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[fionamarg]

I am fit healthy 59 yr old with no PMH who start transdermal oestrogen 50mcgs May 21 with great results. Unfortunately though , due to bleeding had to have hysterectomy & removal of ovaries last Nov 21. Uneventful post op recovery.  Recommenced patches but under specialist advice because of deteriorating mood, headaches  & low libido advised to increase oestrogen dosage to 75mcgs & at same time started Androfeme 1%( Testosterone) cream - the latter with great results.
Out of the blue within a month of this my husband noted that I started to have sleep seizures. I remain asleep throughout & have no awareness or memory of them after. He made video which we have shown to GP & neurologist who has diagnosed this as epilepsy. MRI scan normal and EEG normal so cause remains unknown though the HRT is being suspected and my GP is currently trying to access more specialist advice for me.
Just wondering if anyone has come across this as medical professional or has suffered this as a patient themselves. I am really struggling to get help & move forward & because of the benefits HRT has given me ( including the Testosterone)I really do NOT want to come off it. Any advice, help welcome. Thank you

[CLKD]

How awful.  Why is HRT being blamed  ? 

MayB send an e-mail to Dr Currie who runs the Forum, there is a charge. 

Interesting condition though distressing for you.  MayB keep a mood/food/symptom diary to chart progress as well as DH making notes too.  It is un-usual to begin both HRT and testosterone at the same time - were you referred to a menopause clinic for the latter or is your GP prescribing off ? oh searches for word  ? 

Let us know how you get on. 

[CLKD]

Have a lookC at "epilepsy.org.uk" which has a section on menopause.

[Marchlove]

Hi fionamarg

Welcome to the forum! How distressing for you especially as otherwise you are doing so well in the hrt.

As CKLD says it’s unusual to start testosterone at the same time as estrogen, usually it’s advised that you wait 3 months

You could perhaps try stopping the testosterone for a few days and see if it makes any difference?

Hopefully someone more knowledgeable will be along soon. xx

[CLKD]

MayB have a lookC at :

Endocrine Abstracts (2010) 21 P330
Steroids

Cyclical epilepsy associated with testosterone replacement
Acharya Jayashekara & Daniel Flanagan



Introduction: High testosterone level lowers the seizure threshold in patients previously well controlled on medication.



About Endocrine Abstracts
Endocrine Abstracts exists in print (ISSN 1470-3947) and online (ISSN 1479-6848). In print it provides conference organisers with an official conference abstract book. Online it provides a permanent, citable record of abstracts of presentations at key conferences in endocrinology.

To accompany Endocrine Abstracts, we have a simple and robust online abstract submission system, which can be tailored to the specific needs of a client. In conjunction with Endocrine Abstracts, we can handle the entire process, from abstract capture and abstract marking, through to publication of abstracts both in hard copy and on the web.

Endocrine Abstracts has been designed and developed by Bioscientifica.

[CLKD]

Was there any sign of cyclical 'seizures' previously?  What made your husband notice ..........

How soon will any investigations be instigated? 

[joziel]

Very interesting. Can you not just ask to try stopping only the testosterone and continuing the estrogen by itself - and seeing if the seizures stop? It seems awful to stop everything cold turkey when perhaps you only need stop one...

And were your bloods tested on the testosterone to be sure they were within normal female range?

I think you could definitely find a doctor who would be prepared to work with you to keep you on HRT, at least the estrogen. Louise Newson talks about 'patient led' care. And about how doctors should be ensuring patients know about the risks and the benefits of any choice, but if they are fully aware of the risks and the benefits, they should be able to make an informed choice about what they want.

[fionamarg]

Thank you all for your replies.
Just to clarify- I did not start oestrogen at same time as testosterone but my transdermal oestrogen dosage was increased from 50 to 75mcgs at same time as I started testosterone. I am working with “ Newson Health ” & interestingly I have since discovered they also have nothing written on epilepsy on either their website or Balance App. I have gone back to them this week though & specifically asked if any of their clinical directors of menopause specialists have any experience of this and/or can direct me to more specialist help. Awaiting a reply.

Have had blood tests done in the last month & actually those would normally recommend increasing oestrogen & testosterone dosages again though GP  deliberately holding off until I can access more specialist advice. Fearful that changing/ stopping HRT dosages may precipitate more seizures . I live in a very rural area of Scotland & due to the seizures have had to surrender my driving license ( for at least 12 months although any more seizures and the time just increases!) This is not only very inconvenient but also affects one’s mental health due to it’s impact on my independence!
Thanks also for the journal link CLKD & yes I have emailed Dr Currie already & am just waiting on her response.
I would point out though that “your” article refers to a MALE epileptic.
My own research has highlighted the definitive effect that sex hormones have on epilepsy and vice versa. With regard to our sex hormones oestrogen is noted to be pro convulsant, progesterone anticonvulsant  and this article suggests that in general androgens ( male hormones) are anti also convulsant though there are still  question marks about testosterone specifically due to it’s different metabolism

https://www.sciencedirect.com/science/article/pii/S1059131115000400

Like I say the onset of my seizures were  totally “out of the blue” with no previous medical or family history . My husband was faced with me having tonic seizures, in my sleep & he could not rouse me , which naturally was scary for him hence his insistence that I sought medical help.
I have indeed been keeping a food, mood  & symptom diary since March and noted a marked improvement in mood, reduced headaches & improved libido , all reasons that I want to continue my HRT.
Will endeavour to get to the bottom of this- fingers & toes crossed!! I surely cannot be the only person this has happened to?

[CLKD]

I knew it was a male article however: any way of sorting out what you might perhaps need in future, might be worth filing until required.

Let us know how you get on.

[Taz2]

On the Epilepsy Society site it does seem to give
hope that maybe your neurologist could sort out the right combination of HRT for you. I'm not sure if they have a helpline.

Taz x 

[fionamarg]

Thanks Taz2. I would really love to find a neurologist who has experience of dealing with HRT alongside epilepsy so that I can come up with the right combination. The neurologist I saw unfortunately was very dismissive & unsympathetic to any link between menopause, HRT & the onset of my seizures. He has only made me more determined to find a solution!

[ElkWarning]

Not sure how helpful this is ... My son is epileptic, so I'm aware of the impacts on nearest and dearest, and also how tired seizures can make people. More importantly, a good friend of mine developed seizures during sleep when menopausal, like you, out of the blue. Her's were diagnosed as work related stress and, indeed, sick leave appeared to result in less seizure activity. She's very private about it, but I'll try and ask her what HRT regime she's on.

[Taz2]

Could you get any advice from the epilepsy society? https://epilepsysociety.org.uk/helpline

Taz x

[fionamarg]

Thank you ElkEarning. Much appreciated.

[joziel]

It is very possible of course that the seizures are not related to the HRT and it's a coincidental thing - they just happened to occur at this time. I guess if you stop the HRT and the seizures continue, then you will probably have evidence to suggest that it's not HRT which is to blame and you might be able to re-start it?

Did you have any other notable side effects at all on the HRT?

On another note, have you looked into a ketogenic diet for epilepsy? It is known to be very effective for controlling all kinds of seizures. There's a book called 'Keto for Cancer' which you can get on Amazon that really goes into the science of a strict keto diet for medical reasons - it's focussed on cancer because the author's son had cancer but all equally applicable to seizures. In fact, keto was used originally with kids who had epilepsy and was the only known way to manage it before meds were developed.