Diagnosis changes nothing but feels like it changes everything

[iwentjasonwaterfalls]

Sorry for the weird thread title, it's the only way I can describe the situation I'm in.

The short(ish) - I have a low grade brain tumour, possible absence seizures were an early symptom, started taking medication, had to stop driving, medication has had them under control for about a year. 6 months ago, started having weird episodes of extreme deja vu and strange sensations through my body. Medication controlled it most of the time but it still breaks through during AF and if I miss meds. Knew it could be seizures but I did a lot of reading and thought maybe they're pseudo seizures or psychological or something like that.

Had my first neurologist appointment yesterday (been waiting nearly 2 years, everything has been dealt with by neurosurgeon/GP so far), and I stupidly let myself hope that she'd say they didn't sound like seizures and I could get ready to get my driving license back. Instead she confirmed epilepsy and reiterated about not being able to drive, plus the risk of showering etc unsupervised.

I'm gutted, and so angry that I let myself get my hopes up. Logically I should have known. It's so hard to explain it to my friends, they've all been so supportive but how do I explain how low I feel when the diagnosis changes nothing in practical terms, but in my head it feels huge going from "potential seizures" to the doctor saying "I'll be the one managing your epilepsy going forwards"?

Please feel free to ignore this, I really needed a vent because I can't put it into words at the moment and don't know how to explain it to my friends. I miss driving. I didn't pass until I was 25 because of phobia after a car accident, I worked so hard to overcome that and to pass, and less than 5 years later I lost my licence and don't know when I'll get it back.

Totally understandable response. It's ok to feel as you do just allow yourself to feel it. It isn't fair and it's inconvenient and annoying. Hopefully someone in a similar spot will come along for support

Thank you ❤️

Ah OP, it's a natural response to be feeling like this. You feel the diagnosis took away hope of it not being what you feared. The good news is that diagnosis is half the cure. It's something that can be managed and it will be done via a specialist who sees this every day. So the chances are she'll be able to stabilise the condition as much as possible...

I think your feelings are understandable @iwentjasonwaterfalls You're dealing with life changing news and the fall out from that news.

Sending you a warm hug 💛

I really feel for you and I think it’s a totally natural response, especially when this is a problem which has come on, rather than being there forever.

It’s not the same thing but I had a very similar reaction to my DC being diagnosed with autism. I’d had concerns since he was a young toddler, but the day after we got the formal diagnosis when he was 8 (which we had been fully expecting), I just could not stop crying. Kept bursting into tears throughout the day randomly.

So I would try to be kind to yourself and give yourself time. And I hope things improve for you.

Give it time. I've had epilepsy (tonic clonic and focal seizures) for ages, so have never driven, and then a brain tumour last year. It's all a lot to take in. Your seizures may settle with medication yet. Or they may not and you'll get used to managing them and using public transport etc. I'd speak to the brain tumour charity and epilepsy society for support, they really are great.

I have a friend who has epilepsy and can now drive. Maybe this will be a possibility in the future once your medication is sorted. Sorry you have had this diagnosis.

I'm epileptic and have unfortunately woken up from seizures knowing that I'd have to hand my licence in. It is rubbish and upsetting and I totally get that.

However, don't lose all hope. I finally found the right medication for me and have been seizure free for 8 years now - and have been given a 10 year medical licence which I didn't even know was a thing.

And I agree with others, you can always guess what the diagnosis will probably be but hearing it from someone else does make it feel more real.

Thank you all for the kind comments and reassurance, I really appreciate it so much!

After a year seizure free I should be able to drive again, but getting to that year feels so far away right now.

This wasn't how my life was supposed to go 😔 and I don't know how to get over that disappointment.