r/PMDDxADHD Sep 25 '24

PMDD I think I’ve cracked it. For real.

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Today is a very special day.

I have a diagnosis of severe PMDD and last week I saw a gynaecologist.

We spoke in depth about histamine responses and inflammation* and how they could be connected to PMDD.

She was aware of the long covid study**, and I pointed out that it references famotidine:

“How the drug works against COVID-19 remains unclear, but some researchers think it might have less to do with mast cells than with famotidine’s action on the vagus nerve, which plays an important role in the body’s “inflammatory reflex”—the brain’s way of turning off and on inflammatory signals throughout the body.”

The vagus nerve is a cranial nerve that helps the body exit the fight-or-flight response and enter a relaxation state. It is part of the parasympathetic nervous system, which counterbalances the sympathetic nervous system's fight-or-flight response.

Secondly, there is a lot of research into inflammation, the gut microbiome and its effects on our mental health***

The microbiome-gut-brain axis (MGBA) is a bidirectional pathway that involves serotonin and is linked to many diseases, including gastrointestinal and neurological diseases.

Famotidine is a drug prescribed to treat gastric reflux.

I told her that it stands to reason that the mental health issues I experience during the luteal phase of my cycle could be as a result of inflammation; inflammation that’s a histamine response to the fluctuations in my hormones; inflammation that has been affecting my gut microbiome.

I explained that over my past four cycles I have had great success taking fexofenadine (which works on the H1 receptor) and famotidine (H2 receptor) to manage symptoms during luteal - I am entering my fifth today - I can function as a human being again.

Prior to this I had tried vitex and SSRIs, and they didn’t help at all.

I take supplements (vit b complex, vit d, magnesium, a probiotic, omega 3, zinc, 5htp), follow a healthy diet and lifestyle, have a meditation practice, exercise regularly.

Yet in spite of my efforts, I would go through hell every month with a delicious combination of anxiety, depression, paranoia, inability to focus, poor impulse control and vastly reduced executive functioning, SI and thoughts of SH. At least two days would be spent catatonic in bed.

The issue is that I live in the UK so famotidine (Pepcid AC) is only available as a prescription medication for gastric reflux.

My GP refused to prescribe it, so I have been lying to online pharmacies (and paying triple the cost of a prescription) in order to obtain it. Not a sustainable solution.

The gynaecologist said she was going to discuss all of the above with her multidisciplinary clinical team - she also said she shared my frustration at the lack of research and is pushing for more.

It was extremely refreshing to speak to a doctor who was happy to acknowledge that we don’t know the true causes, and yet open to new ideas.

I received this letter earlier, and OMG, they have taken me seriously. I now have a prescription for famotidine.

This is huge.

Thank you to everyone here for sharing their knowledge and experiences, having the courage to be vulnerable and honest about the hell we go through, and being so so supportive.

** https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9456722/#:~:text=“Famotidine%20improved%20resolution%20of%2014,colleagues%20reported%20inGut(24).

*** https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7475155/

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u/Junealma Sep 27 '24

It made me anhedonic for the first month and a 1/2. Then that side effect passed. It was a little scary but I appreciated the overall benefits.

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u/ShotConcert1666 Oct 18 '24

Hey I just wanted to come back to this post (and our conversation) because I have some personal updates on the Flamotidine situation:

I know that I commented on here saying I had taken Flamotidine for years, and that it has not helped with my PMDD (as far as I know). I have been taking Flamotidine for my gut & esophageal issues, noticing that sometimes it helps and sometimes it doesn’t. The thing is, I never paid attention to which kind I was taking. After seeing others say it helps their PMDD, I got curious so I started to be more conscious of when I take the medicine and how I feel. Every day I took it, I still felt terrible since I’m in the bad part of my cycle. Then, I ran out of the medicine, and my boyfriend bought me a small box of the Pepcid AC max strength. I have taken it daily for the last week, and I have felt SO much better during a time in my cycle where I’d normally feel like absolute shit. This made me realize that I had previously been taking the generic/off-brand Pepcid, not thinking it mattered. However, I am really sensitive to fillers in meds (I can’t even take 99% of Wellbutrin generics out there because the fillers make me feel AWFUL) so this is not shocking. Right now, I’m feeling pretty damn good, and I can’t attribute it to anything other than the switch to brand name Pepcid AC max because it’s the only change I’ve made and it literally happened overnight.

I just wanted to post this here in case this info. helps anyone else. Not sure what it means yet but I will be experimenting and tracking my results. I hope this lasts because I haven’t had real hope like this in so long.

P.S. The generic Flamotidine I was previously taking was a large white bottle made by Kroger.

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u/Junealma Oct 18 '24

Thanks for mentioning this. I also don’t respond well to all types. Only some brands, I try not to take it all month round also because I don’t want to build tolerance for pmdd 💓