POTS relief - could it be?

[voner]

@DrDiana,

first off, thank you for interacting on this forum. Few practitioners to do that.

Do you have any experience or have you investigated the use of electronic vagal nerve stimulators? i'm especially interested in the Transcutaneous Vagus Nerve stimulator's that have been more recently developed, not ones that ones that require surgery to implant the device.

Also, how do you deal with the digestive tract irritation side effects of Mestinon?

 

[DrDiana]

@DrDiana,

first off, thank you for interacting on this forum. Few practitioners to do that.

Do you have any experience or have you investigated the use of electronic vagal nerve stimulators? i'm especially interested in the Transcutaneous Vagus Nerve stimulator's that have been more recently developed, not ones that ones that require surgery to implant the device.

Also, how do you deal with the digestive tract irritation side effects of Mestinon?

You're welcome, Voner!

YES! When I was first investigating vagus nerve issues, I had a conference with the Cerbomed folks themselves about this. At the time, we were considering vagus nerve compression at the site of the neck. We both agreed that if our nerves were compressed, this would not be effective (it stimulates the nerve north of the site of compression). When I realized that most of us suffered from low acetylcholine as the likely cause of vagus nerve problems, it made electronic stimulation unnecessary. Instead, we tried to make a formulation that would go into the system fast enough to stimulate the POSTGANGLIONIC portion of the vagus nerve. therefore it would work no matter what the cause of a defunct preganglionic vagus nerve. We were able to both boost acetylcholine and stimulate the (postganglionic) portion of the nerve. Bingo! That did it.

Mestinon -- honestly, we don't use Mestinon on this patient population (no AAG), but your doctors should have some advice IF you have AAG.

 

[Sushi]

Low acetylcholine or vagus nerve problems must be identified by presentation because there is no blood test for this.

I second the thanks at participating in this discussion--I hope it doesn't seem like jumping into a lion's den! We are all just looking for answers.

Here is my question: I wonder how you deal with patients who are parasympathetic dominant and thus may have overactive vagus nerves? For instance, this was my autonomic specialist's interpretation of my testing and I responded extremely well to Strattera--a norepinephrine re-uptake inhibitor.

 

[kangaSue]

In autoimmune autonomic gangliopathy doctors try to increase acetylcholine levels because patients do not have as many receptors. Mestinon inhibits the breakdown of acetylcholine, and benefits these patients for that reason. Parasym Plus increases acetylcholine both by preventing its breakdown, and by supplying the other components of acetylcholine that could be deficient for any reason. So it *may* help you.

Perhaps a more important question for your case is AAG your true diagnosis. Mayo Labs has a great set of blood work that can likely best evaluate you. Keep in mind that most patients with AAG do not have chronic fatigue. If you are suffering from chronic fatigue (and are also noticing some possible mast cell reactions as you mentioned), I'd wonder if you could have neuropathy for other reasons (not necessarily autoimmune). Knowing which was the case could dramatically alter your treatment.

@DrDiana, thank you very much for your response. You are correct, I do not have CFS, only fatigue related to poor calorie intake because of chronic G.I. systems dysfunction but as G.I. issues are common to CFS, this forum is a valuable resource for me in that regard.

I'm waiting on consults with a Neurologist and Immunologist so the only diagnosis I have so far for the autonomic abnormalities is Restricted Autonomic Neuropathy, that's on top of Small Bowel Pseudo-obstruction, Ischemic Gastroparesis from Chronic Mesenteric Ischemia and fluctuating hypomotility/hypermotility of the colon, consistent with AAG when you add in the sweat abnormalities and Orthostatic Hypotension and given that Sjogren's blood test was negative although I know this test is not 100% definitive.

As this affects the ability to work, those in the same boat have to use these forums do due diligence to determine if any particular supplements or the like warrants sacrificing something else in a limited budget to get the most bang for their buck.

 

[SpecialK82]

The problem is that not all of us have an underactive parasympathetic nervous system and an underactive vagus nerve. I had the opposite, so needed a very different type of treatment.
I also had significant OI but it wasn't from an overactive sympathetic system.

@Sushi , I'm sure you have already posted on this somewhere, and if so, could you point me to it but I'm very interested to know how you knew that you didn't have an overactive sympathetic system or an underactive parasympathetic system. Did you have testing that told you this?

If you wouldn't mind answering a couple questions about your symptoms:
Did you have insomnia?
Did you have gastroparesis?
Did you feel like your mind was racing all the time?

 

[Sushi]

I'm very interested to know how you knew that you didn't have an overactive sympathetic system or an underactive parasympathetic system. Did you have testing that told you this?

I learned this from really comprehensive tilt table testing with an autonomic specialist. There were about 8 different parts--each testing some function of the ANS.

If you wouldn't mind answering a couple questions about your symptoms:
Did you have insomnia?
Did you have gastroparesis?
Did you feel like your mind was racing all the time?

Yes, I had insomnia (it is resolving with treatment); no I didn't have gastroparesis, no, I didn't feel like my mind was racing. The "brain symptoms" I have had were cognitive.

 

[SpecialK82]

I learned this from really comprehensive tilt table testing with an autonomic specialist. There were about 8 different parts--each testing some function of the ANS.

@Sushi , I must apologize because I just responded to your prior post without reading through all of the new posts first and I see you do address my first question about testing to some degree there. Thank you for expounding on your testing here. I am floored that you had that type of detailed testing, I have never heard of it before. Can I ask where you had this done?

Do/Did you have POTS? Do you know the name of this test so that I could ask a doctor's office if they offer it?

 

[brenda]

@DrDiana

I wonder if you would mind telling me whether you have any knowledge of why l would blackout whilst vomitting? The vomitting has been due to mast cell activation due to poisoning from high histamine fish l believe on the last two occasions and l guessed it was a vagus problem. Previous to that it began after pesticide poisoning. Thanks for your posts.

 

[Sushi]

I am floored that you had that type of detailed testing, I have never heard of it before. Can I ask where you had this done?

There are very few autonomic specialists (good ones, anyway), but most of those few would do similar testing. The doctor I saw is no longer in practice--he has POTS himself and decided that a busy practice made it impossible for him to improve himself.

You might like to watch the YouTube video on POTS and Dysautonomia called Changes. My doctor is the one with the Southern accent. If you want to go into this further we should do so in another thread or privately, so as not to take this thread off topic.

Do/Did you have POTS? Do you know the name of this test so that I could ask a doctor's office if they offer it?

I didn't have POTS at the time of testing. I might have it now. There is no name for this test as each autonomic specialist designs his/her own version of the TTT. But, there are probably only a handful of places in the country that are competent to do this level of testing. So, unless you are extremely lucky and live close to one of these centers, you would have to travel and get on a wait list.

 

[kangaSue]

I learned this from really comprehensive tilt table testing with an autonomic specialist. There were about 8 different parts--each testing some function of the ANS.

@Sushi, I had an autonomic function test panel that did head-up tilt, QSART, TST, HDRB and Vasalva Manoeuvre, just interested to know what other tests did you have as part of your evaluation.

 

[SpecialK82]

@SpecialK82 I wanted to reply b/c I think my initial response was unclear the way I wrote it. I am going up to the Autonomic Disorders Clinic at Stanford and am not seeing a mainstream doctor in my city. It is the only clinic of it's kind on the west coast and I waited 5-6 months to get the appt and it is a seven hour drive for us each way. So I am making a similar trip to what you would be doing b/c I feel it is worth it.

What I was trying to express is that Stanford's Clinic involves seeing an autonomic neurologist and four hours of testing, blood tests, etc, and I know what all possible tests are- there is no secrecy. I will not be allowed to do all of the tests b/c of the medications that I am on so they will modify it to let me do whichever ones the doctor feels are appropriate.

The comparison to my hospitalization last year is that even when I was inpatient for a week for MCAS seeing various specialists, having tests, IV meds, food, etc, my portion after insurance was a fraction of $6600. So for an outpatient program run by two optometrists, I would be very cautious to spend that much money and want to know exactly what I would be getting.

Whether she takes an income from the supplements or not (which I suspect she does), it sounds like after all your testing is done, the treatment plan will be to take her supplements. Whereas if you go to a clinic like Stanford or Vanderbilt (as examples) they are not promoting their own supplements and the treatment plan will vary for each individual depending what they find. There is no guarantee that Stanford can help me but I am confident that they will do their best.

Thank you @Gingergrrl for your further explanation. That is so great that you got in at Stanford. Could you tell us the tests that you are taking? I'm just really curious what all they can test, and yep, totally understand about a secrecy thing.

I had an appt last year with the Cleveland Clinic Autonomic Center but I was too sick to travel and had to cancel it. I've heard so much bad about Cleveland Clinic with CFS that I'm a bit skittish to re-schedule. For example, I just happened to catch a video on-line today with a top autonomic doctor discussing POTS and at the end of it he discusses how important it is to exercise because of the laxity in the blood vessels in the legs and abdomen. So when I would say that I couldn't exercise due to the CFS, he would totally not understand even with explanation. But you bring up good points and I do still wonder if I can get something out of going a mainstream clinic.....I hope so.

Good Luck to you and your travels!

 

[jimells]

I wonder if you would mind telling me whether you have any knowledge of why l would blackout whilst vomitting?

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

A vagal episode or vasovagal response or vasovagal attack[1] (also called neurocardiogenic syncope) is a malaise mediated by the vagus nerve. When it leads to fainting, also known as a "syncope", it is called a vasovagal syncope, which is the most common type of fainting.

Episodes of vasovagal response are typically recurrent and usually occur when the predisposed person is exposed to a specific trigger. Prior to losing consciousness, the individual frequently experiences early signs or symptoms such as lightheadedness, nausea,..[and many more symptoms]

Regardless of the trigger, the mechanism of syncope is similar in the various vasovagal syncope syndromes. In it, the nucleus tractus solitarii of the brainstem is activated directly or indirectly by the triggering stimulus, resulting in simultaneous enhancement of parasympathetic nervous system (vagal) tone and withdrawal of sympathetic nervous system tone.

 

[Sushi]

I had an autonomic function test panel that did head-up tilt, QSART, TST, HDRB and Vasalva Manoeuvre, just interested to know what other tests did you have as part of your evaluation.

Without hunting down my test, from the top of my head (a very unreliable place!), I also did a breathing test and a weird one where they recorded me reading a paragraph and then played it back. While they were playing it back I had to read it again--out of sync with the recording. That can send your ANS into a tizzy.

I also had a short head up tilt, and then later a long one. I stopped the long one (doc said to stop if if I felt bad) when my BP was 88 over 80. Then they continued to monitor while I was recovering. I had and electrocardiogram hooked up for the entirety.

 

[Gingergrrl]

Thank you @Gingergrrl for your further explanation. That is so great that you got in at Stanford. Could you tell us the tests that you are taking? I'm just really curious what all they can test, and yep, totally understand about a secrecy thing.

I had an appt last year with the Cleveland Clinic Autonomic Center but I was too sick to travel and had to cancel it. I've heard so much bad about Cleveland Clinic with CFS that I'm a bit skittish to re-schedule. For example, I just happened to catch a video on-line today with a top autonomic doctor discussing POTS and at the end of it he discusses how important it is to exercise because of the laxity in the blood vessels in the legs and abdomen. So when I would say that I couldn't exercise due to the CFS, he would totally not understand even with explanation. But you bring up good points and I do still wonder if I can get something out of going a mainstream clinic.....I hope so.

Good Luck to you and your travels!

@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

Because of the meds that I am on, I already know that I cannot do all of the tests, so I cannot predict which ones I will have, but it you read the website, it tells the full panel of tests that are offered. I know there are blood tests, too, but that will be determined after my exam and appt with the neurologist.

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.

 

[jimells]

I also had a short head up tilt, and then later a long one. I stopped the long one (doc said to stop if if I felt bad) when my BP was 88 over 80.

Yikes! I had no idea one's pulse pressure could be so low and the person would still be conscious. Scary stuff.

 

[IreneF]

Thank you @Gingergrrl for your further explanation. That is so great that you got in at Stanford. Could you tell us the tests that you are taking? I'm just really curious what all they can test, and yep, totally understand about a secrecy thing.

I had an appt last year with the Cleveland Clinic Autonomic Center but I was too sick to travel and had to cancel it. I've heard so much bad about Cleveland Clinic with CFS that I'm a bit skittish to re-schedule. For example, I just happened to catch a video on-line today with a top autonomic doctor discussing POTS and at the end of it he discusses how important it is to exercise because of the laxity in the blood vessels in the legs and abdomen. So when I would say that I couldn't exercise due to the CFS, he would totally not understand even with explanation. But you bring up good points and I do still wonder if I can get something out of going a mainstream clinic.....I hope so.

Good Luck to you and your travels!

Interesting. I had my worst autonomic symptoms when I was still fit and exercising.

 

[IreneF]

Yikes! I had no idea one's pulse pressure could be so low and the person would still be conscious. Scary stuff.

My last BP was 92/60. Lots of us around.

 

[Sushi]

I had no idea one's pulse pressure could be so low and the person would still be conscious. Scary stuff.

I've tried to tell other docs (before various procedures) that I need IV saline before because I could get that crazy pulse pressure, but it is hard to get them to believe that those numbers are possible--even when you show them the test results from a hospital autonomic clinic.

 

[jimells]

My last BP was 92/60. Lots of us around.

I meant the difference between the two numbers. "Normal" is around 40, as in 120 minus 80. Thirty-two is good. Eight is downright scary.

 

[kangaSue]

@DrDiana, The consensus among most websites is that if you have low acetylcholine levels, you will also have brain fog or cognitive impairment issues. In your experience, is that the case with all clients that you see or are there exceptions to this.