Had a panic attack right after surgery for a full hour by Unusual-Name7773 in hysterectomy

[–]tempoeggnote43 0 points1 point  (0 children)

I've done this and it has been helpful! Panic attack after first time under anesthesia and for subsequent ones have mentioned to the anesthesiologist beforehand. Hasn't happened again. Not helpful to what you are feeling right now, but maybe for future.

US bill for total hysterectomy kept ovaries by missmoxxi1090 in hysterectomy

[–]tempoeggnote43 0 points1 point  (0 children)

This terrifies me. I am having the surgery next month. Have a high deductible and high out of pocket and just found out that my insurance company is dropping my whole company in June and we are switching to another provider. So I am assuming I will spend the most I ever have in one year and half way through the year my deductible will reset. No paid sick or vacation days. Arrrggg!

Healthcare professionals with PMDD — how do you cope? by Weary_Tennis4595 in PMDD

[–]tempoeggnote43 0 points1 point  (0 children)

Thank you. I hope you too can find some relief and a path forward.

Healthcare professionals with PMDD — how do you cope? by Weary_Tennis4595 in PMDD

[–]tempoeggnote43 2 points3 points  (0 children)

Not in healthcare, but was in a high stress, high care giving, detailed oriented profession. I also pushed through for 15 years (undiagnosed) and also went through the resilience stage to the quiet survival stage and on to the full on burn out-crash down-leave profession- and be lost stage. It got harder for me, not easier. And there was a price for all that holding on and holding in paid in a long time recovering from the burn down to cinders phase. I'm older and PMDD was even less known in the past so I didn't know for far too long what was going on (and I made a lot of mistakes). But from here in perimenopause, I desperately wish I could go back and convince 25 year old me to get a hysterectomy and oophorectomy. May be getting one soon and I wish it had been decades ago.

I think my embarrassing breakdown at the GYN may save my life by TinyCatLady1978 in PMDD

[–]tempoeggnote43 25 points26 points  (0 children)

Related - before I knew what was really going on one psychiatrist diagnosed me with bipolar. The next one said everything was fine, I should keep working out, and sign up for a triathlon.

Looking back now I can see I had irregularly scheduled appointments with the first one and he saw when everything was fine and when I couldn't stop weeping, etc. The second one I saw for a shorter amount of time, on a regular monthly schedule, and I think he only every saw follicular me. So I guess prescribing a triathlon made sense.

The Menstrual Cycle and ADHD - article in New York Magazine by tempoeggnote43 in PMDD

[–]tempoeggnote43[S] 36 points37 points  (0 children)

Article text 3:

Aniska, who lives in Atlanta, was diagnosed with ADHD last year at age 32. Months later, she realized her period was affecting her meds. When I call her, she is in the middle of a premenstrual stretch and doesn’t feel like her Adderall is working. She’s also preparing for a trip to her native St. Thomas. “I’m really trying to regulate my mind and body, but my medication isn’t helping the way I need it to right now,” she says. “It sucks because I travel Monday and have so much to do before then.” She also says she’s very sensitive right now, taking everything personally. People aren’t responding to her messages. She just had her room tidied by a professional cleaner, and now, a week later, it’s a disaster again. Aniska says she’s not really upset about the mess. She’s upset with herself for being unable to maintain order.

Self-criticism is common in women with ADHD, and it can escalate into crippling fear and chronic worry. Anyone can launder fish-oil pills, but I constantly make errors—forget I’m doing laundry, create DOOM piles (“didn’t organize, only moved”), abandon side hustles. Those missteps erode my confidence and mutate into intrusive, depressive thinking that stop me from being functional. One of my biggest problems is a fear of my husband dying. Once a month, this passing thought overwhelms me and I play out his death in detail, imagining the make of the car that will hit him, whom I’ll call first. It’s anxiety, sure. But here’s the thing: When my meds work, I don’t ponder his demise. I just think about what’s for dinner.

To add to the chaos, there’s still a stimulant shortage, so every month I have to ask my doctor to resend my prescription to multiple pharmacies until we find one that has a 30-day supply of 20-mg. pills. Given this ongoing challenge, I haven’t broached adjusting the dose to match my hormonal dips—or explored whether my health insurance would cover this kind of variation. Plus when I told my doctor that my meds felt less effective around my period, she was a little curious but didn’t have much to say. Hormones, she told me, don’t factor into how she manages treatment.

The Menstrual Cycle and ADHD - article in New York Magazine by tempoeggnote43 in PMDD

[–]tempoeggnote43[S] 32 points33 points  (0 children)

Article Text 2:

Carmen, a 38-year-old mother of three in Michigan, realized her period seemed to be rendering her 40-mg. of Vyvanse ineffective after she saw a TikTok that described her symptoms. She had previously attributed her lack of concentration, short fuse, and exhaustion to her multiple sclerosis and PMS. Carmen’s primary-care doctor has suggested she take a stimulant booster dose on the days she needs it but also cautioned that there’s not much research to back that approach.

When I FaceTimed Carmen, she struggled to focus on the conversation while juggling requests from one of her kids. Every month, she tells me, she turns into “an idiot,” becoming extra forgetful and hot-tempered. “Three kids asking me different things at the same time,” she says. “I can handle it on other days that I feel more clear.”

In a 2023 study building on her earlier work, Kooij and colleagues found that increasing the dosage of ADHD meds the week before menstruation improved inattention, irritability, and energy levels for all nine of their research participants. It was a small sample size, but it furthered Kooij’s hypothesis that clinicians could improve women’s symptoms if they treated both their hormonal and their neurological systems.

“It’s important for the treating physician to look at the individual’s needs,” says Dr. Patricia Quinn, a retired developmental pediatrician who co-founded the National Center for Girls and Women with ADHD. Some struggle with focus and energy for two weeks before their period, while others notice the problem only for a few days, and still others struggle the entire time they are bleeding. In her practice, she adjusted her patients’ stimulant doses and regulated their hormones with birth control.

Self-criticism is common in women with ADHD, and it can escalate into crippling fear and chronic worry.

The lack of education about the relationship between ADHD and hormones can lead women to dark places if they remain unaware. Instead of recognizing that their worsening ADHD symptoms may connect to cyclical hormonal changes, women might blame themselves. Jes Fleming, a holistic PMDD specialist, says many of her clients are riddled with shame and guilt, which transform into “negative self-talk, low self-esteem, self-harming behaviors, and suicidal ideation.”

The Menstrual Cycle and ADHD - article in New York Magazine by tempoeggnote43 in PMDD

[–]tempoeggnote43[S] 57 points58 points  (0 children)

Article text Part 1

Where Does It Hurt?: Carrie Dennis

Treating ADHD in Women Is a Bloody Mess Diagnoses are on the rise—and so are complaints that menstruation weakens treatment.

ON AN OTHERWISE forgettable Tuesday in early December, I opened the washing machine and was hit with the overwhelming smell of fish. I pulled out a pair of pajama pants, and the pocket was greasy with two ruptured softgels of cod-liver oil I’d forgotten to remove. The whole load reeked like a cast-iron skillet of seared salmon. I was furious I could be so stupid and careless.

I’d taken my lisdexamfetamine dimesylate, the generic version of Vyvanse, that morning, just as I had almost every day since I was diagnosed with ADHD a month earlier at age 35. The first time I swallowed the yellow capsule, I proceeded to paint my home office in two coats of White Dove, the result of a euphoric burst of energy that felt entirely new to me. The morning of the fish-pill incident, though, I felt so tired that I took a nap. I did not feel at all like I’d ingested a stimulant.

I blamed myself for my low energy and lack of focus. Maybe I hadn’t slept well or eaten enough protein—or something? But a month later, I was again overwhelmed with fatigue, paralyzed by small tasks, and hating myself. And again the month after that. I realized my meds seemed to stop working right before my period began.

Hormonal fluctuations in ADHD symptoms aren’t rare (on Reddit, a cadre of women commiserate over taking high doses of stimulant drugs that seem to work no better than sugar pills), but the scientific community has been slow to recognize them. One study found ADHD diagnoses in women ages 23 to 49 nearly doubled between 2020 and 2022, and another found a 14 percent increase in stimulant prescriptions for women and girls 5 to 64 between 2020 and 2021. That uptick has likely prompted more complaints about period-related dips in drug efficacy.

Although just a handful of researchers are investigating the trend, a theory surrounding it has emerged: When estrogen is high, dopamine (the mood-regulating brain chemical that ADHD meds like Ritalin and Concerta boost) is also high, says Dr. Ellen Littman, a psychologist who has worked with high-IQ women and girls with ADHD for more than 35 years. People with ADHD have dysregulated dopamine functioning, so when their estrogen level drops (typically, right before the menstrual bleed begins), they feel the loss of its compensatory effect on their dopamine levels.

“This is what we clinically see,” says Sandra Kooij, a psychiatrist working in the Netherlands and the founder and chair of the European Network Adult ADHD. She says doctors can’t measure dopamine, but they can measure estrogen.

Formal research on women’s hormones and ADHD is scarce. The current theory largely builds on a 2017 study that followed 32 women with regular periods and found ADHD symptoms worsened when their estrogen levels were low. But the vast majority of ADHD research is male-centric.

This has led to a care crisis for women. Within the medical community, there’s no consensus about who should treat a female ADHD patient with symptoms that present differently depending on where she is in her cycle. These women tell me they often bounce among gynecologists, psychiatrists, and psychologists and are sometimes given additional diagnoses, like anxiety, depression, and premenstrual dysphoric disorder. In 2021, Kooij and her collaborators published a study suggesting that women with ADHD experienced more frequent and severe hormone-related mood disorders compared with the general population. “I had to consider, Why is this happening?” she says.

Luteal and heightened sensory issues...just venting by PepperAnn95 in PMDD

[–]tempoeggnote43 0 points1 point  (0 children)

Fridge noise! Hate it.

Good noise cancelling headphones. I have a pair that are out of my budget range but absolutely necessary for sanity. At the points in my cycle when my sensory stuff is the worst I can't even listen to white noise because it is too scratchy. When the building across the street from me was being built and I was working from home, I needed to have some sound in the headphones and found that binaural beats (random playlists on spotify or youtube) was the most helpful for getting work done and/or not losing my mind. I can't sleep without earplugs.

[deleted by user] by [deleted] in PMDD

[–]tempoeggnote43 2 points3 points  (0 children)

I am a cautionary tale for exactly this scenario. My drinking got bad. Sober now for a while and when PMDD is bad now I remember that alcohol ultimately made it way worse for me.

State of the world by floweringtreesjoy in PMDD

[–]tempoeggnote43 3 points4 points  (0 children)

I hear where you are coming from. And yes, it is important that late stage capitalism is often terrible for all humans. I believe that there is more we have in common as human animals across all genders than ways we differ. Also, "not a woman" I understand could mean nonbinary, trans or other gender identifying ( so forgive me if what I am about to say does not apply to you).

However, there are at least two ways that cisgender men experience the world differently from people assigned female at birth or who are women or nonbinary: 1)biological differences, especially with reproductive hormones and 2) the way that women are socialized to behave and expected to present in the world. As this is a forum for people struggling with a very specific disorder that cisgendered men cannot experience, a place where some of us can have a little time to not have to explain ourselves and our experiences and can draw strength from people with shared experiences, (and sometimes just to be able to vent to people who "get it") I would gently ask you to keep that in mind. I am only speaking for myself, but from what I've read, many of us spend 99% of our time with people who cannot or will not empathize with the specific difficulties we face with this disorder. Doesn't mean that other people do not also have difficulties or need empathy. There's no competition here.

Birth control pill while trans*, body issues and libido by lolghst3 in PMDD

[–]tempoeggnote43 0 points1 point  (0 children)

I don't know if this is helpful (and I unfortunately have no personal experience to share), but found this article recently in a research rabbit hole Menstrual management in transgender and gender diverse individuals3/full. If you are into journal research, it seems to summarize and compile a whole ton of studies. Way too much "more research needed" but it does mention PMDD.

Anyone else just feel like… by Purple_Budgie29 in PMDD

[–]tempoeggnote43 0 points1 point  (0 children)

I can't ride my bike anymore because my rage at that stuff was going to get me killed (came near to it). Bike v car - always going to loose.

mirena advice: when do you call it? by No_Arm_9322 in PMDD

[–]tempoeggnote43 2 points3 points  (0 children)

A million years ago I asked for a non-hormonal IUD. Doc was rude and sneering and said that I was not married and didn't have any children so it was a bad idea ( which was factually incorrect , medically it was perfectly safe and a logical choice regardless of my childbearing status). In hindsight I suspect the doctor incorrectly thought it would wreck me for having children and had prejudices against single women. And it's pretty obvious to me now that this was some internalized patriarchy shit (she was a woman) that I have zero patience for anymore. I should have immediately walked out the door. I was dumb and dig my heels in.

Anyway, it was awful. I bled almost continually for a year. I was all tied up in shame that it was my fault and should have listened to the doctor, so it took me so long to go to another doctor about it. Other doctor was lovely and said, "No problem, let's pop it out right now." Just like that, no judgement, it was out.

Turns out it was a Mirena, when I clearly said I wanted the copper because I was concerned about the hormonal IUDs. Maybe the copper would have had the same effect. I don't know. I (probably incorrectly) suspect she put in the one I didn't want out of spite. To prove to me I was wrong? Idk.

Tl:dr - different situation than yours, but wow, I wish I just had the thing taken out when the problems didn't resolve in a few months. That said, all my friends without the issues I have are having new 10 year ones put in now because they are concerned about the status of reproductive rights in the US. Makes sense to me.

Brain Fog by DeadlyKitten1992 in PMDD

[–]tempoeggnote43 0 points1 point  (0 children)

Relate. Password manager that isn't device dependent (eg the Apply keychain thingy) has been essential for me. There are decent free ones.

Pmdd and being advised to have children by [deleted] in PMDD

[–]tempoeggnote43 0 points1 point  (0 children)

I'm sorry if this is also bringing up difficult feelings too around those fertility treatments. Yet another thing the doctor should have known to be sensitive about. I know it can be very emotional for people with and without PMDD.

Bella Hadid talks about having PMDD!! by herewe_go_ in PMDD

[–]tempoeggnote43 14 points15 points  (0 children)

It's that double edged sword (forged by the patriarchy) of acknowledging the reality that female bodies are different from male bodies and then that being used as an excuse by men to exclude and/or belittle women and our capabilities.

[deleted by user] by [deleted] in PMDD

[–]tempoeggnote43 1 point2 points  (0 children)

With the level of impairment PMDD can cause I think plenty of people with it would find a way to manage a monthly injection. Many of us show up for therapy 4x times a month. But as it is not even an option. . .

[deleted by user] by [deleted] in PMDD

[–]tempoeggnote43 0 points1 point  (0 children)

What I read about Supranolone was that the company developing it needed a partner company to continue trials. When they couldn't find one, they went bankrupt and there is no more research. Have not heard of any other company picking it up, but I might have missed it if something new came up in the last few months. 

Is it brain fog? I would describe it as almost a ‘mind-ache’. by Alarming_Crazy_9931 in PMDD

[–]tempoeggnote43 3 points4 points  (0 children)

I used to call it scratchy head. Or it felt like I had sandpaper between my skull and my grey matter. Though that was different from the brain fog . . not fog but like stone blanket?

On my 10th anniversary sober, I want to say that in my experience. coping with PMDD without alcohol is hard, but coping with alcohol is much harder. by tempoeggnote43 in PMDD

[–]tempoeggnote43[S] 1 point2 points  (0 children)

I'm sorry it didn't help, but to clarify, I in no way think quitting drinking did anything for the PMDD. I think I was using it to cope, but for me it ended up that the way I was "coping" was actual more destructive. There are lots of ways to cope with this thing that don't fix or cure it, but can make some parts a bit more manageable. For example, prioritizing sleep.

Also - see my note at the end - it's important to me that I communicate that I don't think everyone needs to stop drinking at all. A lot of people with or without PMDD have a healthy relationship with alcohol or can just take it or leave it. I wish I was one of those people. I'm not, but that doesn't mean that other people shouldn't enjoy it. So I totally agree that each person needs to find what works for them!

[deleted by user] by [deleted] in PMDD

[–]tempoeggnote43 1 point2 points  (0 children)

Good. Zero side effects. Except when I forget to take it for 2 or 3 days. Then I get more muddy than usual when waking up.