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Epilepsy and intimacy: What works for you and your partner?
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Rhinoriggs
Rhinoriggs
Last activity on 24/03/2025 at 01:31
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Im incredibly lucky in regards to my partner, however he is really understanding and knows my limits before i do.
I seem to have more problems if im really overstimulated which then causes seizures. Pacing and taking your time is not practical when you have a young family and a small living space. 🤷♀️
Fingers21
Fingers21
Last activity on 23/03/2025 at 22:23
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I struggle with my partner understanding of my epilepsy as she sees it as a form of money rather than a person.
Then as for intermicy well that's something else as drs say my epilepsy meds can make me more in need.
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Fingers21
Fingers21
Last activity on 23/03/2025 at 22:23
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Sunshine5
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Sunshine5
Last activity on 23/03/2025 at 16:28
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@Rhinoriggs , I too have struggled with intimacy leading to sex. I can cuddle and be intimate in a non sexual way but past 5 years my libido has diminished and I have struggled to have intercourse at all. The epilepsy medicine I take (Epilim and Clobazam) are mentioned in the leaflet as affecting libido. I have been prescribed Sildenafil 5 years as a normal treatment along my epilepsy meds but I don't have the confidence anymore to initiate intercourse. When I try my wife is tired so it puts me off. I have told her about it and she has no problems me trying the tablets but it is no use as planning to take a tablet with the intention of having intercourse after foreplay no longer comes easily as when I was in my 20s and early 30s. I'm 44 now and feel I could be celibate forever.
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Rhinoriggs
Rhinoriggs
Last activity on 24/03/2025 at 01:31
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@Sunshine5
There is no right or wrong when it comes to intimacy. Some people feel shattered some days and better on others.
Have you thought about a relaxing retreat so you are both calmer in a quiet atmosphere? Low lighting, candles and a gentle massage? It can work wonders for overstimulated situations and help to reconnect you both.
Im also in my 40's but my drive hasnt diminished - in fact i do require more 'sexy time' even if it doesnt involve intercourse.
Fingers21
Fingers21
Last activity on 23/03/2025 at 22:23
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@Rhinoriggs
I struggle to have the intercourse as my libido high but it's not resipicated so I cant have sex.
I found to make it more calmer and gently done as it's fun is toys for both that way any thought of stress is changed over how to use and how to please.
I just have to watch my partner enjoy it as tablets make it slow for me unless I can be like a super human, so all I need is someone close by and able to go at 80 to the dozen and a couple times or so don't suppose you know of anyone lol
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Rhinoriggs
Rhinoriggs
Last activity on 24/03/2025 at 01:31
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Do what i did. Make changes to your schedule of when you take your meds. Have sexy day times too.
Sexy time has really helped me to relax, although i cant then have intercourse or i will end up seizing. I do feel for my partner as he ends up frustrated and i feel bad. Im literally willing to try anything to make it happen. 🥺
So random how every brain is different and how people respond to stimulation 🤷♀️ some of my epileptic friends have a really healthy sex life and others just cannot for medication, overstimulation or other reasons.
Try some techniques whilst relaxing in a warm bath and candles. Environment is key...
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Rhinoriggs
Rhinoriggs
Last activity on 24/03/2025 at 01:31
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@Sunshine5 perhaps you need to plan ahead and do a date night every so often?
If your partner is in pain, nice bath, gentle massage may help her? Light some candles and relax?
Work pressures will always be there. Its unfortunately part of how the world works. She should however feel supported in her job role xx
Sunshine5
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Sunshine5
Last activity on 23/03/2025 at 16:28
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@Rhinoriggs thanks for your thoughts. Although her new employer is more supportive than her last, it will take her a while for her to overcome the sense that "her mind is running at 500mph and she has to do this and that". Her last employer became very micromanaging since COVID, and everyone's personal phones was connected to the work ones so even at home she got notifications.
My mother in law is the same and I keep reminding her(my wife )to stay in the present. The rest is up to her to work on herself, in the same way I have to work on my fitness and wellbeing. Too much anxiety on my part causes a seizure, hence I try not to worry too much.
I did say to her we should go on a Spa Retreat someday and she thinks it's expensive. It's worth it once in a while though.
I feel rather powerless since I can't drive. She enjoys being in nature but hates the cold, something you can't do anything about over here. She is from Africa and so were my parents too(although we are Indian origin), they came to the UK and tolerate the weather to an extent.
I was born and bred in the UK, so can tolerate the weather here.
I feel the cold but I have noticed since she wants our home warm all the time, I have become more acclimatised with being in a warm house rather than be exposed to the cold.
I need to work on myself and detract my mind from other issues. Perhaps in the long run it will help me with things like performance anxiety as I really need to find a solution of 5 years of no sex by way of stress at home and a gradual decline in my body being able to transport blood in my manhood.
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syusuf
Rhinoriggs
Rhinoriggs
Last activity on 24/03/2025 at 01:31
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@Sunshine5 the being 500mph is normal for some people. Im 50000mph with ADHD so i know how you feel there!
Can you book somewhere private and cosy just for the both of you as a surprise? So there wont be too much planning involved? Air b&b in the country side with a spa outside, champagne and strawberries and hopefully little mobile signal! I do this myself for a break away from the world.
X
Sunshine5
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Sunshine5
Last activity on 23/03/2025 at 16:28
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@Rhinoriggs I was hoping to save up this coming months after paying off my credit card for our holiday last December (managed to pay K4 in 3 maths without interest). Now after endless estimated bills, despite having a new metre reader, my energy bill has shot up by £140.00 a month. I'm with Utility Warehouse, so adding mobile and Broadband Internet I'm paying £300.00 in total as of next month. So I will have to see. I don't feel I am in a position to suggest as I don't drive , and I don't want her to go out of her way either. Rather just pass by life until one of us goes to our grave.
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syusuf
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Rhinoriggs
Rhinoriggs
Last activity on 24/03/2025 at 01:31
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Maybe explain its only her that you want. Reassure her its your meds, research. It helps people understand what we go through if its done right. Never give up fighting though.
8 years is so long but you can get it back on track xx
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Somya.P
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Somya.P
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Last activity on 20/03/2025 at 21:01
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Hello everyone,
How are you doing today? 😊
Living with epilepsy can impact many aspects of life, including intimacy and relationships. Seizures, medications, and the emotional toll of managing the condition can sometimes create challenges in physical and emotional closeness. For example:
Despite these challenges, many people with epilepsy build fulfilling and supportive relationships. Open communication, mutual understanding, and finding ways to manage both the physical and emotional aspects of epilepsy can help.
What about you? Have you experienced challenges with intimacy due to epilepsy?
How do you communicate with your partner about your condition and its effects?
Have you found any strategies or resources that have helped you?
@jilyOlivia @dawn67 @Dinah64 @Angel2015 @twiggy @Hollie20-2008 @ChamberDoor @Lizzier41 @swansong @sapphir3ang3lz @kathrynAnn @funsize030969 @Shaun135 @Ruthh2468 @Pisces @ laura41 @Fingers21 @mrs malky @chubbles @sylvers @RachelH @marvel2904 @busybee1 @BAZWHEAT @Kimbasmum @nikki77 @wexfordjoan @AndyH72 @Bunnyhollow @nickki @janh08 @Superkel @Marion67 @lainy60 @Feronwy @Nikkibea @Lrainey @Choraly @bri956 @simma18615 @bones35 @Annalong @HEDGE001 @Dmarie @MsCarole @NeillS @winsmcg @Charleen @Zoyasin @Chudster @Stunner85 @lizzard @Sunshine5 @AdHunt @Janie1 @Julieanne8 @AnneNo @Vickylou83 @Charlie24 @Mikparr @Jackiekerr09 @Janene @Grainnel @Keith/Fern @Nicola47x @bobk1892 @Emmdee @hinapar @Pixiecookie @Lyndylou @Shabana @Iryna7 @snowwolf67 @sparsons92 @lindog99 @EpiMazing @hockeygoalie @leigheablett @wendyathalifax @Epilepsymum @Beth85 @Sharmeena @RavenRoses @Kimhumphrey @Babushka @Petcarer @Khazin @rachip2022 @alwyn.reilly @James1050 @Zobiayasin @Tamigz @Rhinoriggs @Chris77 @shelleyashton @Olivia.black @CDDX3! @KenanÖztürk @Snuggles @Nikkik775
Let’s share insights and experiences to support one another in navigating this sensitive topic. 💬
Take care,
Somya from the Carenity team 🌼