Perimenopause, HRT and epilepsy

[Gladderbladder]

Is anyone else navigating perimenopause alongside epilepsy?

I'm mid-forties and have adult-onset epilepsy (likely temporal lobe epilepsy), the symptoms of which began at the same time I started using HRT a few years ago. I’m convinced the two are related (although my neurologist isn’t). I was taking 1-2 pumps of Oestrogel daily, and the patient leaflet says it can cause seizures in women with epilepsy. Maybe it can actually trigger epilepsy if you have a predisposition? Oestrogen is known to reduce seizure threshold.

Anyway, I came off HRT (my decision, just in case), began anti-seizure medication, and have been seizure-free for nearly 18 months. I hope to soon reapply for my driving licence and get some normality, freedom and independence back, which is very appealing. It’s been a tough few years.

But I’m now struggling with what I think is perimenopause again (frustratingly, the neurological symptoms can overlap with epilepsy and anti-seizure medication side effects – brain fog, lack of concentration, forgetfulness – but I think it’s perimenopause). And so I’m wondering, very cautiously, about trying HRT again under careful supervision.

But I can’t find a consultant who has both neurology/epilepsy and menopause/HRT specialisms. My (male) neurologist doesn’t seem to have much of a clue about women’s hormones. And I don’t want to see a generalist menopause doctor who won’t know about HRT’s interplay with epilepsy and anti-seizure medications.

I’m struggling with irritability, brain fog, poor concentration, lack of interest in things, tearfulness, rubbish sleep, low energy, flat mood, thinning hair and more. I want my mojo back. I need it back so I can not be a flake at work and perform well enough to keep my job! But I don’t want to risk a breakthrough seizure, with its inherent dangers, and be back to square one in terms of getting my independence back.

If anyone else out there both has epilepsy and is going/has gone through perimenopause, I’d really value hearing how you’ve got on. Have you sometimes found it hard to distinguish between what’s causing which symptoms? Have you taken HRT while keeping your seizures under control? Can you recommend a consultant with dual expertise? Or if you’re someone who can’t take HRT for other health reasons, have you been able to effectively address your perimenopause symptoms in other ways?

Thanks so much.

No I’ve not got epilepsy, but with your symptoms I’d be asking if you’ve had your thyroid, B12 and iron checked recently to begin with.
Then I’d ask if you can take magnesium glycinate for sleep.

Thanks for posting, @DustyLee123.

My thyroid has been checked recently and is OK. I’ve always had issues with low ferritin but have finally found a supplement I can tolerate (digestively) in low doses, and have managed to double my levels from 26 ng/mL in July last year (iron deficiency) to 51 last week, so that’s heading in the right direction. I need to get a few months into 70+ to see if that’s what’s causing my hair to thin, so I might get there by the summer.

I take magnesium glycinate before bed, although could up my dose. I have to be careful because I have IBS-D so my gut is easily irritated.

B12 is the only thing I haven’t had checked, and beyond what’s in Menopace (9 ug), I’m not supplementing. Is it worth supplementing that more anyway, or should I test first?

Thanks again.

For brain for you could try Magnesium L-Throenate, but be careful uou don’t take too much mag with what you take at night. I found it helped my brain fog. Or you could try lionsmane, some people swear by it.
For low energy I’d take vitamin b complex.
As you’re peri I’d be taking vitamin D3 with K2 for bones, and a good omega 3 if you ache.
It might be worth ditching the Menopace and going individual instead.
If you’re not wanting HRT, it might be worth asking about a mild antidepressant to give you a lift.
And I’m considering trying a hair tonic for hair loss. That Plantur shampoo is said to be good, but I found it dries my hair. I’ve seen nizoral shampoo mentioned, but you have to leave it on 5 minutes

I’m recently diagnosed (45, two seizures 11 months apart) and am being a bit of an information hoover. Which is pretty pointless as I can hardly retain any of it 🤣 BUT I do think I’ve read somewhere that B vitamins are bad for epilepsy either because they lower the threshold or because they interfere with lamotrigine. Very vague, sorry, but worth checking before you start increasing your intake of anything. Epilepsy sucks.

Hi, I was diagnosed with primary generalised epilepsy when I was three years old.
I’m also on HRT, after breaking my wrist out running with the dog ( he got under my feet). The HRT cuts down the comments about having a DEXA scan.
Whilst I appreciate your comment about oestrogen, the effect of estrogens on seizures are contradictory and it seems more research is needed to determine under which conditions estrogens have a proconvulsant effect and when the estrogens may have beneficial action.
….and as epilepsy is underfunded as a neurological condition regarding research, we could be waiting for a while.

What effects did the HRT have on your epilepsy? Did you feel it caused seizures?

If you can go back on HRT it might be an idea to keep a diary to show to your neurologist.

I take myoclonic seizures and once when I felt under medicated I kept a diary of my periods and whenever I had clusters of myoclonic seizures. It took a while but, they changed my medication combo.

Sorry Im late to this post and I hope everything is sorted by the time you read this.

Regarding the HRT and the seizures loads of meds say they cause seizures, even seizure meds. I doubt your neurologist is going to commit to anything relating to the onset, unless it is obvious because around 70% of us really haven’t got much of a clue. Mine could have been a number of factors including pure chance.

Hope things are sorted by now.