow, subtle) lifestyle changes as well to try and beat this constant fatigue. Does anyone have any light exercise recommendations that I could start with? Preferably indoors as I don't do well in heat.

Thank you in advance. Hope everyone has a great weekend :)

That's good.  Hopefully you can be on the path to some alleviation.  Congrats.  

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@Pistol Thank you so much! That's all very helpful. I'll have to double check on the salt because at first she said it probably wasn't a good idea. Sounds like we have similar symptoms though so I'm all over that resting thing!

@zerohours000 Thanks! Hope you are doing well. 

@Potsie1990 What a battle indeed. Have you started any sort of treatment or are you waiting to see which subtype you have?

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6 minutes ago, jklass44 said:

@Pistol Thank you so much! That's all very helpful. I'll have to double check on the salt because at first she said it probably wasn't a good idea. Sounds like we have similar symptoms though so I'm all over that resting thing!

@zerohours000 Thanks! Hope you are doing well. 

@Potsie1990 What a battle indeed. Have you started any sort of treatment or are you waiting to see which subtype you have?

Omg the doctors I have are all not helpful and I live in Los Angeles Lol the 3 recent ones can tell me I have DYS/PoTs so I’m definitely thankful, but outside of that they offer no solutions or have no real education. But I’m going to try and research and present them with information and see if I can help them help me.

ive been prescribed midrodrine but I have a history of violent side effects to vasoconstrictors so I’m terrified to try it. 

I wear compression stocking but meh. I don’t feel like it’s that helpful but then again maybe I just dont wear them as much as I should.

 

im trying the salt but the latest doctor said that may not be necessary for me since I barely sweat at all so I’m not exactly losing fluids. 

I’m going to go see an immunologist and see if I can get tested for MCAS, which i am pretty sure I have as well. 

Thanks for asking  🙏🏻 

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@Potsie1990 I can relate to the violent side effects. So far I've done terrible on beta blockers, but the cardio I saw today wants to try a beta/alpha blocker now... Well what have I got to lose at this point haha!

Good luck with your research. Of course it goes without saying but make sure your sites are reliable! 

How often do you wear your compression stockings? I just got measurements and ordered some today. Got some funky colours to make me feel better 😅

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7 hours ago, Potsie1990 said:

Omg the doctors I have are all not helpful and I live in Los Angeles Lol the 3 recent ones can tell me I have DYS/PoTs so I’m definitely thankful, but outside of that they offer no solutions or have no real education. But I’m going to try and research and present them with information and see if I can help them help me.

ive been prescribed midrodrine but I have a history of violent side effects to vasoconstrictors so I’m terrified to try it. 

I wear compression stocking but meh. I don’t feel like it’s that helpful but then again maybe I just dont wear them as much as I should.

 

im trying the salt but the latest doctor said that may not be necessary for me since I barely sweat at all so I’m not exactly losing fluids. 

I’m going to go see an immunologist and see if I can get tested for MCAS, which i am pretty sure I have as well. 

Thanks for asking  🙏🏻 

Do you crave salt? I don't sweat much either but I crave salt so much that I will dip French fries in salt. It makes my body feel better. When they did the sodium testing on me my numbers were normal. I can't imagine what it would have been if I didn't salt everything. :)

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On 7/14/2018 at 6:53 AM, StayAtHomeMom said:

Do you crave salt? I don't sweat much either but I crave salt so much that I will dip French fries in salt. It makes my body feel better. When they did the sodium testing on me my numbers were normal. I can't imagine what it would have been if I didn't salt everything. :)

Funny enough not really... or not enough that I noticed anyway.  I often crave tangy vinegar-y things... but maybe that’s my body’s way of craving salt! 

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I've seen huge improvement on Mestinon.  It is the only thing that has helped to improve my fatigue.  I drink 2 Liquid IV packets in 3 + liters of water a day and take 2-4 Vitassium Salt Stick caps as well.  I have also had good luck with a stationary recumbent bike.  When I started, I could only go for 5 minutes.  Now I do an hour or more a day.  I've read of several people having luck with functional neurology as well.  Best wishes!

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3 hours ago, Potsie1990 said:

Funny enough not really... or not enough that I noticed anyway.  I often crave tangy vinegar-y things... but maybe that’s my body’s way of craving salt! 

Probably. When I crave salt it is that tang of a lot of ionized table salt that I crave. Next time you get the craving try something salty and see if it helps the craving. If not then you might be craving acid from vinegar. Like kosher dill pickles!!!!! Oh I love those. 😋

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