Outaker

I’ll ask about this. If it lowers norepinephrine outburst then we are saved !!

Would this work for  hyperadrenergic pots ?

Klonopin is what i started on and now have weened off since i figured out my disease.

I fly all the time!   I take the clonazepam before the flight. 

Clonidine is good stuff, in my experience.

you ok? this happens alot to me.. Im gonna try moxonidine next 

2 hours ago, jamie0410 said:

Hi @Pistol in the ER yesterday they read me the impression of the autonomic specialist From my test last week and he said hyper POTS 

thank you for sharing your experience they the metoprolol is not working so perhaps something else will have to be added

its just scary when the numbers are so high

thank you!

Where do you live ? Can you get clonidine ?

how high is your bp and is it sustained?

Any more samples

Anyone else have this? where you feel adrenaline just hits your heart and your heart starts racing ._,

3 hours ago, p8d said:

A few things I experienced but a question for @Sushifirst: what symptoms do you get because of “too high vagal tone”?

 I have been on clonidine twice.  The first time when I was more classic POTS and less hyper POTS it was ok.  I don’t recall exactly why I went off. I think because it was wearing off fairly quickly and the dose of the patch was too high and really dropped my BP in the mornings.  The second time was last year and that was a total disaster.  I kept needing higher doses to bring down my BP and then suffered extreme rebound hypertension when it wore off.  I am talking crisis territory every day.  The patch was the same, I needed higher and higher doses and had to supplement with pills at times.  I swear it was like my body was addicted to it.  The rebound hypertension was very scary.  I couldn’t lay down to sleep because I had supine hypertension.  I had to wean off my beta blocker before I could wean off the clonidine so the two plus weeks I had to do this were terrible.  I started guanfacine ER which is pretty good at controlling the surges but doesn’t do anything for my BP which is what methyldopa did too.  I now take Coreg for BP control.  It’s a BB.  It works pretty well but I still get hypertension sometimes so am currently increasing the dose.  I really want to try IV fluids and will be asking my Dr soon if I cannot stabilize soon.  

What’s your plasma norepinephrine 

7 hours ago, jklass44 said:

I agree with what @bombsh3ll said about not taking it while you’re alone for the first little bit. When I first started Clonidine it knocked me off my feet within the first half hour. To this day it still puts me right to sleep (I only take 0.1mg twice a day) however I never actually STAY asleep, which is annoying and exhausting. It also gives me bouts of nightmares and night sweats. My doc is thinking of switching me to a different med to control BP because it’s starting to creep up, and I really don’t feel comfortable trying to increase Clonidine again. 

This drug isn’t for everyone. If you do try it at least give it a week or two before you decide if it does benefit you or not! Good luck!

Whats your plasma norepi levels 

What do you like about this medicine

Its ok I forgive you

It takes 5 seconds 

What were you’re plasma norepinephrine levels ?

Interesting article

Hello? Are these normal ranges?

Are you spontaneously hypertensive ?

Can anyone else confirm? Are my supine levels normal?

26 minutes ago, RichGotsPots said:

A few things. Since your supine NE levels are so high that is not just Hyperadrenergic POTS. Hyperadrenergic POTS is only when upright levels are high. I have mild Hyperadrenergic POTS with 720 upright.  That could point to a problem with your adrenals. Also NE is NorAdrenlaine not Adrenaline even though they are very similar they compete with each other to it is rare for both to be high at the same time. Do you know your Epi levels supine and upright?

 

NE is what is causing your surges and at 400 laying it is not surprising that position doesn’t matter. If I were you I would see a NeuroEndo they think more out of the box then just a neuro or just and endo.

i will have to look into Moxonidine, thanks.

Not sure I understand the Carbidopa because that actually raises Dopamine it doesn’t lower it like you suggest. On my catecholamines Testing I had no Dopamine at all. Not sure if Dopamine competes with NE, if it does I guess it would lower NE but I would be careful of rebound side effect if you stop it..

26 minutes ago, RichGotsPots said:

A few things. Since your supine NE levels are so high that is not just Hyperadrenergic POTS. Hyperadrenergic POTS is only when upright levels are high. I have mild Hyperadrenergic POTS with 720 upright.  That could point to a problem with your adrenals. Also NE is NorAdrenlaine not Adrenaline even though they are very similar they compete with each other to it is rare for both to be high at the same time. Do you know your Epi levels supine and upright?

 

NE is what is causing your surges and at 400 laying it is not surprising that position doesn’t matter. If I were you I would see a NeuroEndo they think more out of the box then just a neuro or just and endo.

i will have to look into Moxonidine, thanks.

Not sure I understand the Carbidopa because that actually raises Dopamine it doesn’t lower it like you suggest. On my catecholamines Testing I had no Dopamine at all. Not sure if Dopamine competes with NE, if it does I guess it would lower NE but I would be careful of rebound side effect if you stop it..

Hey rich thank you for responding. 

You make an interesting point about the norepinephrine it’s actially higher supine than I thought .. wow it’s 600 

I have spent every day researching this disease since October 2018 the time I got sick.

my norepi levels ssupidne are 400 my standing norepi is 1200 

i get violent surges in adrenaline regardless of position.

My trek for a solution has led me to Moxonidine which is only available in Europe-it has proven to be much safer and effective than clonidine.

i am currently using carbidopa which I believe may have huge potential for treating hyper pots since it stops creation of dopamine.

https://clinicaltrials.gov/ct2/show/NCT00685919

Anyone use this before? 

im literally stuffing my face with potatoes every day

17 minutes ago, Scout said:

Hi Sushi.

I have had monitors etc, from 24 hour ones to 72 hour ones. The only thing they've ever found is SVTs, IST, a "junctional rhythm", and PVCs. No afib.

Sometimes I think I am having non-sustained v-tach, as I get several thumps in my chest in succession, very hard and painful, takes the wind out of me. I think the most I've had in a row have maybe been 5 or 6, but they are rare events, and have not yet been caught on monitor. 

I'm due to have another monitor this week actually in preparation to see my cardiologist. So I'll keep you posted.

Really hope you're recovering well after your mitral surgery! 

 

Hows your potassium? If i keep mine above 4 I get no PVCS crazy..