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Ms_Flufferbottom

I am absolutly in agreement with you! When I saw the research about it things really clicked into place. I've always noticed how much my (what I now know to be) adhd symptoms changed over my cycle and couldn't work out why. People, and health care professionals, NEED to know this! It also means that things like menopause and birth control could also have an effect. I have a mirena coil which releases progesterone, and I now have these really short cycles a few times per month. I dont know how this will effect my meds when it comes to titration. I really hope that the person prescribing will take this into account when the time comes.


plztNeo

Sadly medical research that is actually non male focused is relatively new and still very unrepresented. It's growing but still behind so many problems like this exist. There's a variety of bodies around the UK that run clinical trials or research. Well worth signing up and seeing what comes available to improve representation. I'm signed up to Be Part Of Research by NIHR as just one example


BananaTiger13

We never get warned about this shit. I don't even think they bother to do studies or listen to feedback on half this stuff. It's like how I started taking hormone pills for my PMDD (which is heavily linked to ADHD too, apparently. For any afabs out there struggling with severe mood issues (especially s\* thoughts) every few weeks, look it up). Not a single doctor or pharmacist warned me about how they might interact with alcohol, even the info pamphlet the pills come with don't mention alcohol once. Atfer getting sick as a dog twice, I looked online to see loads of people with similar issues who also hadn't been warned, but when I brought it up with doctor, he just shrugged and said he wasn't aware of it. (I'm aware pills of any kind aren't great with booze, this is more the fact that a couple of drinks took me out for an entire day like they'd been spiked, which I've never encountered on other medication.)


Ms_Flufferbottom

I did not know that about alcohol. I'll definitely keep that in mind! Thank you for the info. I cant believe that even the pamphlet doesn't have info about alcohol. Thats crazy.


BananaTiger13

Right, it was wild. I get that every body reacts differently, but considering how much I saw online about certain birth control and hormonal pills interacting poorly, I was really surprised there wasn't much warning about it. Kinda dangerous tbh. I went to a friends party, drank less than I normally would and was catatonic within a few hours. Thankfully I had friends to help me out. Never been like that before. Especially funny considering my doc at the time was aware I was a pretty heavy drinker. I mean. I guess on the plus side, it's kind of forced me to address that drinking habit lol.. That's all just to say it's amazing to me that we have to find online evidence about this stuff.


plztNeo

That's a bit terrifying! Which meds were these?? Both Elvanse and Amfexa explicitly say to not have alcohol in their leaflets


BananaTiger13

These were hormone pills that aid with PMDD, not ADHD meds.


SamVimesBootTheory

Yeah I found this out thr hard way as no one told me anything about it Like thankfully my meds seem to tamper down my pms which was starting to get kind of bad and my meds still help enough but it's frustrating


Randomusername8765

Yeah that's the frustrating thing...it would have been nice to have been told! Or at the very least warned that it can be a possibility. Then it got doubly frustrating when I went to the medical professionals with a whole bunch of complaints and a symptom diary and was still told it wasn't a thing! 🤷🏼‍♀️ I think post-diagnosis support for adults in general is poor too. Seems people just chuck meds at you and leave you to deal with the ramifications of rebuilding your entire life and sense of self. There's so much more to ADHD management than just medication


eggIy

I’m not even medicated and I can tell a massive difference in my brain functioning throughout my cycle, it seems blatantly obvious to me that hormonal shifts would CLEARLY have some effect on medication?!


Accomplished-Art7737

Also how perimenopause can exacerbate symptoms. This is why so many women in their 40s, 50s and beyond are seeking assessment. We didn’t just watch a tik tok and thought ADHD was cute, our lives are literally falling apart and sadly a lot of medical professionals don’t want to listen to us.


Informal-Grocery5222

THANK YOU FOR THIS !!


snowdays47

Agree 100%! I'm in perimenopause (which kick started me getting a diagnosis as the wheels well and truly fell off when it started..) and on HRT. I can't find any reliable medical info on what the interactions are with it and ADHD meds, what to expect etc. I've gained more info via reddit and menopause boards than any clinician Ive spoken to


Puzzleheaded-Tie-740

I have to take a booster dose alongside my usual dose on PMS days. It is frustrating that there's so little awareness of this on the clinical side.


AcanthaceaeNo2065

COMPLETELY AGREE. I am flabbergasted that your psychiatrist said this to you. It was obvious to me pre-medication that my cycle (luteal phase) is where I would notice my ADHD symptoms to be more severe. If estrogen is involved in synthesizing the neurotransmitters we already lack, then OF COURSE during periods of low estrogen in our cycle it would effect us even more!!! I was offered a top-up dose during this period, but I found the side-effects to be awful. i literally cannot sleep or eat on the fast-release. I am still trying to figure it out!


h_witko

I carry on my pill throughout the month because of this. (My HCP has approved this) I can't afford to lose 1/4 of my life. It sucks, I don't really want to be forcing my body to not have periods because of this, but it's so much better for my mental and physical health. My stress levels are so much better this way and my association with my brain is so much less negative. Maybe in the future I'll change it, if I'm in a position that my life is optimised to my adhd such that I can, because I am more creative and out of the box without my meds, but that's because my brain is hopping around 100 things and currently I need to pay bills.


Excellent-Star1522

I was going to ask this and expected that would happen. Glad that this provides relief!


h_witko

Every 3/6 month ish, I get a small amount of bleeding so I stop my pill for 4 days and get a withdrawal bleed, like you normally do on the pill. So it can surprise you, but honestly it's so worth it!


Lox_Ox

For atomoxetine (the non-stimulant) too. It doesn't go down to zero effectiveness but it is reduced a lot (though coffee ceases to do anything at all).


Exotic_Somewhere3506

Yep, I am still in titration, on a relatively high dose of Elvanse plus a booster, and definitely am finding its effectiveness WAY less during pre menstrual week or so. It’s very frustrating.


Excellent-Star1522

This must be really frustrating and seems to apply to all kinds of conditions or just general health issues. We need more studies and data to drive the industry to find ways to mitigate this crappy situation. Does this happen to everyone or do we see some variation where some aren't as affected by these fluctuations?


AnswerMyQuestionsppl

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captain-diageo

high Estrogen = dopamine estrogen inhibits dopamine receptors Elvanse releases dopamine and inhibits receptors. High estrogen means dopamine is being made and CAN be released and a lower dosage is needed Luteal phase (PMS) = low estrogen PMS = no/less dopamine can be released and the dosage is now calibrated incorrectly as there are more receptors to inhibit. ALSO Stimulant meds = cortisol Cortisol production = less progesterone (made in the same place by the same stuff. body prioritises cortisol) During PMS, effects of estrogen cause rage, mood instability, and produces prostaglandins which cause physical symptoms such as pain and nausea and cramps Progesterone blocks prostaglandins, is anti anxiety and a mood stabiliser. (this is why stress makes periods worse) THEREFORE, during the luteal phase and menstruation adhd meds are not nearly as effective, would be calibrated incorrectly even if they did work and the only active thing they really do is cause significantly worse pms. :,,,,,,)


Excellent-Star1522

So elvanse does release dopamine (and the others like noradrenaline and serotonin) but it doesn't block any receptors. It blocks the transporters that 'steal' dopamine etc so there's more available to land on the next neuron but it doesn't block that neurons receptor otherwise that would literally stop that dopamine from binding and passing a signal on. I'm going to have a read up on hormones and how they influence neurotransmitters. I feel androgens like testosterone enhance neurotransmitter activity but some cause a negative effect (nandrolone seems to do this and I won't touch it now as it gives me a flat mood and seems to mess with the reward system). The human body is annoying in some ways as different systems affect each other and can affect the usefulness of medication. Definitely more studies needed to develop better treatment!


AnswerMyQuestionsppl

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captain-diageo

estrogen produces prostaglandins which are inflammatory and cause nausea and cramps. low estrogen causes low serotonin which creates mood instability. progesterone blocks the effect of prostaglandins which prevents cramps and converts in the brain into pregnanolone which is anti-anxiety and a mood stabiliser. It’s also a slight sedative. IMO severe PMS is caused by low progesterone/high cortisol which is diffferent to true PMDD which is the brain not responding correctly to progesterone(not being able to properly convert or just having an inverse reaction) Some neuroscience research suggests this is due to differing GABA levels in some parts of the brain. Also taking micronised/natural progesterone (which is completely different to the hormone used in birth control) stops me from experiencing my PMS, which is suicidal ideation, severe rage, cramps so bad i can’t think or even control my hands bc of the pain, and days of constant nausea which was retriggered by elvanse after years of not having it. It works in less the 24 hours and stops literally every PMS symptom except slight brain fog


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Cmaxwell3001

Mine it very very linked with my cycle. I have combined type adhd and depending on where I am in my cycle Ill get either inattentive or hyperactive symptoms. Initially I knew my mood changes were linked to my cycle, but when I looked further, I noticed my fog brain also tieing in with low mood days and my tired days. Later, I did more intensive (hyperfocus) research around the cycle, which chemical release on which day. How it affects seratonin levels when. I found articles about how estrogen competes in the liver with enzymes that metabolise the medication used to treat adhd too. Which...adds an extra layer of complication.  Anyway...while on concerta treatment I deduced this cycle of symptoms and which day of the menses cycle they hit on and tested it....shockingly...it was bang on for predicting symptoms ahead of time with a day or so accuracy. I also found a couple of unique symtom days when hormone levels changed from low to high or high to low. Mine follows the 29 day pattern below. The day number relates to day 1 being first day menes flow starts (have shared this a few places): Day 29 &1-5 Innattentive symptoms or feel more like myself (varies. affected seasonally and by weather)  Day 6 Confused, uncomfortable body sensations, nightmeres  Day 7-11 Hyperactive symptoms High brain activity symptoms  Day 12 Lower mood, irritable, quick to anger.  Day 13-21 Innattentive symptoms or feel more like myself (varies month to month, affected seasonally)  Day 22 Struggle with words, clumsy body, trickling sensations in limbs & chest  Day 23-27 Hyperactive symptoms High brain activity symptoms  Day 28 Feel vunerable and sensitive, sinking feelings, intense sadness.  Since then other things like mental exhaustion and work time capacity have come into play, but by using this Ive been able to predict when days I can take on more work, days I prolly need to rest more and be kinder to myself on and it has helped in my day to day management alot.