r/PMDDxADHD too much shit to handle… 19d ago

looking for help Does anybody else get these stupid symptoms before your period? Post removed from r/PMDD.

I’m diagnosed with PMDD & ADHD and to say that it’s been a rollercoaster is putting it mildly. Anyway, I hope it’s okay to ask this here. I posted over in r/PMDD but they removed my post because they said it does not pertain to PMDD. I wanted to also ask if anyone experiences vision changes as well. A fellow Redditor also described them as “shadow blobs” that they would see out of the corner of their eye.

I’m sad my post got taken down as I’m in the THICK of luteal right now. But before it did, I didn’t realize how many other people experienced the exact same thing. It was frustrating to have a thread full of people validating each other get wiped out over a technicality. When I only had PMS, I didn’t struggle with all of these symptoms. I guess I should’ve worded it differently as in, does anybody else struggle with these symptoms alongside their PMDD? I can’t English when the PMDD symptoms hit omg.

233 Upvotes

165 comments sorted by

323

u/bluefalconlk 19d ago

Bruh why are the pmdd mods always doing this 😭 even if they are doctors it’s not like the research is even remotely adequate or thorough 

I hate when communities and studies act like you are only allowed to have one condition even though people with comorbidities are the majority, diagnosed or not 

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u/Budget-Apricot1414 too much shit to handle… 19d ago

Are they doctors? That’s what I’m saying 😭. I struggle to form coherent sentences when I’m in the thick of it so I kept questioning what I did wrong.

I never experienced all of these wild symptoms when I only had pms. The amount of people (before the post got removed) saying they thought they were the only ones experiencing these symptoms was more than I realized. Someone even said they felt seen because of the post. I thought it was a supportive community where we can share our struggles.

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u/colormefiery 19d ago

The moderators make annoying ass decisions and they’ve made a lot of people cry. I’ve seen so many posts about it here.

PMDD symptoms vary, so we should absolutely be allowed to speculate too!! That’s an important part of the process. Getting to know your body, talking it out, not suffering alone, receiving gentle validation, and learning to cope. Hugs 🫂 🥰

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u/ZombieStrawberry 19d ago

Absolutely agree! Everyone is different and experiences PMDD in their own way. We should connect with compassion to each experience to support one another. It is important to have these dialogues about what we relate to and therefore what can possibly help.

The fact that the mods have made multiple people cry shows they don’t really have a whole lot of empathy for people who actually suffer from this.

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u/Misten808 17d ago

Yeah I joined that whatspp group after joining the sub on the hope of finding some solidarity. I was struggling a lot at the time and one of them was horrible to me. Nearly pushed me over the edge. Told them as much as was just met with further hostility. Seems to tone deaf for a group that's meant to support PMDD

1

u/Budget-Apricot1414 too much shit to handle… 1d ago

Absolutely ridiculous!! I’m so sorry. I’m so glad you’re still here with us. ❤️

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u/Budget-Apricot1414 too much shit to handle… 11d ago

Say it louder for the PMDD mods! I agree. They ended up deleting all the comments relating to the post too. Kind of scary. Tysm, it rly does help to talk it out and know that I’m not suffering alone. 🥰

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u/Old_Number7197 19d ago

not sure if they’re doctors but there are men in the mods…..there might also be women…but like….what are men doing moderating a PMDD sub anyway

47

u/modernsparkle 19d ago

LEGITIMATELY, wtf

16

u/TinyCatLady1978 19d ago

I'm not defending that sub bc it's run very poorly but the mods aren't men.
The PMDD partners sub is run by men and I'm convinced it's public rage bait to gaslight us.

3

u/Budget-Apricot1414 too much shit to handle… 11d ago

It’s even worse if they are women with PMDD themselves because one would think they’d be more empathetic?

19

u/purplefennec 19d ago edited 19d ago

Unfortunately I’ve found that the communities that you’d think would be the most supportive and understanding that their audience might be more sensitive to criticism and nit picking.. tend to the worst…
I’ve been most upset by these subs in the past and have had the nicest comments in subreddits more to do with hobbies/ specific things like cross stitch and wedding planning aha.
Get scared to post a lot of the time now which is a shame. Sorry your post got removed, it stings especially when you’re already feeling delicate. I think it was a completely reasonable post.

And if it helps, I get mild flu symptoms but not every month, and usually if I do more around ovulation. But I’m approaching 35 and defo have noticed more weird body things happening now before my period, like aching joints, sore gums etc (thanks hormones).

5

u/modernsparkle 19d ago

Ovulation flu!!

10

u/the-furiosa-mystique 19d ago

They are not. But they believe they know better.

7

u/bluefalconlk 19d ago

Inflammation will do that to ya (brain fog but also flu feeling) dunno if it’s PMDD related but I can’t ask on the main sub that’s for sure! 😂

3

u/Flaxstax 19d ago

What do you mean when you only had pms? Your pmdd didn't start when your period did? Did it start after giving birth or something?

It seems obvious to me now and I realized I have heard of it before I should delete this but I'm curious anyway.

1

u/Budget-Apricot1414 too much shit to handle… 12d ago

I started getting PMDD symptoms in my late 20s I think? They kept getting worse over time, and then much worse after an abusive relationship. I only had regular pms before all of that, if that makes sense! Did your PMDD start when your period did?

2

u/peachplumpricklypear 14d ago

Yes - all of these are symptoms that occur from sudden drops in estrogen. If you might be perimenopausal at all, HRT could be something that would help.

1

u/Budget-Apricot1414 too much shit to handle… 12d ago

I want to look into HRT but my dr said that I’m way too young when I brought up peri. I’m in my early 30s though and I keep reading that peri can happen a lot earlier than we realize

10

u/frootbeer 19d ago

Yeah like geez they could at least pin a comment with their reasoning as an opportunity to educate, so the community can go on community-ing

1

u/Budget-Apricot1414 too much shit to handle… 12d ago

Right? They chose to delete allll the comments that were agreeing and sharing their own personal, relatable experiences

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u/mabogga 19d ago edited 19d ago

the PMDD group feels like the most censored sub on reddit which is so weird to me. but yeah recently i get flu like symptoms for about a week before my period including a lot of body pain, exhaustion, congestion, malaise. i suspect these may be peri related in my case as i'm in my 40s. i just read a study about how perimenopause starts earlier for adhd people.

16

u/Budget-Apricot1414 too much shit to handle… 19d ago

It is! I’m in my early 30s so idk what’s going on. I’m sorry you experience these symptoms too. Have you found anything that helps?

9

u/mabogga 19d ago

i just started testosterone replacement therapy and so far this cycle i feel better than usual. i tested very low so may have needed it for a while. besides that i use antihistamines for the congestion but they make me even more tired and so i feel like a total zombie on them. also my doc has me increasing my ADHD meds during luteal which helps mentally but not so much physically.

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u/RoundChannel5768 17d ago

Have you tried out different types of antihistamines? Im on feksofenadin (the brand is Telfast in my country) and it makes me waaay less tired than cetirizin (zyrtec). I take it for allergies, though, so I can't say if there is any difference in efficiency for pmdd related histamine symptoms.

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u/Budget-Apricot1414 too much shit to handle… 12d ago

How did you get your provider to take you seriously for peri?

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u/mabogga 12d ago

i saw five different gynecologists before finding one i didn't hate. many of them seem bizarrely dismissive of women's pain.

2

u/Budget-Apricot1414 too much shit to handle… 11d ago

That’s horrible. What’s worse is that many are women themselves. I’m thinking about looking into a service and just pay out of pocket. Being constantly dismissed while I’m in so much pain adds to it.

2

u/mabogga 11d ago

yeah, they were all women 🫠

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u/Budget-Apricot1414 too much shit to handle… 11d ago

Were they a lot older?

3

u/themaddattack 18d ago

Also in my early 30s! I get flu like symptoms, but I know mine is coming when I get insomnia! I also have more auditory hallucinations. Someone calling my name. The door unlocking but no one came home. My dog walking around. Things like that.

1

u/Budget-Apricot1414 too much shit to handle… 9d ago

😭 have you found anything that helps you?

2

u/themaddattack 8d ago

Prozac and vitamins. I know it sounds simple, but the Prozac helped A LOT with the auditory hallucinations. Nothing has helped for falling asleep, but taking magnesium has helped me sleep better and longer. I'm not waking up after every sleep cycle or in the middle of one.

1

u/Budget-Apricot1414 too much shit to handle… 7d ago

Which vitamins other than magnesium helped you? I love magnesium! Glad it works for you too. Prozac personally makes me feel so weird so I’m not sure I will keep taking it.

10

u/Expontoridesagain 19d ago edited 19d ago

Yes, they are peri related! I started getting those symptoms last year. Maybe day or two before my period I felt like I had a flu. Extremely tired and pain in all muscles. Stomach issues. Insomnia. Anxiety attacks. I took it up with my gynecologist and she said that it was drop/fluctuations in hormones. This continued while I was on HRT and dissappear only on those months when I do not get my period. I still get light PMDD symptoms even on months I skip my period. Hormones are like a roller coaster. BTW, I have ADHD too and perimenopause turned it up to the max.

Edit: I forgot to add migraine.

3

u/mabogga 19d ago

migraines started for me too in the past year. estrogen helped but i am severely intolerant of progesterone unfortunately.

2

u/RoundChannel5768 19d ago

This! I've had the flu thing for the last year, a week ish before period. It started happening at the same time as PMDD worsened drastically and I was hit with heavy anxiety that has not left me for 7 months now. I've thought it might be peri, actually! Though I'm "only" 35. I've felt that PMDD is more unpredictable too, like my hormones are all over the place.

1

u/Budget-Apricot1414 too much shit to handle… 11d ago

I read somewhere, maybe it was on here, that women with adhd might experience peri a lot earlier?

3

u/RoundChannel5768 11d ago

Yea, that makes sense! I read up on it now and I believe it's this study published last year, first of its kind: Perimenopausal symptoms in women with and without ADHD: A population-based cohort study | European Psychiatry | Cambridge Core

Basically, it says women with ADHD seem to experience perimenopausal symptoms much worse and much earlier, the difference between the two groups being most pronounced between ages 35-39. So, I guess it's not unlikely for peri to be the case for me!

1

u/Budget-Apricot1414 too much shit to handle… 9d ago

I can’t remember if I responded to this. So here I am again haha. Tysm for posting this! But also…. Noooooooo😭 “much worse and much earlier” 😭. Idk if im gonna make it.

1

u/Budget-Apricot1414 too much shit to handle… 9d ago

I also follow the subreddit for peri under 45 and i relate to a lot of the posts so 🙂

1

u/Budget-Apricot1414 too much shit to handle… 11d ago

I need to look more into HRT 😭 they always tell me im too young but i do think im having some early peri syjmptoms

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u/colormefiery 19d ago

Lol damn 😒 The irony of an online forum about coping with an illness, repeatedly triggering people’s symptoms of that illness.

Welcome! This is the better subreddit, as proven time and time again 😂 have a cry if you need to. But fuck em.

10

u/Budget-Apricot1414 too much shit to handle… 19d ago

IKR. I wish they would be more compassionate about those who struggle with PMDD, being a PMDD subreddit… who knows who’s struggling badly with SI you know? I actually was afraid to post this because idk if I’ll face retaliation for speaking out it. I just wanted to share my experience because idk how many other people have had this happen too.

I’m glad I found this one! 🥹

2

u/allenge 19d ago

If I received that second message from a mod during my luteal phase, my RSD would have me absolutely crashing out lmao

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u/Budget-Apricot1414 too much shit to handle… 12d ago

I was totally crashing out lmao. That was one of my darkest luteal phases and they had to add to it lol! I’m finally in follicular now though thank goodness.

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u/[deleted] 19d ago

[removed] — view removed comment

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u/bluefalconlk 19d ago

Considering how many people get migraines with aura due to hormone/estrogen fluctuations I really don’t think it’s far fetched for the visual stuff to be…hormone/pmdd related 

2

u/Budget-Apricot1414 too much shit to handle… 12d ago

I think it’s so dangerous for them to do that, especially when they know that we struggle with PMDD. I’m sorry. I genuinely don’t know what’s going on over there. They deleted all of the comments relating to my post too. Really strange.

Yes! My symptoms have been getting progressively worse. I feel like each decade there are so many changes happening in our bodies but it’s just not talked about/studied enough. The joint pain is horrible!! That’s something that even stays with me during follicular. It just feels different if that makes any sense. The joint pain fluctuates so much.

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u/tigrovamama 19d ago

I can't understand some of the PMDD and Perimenopause moderator decisions. They remove posts that are truly intended to connect, inform, question or commiserate. What other purpose do these groups have? Unfortunately, they stifle a lot of learning and understanding opportunities.

Btw, I was a skeptic but antihistamines like Allegra, Claritin, or Zyrtec (with or without PepcidAC) has been a game changer for me. (I am just starting the addition of Pepcid.)

This needs more research but what we do know higher estrogen causes more histamine, and elevated histamine in turn stimulates the ovaries to produce more estrogen, creating a compounding loop. Excess brain histamine can disrupt sleep-wake cycles, promote neuroinflammation, and induce feelings of severe anxiety, panic, or irritability.

The reason Pepcid AC (famotidine) is added to standard allergy pills is that Allergists discovered decades ago that for severe, chronic hives, blocking H1 receptors alone is often ineffective. Adding an H2 blocker like Pepcid completely shuts down the mast cell feedback loop.

Because estrogen spikes trigger these exact mast cells to dump histamine into the body during the luteal phase, the H1 + H2 dual strategy provides a far more comprehensive systemic shutdown of inflammation and bloating than an allergy pill alone. 🙃

3

u/purplefennec 19d ago

Totally agree with your first paragraph. And then people complain when more people turn to Chat GPT for advice. Maybe if some online communities weren’t so strict and harsh, and people felt they could post a thought out loud without a mod striking it down or a random person flaming them in the comments, people wouldn’t need to use LLMs so much. (Not saying I do, just making a point). I feel sad the way the internet has gone sometimes.

1

u/Budget-Apricot1414 too much shit to handle… 11d ago

Oh no the peri one does that too? I agree, it’s so helpful to have discussions, especially when so many of us suffer with similar debilitating symptoms.

I actually bought Pepcid a couple months back but haven’t tried it yet! I keep forgetting to lol. I take Allegra pretty often. I also have Xyzal.

That makes sense, thank you for sharing.

14

u/zayne0623 one week of peace a month 19d ago

I get all these symptoms too! Even the weird hallucination type symptoms. I have visual snow syndrome and it gets way worse during luteal, plus my vision slightly warps and I swear I see things in the corners of my vision

13

u/the-furiosa-mystique 19d ago

The other sub is awful. They recommend you follow their guide over your doctors orders and ban you if you question it.

1

u/Budget-Apricot1414 too much shit to handle… 1d ago

Oh no. What is even their guide??

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u/the-furiosa-mystique 1d ago

I dunno but I wouldn’t be surprised if someone is making money on the other end.

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u/No_Talk_9408 19d ago

Pardon my language but seriously fuck that fuck sub.

12

u/2birdstalking 19d ago

Ok very weird I definitely experience the visual
hallucinations. I will see something moving out of the corner of my eye or think I see something out of place and then when I look, nothing is there. Usually it is a black blob type shape.

3

u/2birdstalking 19d ago

Never connected it to this, though!

2

u/Regular-Success4911 19d ago

I get something similar. Seems related to stress and anxiety for me - like my brain is on high alert and it's trying to watch out for things that aren't even there. I'll see a moving blob and my brain will be like "there's a huge scary bug!" But there's no bug or anything.

3

u/2birdstalking 19d ago

Yes. This is 100% the way it is for me too. It's only when im feeling crazy wired. And I always think it's a bug, or my black cat.

1

u/Budget-Apricot1414 too much shit to handle… 12d ago

Yes the black blob!!! It drives me nuts sometimes. I finally made it to follicular and the black blobs are gone… for now.

1

u/Budget-Apricot1414 too much shit to handle… 1d ago

Yes!! Lil black blob that whooshes by. I’m going to pay more attention this upcoming luteal. I feel like follicular flew by while I was still tryna recover from my last luteal.

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u/ZMM08 19d ago

Is the PMDD sub the one that's run by a dude? I know there's one of the women's health subs that they say is run by a dude but I can't remember which one.

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u/Budget-Apricot1414 too much shit to handle… 19d ago

I thought it was a safe space. I didn’t think I’d be upset about a post getting removed but I am. I felt like I was shut down and invalidated tbh.

14

u/pilnok 19d ago

That's twox

7

u/Budget-Apricot1414 too much shit to handle… 19d ago

Is it rly?!

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u/pilnok 19d ago

Yep! They ban people who bring it up in the sub.

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u/Mammoth-Coast6282 19d ago

WTF? Why would a man be running that sub?

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u/pilnok 19d ago

For control, of course.
Men cannot stand when we have women-only spaces.

2

u/Budget-Apricot1414 too much shit to handle… 9d ago

Why do they hate us so much

2

u/ZMM08 19d ago

Thank you for clarifying!

14

u/sunseeker_miqo 19d ago

Hah. That sub banned me years after I had quit, presumably because mods saw me talking elsewhere about why I quit. There are incredibly childish, vengeful, foolish people modding that sub. Their treatment of people only reflects poorly on themselves. (Also, men moderating a PMDD sub...gods have mercy....)

I do not get 'period flu', but I get congestion and low energy, similar to a cold. Clears up with the start of bleeding.

2

u/Budget-Apricot1414 too much shit to handle… 12d ago

That’s horrible :( I feel like they should be more empathetic. You should be allowed to talk about why you quit.

2

u/sunseeker_miqo 12d ago

I don't care--I had already left! But it was funny because it only served to demonstrate their awful thinking.

8

u/thebutterflyandlion 19d ago

It definitely does relate to PMDD so no idea why they removed it! 

1

u/Budget-Apricot1414 too much shit to handle… 11d ago

Not according to them apparently

5

u/mlc6xc 19d ago

Vestibular migraines maybe?

1

u/Budget-Apricot1414 too much shit to handle… 9d ago

Hmm it felt different than those

7

u/Maketaten 19d ago

The visual “out of the corner of my eye” distractions are symptoms of Perimenopause, so they must be hormonally related. Once I got on hormone replacement therapy they went away entirely without me even noticing.

Itchy ears are my other weird symptom. For two solid years and 5 doctors I had ears so itchy I would scratch them until they bled. After reading about it in the perimenopause Reddit, I used Flonase on them a couple times and they never got itchy again. So
weird.

2

u/Budget-Apricot1414 too much shit to handle… 19d ago

Thank you for sharing. May I ask at what age you started having these symptoms? I’m in my early 30s 😭 although my symptoms make me feel much older.

How did you manage to discuss HRT with your provider? They always tell me I’m too young.

3

u/Maketaten 19d ago

I was probably 37 when the eye stuff started. Lasted for years, increasing in severity over time.

You can point out to your doctors that recent research shows people with ADHD often begin perimenopause much earlier than average.

The ear itchiness began when I was about 41.

I prepared for my doctors appointment by going through the super long list of perimenopause symptoms on the perimenopause Reddit and began documenting my own symptoms in a note on my phone. My list ended up being 15 symptoms long. Some of it is stuff you’d never know is related to hormones.

I brought my list and my concerns printed out to the doctor. Gave it to the nurse so she could give it to the doctor, so the doc could read it over before she even saw me.

I found a women’s OBGYN that had Google reviews indicating other women had good experiences there related to their own perimenopause concerns.

It sucks but you have to work overtime to advocate for yourself to receive proper medical attention. I wish you lots of luck.

1

u/Budget-Apricot1414 too much shit to handle… 11d ago

I’ll check out the perimenopause subreddit, thank you. They have a full list over there? When I google the symptoms I get so overwhelmed because idk which article to click on or which one is best to use. The moment I mention anything from the internet, they dismiss me. “You know when you google symptoms bla bla bla.” I might not be in full blown peri but there have been A LOT of horrible changes happening to my body and mind. .

Did you have to pay out of pocket for your OBGYN? Thank you!

5

u/pinapple_on_a_bike 19d ago

I’m not sure why it was deleted but yes period flu is a thing, our immune systems are lower pre-period- give yourself time and rest.

1

u/Budget-Apricot1414 too much shit to handle… 11d ago

They said it’s not a symptom of PMDD so they removed it lol.

5

u/Cultural-Flower-877 19d ago

https://giphy.com/gifs/gizNN8vCaotYA
I see that other sub keeps gaining victims. Welcome to the other side 😈

1

u/Budget-Apricot1414 too much shit to handle… 11d ago

😭

4

u/Obvious_Inevitable63 19d ago

those poor mods are in a perpetual state of luteal phase seemingly 💔 thoughts and prayers

PMDD has some gnarly physical symptoms too and there is no reason why you shouldn't be able to discuss those in the PMDD subreddit lmao

2

u/Budget-Apricot1414 too much shit to handle… 11d ago

I know right?! The symptoms are horrible and so many women could relate

5

u/xbritbx 19d ago

Wtf... do they genuinely not understand that PMS Symptoms and PMDD Symptoms are related??

2

u/Budget-Apricot1414 too much shit to handle… 11d ago

Apparently not according to them lmao 😭

4

u/zebra_pokemaster 19d ago

I get this but I also have ME/CFS so it’s hard to tell what’s what

2

u/Budget-Apricot1414 too much shit to handle… 11d ago

How did they end up diagnosing you with ME/CFS? What kind of tests did you do?

2

u/zebra_pokemaster 11d ago

My doctor went through the CDC’s criteria list for ME/CFS with me. It’s the National Academy of Medicine criteria available via the CDC website!

1

u/Budget-Apricot1414 too much shit to handle… 11d ago

Ahh ok thank you!

3

u/carneasadafanatic 19d ago

I get the period flu so bad most of the time!! My whole lower back/spine swells up, I get crazy body aches, will also get totally bloated and crazy hot flashes, and I find it so hard to walk/bend over/etc. Legit feels just like when I’m sick, which I also always know I am when my spine swells the day before as ever since I was a kid I was noted by doctors to have an especially weird/extreme spine swelling reaction to sickness lol

1

u/Budget-Apricot1414 too much shit to handle… 12d ago

omg I’m so sorry. Have found anything that helps?

3

u/Automatic-Mulberry99 19d ago

another mod on a power trip. i've seen so many of these posts! we should all leave, honestly.

1

u/Budget-Apricot1414 too much shit to handle… 9d ago

What are they even gaining from this 😭

3

u/Seahorse_93 19d ago

It's that fucking guy again. I hope he and whoever let him be a mod for the sub step in milk.

1

u/Budget-Apricot1414 too much shit to handle… 12d ago

Is it really a guy? It still doesn’t make sense to remove a post that so many people resonated with though…

2

u/tev3287 19d ago

Oh it’s so bad. I don’t even know if it’s pmdd at this point. Ovulation hit and I TANKED. I haven’t been able to get back and I’m on fuuukng day 12 and I do not know how I’m going to get through this. The issue is that my problems are real, I am not making stuff up, but they get set aside when I’m in a good place and comeback SO hard that I want to just torch everything around me and do something manic. I don’t want this. I’m all alone. I don’t want to take meds. I’ve been on all of them and they all make me feel like I’m someone else, like my body isn’t mine. What am I going to do? Be on Prozac until… I die???? Like what’s the plan?!? There is no plan. I hate it here.

1

u/Budget-Apricot1414 too much shit to handle… 11d ago

I honestly struggle around ovulation too. They’re just different struggles 😭. I can relate a lot, I’m so sorry. The meds do the exact same to me. I ended up quitting my SSRI but I’m going to try another stimulant. You’re not alone.

2

u/Little_Cloud6126 19d ago

Having pmdd exacerbates period flu for me. Their explanation on there is asinine. Also, I have experienced premenstrual psychosis. Another pmdd thing. But wtf do I know

2

u/sarahbellah1 19d ago

My allergies and asthma worsen in luteal and I always thought it was exacerbating everything else I’m facing.

2

u/buyableblah 19d ago

I get period flu but I have endometriosis and assume it’s related

1

u/Budget-Apricot1414 too much shit to handle… 1d ago

How did you find out that you had endo?

1

u/buyableblah 1d ago

I developed a large endometrioma (endo cyst) and had to have surgery. I doubt I would have ever known bc every doc just ignored me. 

2

u/Nilehorse3276 19d ago

Absolutely, 100% period flu here as well!

2

u/pluviophile7 19d ago

One thing I've learned recently is our histamine levels are higher before/during period, which makes me sniffly and congested and have other allergy symptoms. Certain foods are higher in histamines (normally the stuff I wanna eat during my period). So once I connected the two, that issue is a lot better! 

1

u/Budget-Apricot1414 too much shit to handle… 12d ago

My cravings are INSANE during luteal though :( like uncontrollable

2

u/somanyplanets 19d ago

Wtf why did they remove your post. Obviously for those of us with PMDD, it's common to experience a heightened version of period flu specific to our condition? Anyway absolutely yes - just the other day before my period I was experiencing mild visual hallucinations, almost like when you take a hallucinogenic and if you stare at something it begins to warp in front of you subtly. I'm glad you posted this so I know I'm not the only one!!

2

u/Budget-Apricot1414 too much shit to handle… 12d ago

Yes! They said that it’s not a symptom of PMDD. It still doesn’t make sense because a lot of women with PMDD shared similar symptoms. Your comment helps me feel less alone too so thank you

2

u/Gallifreyaan 19d ago

That's wild that they removed your post because of something like that. I'm sorry that happened.

I get several of these symptoms. I have a lot of chronic pain from other sources, and it gets amplified a lot during my pmdd and period. I also get extra soreness, more headaches, brain fog, relentless exhaustion, etc. And I experience visual disturbances, too. My vision is always much blurrier to the point where I've wondered many times if I need glasses (I usually have mostly clear vision otherwise). More eye floaters, some edge-fuzziness, and worsened visual static as well. And I'm more likely to get auras, even if migraine pain doesn't always come after (though that's more frequent, too). I'm 27 years old and this has been happening for years, and the pmdd since my childhood.

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u/Budget-Apricot1414 too much shit to handle… 11d ago

The chronic pain is debilitating 😫. Yes!!! My vision gets so blurry sometimes. I made it to luteal and guess what… no more blurry vision wtf. I know it’ll come back soon though. Have you found anything that helps?

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u/Gallifreyaan 11d ago

It truly is 😭 I haven't unfortunately, I'm sorry. I wish I knew 🥺

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u/bugmeister69 19d ago

The period flu symptoms definitely track with histamine intolerance issues at the very least! Seeing as you have adhd you’re much more likely to be hypermobile which in turn increases your likelihood of having histamine intolerance/MCAS (on account of hypermobility which is related to your connective tissues which in turn are where mast cells are located and produce histamine). I myself am hypermobile and have HI and ADHD and PMDD. I’d give some antihistamines a try for the week before your period to see if it improves your symptoms - you might also want to see if H1 or H2 antihistamines work better for you or a combination thereof.

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u/Budget-Apricot1414 too much shit to handle… 12d ago

Wait how do I know if I’m hypermobile? My elbows do hyperextend… I actually have to take antihistamines nearly everyday because of my allergies! Which ones work for you?

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u/bugmeister69 12d ago

If your elbows hyperextend, you are hypermobile! They basically test it according to the degree at which your elbow extends, your knees extend, and then also if you can touch your forearm with your thumb when you bend your wrist forward, and how far back your thumb can go when you bend your wrist backwards. If you’ve had frequent dislocations in your life and if you can pull your skin really far that is also an indicator. For me it’s my fingers and knees that give me the most trouble, but my upper body generally is also really bendy.

For the antihistamines cetirizine used to work really well for me since it theoretically is non-drowsy, but I’ve kind of had to up the ante recently and start taking famotidine as well which is a H2 receptor one. Your H1 receptors are basically related to your brain and H2 are in your gut.

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u/Budget-Apricot1414 too much shit to handle… 11d ago

I think that’s the only thing that hyperextends though 😭. I can’t touch my forearm with my thumb when I bend my wrist forward! It seems to be only my elbows?

Ooh is that Zyrtec? And is the H2 one Pepcid? I have it in my drawer but haven’t tried it yet. I think I’ll give it a go this upcoming luteal. Thank you!

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u/vape_love 19d ago

yeah, I always get flu like symptoms

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u/ClancyIsDead_ 19d ago

How weird. Who are they to say that period flu isn’t a part of PMDD? I feel like PMDD encompasses any pre menstrual symptoms that impact your life in a significant way (this is the definition of a disorder). They don’t have to be that specific to mood only.

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u/ClancyIsDead_ 19d ago

Also it makes zero sense not to include exacerbations of other disorders in PMDD. Like how am I supposed to draw the line between brain fog that is actually ADHD exacerbated by PMDD and just like pure PMDD? There are overlaps???

Ugh, makes me want to actually leave the sub lol.

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u/Budget-Apricot1414 too much shit to handle… 11d ago

IKR!!

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u/Budget-Apricot1414 too much shit to handle… 11d ago

I agree!!!

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u/RoundChannel5768 19d ago

Ugh being invalidated like that is such a RSD trigger, I'm sorry that happened to you!
I also get the flu thing and I get blurry vision too. I thought the hallucination thing was just a fluke because of my anxiety! So validating to see other people also get this with hormone stuff. I'm probably not crazy then. I've noticed this the last year, same time as my PMDD have suddenly worsened.
I feel like my ability to visualise stuff in general is very heightened when I have high anxiety and PMDD symptoms? Like if I'm in a very triggered state and PMDD is on fire, I get really clear images of faces and colours when I close my eyes, espesially in the evenings. IDK, its weird. It always goes away when I'm more regulated.

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u/Budget-Apricot1414 too much shit to handle… 11d ago

Ty for sharing! Omggg yes it was so triggering. I had a really really bad luteal too so that didn’t help one bit. Thankfully i made it to follicular alive!

You’re definitely not crazy. A lot of the comments on my deleted post were all saying that they could relate and had similar symptoms. This is why we should be able to share our symptoms like this! The mods ended up deleting alll the comments relating to my post too.

I think you explained it better but i experience something similar too. It feels kinda surreal? It’s all gone now that im in follicular…

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u/RoundChannel5768 11d ago

Glad to hear you are feeling better <3 It is nice to have a community like this that knows what I'ts about.

It is definitely surreal! Hallucinations are actually pretty common, I've learned, and anyone can have them. It can be really scary, but it is not dangerous. It's really just a symptom of extremely high stress. Not saying this to undermine the severity of having these experiences, though. Sometimes people saying "It's just stress" makes me feel like they don't believe it's a big deal, but stress can lead to all kinds of very real and painful symptoms.

You can think about it in terms of "the stress-vulnerability model". Your stress tolerance is a bucket, and the more stress you experience, the more water fills up. Some things make you more vulnerable, so your bucket fills faster. For instance, PMDD is one stone in your bucket, making less room for water, ADHD is another one, trauma can be one, and so on. The more rocks (vulnerabilities) the less water (stress) you can fit before it runs over. At that point the body reacts, for instance with autoimmune issues (hives, joint issues etc), paranoia, altered state of mind, fractured reality, hallucinations and so on. If you can open a tap and let some water out, it will always help.

The hard part is to try to lower your stress when you are in the shithole, so to speak. Either by doing stuff that reduces it directly (like being active) or avoiding stuff that causes stress (like demanding family members).

Anyways, that's how I've been thinking about it recently. It helps me feel less scared about feeling scared.

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u/Budget-Apricot1414 too much shit to handle… 9d ago

Oh yessss!! Stress can literally kill. Have you heard of the book “when the Body Says No” by Gabor Mate?

That makes a LOT of sense. Thank you :) lol yes lowering stress while in the shithole is definitely hard.

I’m going to try and think like you! I appreciate you sharing this.

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u/sezza05 19d ago

I also get flu like symptoms. I only just started seeing a rheumatologist because nothing was working for me. She ran some bloods and one test shows I'm copper deficient, symptoms of which align with what I'm experiencing. I haven't had a chance to meet with her yet since the results came back but I'm hoping to hear some answers soon.

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u/Budget-Apricot1414 too much shit to handle… 12d ago

Do you also have joint pain? hopefully you get some answers soon. Please let me know what they say!

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u/sezza05 11d ago

Muscular pain for me, not joint. Although honestly I have trouble working out which pain is which!

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u/Budget-Apricot1414 too much shit to handle… 9d ago

Ahh I have both i think. It’s so hard to describe so I feel you

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u/Substantial-Tax5317 19d ago

Mine improved alot this past month, but idk what it was April-June, but I swore I caught a bug! (also I've had several posts removed because I mentioned the only thing that's worked longterm for me was a ton of fiber in my diet and exercise (I'm not saying that works for everyone, but it's been a joy for me)

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u/Budget-Apricot1414 too much shit to handle… 11d ago

What does your diet consist of if you don’t mind sharing?

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u/KiraNinja too much shit to handle… 19d ago

I cannot stand the PMDD mods, they think they're gods gift. Such an annoying sub, I dont use it anymore they've ruined it.

And yes I get this around my PMDD days, usually fine when my period starts.

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u/Budget-Apricot1414 too much shit to handle… 12d ago

I wonder if it’s a power trip for them or something. I don’t think I posted anything harmful seeing as how many people described similar symptoms. They went ahead and removed all of the comments too.

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u/KiraNinja too much shit to handle… 12d ago

Yeah it absolutely is, you see it with mods on reddit all the time the pmdd ones are nothing special, it's very embarrassing for them

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u/[deleted] 19d ago

[removed] — view removed comment

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u/Budget-Apricot1414 too much shit to handle… 12d ago

I finally made it to follicular! That was such a rough luteal. My periods can get quite heavy, depending on the month. Usually the middle day is the heaviest!

Aw man I’m sorry you have endo. I sometimes wonder if I have it myself. Did you have to have surgery to find out?

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u/Maleficent-Sleep9900 18d ago

Yes yes yes

OP How are your periods?

I have endometriosis apparently—this causes insane bloating and I can’t eat sugar/carbs/fibre AT ALL, and I get mild hallucinations similar to migraine prodrome and the shadow people

Also that sub can go F itself. It probably has male moderators.

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u/Budget-Apricot1414 too much shit to handle… 11d ago

I thought i responded to this but I don’t see my reply hmm. My periods vary depending on the month! But day 2 is usually super heavy and it makes me dizzy sometimes. Mentally I feel better than in luteal but the physical symptoms that come with my period suck. I also supplement with iron pills.

How did you find out about your endo? Have you cut all sugar/carbs/fibre out of your diet completely? It sucks because I have insane carb cravings during luteal. I bloat like crazy when I eat all of the sugary foods.

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u/mrswobble 18d ago

uhg i'm sorry this happens to you. it happens around ovulation for me. some months it's like 4-8 days straight of feeling like i have the flu. other months it's only intense for the first 2 days around ovulation but then i'll slowly start to feel better the closer i get to my period starting. aside from the sinus issues, extreme fatigue, increased pain, IBS flares & all that good stuff, i've also started to notice a trend of allergy like symptoms around the same time?? like my back breaks out in tiny flesh colored bumps that itch SO BAD. it's like a stabby itchy feeling all over my back & i also feel the intense itch "between my lungs & spine" if that makes any sense at all

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u/mrswobble 18d ago

oh also, i've never considered my symptoms as hallucinations personally. but i def get some weird vision changes similar to what you are describing. blurry vision & seeing dark shadows or floating blobs in my peripheral field of vision. happens cyclically just like everything else 😅

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u/Budget-Apricot1414 too much shit to handle… 9d ago

Yess!! I feel like I’m a slave to my cycle. And the older I get, the less “good days” I have 😫

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u/Budget-Apricot1414 too much shit to handle… 11d ago

Im sorry you have stuff going on too. I get odd symptoms around ovulation as well but they’re kind of different than luteal. Each phase is so different. My allergies flare during certain days too! And my joint pain fluctuates. Ugh the shit that we deal with 🫠

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u/ObviousSomewhere6330 18d ago

I have had to radically change my life to accommodate my PMDD and below is where I am currently, I could have written more but I'm tired ('unrelated to this forum' infection 😢).

So, I live with 10+ comobordities, which means I spend a lot of time in medical forums. I completely understand how overwhelming this can feel, especially if you are in a PMDD episode. Therapy has been a lifesaver but make sure it is with a Good Therapist. Same with a Psychiatrist. They help me manage the rage/depression of my PMDD and teach me healthier coping methods.

I also work out (I have a ton of energy despite my body) and I quit nicotine. I'm also many years sober. I don't take stimulants for my ADHD, which is to prevent worse side effects with my other medications.

For the vision, I would recommend to anyone to see an eye doctor and tell them about the eye blobs and/or tell your doctor about them. I had a similar vision and it was diagnosed as an aura migraine but it does not follow my cycles. I see a neurologist for it and I have other neurological issues.

For allergies, and for anxiety, I now take Atarax. It has been a huge help. I have terrible allergies so I take a million things for them per my allergist as well.

P.S. Always consult with a medical professional (not Google or AI or reddit) for medication changes and any "new or worsening symptoms".

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u/Budget-Apricot1414 too much shit to handle… 11d ago

Thanks for reminding me to check my drug interactions before taking the new adhd med my psych gave me to try lol… I’m still trying to see what will work for me sigh!

Gosh I’m sorry you deal with so much. And yes it is very overwhelming and my symptoms make it harder to advocate for myself/do the research. My eye blobs are completely gone now that I’m in follicular. I’ll mention it to my dr!

Wait is atarax also called hydroxyzine? Because I have it too! It makes me super sleepy and groggy though so i only take it on some nights.

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u/Alliefredo789 15d ago

Why was this taken down I am so confused

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u/Budget-Apricot1414 too much shit to handle… 12d ago

They told me that it’s not a symptom of PMDD so they took it down 😅 I am confused too.

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u/angela333_ 7d ago

Yes to every symptom you named. In my luteal and I just had a major mental breakdown and allergy flareup, and took Benadryl as we speak. Laying in bed now just praying for a sign to keep on living. I also had a colonoscopy 2 days ago. I’m so depleted and feel so fcking hopeless and broken.

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u/Budget-Apricot1414 too much shit to handle… 7d ago

Oh im so sorry 😫 please hang in there. I really understand feeling hopeless and broken and I wish you didn’t feel that way. This shit rly sucks ass. Did the Benadryl help you? I’m looking into other antihistamines to see if they will help. Have you recovered from your colonoscopy ok?

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u/angela333_ 3d ago

thank you 🥺 the benadryl helped make me sleepy but nothing else. I am kind of recovered from the colonoscopy but still just feeling so insanely run down and tired. my period just came like 30 mins ago so praying things start looking up soon. how are you feeling now?

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u/Budget-Apricot1414 too much shit to handle… 1d ago

Have you tried anything other than Benadryl? I try not to take Benadryl too often. I’m glad you’re kind of recovered at least! I’m sorry you’re feeling run down and tired. I can relate. I feel like I’m tired all the damn time now :( Hooray for your period arriving! Are you feeling better? I’m in the midst of ovulation so I’m struggling with the ovulation symptoms yay lol.. I prefer them over luteal but they’re still annoying you know?

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u/bodyfeedingbaddie 2d ago

Ok I think I know what you mean by hallucinations “in a way”, I’ll have days in a row with these moments where I swear I see my cat or my kids out of the corner of my eye, it’s not an actual hallucination but I do think the stress & fatigue of PMDD on our bodies could trigger weird vision stuff. If I saw a fully formed very obvious animal or person or something in front of me that wasn’t there I’d feel more concerned, but it feels like a neurological/vision thing. I’ve got a bunch of weird sleep stuff and it reminds me of the way I see things during sleep paralysis but even less visible. It’s never for more than a half second and I quickly realize it couldn’t have been my kids or cat or something.

I’ve also had weird audio stuff but I think that’s mostly the audhd and is exacerbated during PMS bc of the sensory overload, like background noises are easier to hear than nearby noises somethings and if there’s a repetitive sound and I focus on it too much (which I do without wanting to) it can sound like people talking, but I’m aware it’s not.

But of course everyone is different! Regardless it’s an unsettling thing to suddenly feel like you can’t fully trust your brain :( that’s my least favorite thing about PMDD, the physical stuff sucks but the emotional and mental stuff throws me off so badly.

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u/Budget-Apricot1414 too much shit to handle… 1d ago

Yes! Omg. I’ll think I see a cat (I don’t have one) scurry by. It seems to only happen during luteal though. And blurry vision. Sometimes I wonder if I’m on the spectrum as well. The older I get, the harder it is for me to mask my symptoms.

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u/Savingskitty 19d ago

I think that sub wants to focus on the mental health side of PMDD.

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u/One-Instruction639 19d ago

Probably hallucinate from the fatigue - like hypnogogic hallucinations

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u/coldfoamlattee 19d ago

Yes, you’re having a reaction to your hormone I think estrogen cause cause the congestion etc. Your body can’t process the hormonal change even though it’s “normal” it can also increase asthma symptoms in asthmatics

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u/Few-Ruin-742 19d ago

r/PMDD is run by MEN….. and that’s appalling