POTS relief - could it be?

[Gingergrrl]

This is a question for everyone, not just Dr. Diana, but I have had horrific, toxic reactions including respiratory depression to medications that alter acetylcholine in either direction (both Benadryl and Mestinon for example) and I seem to have a super tiny window for anything cholinergic or anti-cholinergic.

I cannot envision any scenario in which a med that consistently raises acetylcholine would not send me to the ER with a dangerous reaction. Are there other people with this issue or am I the only one?

 

[roller]

@Gingergrrl
from experience and reading on clostridium ...

clostridium bacteria block acetylcholine RELEASE (particularly in the brain).

so, choline may cumulate in the body i understand, but remain unused.
and consequently the whole acetylcholine processing may be disturbed.
sorry, im only able to scratch on the surface of things, unfortunately.

i havent found a drug that would force acetylcholine release.

but im wondering, if this could cause the "magic" reversal in the brain, that seems possible.
someone on here recently confirmed such a reversal, too, i think he took adderall.

 

[kangaSue]

Low acetylcholine or vagus nerve problems must be identified by presentation because there is no blood test for this. If a patient has numerous symptoms/signs of low acetylcholine and responds to treatment, is this sufficient for the patient? I'd say 'yes'...

@DrDiana, Just reading back through this post http://forums.phoenixrising.me/inde...acetylcholine-toxicity-the-cause-of-cfs.9757/ richvank said there was a test to measure acetylcholine;

[It is possible to measure acetylcholine in the platelets. Health Diagnostics and Research Institute (and its parent lab, the European Laboratory of Nutrients there in the Netherlands) does offer this test.]

 

[brenda]

Oh, this sounds awful, not to mention dangerous. I had something similar a few months ago. I was drinking my morning glass of psylium husks and water, maybe a little too fast. I could feel it hit the bottom of my stomach, with a "thud", then a moment later there was a sharp pain just below where the lump of stuff hit bottom, then I started to black out.

Since I have POTS I was able to recognize that if I did not lay down immediately I would fall down, and I made it to the couch in time, and felt awful the rest of the day. This description of Vasovagal syncope seems to fit what happened to me:

https://en.wikipedia.org/wiki/Vasovagal_response

Yes I remember you saying. It is pretty scary as I live alone and rarely have a visitor so I have a care line installed and will ring as soon as I think that I will vomit again as last time I suspect I had a seizure as well as my tongue was bitten to bits and it took hours for me to know where I was after I came round.

I also lay down on the bathroom floor with a bucket in my hand thinking that i would not pass out but I still did

The first time it happened I had been poisoned with pesticide (but did not recognise it is as such) and my GP just dismissed it :O Thankfully I did not vomit again for years after that initial period but last year I did due to the fish. No more tinned fish for me lol

 

[DrDiana]

Hi Kanga, I was an exception to this. In the lecture, I explain how I didn't think I needed any more help with acetylcholine (I wasn't fatigued, nor did I have cognition problems). Yet, I developed pancreatitis... (reversible within days). So I wasn't able to judge my deficiency based on symptoms of brain fog...

 

[xks201]

I can barely tolerate any acetylcholinesterase inhibitor like aricept or huperzine. Pesticides are known to hyperactivate acetylcholine activity. I think that you are onto something here but I have almost seen acetylcholine activity be hyperactive in myself. It looks like you might be tracing some key biomarkers. I'd steer clear of leaning towards everyone having insufficient acetylcholine because acetylcholine increasing pesticides will produce the same picture as CFS. I think that you can't discount genetics. We have a ton of people with CFS with genetic metabolic abnormalities that very easily could lead to this picture of neurotransmitter malfunction. I'm a math major and have studied my share of organic chemistry in school and I don't think this problem is really that complex to require organic chemistry knowledge but if it is I would love to know where I could read or learn more about how you used organic chemistry to assist you in this. I have no idea what exactly you are claiming because you didn't entirely state it in the videos above but nonetheless I wanted to thank you for trying to help people and do some research.

 

[SpecialK82]

@SpecialK82 Here is the link to the program that I will be going to next week at Stanford: https://stanfordhealthcare.org/medical-clinics/autonomic-disorders-program.html

I have no idea re: Cleveland Clinic and cannot comment on them! If you want to talk more about Stanford, feel free to send me a PM so I don't take this thread off track either.

Thanks @Gingergrrl , I have never seen any tests written out like this before, it sounds outstanding! Lucky you that are are able to go there, I'm sure that you will feel that it is worth your travel energy. Very, very nice.

 

[Xander5]

Hi, I just made my own thread before I was alerted by a member of the forum about this one. Personally I am very sensitive to Parasym Plus, and it has actually caused me to have my worst crash ever. I would advise to be very careful if you do try it, and to start at a very low dose such as half a pill and work your way up.

While it did help with my flushing that I assume is a result of Mcas, it caused me to be extremely lethargic as well as nauseous, so I stopped supplementation. As many have attested to on this thread it seems that lots of us are very sensitive to anything that disturbs neurotransmitters. Honestly I am still wiped out and I feel as if I just keep on getting worse.

Either way, while I think that vagus nerve function definitely has something to do with my particular case of ME, supplementing acetylcholine did much more harm than good in the long run and has set me back for the last week and a half.

 

[CantThink]

Thank you for the review @Xander5 it is helpful to have feedback from someone with M.E. who has actually taken it.

 

[SpecialK82]

Thanks @Xander5 for telling us about your experience. Sorry to hear that it didn't help. I read also that using a device such as the Alpha Stim, which stimulates the vagus nerve when attached to the earlobes, has caused headaches and nausea. It is then recommended (by some users) to back off the dosage until side effects aren't felt.

I wonder if @DrDiana would like to weigh in on this? Dr. Diana, heartfelt thank you for creating a richer thread here with your knowledge and expertise. Truly appreciate it!

 

[adreno]

This is a question for everyone, not just Dr. Diana, but I have had horrific, toxic reactions including respiratory depression to medications that alter acetylcholine in either direction (both Benadryl and Mestinon for example) and I seem to have a super tiny window for anything cholinergic or anti-cholinergic.

I cannot envision any scenario in which a med that consistently raises acetylcholine would not send me to the ER with a dangerous reaction. Are there other people with this issue or am I the only one?

I am a bit like you. I have found that my symptoms are improved with mild acetylcholine boosters, but anything heavy and I get worse. Also, like you I don't tolerate acetylcholine inhibitors.

I have tried several of the ingredients in the supplement Dr Diana markets, and it is way too strong for me. I doubt many PWME can tolerate it.

 

[Lolinda]

@DrDiana, Just reading back through this post http://forums.phoenixrising.me/inde...acetylcholine-toxicity-the-cause-of-cfs.9757/ richvank said there was a test to measure acetylcholine;

[It is possible to measure acetylcholine in the platelets. Health Diagnostics and Research Institute (and its parent lab, the European Laboratory of Nutrients there in the Netherlands) does offer this test.]

Hi @kangaSue I just asked myself the very same question! So many times in the course of my illness doctors were wrong in whatever they thought based on symptoms, equally many times I was wrong It was proper diagnosis what preceded improvement. I am really interested to find out.

But just one comment about the ELN. this is a bogus lab. I give proof of this tough claim:
just look on their webpages. they offer nitric oxide testing. I dont know if they still have it on, but a year ago they had it and certainly, I wanted to get tested, because vasodilators are a reason for POTS. knowing from research that NO catabolizes immediately and is damn difficult to measure, I asked them how they do it. the answer was literally: "we test it directly in the blood". well... they can do that if the blood tube is sent to belgium at the speed of light!
Even advanced research centers dont do direct testing of NO, even they have to do indirect tests of NOx metabolites, and even in that case you need to freeze at -80°C, and even when doing so, its not too stable for too long...
but: ELN can do it directly in the blood. not even any freezing necessary! yesssssss

after this story I dont trust them a thing any more. I hope they removed it from the test palette, but I dont even care to check now.

back to the topic: if nobody replies, I volonteer to dig out stuff about acetylcholine measurements, if there is any. I still have my university access to research papers fulltext

 

[Lolinda]

Question to all: Did anyone with POTS get tested for:

Vasodilators other than histamine:
excessive circulating vasodilators are a reason for POTS. when standing up, leg vessels have to vasoconstrict, which is more difficult if they just dilate..

Diminished vasoconstrictive reaction of blood vessels to sympathetic vasoconstriction:
a reason for high-norepinephrine (=noradrenaline) POTS is that the sympathetic signal for "blood vessels in the legs, please constrict right now" isnt reacted to by the blood vessls. so then what happens: the command to constrict is shouted louder and louder. like the proverbial foreigner trying to make himself understood ...

The issue with measurement is that both of these conditions result in more and more sympathetic activation / sympathetic vasoconstrictory effort, which is well measurable via hugely increasing norepinephrine levels when patient tries to stand. but there we are just generally with all the category of high NE-POTS. so how do we differentiate between the various pathologies within this category? the above mentioned two issues would have quite similar features the so much mentioned vagus nerve anomalities / acetylcholine lack. even the impairment of digestion would be the same , because with all that symp activation nobody can digest.
- but the pathomechanism and treatment in all these cases is totally different!! --> testing testing testing!

I would be very curious.to learn more! Equally, I can contribute some research papers on these & pots. We could open a new thread (or stay here) if there is interest.

Btw I did not see these explicitly covered by @DrDiana
http://www.potscare.com/research/
– intracranial pressure problems
– vagus nerve anomalies
– the activation of histamine- producing cells (not restricted to mast cell activation or MCAS)
– vascular anomalies
– joint hypermobility or Ehlers Danlos syndrome in conjunction with the above

And to avoid any misunderstandings, this line above "did not see these explicitly covered" is not the slightest criticism. It is meant 1. as a question as the above list from Dianas website was not said to be complete but examples; and 2. if the answer is no, then as a small addition to our shared efforts to search for possible causes. I think that just because Diana established new methods of POTS treatment, it would not be a correct thing to expect her clinic to immediately cover 100% of all, frequent or rare, measurable or unmeasurable causes of POTS. We should be happy with what she can give. Having said that, it would be great to know where the current limits of the clinic's offer are, so we understand where it is worth to search further. thanks in advance!

 

[kangaSue]

after this story I dont trust them a thing any more. I hope they removed it from the test palette, but I dont even care to check now.

Hard to know who to trust when there is big money to be made from the chronically ill population. Even reputable outfits can offer bullshit tests.

I would be very curious.to learn more! Equally, I can contribute some research papers on these & pots. We could open a new thread (or stay here) if there is interest.

You've probably come across this but there is a case for some with POTS to be from a possible autoimmune cause.
http://jaha.ahajournals.org/content/3/1/e000755.full

 

[Lolinda]

Hard to know who to trust when there is big money to be made from the chronically ill population. Even reputable outfits can offer bullshit tests.

So true...testing is all about trust: you never know if a small private lab just writes some numbers into a result sheet ... and even the big ones can do errors of handling that completely ruin results...

Now, this morning I took a second to double check: they still have that NO test on their order form.
http://www.europeanlaboratory.nl/documents/en/orderform_en.pdf
I attached the current state of the order form to this email in case that they change it.
And you can see that it is a simple blood tube that goes to their lab. This is in itself full proof of either blunt incompetence or tentative fooling of customers, even if they would not "test for NO directly" as they claim but test metabolites NOx (NO2 and NO3) which is practically the only possibility when sending samples. You can check my statements in just any publication involving NO: they either process samples immediately or freeze at -80°C

 

[Lolinda]

You've probably come across this but there is a case for some with POTS to be from a possible autoimmune cause.
http://jaha.ahajournals.org/content/3/1/e000755.full

thank you! no, I didnt have this publication so far! thats exactly what I am looking for! great stuff. This is sthg I can present to doctors. actually, I just began looking into this stuff so any further paper you have will be new to me

 

[kangaSue]

o true...testing is all about trust: you never know if a small private lab just writes some numbers into a result sheet ... and even the big ones can do errors of handling that completely ruin results...

Now, this morning I took a second to double check: they still have that NO test on their order form.
http://www.europeanlaboratory.nl/documents/en/orderform_en.pdf
I attached the current state of the order form to this email in case that they change it.
And you can see that it is a simple blood tube that goes to their lab. This is in itself full proof of either blunt incompetence or tentative fooling of customers, even if they would not "test for NO directly" as they claim but test metabolites NOx (NO2 and NO3) which is practically the only possibility when sendöng samples. You can check my statements in just any publication involving NO.

I don't have any particular training or qualification to understand the ins and outs of what's involved in various types of testing, I'll happily settle for taking your word for it.

 

[kangaSue]

thank you! no, I didnt have this publication so far! thats exactly what I am looking for! great stuff. This is sthg I can present to doctors. actually, I just began looking into this stuff so anything you have will be new to me

The topic got a good run in this discussion http://forums.phoenixrising.me/inde...inergic-receptors-in-patients-with-cfs.40109/

I've been down the path of being tested for antibodies to see if I could make a case for my GI dysfunction being autoimmune related, Autoimmune Gastrointestinal Dysmotility or even Autoimmune Autonomic Ganglionopathy when I found I had sudomotor and cardiovagal dysfunction along with all the GI stuff. POTS cropped up a lot in some papers into this too.

 

[Lolinda]

I've been down the path of being tested for antibodies

Did you get tested also for adrenergic autoantibodies? I have difficulties finding a lab for that.

 

[kangaSue]

Did you get tested also for adrenergic autoantibodies? I have difficulties finding a lab for that.

No, I didn't get tested for adrenergic autoantibodies. I spoke to an Immunologist about it but he said there wasn't a commercial test available (in Australia) for these and, as far as he was aware, it's only done in a clinical research setting.

The other study on the subject http://www.ncbi.nlm.nih.gov/pubmed/22130180 also found antibodies to M2/M3 muscarinic acetylcholine receptors. It's interesting that M1/M3 muscarinic acetylcholine receptors Ab are found in Sjogren's Syndrome which is thought to contribute to impairment of esophageal motor function, microvascular responses to cholinergic stimulation and variable heart rate.