I know this is AIBU but im terrified out of my mind need handhold; health related

[LadyInParis]

I developed late onset epilepsy around age 20. In all I have had 5 full on fits, I think grand mal if I recall correctly? Anyway after my 5th fit they did tests etc and as I said, I have epilepsy, and also get complex partial seizures.

They put me on Sodium Valproate, around three years ago after the tests. (The much covered Epilim in the news). No full fits since then, but I still get complex partial seizures on an on/off basis, these are split second seizures that make my face twitch and hard to physically talk at times. Before medication and the fits stopping, these would ramp up massively until I had a fit.

Anyway I now live in Paris, and over here they wont prescribe it to me as its French policy unless very very last resort. So he put me on something else. Ever since, my complex partial seizures have been increasing to the point I just KNEW the new medication isnt working, and even told my fiance this morning that its extremely likely a fit is very due.

Well timing couldnt have been guessed better because I just had one. Luckily was in bed with migraine (the irony of being glad of that), and not walking on tiled apartment floor, or in the bath. I dont know how long I was out for so dont know exactly when it was, just that I woke about two hours ago, or just less, but no idea how long I was out for.

Since then I have been in a state of pure fear and adrenaline. Heart racing, too scared to go to the toilet or get a valium to calm me down because anxiety increases the complex partial seizures and im terrified of another. And a valium would help.

Anyway I eventually went and did those things, and I was sore all over when I walked. Also bitten my tongue which always happened. All my other fits didnt result in an immediate secondary one, they were, oddly, spaced roughly a year or so apart.

Anyway my point is (sorry for long background) I am absolutely terrified out of my mind. The valium is helping a little, in that my heart isnt going so fast but my fiance is at work, I cant really call him home considering I am actually ok. And he wont get home til late.

And im terrified to the point of tears and panic. Please handhold? I feel extremely vulnerable. Yes its unreasonable to post here but I need traffic for support and these fits, I am a very fearless person but they scare me beyond my wildest nightmares. Especially since I havent had a fit in years. Please help?

Ohhhh I loved SoS Medicins! Best invention.

I know you don’t want medical advice, but there is/was an excellent British female GP in the 17th, even if you just needed someone to talk to, who understood both systems.

Glad to here your fiance is coming - I really hope the terror passes rapidly with his arrival.

Getting through a trauma induced reaction like that is a whole different thing to facing 'fears', especially when it is something that is affecting your brain, and so intimately tied up with how you see yourself and your identity.

I would imagine even being diagnosed with epilepsy can be a trigger for future mental health problems due to the change it might make in your sense of self.

Anyway, that is for the longer term, so that if you ever have another fit in the future the terror will hopefully not take you this way again. For now its be kind to yourself, let your fiance give you some TLC and try to get the meds sorted out.

Franprix is where we get our tea: lots of items and I get to have bpth my english tea and my earl grey.

This "Paris is tricky when you first move there. As a tourist you see it’s beauty but as an incoming resident it feels terrifying and often not very helpful." Is like you took the thoughts right out of my head!!! When I came for holidays I fell in love with its beauty, especially the genuine non tourist areas. Unfortunately it wasnt until I moved that I realised just how hard it is to navigate, to fit in, to make friends, people can be racist it has happened a few times, in that they ignore or dismiss me, even in shops. Because I am not French and dont speak a huge amount of French, but even when I knew what phrase to say, I have been dismissed or ignored. But ill acclimatise. Conversely it has lovely helpful and patient people who help you too. So I cant complain. And my fiance speaks four languages including french and english so hes often my translator, especially at doctors who speak only french.

Ps apologies for the terrible grammar, my writing is a mess and im usually extremely fussy about correct grammar et al. I just dont have it in me right now.

The relaxants, you ladies, and the fiance coming home have massively calmed me. And you all have given me great advice that I will follow up on. I appreciate it more than you know. I cant even describe the pure fear. Beyond fear. Much calmer now, thank you.

If there is anyone in Paris who would like to meet for a coffee, do let me know. It would be lovely to be able to socialise a little. A nice cafe and company for me. I have to admit the transition is difficult. Fiance at work morning until late, no network yet, its very lonely. I spend most days alone so any meet ups would be welcome.

Time to make my tea! Women are amazing at supporting each other. Really. Thank you all. You helped calm me, gave great advice and now i feel ok making a pot of tea and waiting for the fiance, feeling much calmer. Youre all amazing. I have stalked mumsnet for years, taking in all the advice and love and care you all have, and learnt so sooo much along the way too. Like my past abusive relationships etc. Mumsnet, through years of reading, taught me so much that it transformed me. I was able then, with the knowledge here, to erect sensible boundaries and protect myself better. This is my first post. Anyway sorry for the tangent.

Thanks again all, and feel free to offer any other advice if anyone has any, ill keep checking in. Take care of yourselves xx

My OH has epilepsy and has (thankfully infrequent) grand mal seizures. I'd always want to know and would return home if it happens so don't worry about calling your fiance.

There's lots of English speaking Meetup groups if you look on the website.
There is also a group called Message (roughly 80 euros to join) and they have loads of English speaking events/meet ups for coffee /Play groups/book clubs

I think the fear is part of the seizure, my relative has them and they are quite frightening, especially at night, when you wake and are not sure what's gone on around you and you feel in an altered and terrified state. I have had this very occasionally with migraines, not often, but it is like existential terror and is really unbearable.

The good news is that you have had medication work for you before, and the chances are that another one or SV will work for you again- this is a very positive sign (as some people have untreatable epilepsy).

Sorry to hear it’s so stressful for you...anybody would feel the same in your boat so you’re definitely not being unreasonable. Seizures can be scary!

Just a few ideas...

• could you put together a little stash/box to keep at ground level in case you feel as though you’re going to have a seizure, you can get a drink (cartons that don’t go off or water bottles) and a snack. I’m sure you know but seizures can be triggered by low blood sugar so making sure you have regular meals is important.

• can you get the emergency phone app preferably in French (that bypasses your security passcode) in case, once you are out an about, anybody can check your health details.

*get the neurologist in UK to write a headed letter stating that you need a regular prescription of sodium valproate.

Sorry to hear about your seizure. My sister suffers too. But, you're in France, where the healthcare is outstanding. I've lived there. Phone your doctor and you should be able to see them today if you think you need to. Then book an appointment with your neurologist to talk about adjusting your medication. I know it's scary, but in France things will move much faster than in the UK. Good luck!

Frisky I am at Rue de la Chappelle, 18 arrondissement. Luckily we have a Franprix literally across the street. And tell me about it with the valproate. Going to have to sort it out with docs.

Londonhuffy how odd, I was too. I was 20/21. Not stressed, actually tired and had been reading in bed, then remembered I needed to brush my teeth so I went to get out of bed and before the second leg hit the ground, I was gripped by this muscle contraction in my face, neck and throat and my face went all distorted and i thought i was dying, suffocating to death as I couldnt breathe my airways all seized up. Do you get that too? Luckily I pass out after a few seconds of that. But its long enough to really really scare me, i cant stress how much. And it hasnt changed since then. Always the seizing of throat face and airways, then I always wake up sore with a bitten tongue and aches all over. Since the first one the fear hasnt lessened at all. As for tonic clonic/ grand mal, i thought they were different types. When I was first diagnosed it was hectic and years ago so I couldnt remember if it was tonic clonic or grand mal. Turns oit theyre the same. Interesting. Well I have those every year or so without meds, and the complex partial sometimes I dont get them at all, others I get them so bad I can barely talk, then they fade away again for a while, etc. Also dead on with this "pull pretty much every muscle in my body. It is an extremely traumatic (in the physical AND emotional sense) experience for the human body." And this "I also need human company in the immediate aftermath. I find that I am tearful, repeat things, get confused, forget that I had the seizure and try to do physical things which my body simply won't allow me to do! It's horrible". Especially when I forget I had one too. I wasnt sure today, until i felt my tongue and the typical "out of whack confused and fearful" feelings. My fiance will help with the bath, he has literally bathed me before, where he holds me and supports my weight so i dont have to hold myself up if that makes sense. When I was ill. Hes coming home now so I will make a tea, then when he is here do all the things you said, with his help. Sorry for the epic reply haha. Not nice for you, but reassuring that it isnt just me, and lots of helpful advice. Iv never sought advice before or talked to someone with practically the exact same situation as me. Although im terribly sorry you suffer too

Hi Lady in Paris,

I'm not that far from you, I've sent you a PM!

Also thanks for the pm offer, i might take you up on that.

Atlantic thats a good idea. Im really not up to going anywhere right now. Thank you. And yes please pm me that info, thank you so much.

London, this is exactly how I feel now "rolling waves of nausea and anxiety that it is going to happen again." Its really just awful isnt it

I think you need to go back to your doctor and ask to be referred to a neurologist. It's a question of getting the right medication and the right dosage for you.

MrsS, please pm me her details if thats ok? A massive problem with the french neurologist was the language barrier. Morphene, thank you i already feel much less scared knowing he is coming. Thank you fpr kind words.

Thanks again atlantic, ill look into that. Big reader so that sounds good.

Verbena- genius ideas thank you!! I really was terrified of standing even though i needed the toilet badly and also meds for the anxiety. Great ideas!

Pimmsy thank you, I will read and respond later; the reason im rapid firing tons of replies is because I want to be free when my fiance gets here, and would hate to just disappear without acknowledgement.

Thank you all, truly. Im sorry if i missed anyone, but i read all replies and im going to log off for now as fiance likely to be very worried and wrap me in a massive bear hug the second he gets here. Then look after me, follow the advice on here, bath (supervised) etc.

I will reply to pms and other advice later on. Thank you all so much. Truly. Every one of you. You all made me feel a lotttt calmer, and actually positive about possible meet ups etc. I cant thank you enough xxx (I know kisses are frowned upon by mumsnet but i dont care!!

Thank you

Hi again all. Just to check in and let you all know that everything is ok. I followed advice in terms of a cup (or three!) of tea, and a hot bath with some nice oils for muscle soreness (helped by my fiance so supervised). Just about to get a massage to help the muscles and cramps as im still a little stiff, then some food and a relaxing documentary in bed.

For those who gave recommendations for doctors, support networks, meet up groups, and more; thank you very much. I will check them out tomorrow as I feel a little mentally spaced at the moment. But they are majorly helpful thank you.

Also have a coffee meet up with a poster tomorrow in a cafe in my arrondissiment, which will be lovely and im looking forward to.

Unbelievably grateful for all help, recommendations and advice. You ladies really have helped me in ways you cant imagine. Goes to show that it really is best to reach out and ask for help sometimes. I tend not to do that. Women are truly amazing in their capacity for kindness and support.

Thank you all. Nikki xxx

How are you feeling this morning?

The winter isn't the best time in Paris - wait for the spring and summer. There are some gorgeous places to explore or just to sit and watch the world go by.

Im not too bad Atlantic, thanks. Just trying to find an emergency home psychiatrist for the 18th for tonight, my mental health has always been bad but now, with a mix of struggling to fit in in Paris (not been here long) and the fit, my mental health isnt too good at all. Anxiety in particular. So just doing some research now xx

Hi, my son has epilepsy. I just wanted to say that I give him a one a day fish oil, a magnesium and a vitamin B every day. He was on epilim, then keppra. Now he has been seizure free for five years so he has come off the keppra to see if he can manage without it. We are still keeping up with the above vitamins and minerals as they are all meant to help the brain to regulate itself. Can't hurt anyway. Make sure you get the meds you need, stay away from water and baths, get regular food and sleep and get a seizure pillow for your bed xx

Thank you everyone. All advice has been extremely helpful, and im on it. Just need to try a different medication. Thank you all so much xx

That sounds terrifying. My mum used to have epilepsy (the menopause seems to have stopped it with her).
She often was left exhausted and injured after a seizure. Also a feeling of disorientation and migraines were a warning for her.
Can you call in for other company? Mum used to put the radio on for a sort of company until someone could come. Perhaps get food delivered?