Good News! I'd Say 80% Improvement

[issie]

THIS IS AN EDIT: This did not last for me. Some of it upped my sympathetic nervous system too much and caused really bad side effects. Not sure what went wrong - since it worked so well for 10 days.

I believe that Butchers works similar to midodrine and with me it caused crying and paranoia. It upped my sympathetic nervous system and was not a good fit.

I don't have it all figured out what happened or what went wrong. I was a happy, near normal, very functional person for 10 glorious days and then things started to go terribly wrong. This illness is so complex and complicated. About when we think we have things figured out for ourselves - something backfires.

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Okay, It has worked for over 10 days now. I don't have it totally figured out (ratios/amounts) But, I'd say my improvement is 80%. I've been experimenting with some herbals and supplements that help in neuro and mito function and vein dilation and constriction.

First off I need to say what my known presentations are:

I'm hyperPOTS - with higher noriepi levels over 600 with high bp's that vary and are liable
EDS
Probable MCAD
Possible Kounis Syndrome
Not sure if I'm low flow or normal flow but have pooling in limbs and ab
Low renin and aldosterone levels
Normal QSART test
Probable NET dysfunction

As most of you know, I'm into alternative things but I have tried nearly every kind of medicine available and known to help POTS. The only prescription meds that have been of benefit to me are Tramadol - has proven to lower my high bp's. Also, Bentyl - which is a muscle relaxer. Both of these are given to help with pain associated with EDS and they help my POTS. I only take them at night and cycle off them so that they will continue to work.

But, recently I've added a few new things to my normal supplements that I take. I'm going to list what they are and what's in them. Keep in mind that this WILL NOT work for everyone. I don't totally have the amounts of each thing figured out. There have been a few side effects - but, the benefits have far outweighed the negatives.

PQQ - helps in neuro and mito transmission (only available through Life Extension)

B1 (benfotiamine) - I'm using Life Extension 250 mg. deficiencies can cause - neuropathies, gait problems, weakness in muscles There is also a connection between this and dysfunction in GABA receptors (possible glutamate issues)

Balanced B-100 complex, timed release - I'm using Nature Made - It is necessary to use a complete complex if you add one B vitamin in order not to imbalance the other B's

Optimized Saffron with satiereal - I'm using Life Extension - mild SSRI effects and helps with sexual function and general sense of well being

Magnesium 125mg. - I'm using Dyno-Mins by Nature's Plus used at night helps to relax body and helps sleep (many other things too)

Grape Seed Complex by Spring Valley This has:
50 mg grape seed extract - helps with high blood pressure and venous insufficiency
130mg blend of bioflavonoids, green tea and bilberry This helps with vein elasticity and overall health. Bilberry helps with vision and vein health.

Vinpocetine by Solaray. This has:
Vinpocetine 5mg - helps with brain fog, memory and down regulates NE
Gotu Kola 100mg - helps with vein function and flow, helps with hypertension and inflammation and helps with collagen formation
Butcher's Broom 100 mg - helps with vein function and flow - vasoconstrictor
Rosemary 100 mg - anti-inflammatory and helps in brain function and prevents neurodegenerative diseases
Ginger 50mg- helps with gastroparesis and nausea

That's the new things I've added. I'd say I'm 80% improved. I can stand longer, feel better and yesterday went out for a bike ride (I haven't exercised in a long time.) When I got back checked my bp and hr and they were both pretty normal. I felt great and the ride was late in the day around 5:30 and I still have energy up until around 9:00 at night. I have a sense of euphoria and well being. My legs feel better and don't hurt. It feels like the blood isn't pooling as bad. My brain fog is much improved. With the addition of magnesium and grape seed oil complex at night - I'm sleeping better and going into the sleep state of starting to dream again. I haven't done that in forever.

I don't have the amounts worked out yet. I am having almost too much energy and a bit of jitteriness on the initial taking of the supplements - a little blurred vision and tiny bit of nausea. But, these are things that I think may improve and go away with time. But, if they don't I can still deal with it for the improvements that I'm getting.

I also tried taking one thing and not the other and combining them differently. It will take all of them for me to get the benefit. I couldn't leave off anything. I have cut the PQQ in half because for me it was too energizing. I take all of this except the magnesium in the am. And at night I take only the magnesium and a grape seed oil complex. (I take other things, but these are the new things that I think are making the difference.)

I'm so excited. I don't know if it will help others or not. But, I think I've got it figured out for me. Just wanted to share my good news and what I'm doing. Hope it works for some of you too.

Issie

[kluesyk]

Yea!!! I am so excited for you that you are feeling better! I am printing off this as I have a good deal of the same issues as you. It would be great to exercise again!

[ramakentesh]

fantastic and well done on posting a positive story. I'd love an 80% improvement!

Many of those ingredients do help with venous return, venous health and capillory leakage so I guess these is definately logic in there. Gotu Kola is an interesting herb - improves venous return and also acts as an adaptogen, butchers broom - well ive posted on that before. I think it works as a venoconstrictor of both alpha 1 and 2 receptors and also stops capillory leakage, Periwinkle extract is also interesting - I remember someone suggesting that gingko worked in a similar way to improve cerebral blood flow.

thanks of posting this.

[ramakentesh]

Also grapeseed extract among other things does decrease capillory permiability and may increase venous return,.

[jangle]

That's excellent, Issie. I'll have to read over these again and see if I can get these working for me as well. Thanks for the information.

[sue1234]

Glad you found something that works for you!

[ramakentesh]

And good to see there is no medical advice being provided. I have only used one of those contents before - butchers broom - which did help me quite a lot but tolerance was an issue by itself.

[issie]

Thanks, all.

Yeah Rama, I tried breaking each thing out seperately and take one thing at a time. It let me know how each thing reacted in my body - but, allot of the time the results weren't good. It was the combination of things that gave me the results. Lots of trial and error. Still needs a little work - but, so far - very excited and the euphoria feelings that I have - just a sense of well being. AMAZING!!!

Issie

[ramakentesh]

Ill break it up easier for you - these are the contents of what you are currently doing:

PQQ - helps in neuro and mitro transmission (only available through Life Extension)

B1 (benfotiamine) - I'm using Life Extension 250 mg. deficiencies can cause - neuropathies, gait problems, weakness in muscles There is also a connection between this and dysfunction in GABA receptors (possible glutamate issues)

Balanced B-100 complex, timed release - I'm using Nature Made - It is necessary to use a complete complex if you add one B vitamin in order not to imbalance the other B's

Optimized Saffron with satiereal - I'm using Life Extension - mild SSRI effects and helps with sexual function and general sense of well being

Magnesium 125mg. - I'm using Dyno-Mins by Nature's Plus used at night helps to relax body and helps sleep (many other things too)

Grape Seed Complex by Spring Valley This has:

50 mg grape seed extract - helps with high blood pressure and venous insufficiency

130mg blend of bioflavonoids, green tea and bilberry This helps with vein elasticity and overall health. Bilberry helps with vision and vein health.

Vinpocetine by Solaray. This has:

Vinpocetine 5mg - helps with brain fog, memory and down regulates NE

Gotu Kola 100mg - helps with vein function and flow, helps with hypertension and inflammation and helps with collagen formation

Butcher's Broom 100 mg - helps with vein function and flow - vasoconstrictor

Rosemary 100 mg - anti-inflammatory and helps in brain function and prevents neurodegenerative diseases

Ginger 50mg- helps with gastroparesis and nausea

[ramakentesh]

I myself have researched Gotu kola and butchers before and spoken to my doctor about both and he seemed very interested, so well done.

[roxie]

Great! I'm taking magnesium & a b-complex. I think they are helpful! I'll talk to my nutrionist about the others.

You said the PPQ helps with mitro transmission. Is that different than mito?

[ramakentesh]

Same thing - its a type of Co enzyme Q10 I think? Correct me if im wrong.

Thomas found b1 supplementation very helpful for her POTS.

[issie]

Great! I'm taking magnesium & a b-complex. I think they are helpful! I'll talk to my nutrionist about the others.

You said the PPQ helps with mitro transmission. Is that different than mito?

Typo - it's mitochondrial transmission. Thanks, I fixed it.

[Chaos]

This is super terrific news Issie!!! I'm so excited for you. Hope you continue to have such positive effects from this. I know you've put a lot of time and effort into researching and trialing all this. Really appreciate you posting this info.

[juliegee]

Yay!!!

VERY Brave of you to try combos as opposed to one thing at a time. Regardless, can't mess with success- congrats!!! Hope it's sustained. Keep us posted.

[issie]

Hey, I'm not checking out. I've got another 20% to figure out. LOL!

Issie

[ramakentesh]

I could do with 80% right about now!! LOL.

[issie]

I could do with 80% right about now!! LOL.

I wish I could share it with you and others.

Issie

[issie]

Same thing - its a type of Co enzyme Q10 I think? Correct me if im wrong.

Thomas found b1 supplementation very helpful for her POTS.

Actually, I think they believe it's more like a B vitamin. But, it works on the mitochonrial transmissions similiar to CQ10. It also works on neuro transmissions. I'll see if I can post the article from Life Extension on it.

[ramakentesh]

Im just glad youve found something that helps YOU.

[Katybug]

This is terrific! I amso glad to hear you are feeling s much better. I know you weren't the best recently so this really puts a smile on my face for you! Keep us posted on the sstained results.

[ramakentesh]

its interesting you know. Pots has always had lack of venous return and venous abnormalities suggested as the likely causal factor in many yet, most of the remedies used to combat this are pure alpha agonists which constrict both arteries and veins. Selective venous constrictors to my mind make more sense and that is why i wonder about herbs used for venous insufficiency.

[issie]

its interesting you know. Pots has always had lack of venous return and venous abnormalities suggested as the likely causal factor in many yet, most of the remedies used to combat this are pure alpha agonists which constrict both arteries and veins. Selective venous constrictors to my mind make more sense and that is why i wonder about herbs used for venous insufficiency.

I think there is something to this. Some of these herbs constrict but others vasodilate. I've always felt that I was overly constricted and that was causing some of my issues. If they work on different areas and the combination is what makes them work - well, can't argue with that. Maybe, we need both constriction and vasodilation. I'm still tweaking this. Hope to get it just right. But, so far so good.

[ramakentesh]

I wonder whether its cerebral constriction or carotid constriction with vasodilation elsewhere. Someone once told me that in NET deficiency you have low central activity, but increased peripheral vasoconstriction and the veno constriction stunts venous return.

[issie]

Interesting. I'm sure there is an NET function issue with me. Too many things point to that. Tramadol has been my best RX - and that works very much so on NET function. I think with increasing peripheral dilation it helps to get the blood to your brain more - for sure. It's like my whole body feels like the blood is flowing. That's part of the jitterness I feel. You used to could NOT find my veins on my arm to see what my pulse was. Now, it is very easy to pick it up. Even nurses would look at me and say - well, you must be dead - no pulse. Not any more.