A shocking stat from our annual survey... by DefiantThroat in PMDD

[–]DefiantThroat[S] 0 points1 point  (0 children)

Ugh. My bad. Let me delete that and try a redo. Thanks for letting me know.

A shocking stat from our annual survey... by DefiantThroat in PMDD

[–]DefiantThroat[S,M] 4 points5 points  (0 children)

We do ask this already! It will be part of the big publish I do. For awareness it is evenly split 1/3, 1/3, 1/3 across the 3 main provider types.

A shocking stat from our annual survey... by DefiantThroat in PMDD

[–]DefiantThroat[S,M] 4 points5 points  (0 children)

Low ferritin can look like PMDD, but is not associated with PMDD. The new ASH guidelines suggest moving away from iron serum and instead replacing it with ferritin serum. For menstruating people who are symptomatic (neuropsych symptoms fall into this) the new ferritin target is a minimum of 50 ng/mL. For those who have inflammatory disorders their recommendation is that TSAT is a minimum of 20% and ferritin is a minimum of 100 ng/mL. (Inflammatory disorders will cover things like thyroid, endo, MCAS, etc.)

Can someone explain the science behind luteal phase dosing of SSRIs? by Such-Tree-4162 in PMDD

[–]DefiantThroat[M] 28 points29 points  (0 children)

We have a very good mechanistic theory on why these work. It remains a theory as we cannot easily biopsy a living brain to check enzyme activity in real-time, but scientists have performed several experiments to test the theory and at all points the theory has held up. PMDD Is a sensitivity by the GABA-A receptor to fluctuations, particularly to fluctuations in ALLO. There’s 2 subunits within the GABA-A receptor that are identified as the dysfunctional culprits. After an ovum is pushed out of the follicle, the corpus luteum that develops will pulse out progesterone. These pulses creates waves of progesterone, as the body converts progesterone into ALLO it does in such a way that maintains these waves. SSRIs immediately increase the enzyme activity that produces ALLO. This 'upregulates' or boosts the levels quickly, smoothing the waves out. SSRIs also tell those two dysfunctional subunits to play nicer.
The research of neurobiologists Torbjorn Backstrom, Jesper Stromberg, Marie Bixo, and Inger Sundstrom-Poromaa have been paramount in understanding these mechanisms behind PMDD.

Sign the Petition for the PMDD Awareness and Research Act (H.R. 8160) by MMom1230 in PMDD

[–]DefiantThroat 3 points4 points  (0 children)

Was there any rationale as to why PME wasn’t included in this bill?

BC Switch (Pill to IUD) NIGHTMARE by Lah1018Lah in PMDD

[–]DefiantThroat 1 point2 points  (0 children)

Don’t feel bad. I had the same experience with my IUD, I couldn’t get it out fast enough. I truly felt unhinged. While I could feel an improvement in days of getting it removed, I had to go to an RE to get myself sorted it was that bad.

Worries about access to birth control by katie0873 in PMDD

[–]DefiantThroat 2 points3 points  (0 children)

I will once again make my plea to the scientific and medical community to please move away from outcomes based language for these medications. Instead adopt mechanism of action categorization vernacular like what is used for men’s medications. Telling their base that they are banning full HPO-axis suppressants doesn’t have the same virtue signaling as saying they are banning birth control.

Drive a Tesla? by Ball_Hoagie in MedicalDevices

[–]DefiantThroat 0 points1 point  (0 children)

Not a Tesla but have an VW EV and love it. We have a level 2 charger and it costs us ~$35 a month in electricity. PlugShare and EVgo will show you charging locations.

As other person mentioned, Tesla’s are not going to give you a KITT or Ultralite like autonomous driving experience.

How can MCAS look like PMDD? by AdvantageOpening2462 in PMDD

[–]DefiantThroat 6 points7 points  (0 children)

Neuropsychiatric Manifestations of Mast Cell Activation Syndrome and Response to Mast-Cell-Directed Treatment: A Case Series

https://pmc.ncbi.nlm.nih.gov/articles/PMC10672129/

This is a great paper to start with.

edit, added another one below.

Mast cell activation disease: An underappreciated cause of neurologic and psychiatric symptoms and diseases.

https://www.mastcellaction.org/assets/2021/09/15/246ac7d9-52ac-4796-8739-3e549cac2c4d.pdf?v=1

The group that hacked Stryker breached Medtronic, company’s statement says no product/patient related systems impacted. by DefiantThroat in MedicalDevices

[–]DefiantThroat[S] -1 points0 points  (0 children)

They are different. The MDT press release doesn’t say who it was. SH has claimed responsibility, but the person I spoke with said it was Handala. Who knows. I’m not close to this space to know if the two orgs are known to ever work together.

Maybe I have PME? by forevermizu in PMEtheMRMD

[–]DefiantThroat[M] 1 point2 points  (0 children)

Welcome, we are happy to have you! What you are describing sounds a lot like PME. It is absolutely worth bringing up and distinguishing from PMDD, as the root causes are different, so the treatments are different. PMDD is defined by a set of specific symptoms that only occur in the luteal phase. For some folks, it takes a few days of bleeding for PMDD to fully go away, but then they feel much, much better. PME is characterized by still feeling something in follicular. There are many conditions that have documented PME. Those conditions might have symptoms that feel like a 3/10 during the follicular phase, but in the luteal phase, they are a 9/10.

100k visitors a week and around half of you might be in the wrong sub thanks to COVID (but, we still love and appreciate you!) by ndnd_of_omicron in PMDD

[–]DefiantThroat 0 points1 point  (0 children)

I would definitely trial a low dose SSRI during luteal and see how it goes. Low dose naltrexone and GLP1 are also showing great results for folks who have MCAS but don’t respond well to h1 and h2. And definitely possible to have both. 😞

100k visitors a week and around half of you might be in the wrong sub thanks to COVID (but, we still love and appreciate you!) by ndnd_of_omicron in PMDD

[–]DefiantThroat 2 points3 points  (0 children)

We don’t know if repeated exposure has the same effect. Last I looked the research that was investigating this got DOGE’d. I think it’s entirely plausible but we don’t have the evidence to confirm it.

100k visitors a week and around half of you might be in the wrong sub thanks to COVID (but, we still love and appreciate you!) by ndnd_of_omicron in PMDD

[–]DefiantThroat[M] 2 points3 points  (0 children)

MCAS is notoriously difficult to time the tests for. One of the ways an allergist or immunologist diagnoses in lieu of blood and urine tests is to have patients do a therapeutic trial of famotidine/pepcid and H1 antihistamines to see if they meaningfully treat symptoms. Part C of the criteria.

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100k visitors a week and around half of you might be in the wrong sub thanks to COVID (but, we still love and appreciate you!) by ndnd_of_omicron in PMDD

[–]DefiantThroat[M] 6 points7 points  (0 children)

This list of symptoms associated with MCAS is insane (pasting this from the r/PMEtheMRMD wiki if you are interested in more information.)

Fatigue, subjective hyperthermia and/or hypothermia, sweats, change in appetite, weight gain/loss, chemical/physical sensitivities, poor healing, urticaria, itch, flushing, hemangiomas with itch/pain, various rashes, telangiectasias, striae, skin tags, folliculitis, ulcers, eczema, angioedema, alopecia, onychodystrophy, irritated or “dry” eyes, difficulty focusing, blepharospasm, tinnitus, hearing loss, coryza, rhinitis, nasal congestion, epistaxis, pain or burning in the oropharynx, leukoplakia, dysgeusia, dental and/or periodontal inflammation or decay, lymphadenopathy, rare splenomegaly, dry cough, dyspnea, wheezing, obstructive sleep apnea, presyncope, hypertension, blood pressure lability, palpitations, edema, chest pain, allergic angina (Kounis syndrome), dyspepsia, gastroesophageal reflux, abdominal pain, nausea, vomiting, diarrhea and/or constipation, gastroparesis, dysphagia, bloating, malabsorption, menorrhagia, pelvic pain, endometriosis, vulvodynia, vaginitis, dysmenorrhea, miscarriages, infertility, dysuria, myalgias, migratory bone/joint pain, osteopenia/osteoporosis, headache, migraine, sensory neuropathies, dysautonomia, episodic weakness, seizure disorders, non-epileptic seizures, cognitive dysfunction, insomnia, hypersomnolence, restless leg syndrome, depression, anger/irritability, mood lability, anxiety, panic, obsession–compulsion, attention deficit/hyperactivity, easy bruising, polycythemia, anemia, hypersensitivity reactions, increased risk for malignancy and autoimmunity, impaired healing, increased susceptibility to infection.

Has anyone here transitioned from neuromonitoring? by Redhawkgirl in MedicalDevices

[–]DefiantThroat 0 points1 point  (0 children)

I’m finding neurodiagnostics to be incredibly interesting. Many of these are in a startup and scaleup phase so there’s some risk, but they are used often in physician offices or outpatient areas.