Feeling like giving up

[Jennyrolinng]

Hi everyone

IM New to this

I was diagnosed 9 yrs ago, And over years my medication has gradually increased to the following 1g sodium valproate twice a day,Lamotrigine200mg twice daily, kepprra. 750g twice a day and 2mg clonzepam at. Night. Oh and Also have buccolam as a rescue medication

I have. Over the last 3 months 5times been admitted via air ambulance for status epilepticus which lasted well over 2hrs each time NASA required a stay in ITU.

I feel like I can't cope with life as it's changed me so much

I never let it stop,me before but now I'm terrrified

Will I alway feel this way?

Has anyone else felt like giving up?

[monaco1]

Hi Jenny! I know how you feel! There are times when I have felt like packing it in, giving up, and considered it! But please - don't! That's the troupble when they constantly play with your medication, trying to find what is best for you! And when they change tablets, it changes you - and you don't know what is "normal" or "right" and it becomes very difficult! And when other people look at you, all they think is "Well, all you are doing is changing a tablet", but they don't realise how much it changes you, and then blame you for all your actions which you don't mean to do, but you can't help it! OK - I must admit, I've never had air ambulance before, but I have been by ambulance to A&E many times! (Mind, it is only around the corner from my house!) But I have been on all those drugs you are on! And overdosed for 8 years without knowing it! No wonder I had Keppra rage! I do take clonzepam when I have cluster seizures and also the buccolam when needed. I've had epilepsy since birth! Now 51! I'm on my 3rd Vagal Nerve Stimulator - been on it for 17 years! Only 3 years ago did they figure out my true diagnosis! Before that they were just guessing and arguing amongst themselves - one time saying I had left temporal lobe, then I had right temporal lobe; they could never agree all my life! Till I got put under an epileptologist and all the proper testing was done! Then it came out that I had bi-temporal lobe epilepsy! By then I had been on 17 different drugs and am having to discover and live with long term side effects as well! Sometimes you shout out at people and are angry! You do things that you don't mean to do and can't control yourself! Don't give up! Find a few groups out there on line which you can share with and speak/share with others on fb and compare with others. Get some encouragement from others - realise that you are not the only one like that! Find groups like "All About Life with Epilepsy", or Positive Purple Flowers of Epilepsy", or Friends who like Epilepsy Connections" on Facebook and get in touch with them! Share your story and find friends who you can talk and compare with! Don't give up - please! It's worth fighting! You will win! Sometimes you feel like you are losing the battle, but you can win the war! Keep fighting! Robert Poloha

[Wintersbite]

Hi I've never been as bad as air ambulance but I'm well known at my locals (gp surgery and hospital) when I come around and thay tell me I've had a fit I ask who won? Me or the epilepsy and thay look so confused but not my last fit but the one before my epilepsy was being loving for once and the nurse claimed bad news told me I had a fit in the toilet and showed me that I ended up with a love bite from the toilet nurse was confused with this but let me clear something up now my next fit can land me in a wheelchair you see I've been epileptic for 30 years but I fall the same way all the time backwards and I've now got spinal damage caused by the falls and the fact I beat the hell out of myself don't help for years I done the what's the point now I enjoy I found it funny to the point my Dr told me off for joking about my poor mother -in -law when she seen my epilepsy devil how she didn't get a priest but she just called my husband crying I was dead but that's nothing to when I tell the cancer dr that cancer won't kill epilepsy won't let it the looks I get but I'm still here years later. Yes I've thought about giving up yes I use to think the pills don't work but I as you can see used it to have fun only a epileptic can play up on the Dr's be like a kid see what you get away with have your own type of fun

[Adlon57]

Keep at it, I was asked by one of the ambulance helpers whether they were going to call a ward after me, the number of times I went to hospital with epileptic seizures, indeed a neighbour called me "Ambulance man!", when he heard the ambulance it always was for me! Having over 400 seizures over 47 years, I've been through most of the medications, some quite comical side effects, but the "giving up" side effect is quite common, indeed the present medication fycompa was a good indication of this, but I got used to the medication and relief! It's just a matter of finding one that should help, they all have side effects, ok it might take a while, sometimes they stop the actual seizures but the side effects can be worse than the actual seizure, Epilim, Keppra and clonzepam I found were examples, one affected my thyroid and I spoke in a high voice. There are plenty on the market, keep in regular contact with your epilepsy specialists, if you don't have any ask your GP they should have some sort of contact details for them, via phone or email are good forms of contact, tell them how the drug is affecting you. Recently I have had four seizures in four years! Ambulances in all their forms are there for help, they all recognise that epilepsy can be painful but important you are given help. In earlier days I did feel like giving up several times, but keep the pecker up, there is light at the end of the tunnel, the reactions about epilepsy have really improved recently, you are not alone epilepsy is very common in it's various forms? Form a daily routine, adapt your surroundings, I have lived on my own for the last fourteen years, have friends and relatives in regular contact which always helps. It did not take me 47 years to find some sort of relief, but a change of medication always helps if the side effects gets too much! Forming a good sense of humour I found always helps!

Good luck, and keep the pecker up!

[EpilepsyAction1 Partner Epilepsy Action]

Hi

It sounds like things have been difficult for you for a while now. I ‘m really pleased to see you’ve had some fantastic replies on here. But hopefully the information below will also help.

I wonder whether you have ever had a full review of your epilepsy and your medicine? If not you might want to look at our information on getting the right treatment and care for your epilepsy especially under the title “What if my seizures are difficult to control?”

It must be scary having seizures that last a long time, and needing an air ambulance to get to hospital.

Here is some information about the different types of support we offer. If you live in an isolated area there may not be a coffee and chat group near you. You might also be interested in our online community forum4e. That works wherever you live.

We have some information on wellbeing that you might find useful And we have a self-management course that gives you skills and confidence to help you manage your epilepsy.

I hope things start to improve for you very soon.

Regards

Cherry

Epilepsy Action Helpline Team

[Jennyrolinng]

Thank you 😊 all so much for replying to my message.

I have taken back control, insisted I see my Neurologist and have actually been given an appointment for 22nd August!! Fantastic, considering I called 2 days previously and was told no available slots till December.

I'm back and ready to announce to the world "Yeah I have epilepsy, but epilepsy doesn't have me"

Thanks again

Hope you all keep well

Jenny