Sylvie33

If you do have a mast cell disorder (and I am currently on the elimination diet to see...for diagnosis is tricky) pork emits more histamine than beef or chicken, say. More importantly, any food that is not absolutely fresh, and/or kept as leftovers ...even cooked or sitting refrigerated, (especially meat and fish)....will have histamine levels rise expodentially the longer it sits. Even if you don't have MCAS, the rise in histamine in leftover meat might trigger an allergic response....especially in warm weather, when food degades more quickly. Also, you might try fresh garlic. Try using very fresh meat and freezing leftovers. Defrost in the microwave rather than letting it sit. Garlic is generally not a trigger, but might be for you....especially in a preserved form. By the way, I'm eating really well (and actually gaining weight on this diet!)

A concern about Mestinon is that some people do not have the gene to metabolize it and it then causes acute neurological symptoms.... including peripheral neuropathy. All American service people serving in the Middle East were given this drug prophylactically to guard against nerve damage from toxins. All 100,000+ victims of Gulf War Disease were found to lack the gene, where no veterans with this gene had GWD! Took decades of research with a concerted infusion of funds to determine this. So, be cautious. Also think about what a similar effort might do for the understanding and treatment of dysautonomia.

I have both autonomic and sensory small fiber neuropathy (SFN).. So I have POTS and other forms of autonomic dysfunction...as well as tingling, pain, and other SFN sensory symptoms. Your symptoms echo mine at the time of my acute onset 15 months ago. A nerve conduction test (which I found painful, and I'm pretty stoic) showed nothing, for it is not an appropriate test for SFN (it only tests large fiber function). The test needed to determine SFN is a skin biopsy.....I had one from two sites...ankle and thigh...so my diagnosis is polyneuropathy. This test is a piece of cake It's getting to an underlying cause that is difficult for me. My doc thinks it's autoimmune mediated. I've tested negative for about 15 things although he says there are over 100 other AI disorders for which there are no tests. By the way, my dysautonomia is much improved! My sensory neuropathy, not so much...but it's tolerable. You might wish to do some research about Mast Cell Activation Disorder, which can cause or accompany (and worsen) your symptoms...including SNF. Diagnosis is difficult, so I just went on a very strict low histamine diet three weeks ago...I already see improvement..... particularly with my gut, energy levels, and almost complete resolution of constant eye burning and rhinitus. It's a challenge...but doable. I'm actually enjoying learning new recipes, and I'm hooked on chia seeds! We'll see what happens with my SNF down the line. Best, Sylvie

I would first suggest you get your potassium level checked. Mine was low, and I was prescribed potassium. My level is fine now, and I've stopped taking them. If your levels are good, why worry?

Just be careful with B6....it can cause peripheral neuropathy.

I sent you some info via private message. Best, S

I didn't know when I posted last December that prolonged bed rest and deconditioning can cause POTS and other forms of OI....this is a big reason for the overlap. My illness began with dysautonomia, but overcoming my deconditioning now is a big challenge....and I've been working with a trainer for six months. Yet I am up and about again...so it has been very beneficial (if arduous...and she is very sensitively pacing with me).

One easy thing that helps me tremendously is to drink 3-4 liters a day of water with electrolytes. My favorite additive is the product Nuun, but there are threads here describing what people do. The best advice I can give echoes that above: try to find doctor versed in POTS. Sylvie

Remeron (an atypical antidepressants) has been highly effective at a very low dose for me: 7.5 mg taken 2X night (I will wake up at least once). Apparently it works better for insomnia at a low dose. However, I gained 12 lbs. In one month! It makes me ravenous.. It also apparently slows metabolism...for I've controlled my eating and have not lost a ounce in the past two months. I meet with my doc this week to discuss low-dose trazadone (an old-school SSRI) as a substitute.

Dancer...isn't the ACTH test for low cortisol (Addisons?)...I'm wondering about testing for high cortisol (Cushing's). Just wondering if anyone here was tested and treated for that. Thanks.. S

I have such surges each morning... beginning at dawn. I'm guessing it's tied to high levels of cortisol. Has anyone been tested and treated for this? Thanks-- S

First, listen to Yogini! Take it seriously. It's best to be checked to make sure there is nothing cardiac to be concerned about. That being said, my severe chest pain was the first indication dysautonomia was affecting my digestive tract. It was GERD, confirmed by testing and an endoscopy. On the bright side, it's calmed down considerably since it's onset a year ago (no pain at all) and now I just take a PPI (nexium) every few days.

Dear Honey Bean, Welcome. Yes, you are in a different world now, but we all share it here! I think the most important piece of advice I can give you is to know you have a new role in life -- as a medical researcher. We have a disorder that is not even well-known or dealt with among neurologists, so it is really important to gather and attempt to understand as much information as you can. It is a smart move to first go to this site. There is great information, including a physician's list, here. So again, welcome, and I hope you find the help and information you need soon! --Sylvie

I'm just a sucker....I love Nuun. It would be far cheaper to use a powder, but I'm hooked on the taste, fizziness, and color. It costs @$22 for 60 tabs...worth @22 cents. I order thru Amazon. Says right on the box it enhances hydration...(that's it's value), but it gets me to drink @ 4 liters/day, which has really improved my symptoms. I use I tab per liter (1/2 suggested "dose"). Taste is subtly sweet, unnatural, but nice. Colors do not correspond...but all additives are natural. 7-8 calories, no sugar. You can carry tabs around to add to water anywhere. I sound like a commercial...sorry, I just discovered it. S

Dear HFTC, I wish I could be more helpful -- but you're so welcome! --S

Dear folks, I was actually looking up something else and came upon this excellent description of the inter-relationship of GI issues, MCAD and dysautonomia: https://thedysautonomiaproject.org/gi-symptoms-mast-cell-activation-mca-disorders-and-dysautonomia-is-there-a-link/ For starters, it points out there are three components of the autonomic nervous system: the sympathetic, parasympathetic, and enteric (digestive) systems. Who knew? I thought there was only the first two. Explains a lot. The article is a tad overoptimistic about the notion we can find physicians who can adequately diagnose MCAD and work with our other docs....but it is a good beginning and something perhaps to be copied and taken to those who treat us. ---Sylvie

Dear Hope, I just would like to offer the caveat that I have only a year's experience with this. It would be best to seek advice from someone who has received infusions. S

Hi Hope, Among the people I know who've had IVIG (three only!), two receive infusions regularly. All have experienced real improvement. I hope someone who's undergone this treatment posts here...as noted, I'm still being evaluated, so I can't speak for myself. I've pm'ed some additional information for you. ---S

Dear Hope, I have relatively mild sensory and severe autonomic SFN. I had an acute onset just a year ago, and I'm still being tested to see if I have an underlying autoimmune disorder. I'm eager to find this out, because there are real treatment options, like IVIG infusions, which can halt the progression or actually improve SNF symptoms...ONLY if I have some sort of autoimmune disorder...like yours! I encourage you to see a rheumatologist or other specialist well-versed in sarcoidosis, SNF, and infusion therapies. This might not be easy....so try to read up on this (lots on the web) so you know what questions to ask. See if you can talk to the Dr. or someone medically knowledgeable in the office before you make your appointment. It took a year, but I finally found a really good neuro at the Peripheral Neuropathy Center at Weill Cornell in NYC who can put all of this together. (Feel free to PM me if you'd like his name). Not to be an alarmist, but the time factor for effective treatment is very important and a "watch and wait" stance can possibly lead to irreversible worsening of symptoms. You are clearly motivated....I wish you the best. Sylvie

The key notion, in the way the authors use "mind-body," is that the "mind"is not causal ...ie: making things up, or "somatizing" symptoms, but that physiological processes in the brain have psychological, as well as physical, effects....especially in neurological disorders. I think the best way to think about this is to raise our consciousness to know our mind is part of our body...that mood/"mental" disorders all are, in essence, physiological/neurological In origin. These physiological processes are varied. In our case, the same chemical/neuronal imbalances associated with POTS may also cause depression, anxiety, etc. This is why education is so important. There's lots of literature/research on depression in MS and Parkinsons. I have a great doc who specializes in this. He's a psychiatrist/neurologist who works in an MS clinic. We talk about this issue all the time. With that said, "mind-body" makes sense. Yet we live in a culture that generally doesn't "get" this....including doctors! Thus the mission of the Dysautonmia Project.

Hi Yogini, Yes, perhaps calling out POTS as a "mind-body" disorder is bit too strong at this point, when we don't have recognition as a body disorder! I understand and agree with you about the effects of any chronic disease on mood, we are all grieving significant losses. In addition, we suffer the problem of dismissals and misdiagnosis in the medical community....it's very real, sad, and frustrating. However, people with chronic neurological diseases (like MS and Parkinsons...and dysautonomia) have a higher incidence of mood disorders than, say, people with cancer. So the "Dysautonomic Project" (DP) was created to specifically educate the medical community about POTS ....and its association with mood disorders. Your emphasizing the effects of POTS on youth speaks directly to its mission. They exist in response the death of Christina Tournant: a brilliant, young MIT student with POTS, whose parents and doctors had no idea she was depressed until she took her life. You can find medical research articles about this issue, and other good information, on their website. They've also put out a book (rave reviews). I think DP was set up to confront stigmatization, and I think it's really smart they've first targeted the medical community. I'm glad you responded so eloquently to this post....I think it's an important issue in our own community.

Hi Yogini, Yes, it is a dilemma, given the misconceptions about dysautonomia and the tendency of not only lay people, but physicians, to label POTS symptoms as psychosomatic (or, as seen below, as a psychiatric disorder). However, as noted, mood disorders are common in our community, so how can this be addressed in a way that does not further stigmatize us? Apparently the Dysautonomia Project, where I found this article, is set up to educate physicians. They emphasize the disorder is not even taught in medical school. I found this on their site: "Huffington Post blogger, Deborah Cornwall, reported on a survey of more than 400 Dysautonomia patients released in July of 2014 by Dysautonomia International that: The average time to diagnosis is 6 years. 83% of patients are initially misdiagnosed with psychiatric disorders Only 12% are diagnosed by their primary care physician or pediatrician 35% of patients see between 10 and 20 physicians before diagnosis" So yes, it then becomes very hard to acknowledge and discuss true psychiatric ailments that often accompany POTS. I think it's difficult even for people within our own community. I also read the situation is more pressing in the MCADS community, where 70% of people with this disorder also report depression. The theory is that inflammation causes both -- through the release of histamines and cytokines. I just wish there was better understanding and treatment all around.

You're welcome Statesof! It's hard to find good, accessible information on this topic. I'm glad I discovered it -- it looks like an interesting site to follow,

https://thedysautonomiaproject.org/pots-depression-an-invisible-illness-affects-the-body-and-the-mind/ This is an excellent, clear article delineating the results of two Vanderbilt-sponsored studies investigating the links between dysautonomia/POTS and ADHD, anxiety, and depression. I feel it is timely, for there are threads here now noting the frustration of posters who report their family and others perceive dysautonomic symptoms as "psychosomatic," or basically not real and/or in ones' head -- and therefore, in ones' control. It states that basically, in all addressed disorders, the divide between what is "physiological" and what is "mental" is an artificial one, they are all in essence, real, neurological in origin and expression, and may be interlinked. None of these disorders is simply "in our heads!" Of course, there is a much greater stigma associated with depression, anxiety (and, to a lesser extent, ADHD) than with dysautonomia -- which is often upheld even among sufferers, who feel additional guilt and stress for being unable to simply will these sometimes more disturbing symptoms away. Please note how the authors emphasize that, although no one really knows how, the very same neurotransmitters are involved in depression, anxiety disorders, and dysautonomic disease. Hopefully, this article will help to us to better understand these issues. I also hope it sparks some discussion ...for I know it is difficult for many of us to acknowledge and discuss the anxiety and depression that often accompany dysautonomia.

I would like to echo Sarah that a culture should be done before any further prescription of abx. For this could be simply very painful ISC and yeast.....which the abx would only exacerbate. So, as you wisely said on Thursday, you will have to call around. I'm so sorry. The Azo can be acquired generically as well....(long name beginning with "p"....harmless I believe). Best, S