Outaker Posted July 28, 2019 Report Share Posted July 28, 2019 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 Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted July 28, 2019 Report Share Posted July 28, 2019 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.. Quote Link to comment Share on other sites More sharing options...
Outaker Posted July 28, 2019 Author Report Share Posted July 28, 2019 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 Quote Link to comment Share on other sites More sharing options...
Pistol Posted July 29, 2019 Report Share Posted July 29, 2019 @RichGotsPots here is a list of normal neurotransmitter levels as per Mayo clinic: In @Outaker's case his NE was normal supine but elevated upright - that is typical for hyperPOTS. Mine were almost 700 supine and abobe 800 upright and I have hyperPOTS. The test measures catecholamines by picogram per milliliter (pg/mL); a picogram is one-trillionth of a gram. The Mayo Clinic lists the following as normal adult levels of catecholamines: norepinephrine lying down: 70–750 pg/mL standing: 200–1,700 pg/mL epinephrine lying down: undetectable up to 110 pg/mL standing: undetectable up to 140 pg/mL dopamine less than 30 pg/mL with no change in posture Quote Link to comment Share on other sites More sharing options...
Outaker Posted July 29, 2019 Author Report Share Posted July 29, 2019 Can anyone else confirm? Are my supine levels normal? Quote Link to comment Share on other sites More sharing options...
Outaker Posted July 30, 2019 Author Report Share Posted July 30, 2019 Hello? Are these normal ranges? Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted July 30, 2019 Report Share Posted July 30, 2019 On 7/29/2019 at 6:58 AM, Pistol said: @RichGotsPots here is a list of normal neurotransmitter levels as per Mayo clinic: In @Outaker's case his NE was normal supine but elevated upright - that is typical for hyperPOTS. Mine were almost 700 supine and abobe 800 upright and I have hyperPOTS. The test measures catecholamines by picogram per milliliter (pg/mL); a picogram is one-trillionth of a gram. The Mayo Clinic lists the following as normal adult levels of catecholamines: norepinephrine lying down: 70–750 pg/mL standing: 200–1,700 pg/mL epinephrine lying down: undetectable up to 110 pg/mL standing: undetectable up to 140 pg/mL dopamine less than 30 pg/mL with no change in posture @Pistol a few things here are misleading. Before I get into that first there has been a huge disagreement in the Autonomic medical community for the limits of diagnosing Hyperadrenergic POTS. It was originally 600 and over time it has crept higher and higher. But those higher than 600 levels are not accepted by everyone. As for the misleading part, I originally found a few other reference levels from other labs that were much lower. So I was basing my comments on that. I believe Mayo is one of the highest levels needed for a Hyperadrenergic POTS diagnosis from when I last was looking many years ago. With that said I also looked on Mayo and Mayo shows it slightly different than the picture you posted. This is how Mayo shows the levels. Notice that for Epi and Dopamine there is a < (less than symbol), but for NorEpi there is only a range. If you are saying that by that range his NE is supine is normal than his 1,200 standing and you 800 standing and mine would all be normal because they are under 1,700 for standing. That would be strange. On the reference that I saw below 200 for supine and below 600 for standing. Reference Values NOREPINEPHRINE Supine: 70-750 pg/mL Standing: 200-1,700 pg/mL EPINEPHRINE Supine: < or =111 pg/mL Standing: < or =141 pg/mL DOPAMINE <30 pg/mL (no postural change) Quote Link to comment Share on other sites More sharing options...
Outaker Posted August 8, 2019 Author Report Share Posted August 8, 2019 Any more samples Quote Link to comment Share on other sites More sharing options...
boom99 Posted June 18, 2020 Report Share Posted June 18, 2020 I started Carbidopa 4 days ago and I am miserable. I thought this drug was supposed to have minimal side effects. Any one else get worse they got better on Carbidopa. Quote Link to comment Share on other sites More sharing options...
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