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

(46 Posts)
LadyInParis Wed 10-Jan-18 13:46:10

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?

HanutaQueen Wed 10-Jan-18 13:48:15

Please, let him know. You can say that you don't need him to come back but I think you need to tell him as it's so upsetting and distressing. You are not overreacting and it must be awful for you.

allthgoodusernamesaretaken Wed 10-Jan-18 13:49:19

Poor you, that sounds frightening. I think you'd be best speaking again with your doctor. Please don't rely on medical advice from well-meaning strangers on the Internet.

NurseButtercup Wed 10-Jan-18 13:51:09

Handhold of support flowers

Have you had a look online or on Facebook for epilepsy support groups?

RavingRoo Wed 10-Jan-18 13:53:10

You need to let your doctor and your fiance know. If you cannot get a proper prescription then maybe come to the UK and go to an urgent care centre here and explain the situation. There are several British people at work who keep UK GPs when they work overseas for similar medication related reasons - don’t see why you can’t do this. Some online pharmacies may even be able to deliver out to you.

LadyInParis Wed 10-Jan-18 13:55:36

Crying now, thank you. Im not looking for medical advice, ill go back to the doctor for that, but you are right about that. I just need to not feel so alone. Im new to Paris so not made a support network yet.

I have sent him a message. Do you really think he needs to come home? To be honest I do need him

LadyInParis Wed 10-Jan-18 13:58:25

Ravingroo I didnt know that. It looks like im going to have to go home.

I never thought of support groups, im more of a get on with it type. But this has scared me so so much im scared ill have another. I guess that makes you more right Ravingroo

LadyInParis Wed 10-Jan-18 14:03:45

I have really bad anxiety too so I keep catastrophising. What if I go to the toilet and fit and fall forwards and smash my head on the tile floor. Or get a drink of water and fit and smash the glass and cut myself badly, im too scared to leave bed. Im already vulnerable health wise, mental health I mean

Thetreesareallgone Wed 10-Jan-18 14:06:35

I would try to find a way to get a longer term prescription of Sodium Valproate as long as you use cast-iron contraception (as it slightly increases risk of birth defects as I'm sure you know). You shouldn't withdraw off it suddenly either, as it can provoke seizures and that's more risky! I know someone who takes it and it can be life-transforming when it prevents seizures. You need to go back to the dr and ask what they plan next in France and then weigh up your options given you know that drug works for you.

www.theguardian.com/society/2010/nov/08/epilim-anti-epilepsy-drug

Sorry this happened to you, seizures can be really frightening and your migraine probably is exacerbating the effect. Perhaps keep lying down, just get up to make a cup of tea (if you have proper teabags in France!) and take it easy til your boyfriend comes back or call him if you are really anxious.

Morphene Wed 10-Jan-18 14:11:51

<handhold> Sorry to hear you are feeling so frightened. It almost sounds like you have some PTSD or something around fits (which would be completely understandable - it must be traumatic to experience).

Have you had this level of fear before? Can you remember how quickly you came back out of it?

You've had this happen before and made it through - which must be a good indicator for doing it again.

So sorry they didn't hook you up with the right medicine in the first place!

LadyInParis Wed 10-Jan-18 14:19:24

Made me laugh about the tea bags, effing pain to find tea here! But we have it from the supermarket. Usually earl grey, my fave. But normal tea too. I dont normally have much sugar but do you think a sugary tea will help? I havent eaten all day.

I didnt know that about the withdrawals. Why didnt he tell me that?? Why?? An expensive neurologist didnt think to TELL me that?!?! Jesus christ. The valproate was amazing. Soon as I was on it no fits for about three years.

I havent eaten all day. My head is beyond agony, my body too when I stand, standing makes me all shaky, and my tongue is sore from biting it.

Good news, the fiance has just replied and he is coming. I was so scared he wouldnt be allowed to leave, at the risk of sounding pretentious or braggy, he has a really good job which isnt easy to leave; he has clients etc that he has to see. Thank god he is coming. Thank god. Oh thank god. He is a brilliant support, truly. He will walk the ends of the earth to look after me, and I him. Oh thank god

GreenFingersWouldBeHandy Wed 10-Jan-18 14:24:21

Lady, you are not being unreasonable. You are afraid and you are on your own. Your anxiety is totally understandable. Agree with going back to your GP for a longer-term solution, but for right now, suggest you stay in bed and ask your fiancee to come home. Hope you feel better soon and get your meds sorted out.

I'm not sure of the details but there will be some kind of French equivalent to NICE which dictates guidelines on which medicines can be prescribed for what, and they will have a protocol for second-line treatments if the first one doesn't work. Or as also suggested, come back to the UK (temporarily) and see if you can sorted with a regular prescription for the Epilim. flowers

allthgoodusernamesaretaken Wed 10-Jan-18 14:24:53

I wonder if cognitive behavioural therapy might assist with your anxiety?

LadyInParis Wed 10-Jan-18 14:25:48

PTSD sounds a possibility. There is nothing I fear more in the world than these fits, truly. I cant explain the level of fear over it. And im really not at all easily scared. Anxious yes, but not this type of pure fear. Im sort of holding my breath, shallow breathing, because my stomach is too much in knots to breathe properly. Until the valium my heart wouldnt stop, I have never felt fear like it. Despite my anxiety mental health wise, in terms of things im scared of, I like to face them and conquer them. Scared of heights so I go cliff diving type thing. Im not making sense am I? Anxiety yes. Fearful? No way. Except this. This is beyond my worst nightmare and truly wouldnt wish this on anyone

ladylunchalot Wed 10-Jan-18 14:31:13

Hope you're OK op. Ds was diagnosed with focal epilepsy last year (he's 8) and there is virtually no support where we are in Scotland. I joined the online forum Coping With Epilepsy.com and it's great - very friendly and helpful.

LadyInParis Wed 10-Jan-18 14:33:35

I am still wrapping things up in the Uk so ill likely have a left over prescription of them ready, the sodium valproate.

Fiance is coming. Massive relief.

As for the mental health/anxiety, yes this is something that I have wanted and needed for a long time. But even in uk the system is so slow, waiting lists etc. Perhaps Paris is better as you have to pay? Ill look into it, see what the therapy costs

Thanks everyone, truly. Such kindness from strangers. It means a lot. Really. I rarely reach for help to be honest. Youve all been wonderful.

The CBT is something I really need to sort out. Its been years, im 30 now, time to take action and face all this

Molly499 Wed 10-Jan-18 14:36:49

I would get an urgent Dr's appointment, healthcare in France is extremely good and there are alternative medications available. Sodium Valporate is not banned for epilepsy but they are very wary of prescribing it in anyone who could get pregnant because of all of the side effects and current birth defect issues. Ask to be referred to a specialist, this usually happens really quickly.

The migraine won't be helping but hopefully you will feel better tomorrow.

www.epilepsysociety.org.uk/nice-guidelines-anti-epileptic-drugs#.WlYjQiSnyhA

LadyInParis Wed 10-Jan-18 14:38:54

What is focal epilepsy? Is it the type where you go catatonic and still, stare at one point in the room, but seem awake? That must be terrifying for you. I have also witnessed fits after mine started, same type as mine and it scared the living DAYLIGHTS out of me, remembering my fits, like flash backs and she was only a uni room mate. So I cant imagine how you feel. Youre very brave. As is he; id imagine a child would find it far worse. Does he have medication?

LadyInParis Wed 10-Jan-18 14:43:06

Molly yes you are right on all points, France is great for healthcare and when I saw the GP he had me into a neurologist in days. He said the same; Sodium valproate isnt banned but is the last most reluctant prescribed one when all the others fail. So it might mean trying other drugs.

I dont know if I can cope with the possibility of them not working though, and having more fits, then trying something new and it npt work and more fits, etc

friskybivalves Wed 10-Jan-18 14:47:49

Hello - you poor thing. What a horrible shock. 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.

Whereabouts are you? I can prob dig out the numbers of some excellent GPs I used when I lived there. As others have said though, I used to ring my UK GP too. Specially if i was worried about anything and they would generally agree to a telephone consultation or appointment.

Monoprix does nice tea. If you’re anywhere near the 17th, there’s. a great Franprix with loads of good UK items. The big WH Smiths on the corner opposite the Tuileries also has a decent UK food section upstairs. Full of home comforts.

flowersflowersflowersflowers

friskybivalves Wed 10-Jan-18 14:49:43

Sounds bonkers if you responded well to sodium valproate that they won’t prescribe it to you - if only in a small quantity to monitor it. Have you thought about asking for a letter from your GP in the UK explaining your history? The French are great ones for responding to official paperwork.

LondonHuffyPuffy Wed 10-Jan-18 14:50:18

Oh lovely, I'm so sorry you had a bad seizure today.

Like you, I developed fairly late-onset epilepsy - I was in my early 20s. I have generalised idiopathic epilepsy which means there is no known specific cause and it doesn't particularly follow a pattern.

I also have complex partial and simple partial seizures and, rarely, tonic-clonic seizures (what used to be called grand mal seizures). The TC seizures mainly happen when I am asleep. However, when I do have them they are horrifically painful and cause me to feel out of whack for days afterwards. I also bite my tongue, occasionally lose control of my bladder and pull pretty much every muscle in my body. It is an extremely traumatic (in the physical AND emotional sense) experience for the human body.

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. I sympathise massively and am sending you an un-Mumsnetty gentle hug.

For the bitten tongue - rinse your mouth regularly in warm salty water. Helps to heal it loads.

For the aching muscles - a warm bath or shower BUT ONLY with supervision, obviously, follofor the ehadache (sorry of all of that sounds obvious).

Do try to eat to keep your electrolytes balanced (salts and sugars) - have a piece of toast with butter and a banana and keep your fluids up as dehydration can be a risk factor for seizures.

Once you are feeling physically better, please do go and see your doctor again. It is really, really unwise to leave someone with epilepsy without medication, if that medication prevents seizures. There is a reason that anti-convulsant medication is free in the UK - the NHS quite rightly takes a view that it is cheaper to provide meds than it is to deal with the medical implications of untreated epilepsy. I have been on a drug called Keppra (Levetiracetam) for years and haven't had a seizure for most of the time I have been on it. Sodium Valproate didn't work for me - it gave me horrendous side-effects, and carbemazepine made my simple partial seizure worse. Keppra is, for me, brilliant.

So glad that your fiance is coming home to be with you. Take care and feel free to PM me if you have any questions.

AtlanticWaves Wed 10-Jan-18 14:54:06

What arrondissement are you? Marks and Spencer's have loads of food shops in Paris for tea.

Anyway, did you know that you can have a Dr visit you at home? If you ring SOS médecins (google them) or Urgences Médicales de Paris they send you anDr within 3-4 hours max. I've never waited more than 2 hours.

It costs around 50€ but you get some back from the secu and your mutuelle usually pays the rest.

LondonHuffyPuffy Wed 10-Jan-18 14:55:30

oh, and Keppra apparently has a very low risk association with birth defects but to be on the safe side most UK neurologists also recommend taking it with a higher dose of folic acid.

As for the anxiety - it is both a physical after-effect of a seizure and a very common psychological reaction to having one. Double whammy! I feel anxious for DAYS afterwards - rolling waves of nausea and anxiety that it is going to happen again.

AtlanticWaves Wed 10-Jan-18 14:55:56

Inknow nothing about epilepsy but I see a very good neurologist at Porte Maillot for my migraines if you want me to PM his name

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