Orthostatic intolerance: POTS, hypotension and more. Webinar with professor Peter Rowe 19.10.21

Learner1

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Nice talk. It would be nice if he could include Huperzine A, a supplement, as an alternative to pyridostigmine bromide, all versions of which contain common allergens. Huperzine A has a very similar mechanism to pyridostigmine with a longer half life.

It used to be able to be compounded but, according to my FDA contact, "due to market manipulation by the manufacturer," it can no longer be compounded.

Pyridostigmine also can have very unpleasant intestinal side effects. When I switched to Huperzine A, the positive effect on my POTS was similar, but I had no intestinal discomfort. Huperzine is also cheaper and no prescription is required.
 

LINE

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Thanks for posting, not sure if he simplified this. This is really just adrenal weakness or adrenal exhaustion. The adrenals will always become weakened through any form of stress which includes the obvious of emotional stress but biological stress is more apparent with ME. Immune activation is one of the big adrenal taxes as well as toxins.

The adrenals are the major participant in homeostasis which is the forces necessary to keep the body in balance. Assuming one has normal stressors then the adrenals can easily repair, however with continual unrelenting stress, then the adrenals become 'tired' and under-perform.

Orthostatic hypotension testing just indicates that the adrenals are tired. There are plenty of nutrients that can restore adrenal functioning including Vitamin C*. Studies I read show that low Vit C will cause the adrenals to hemorrhage. I have other studies of other nutrients that can help, let me know and I will list these out.

I developed severe adrenal problems and restored their function with these applications.

* Vitamin C is an important cofactor for both adrenal cortex and adrenal medulla - PubMed (nih.gov)
 
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lenora

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@Learner1 ...... Hello! Are there places that can produce Huperzine 'A' or not? Are all compounding pharmacies not producing it or the ones you know about? I'd like to have these answers before bringing it up with my ever helpful neurologist. Thank-you. Yours, Lenora.
 

lenora

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Thanks @Helen 1. I read it wrong and had it in the wrong context. I'll definitely check into it, as it's not the first time I've heard of it. Yours, Lenora.
 

Violeta

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Thanks for posting, not sure if he simplified this. This is really just adrenal weakness or adrenal exhaustion. The adrenals will always become weakened through any form of stress which includes the obvious of emotional stress but biological stress is more apparent with ME. Immune activation is one of the big adrenal taxes as well as toxins.

The adrenals are the major participant in homeostasis which is the forces necessary to keep the body in balance. Assuming one has normal stressors then the adrenals can easily repair, however with continual unrelenting stress, then the adrenals become 'tired' and under-perform.

Orthostatic hypotension testing just indicates that the adrenals are tired. There are plenty of nutrients that can restore adrenal functioning including Vitamin C*. Studies I read show that low Vit C will cause the adrenals to hemorrhage. I have other studies of other nutrients that can help, let me know and I will list these out.

I developed severe adrenal problems and restored their function with these applications.

* Vitamin C is an important cofactor for both adrenal cortex and adrenal medulla - PubMed (nih.gov)
I would be interested in your information.
 

LINE

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I would be interested in your information.
This is a post I made on my blog which reflects my personal experience. The majority of the treatment came from Adelle Davis' book Lets Get Well (chapter on stress).

Basics are Vitamin C, Vitamins B2 and B6, Pantothenic Acid (Vitamin B5 higher doses). Adequate protein and fats which help produce the hormones. Magnesium which stops high adrenal function (calms the nervous system) and other electrolytes such as potassium and sodium.

I also used Adrenal Glandular which helped, however some report some issues with it. Adaptogens such as turmeric, ashwagandha, paprika etc. are always helpful. Stay away from stimulants such as some ginsengs, licorice etc.

Here is my post I made https://patrickrambling-pb.blogspot.com/2012/02/adrenal-fatigue.html If you have questions, let me know always ready to help.
 

Learner1

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@lenora I use 200mg of Source Naturals brand Huperzine A daily.
This is really just adrenal weakness or adrenal exhaustion. The adrenals will always become weakened through any form of stress which includes the obvious of emotional stress but biological stress is more apparent with ME. Immune activation is one of the big adrenal taxes as well as toxins.

The adrenals are the major participant in homeostasis which is the forces necessary to keep the body in balance. Assuming one has normal stressors then the adrenals can easily repair, however with continual unrelenting stress, then the adrenals become 'tired' and under-perform.

Orthostatic hypotension testing just indicates that the adrenals are tired. There are plenty of nutrients that can restore adrenal functioning including Vitamin C*. Studies I read show that low Vit C will cause the adrenals to hemorrhage. I have other studies of other nutrients that can help, let me know and I will list these out.
While it is a good point to look at adrenal function, unfortunately, this is not the answer for all of us. For many of us it's autoimmune, triggered by infections like EBV or toxic exposures.

My adrenals weren't functioning well to begin with, before my orthostatic intolerance. I read everything I could on "adrenal fatigue" and was using every strategy suggested and nothing helped until I went on replacement dose hydrocortisone in 2016.
Basics are Vitamin C, Vitamins B2 and B6, Pantothenic Acid (Vitamin B5 higher doses). Adequate protein and fats which help produce the hormones. Magnesium which stops high adrenal function (calms the nervous system) and other electrolytes such as potassium and sodium.

I also used Adrenal Glandular which helped, however some report some issues with it. Adaptogens such as turmeric, ashwagandha, paprika etc. are always helpful. Stay away from stimulants such as some ginsengs, licorice etc.
Prior to 2016 to this day, I've taken high doses of vitamin C, including IV vitamin C as well as every other nutrient you mention. I took Vital Nutrients Adrenal Support too.

None of this fixed my hyper POTS. I was tested and my doctors prescribed a beta blocker and pyridostigmine, then the neostigmine and Huperzine A. My specialists tested me and found I had positive adrenergic and muscarinic antibodies. Treatment with Rituximab greatly improved my POTS

In the meantime as we worked to beat back 5 viruses and 2 atypical pneumonias, and my immune system was supported by LDN and IVIG and I worked on mitochondrial repair, my adrenals slowly l began working better and I gradually tapered off the hydrocortisone.

So, while your message may be valid for a few, I am not convinced that autoimmunity and infections aren't driving POTS for the rest of us.
 

lenora

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Hi Learner1.....Thanks for the info. The only thing missing is when you take it. I'm an insomniac, so this is important to me. If you could reply with that info, I would be grateful. Thanks! Yours, Lenora.
 

LINE

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While it is a good point to look at adrenal function, unfortunately, this is not the answer for all of us. For many of us it's autoimmune, triggered by infections like EBV or toxic exposures.
Perhaps I did not explain more, you are correct which I mention in my link. As other readers should know, the immune and endocrine systems are closely associated, the adrenal stimulation is due to the stressors created by infection and toxins. Resolving the baseline problems should reset the adrenals, in the meantime, I like to keep the adrenals robust. Thank you for allowing me to clarify.
 

Learner1

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Perhaps I did not explain more, you are correct which I mention in my link. As other readers should know, the immune and endocrine systems are closely associated, the adrenal stimulation is due to the stressors created by infection and toxins. Resolving the baseline problems should reset the adrenals, in the meantime, I like to keep the adrenals robust. Thank you for allowing me to clarify.
Agreed. However, this process took me 4 years, as I solved the other problems first, them weaned off hydrocortisone.
 

lenora

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HI @ Learner1.....kindly look at my message above. I forgot to have it sent to you. Thanks. Yours, Lenora.
 

Learner1

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HI @ Learner1.....kindly look at my message above. I forgot to have it sent to you. Thanks. Yours, Lenora.
Hi Lenora, if you tag me, I can more easily be notified to help - use the @ symbol in front of another users name to tag them, ok?;) Or you can quote something I've said.

I think you were asking on timing of hydrocortisone. Some people need it upon waking, though for me, I made the most cortisol between 5 and 8 a.m. But not so much the rest of the day, so I found that taking it at around 8, 11, and 2pm in divided doses worked best, then as my need decreased, at around 10 and 2. If I went out at night and needed energy, I would take some around 4:30 or 5:00 p.m. to get me through the evening. If I forgot, the wooziness I started to feel as I started to crash reminded me that I needed my next dose.

If abnormal cortisol in the evening is a problem, there's a product called Seriphos, by Interplexis, If I remember correctly that is phosphatidylserine, and that is good for reregulating cortisol production at the wrong kind of day. When I was on that I took one gram about an hour before bedtime.

Please let me know if you have any other questions.
 

lenora

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Hi @Learner 1....No. I was wondering when you took the Huperzine. I simply forgot to add the ampersand to your address. Sorry for the additional problem. The question was: Do you take it in the a.m. or p.m. I have terrible insomnia. Yours, Lenora
 

perrier

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I take Huperzine A in the morning only.
Have you had any side effects from it? The literature on it indicates a long number. I am really interested, because many of the items suggested in the video just did not work for our family member. Thank you
 

SWAlexander

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@lenora I use 200mg of Source Naturals brand Huperzine A daily.
While it is a good point to look at adrenal function, unfortunately, this is not the answer for all of us. For many of us it's autoimmune, triggered by infections like EBV or toxic exposures.

My adrenals weren't functioning well to begin with, before my orthostatic intolerance. I read everything I could on "adrenal fatigue" and was using every strategy suggested and nothing helped until I went on replacement dose hydrocortisone in 2016.
Prior to 2016 to this day, I've taken high doses of vitamin C, including IV vitamin C as well as every other nutrient you mention. I took Vital Nutrients Adrenal Support too.

None of this fixed my hyper POTS. I was tested and my doctors prescribed a beta blocker and pyridostigmine, then the neostigmine and Huperzine A. My specialists tested me and found I had positive adrenergic and muscarinic antibodies. Treatment with Rituximab greatly improved my POTS

In the meantime as we worked to beat back 5 viruses and 2 atypical pneumonias, and my immune system was supported by LDN and IVIG and I worked on mitochondrial repair, my adrenals slowly l began working better and I gradually tapered off the hydrocortisone.

So, while your message may be valid for a few, I am not convinced that autoimmunity and infections aren't driving POTS for the rest of us.
Neither Vit C nor any other supplements have helped me for orthostatic intolerance, or very low energy levels. Having permanent low cortisol I`m bound to prednisone.
 
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lenora

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I had POTS (which wasn't recognized at the time) when I was young. My BP was super low and no one could believe it. Well, somehow it couldn't have been as bad as some of you endure and I just about managed to do as much as possible.

Enter menopause at age 42. Bear in mind that I've had symptoms of hormone shortages well into my 70's, but an odd thing happened. My low BP went in the other direction. Now it's super high and I take meds to keep it under control. I can't take hormones b/c of other causes, so menopause hasn't been a dream. For some, it's a nothing event....very interesting phenomenon. It would be nice if things had just evened out, but they didn't.

On the whole though, I'm functioning and really can't complain. It's been almost 2 years since my last stay in the hospital. So, hip, hip! I hope your BP will even out with menopause...oh, and I've heard this same story from others. Yours Lenora.
 
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