Help for PMDD - DD is autistic and really suffering

[EachPeachPearPlums]

Hi, wondering if anyone can help. DD (20 years, she is autiHD) has always suffered terribly with her periods. She will be fine for a couple of weeks then suffer from awful PMS symptoms, extreme moodswings, self-harming, meltdowns, even feeling suicidal etc. It is COMPLETELY correlated with her menstrual cycle. She can't take the pill as she suffers from visual migraines - GP totally refused to prescribe it a few years back for her acne as there is a risk of clotting. DD has been back to GP to try and explain her symptoms and they were really unsympathetic and made her feel like a hypochondriac and she was really upset. She was offered the coil but she doesn't want to go through with this as it is painful and her pain threshold is extremely low. Also it makes her feel queasy just thinking about it! Can't go with her to GP as she is at uni quite far away and anyway she wouldn't want me there 🙃

They have suggested anti-depressants but just to take them for 2 weeks per cycle. To me this seems weird as I have been on so many anti-depressants over the years. And if I missed a single dose it would make me really ill. Also it took a while to get used to the dose and I had to build up over 3, 4 weeks. Also she has has very bad experiences with ADs in the past and CAMHS said she shouldn't take SSRI's as they don't agree with her.

DD has read that increasing protein in her diet (she is vegan) can alleviate the symptoms but it doesn't seem to have made much difference. Is there anything else that can be done? Any natural remedies / supplements? She said to me that the only option apart from the above is to have a hystorectomy - Obviously this would not be great for a 20 yr old who wants kids one day. Thank you 🙏

The progesterone only pill is suitable for people with migraines.

Sympathies... I'm also a PMDD sufferer and am looking at a hysterectomy. Agnus Castus and/or 100mg B6 pyridoxine are the recommended supplements for PMDD.

Agree with the previous poster - progesterone only pill, contraceptive implant and contraceptive injection all stop ovulation and safe for people with migraine with aura.

A copper coil doesn't stop ovulation so would be no help at all. The Mirena coil only stops ovulation in 20% cycles so wouldn't recommend that also.

Does she definitely have migraine with aura (eg visual loss, problems with speech) PRIOR to headache. Normal migraines are not a reason to not use combined pill.

A contraception/sexual health clinic may be a good place to try.

This!!!

https://uk.style.yahoo.com/pre-menstrual-dysphoric-disorder-suicidal-090034105.html

I just read this yesterday. It may have some advice

Cerazette?

The GP needs to refer her to a gynaecologist. Menopause specialists should also be able to treat and manage PMDD. Using SSRIs for two weeks is an accepted regime, odd though it sounds.
She needs specialist help.

Yes definitely migraine with those symptoms beforehand. Sometimes just those symptoms without an actual headache.

I really want this to happen. I was surprised the GP didn't refer to gynecology as her symptoms are so extreme. She isn't very good at advocating for herself in GP appointments at all. As I say, I wish that I could have been with her in the appointment. It is so so extreme what she is going through.

Thank u I will have a read. It is dreadful to see DD like this 😪

I'm so sorry you have it too. It's awful. It is so extreme I think that people think it just PMS but it is so much more than this.

If any body has done the 2 weeks on, 2 weeks off with antidepressants and it worked please let me know!

This is amazing! Thank you! Her doctor absolutely said no contraceptive pills at all allowed so I guess the GPs were wrong?? Thank you

Progesterone-only pills are generally not recommended for women with PMDD. Progesterone can make symptoms worse.

This - I have PMDD and progesterone makes me suicidal.
If it's tried as a treatment you must keep a very close eye on her.
I take escitalopram which helps. No cure but it definitely helps.

I tried it but felt continuous use worked better

It's also suitable for people who might clot too. So is the depo injection

I’ve just advocated for my autistic daughter with probable pmdd, this week. At the risk of irritating the GP by listening more to me than her, I managed to persuade him of the seriousness of the situation.
2 types of pill made her suicidal so we need something else. I made a big thing that we need a gynaecology referral which we’re now waiting to come through.
No other advice. DD is also addicted to nicotine and caffeine and has a very restricted diet so can’t help her diet wise much.

Progesterone-only pills are generally not recommended for women with PMDD. Progesterone can make symptoms worse.

that's not entirely true. It can be for those people who are sensitive to progesterone. On the other hand if you're over sensitive to oestrogen fluctuations it can be a miracle cure. The only problem is you don't know until you try.

@Diskobobulated

FFS. I said that they are generally not recommended,* *which is true.

From the NICE guidelines:

Treatments not recommended for initiation in primary care:
Progesterone and progestogens
There is good evidence to suggest that treating PMS with progesterone or progestogens is not appropriate [BJOG, 2016].

There is no evidence to support the use of Mirena® alone to treat PMS symptoms [BJOG, 2016].

https://cks.nice.org.uk/topics/premenstrual-syndrome/management/management/

The thing that stood out to me is that she is a vegan- From personal experience, increasing her iron, protein, and b vitamins may help, alongside extra protein and carbs.

I have same things as your dd, i have used cerezette and also the injection.
i cannot have the other due to clotting snd migraines.

the recommended pill for pmdd is Eloine. I’m not sure about that with migraines?

During my 30's, when my periods were at their worst, I was prescribed a low dose of diazepam to take, just for the couple of days before my periods. It was very helpful. I do get migraines and it didn't make them any better or worse.

AuDHD, and my PMDD improved with regular reflexology, it was specifically fertility reflexology from a degree-trained acupuncturist. Although this was part of a fertility journey, I did it for over a year before TTC just to help me cope with the hormonal illness. I also benefitted from high-quality (high DHA and EPA) Omega 3 oils, Vit D3 and methylated folate. Methylated is often better for those with AuDHD who tend to have the variants of MTHFR gene mutations. I also focused on gut health with more fibre and probiotics. Diet change, sleep, fresh air, having a self-care basket (meds, comfort items) so everything was ready and I felt more in control with a plan, taking more rest and taking pressure off during those times. I'm not so sure for a 20 year old, but my body felt better limiting my eating window (i'm a healthy BMI) helped to reduce inflammatory symptoms associated with PMS which made PMDD harder, so I didn't eat the first 2-3 hours of the day most days. I would listen to my body and eat what I wanted when I needed it. A lot of it has been about trying to tune in to myself physically and emotionally, as being AuDHD I was naturally quite disconnected and confused by all of that.

I talked to a gynae about taking prostap injections to shut my system down for a while for some respite, although I took it at a different time for another reason, I had no adverse effects. I never coped on the contraceptive pill, but thus far have been OK after this.

It seems to be more common with ADHD and ASC, although I'm not sure that it would affect treatment, probably because there's no support for any of it really. It got increasingly bad since I turned 30 but I seem to have improved things for now. I still have bad days every single, but it's more manageable.