Lupus - POTS or something

[stev...@cs.com]

Hi Group

Have any of our clinicians had some success in easing or resolving symptoms of Lupus or POTS and PMDD - obviously a lack of clarity here? Symptoms have been occurring for about one year. My daughter is 41 and currently hospitalized for lower body muscle weakness, dizziness, migraines, eliminatory issues, some cognitive fuzziness, etc. She has seen a neurologist, GI specialist, functional MD, Gyn, and will be seeing an HRT specialist as the symptoms ease up after her period and wallop her just prior. 

We were wondering since her autonomic nervous system is so out of whack, would using a device to balance and calm her vagal nerve reactivity be of help. She practices a calming meditation and has used at home NFB (MyndLift).

Positively puzzled.

Steve

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Steven Warner, PhD BCN QEEG-D

[David Cantor]

With regard to PMDD - we presented at ISNR a couple of meetings ago, new evidence that there specific areas of the hubs of the DMN that are dysregulating the ability to "switch out" and interfering with allowing other networks to resolve physiological stressors such as hormonal shifts in PMDD and potentially related to ongoing psychoneuroimmunological stressors as well  - Tira Clay an I and others are preparing this work for publication - we hypothesize that with this information there may be good success addressing these ROIs using LORETA protocols - 

Best,

Dave

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[Dan Tuttle, DC, LCSW]

Steve,

Does she have an hx of living in a water damaged building(s)? I'm finding more and more when people present with a consortium of symptoms like this it is a biotoxin/mold issue. 

Dr. Jill Crista has a questionnaire that shows just how all over the place mold symptoms can be, depending on how the person is affected. https://drcrista.com/questionnaire/ . You can spend all sorts of money on therapies and gadgets treating symptoms but if it's mold it won't really get better until the exposure issue is addressed. 

Dan

On Wed, May 7, 2025 at 9:56 AM 'stev...@cs.com' via ISNR_Members_Forum <isnr_memb...@googlegroups.com> wrote:

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[JEFFREY CARMEN]

Steve,

My knowledge about Lupus is extensive, especially regarding headaches. The other things, not so much.

Regarding "migraines". Lupus patients (SLE specifically) tend to have two kinds of headaches. Migraine headaches and inflammatory headaches. They look and feel the same but are triggered by different things and respond to different interventions.

The Migraine Headaches respond tend to trigger on the let down from stress, like most normal migraines. They respond to biofeedback and neurofeedback interventions just like any other migraine. My favorite for migraines is pIR HEG but that is because I am biased.

The Inflammatory Headaches have a different mechanism. They tend to occur when the disease is entering a flare. A day at the beach will usually do it due to UV exposure. These will not respond to brain interventions but do respond to Lupus specific interventions. They tend to occur 1 week prior to a flare that includes all the other physical symptoms. The headaches tend to occur along with depression that seto come comes out of nowhere.

I hope it is not Lupus, but the diagnosis is not always easy. Sometimes it takes a long time for the blood work to come back abnormal. One quick differential diagnosis indicator: Lupus Patients often get sick from mid-day sun exposure from UV not heat. MS patients often get sick from mid-day sun exposure from the heat, not the UV. The two diseases can have overlapping symptoms but sun exposure vs heat exposure can be a useful differential.

Good luck.

Jeff Carmen, Fabius, NY

[STEVEN WARNER]

I am truly appreciative for your responses. 

Thanks 

Steve 

Steven Warner, PhD BCN QEEG-D

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On May 8, 2025, at 8:18 AM, JEFFREY CARMEN <carme...@gmail.com> wrote:



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[Mark Smith]

Hi Steve,

So sorry to hear about your daughter’s suffering. 

We have successfully treated migraineurs with the comorbid symptoms you mention: POTS, PMDD, dizziness, cognitive issues, and elimination problems. It’s rare that clients present with that full constellation of symptoms but some do. We would encourage you to pursue ISF training to help. Good luck!

Warm regards,

Mark

Mark Llewellyn Smith LCSW, BCN, QEEGD

140 West 79th Street, #2B

New York, NY 10024

ad...@neurofeedbackservicesny.com

Neurofeedbackservicesny.com

212-877-7929

On May 7, 2025, at 9:56 AM, 'stev...@cs.com' via ISNR_Members_Forum <isnr_memb...@googlegroups.com> wrote:



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[STEVEN WARNER]

Thanks Mark. 

ISF conceptually makes sense. I appreciate everyone’s time and thoughtful suggestions. 

We have a wonderful and caring group. 

Steve

Steven Warner, PhD BCN QEEG-D

Sent from my iPhone 

On May 8, 2025, at 9:03 AM, Mark Smith <markls...@gmail.com> wrote:

Hi Steve,

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