Epilepsy?

[Louie24]

Hi all, I'm looking for some clarity please. I'm waiting to see a neurologist 25/1 my symptoms actually started in May 22 when I woke up feeling incredibly hot, my whole body was sweating, I felt sick or as if I needed a bowel movement but didn't do either instead I passed out and then started violently shaking. A&E thought it was serotonin syndrome but then I had another episode when I was off SSRIs, same again but this time I wet myself, then another 2 episodes in May and 1 in June this year. During the June one I was out for 15 minutes, I could hear but not open my eyes or respond. I had an MRI on my small bowel in December (as the GP thought it could be a gastroenterology issue) I felt sick coming out of the MRI and then had what the Doctor witnessed a seizure. I have surrendered my driving licence but live out in the sticks so would love to get it back. Does anyone think this could be epilepsy please? I'm 47 otherwise very healthy, I don't smoke or drink and have a healthy BMI. The episodes always follow the same routine, sweating, nausa, stomach pressure, uncontrollable shaking. In the passed 2 years I have also started smeling a horrible burning rubber smell but only at rest. Thank you for reading my post any reply would be very welcomed. I feel a little down as losing my licence has complications for my family and I'm also worried when the episodes will happen.

[Shorehampete]

Hi Louie. Sorry to hear about your issue. Unfortunately it does sound like epilepsy to me as I had a very similar experience 5 years ago although mine only happened while asleep and was diagnosed with epilepsy. Your neurologist will probably confirm this at your appointment. If it's more than one episode then they usually diagnose epilepsy. I had to stop driving for 12 months initially then when it was confirmed as sleep seizures only I could reapply. I got my license back for a year and then my medication was changed and started having absence seizures while awake and had to stop again. After changing medication a few more times I've finally found a combination which seems to be working (touch wood) and have been seizure free for 18 months and now back driving after 2years. Unfortunately everyone responds differently to different meds and it's trial and error until they get the right combination. Sorry it's not what you wanted to hear at the start of a new year but this is my own experience and yours may hopefully be a lot easier to deal with. Cheers Shoreham Pete

[Louie24 in reply to Shorehampete]

Thank you Shoreham Pete so very much for your reply, I really appreciate you taking the time and telling me your experience. Mine also started at night, the first being 2am and the rest about 9/10 pm. The one after the MRI scan is my first daytime one.

I'm really sorry that you've been through giving up your licence, unless people have had to surrender their licence it can be hard for people to understand the difficulties it causes. I'm really pleased you've got it back and fingers crossed you will have no more seizures.

Thank you so much again for your reply, it helps to hear from others with similar experience. I wish you a very happy 2024 and I will hope you remain seizure free. Best wishes Louie.

[Shorehampete in reply to Louie24]

Thanks Louie24. Hope all goes well for you. Another thing worth remembering if you do have to give up your license for a year when you reapply for it the DVLA can take about 4 months to return it as they have to write to your consultant to confirm everything is fine. However you can reapply 8 weeks before the 12 months is up which does help speed things along. Cheers Shoreham Pete

[Louie24 in reply to Shorehampete]

Thank you for the heads up, I really appreciate it. It's a bit of a learning curb, I'm learning so much from all you lovely people so thank you!

[Hidden]

Hi Louie...that sounds really unpleasant...but I would agree with Shorehampete, it sounds like some form of epilepsy to me.

I felt very vulnerable when I had a seizure last summer. Particularly as I was discharged from A&E without any medication and with no advice. I didn't know when it would happen again...in the next hour or not for a year. My GP surgery offered me a phone-call in 3 weeks time. Not helpful!

I wrote to my hospital neurology department with a copy of the NICE guidelines which say that a suspected seizure should be investigated by a neurologist within 2 weeks. Initially they fobbed me off with the usual NHS cuts, underfunding, understaffing explanation, however, this was very quickly followed by the offer of a neurologist consultation "due to a cancellation".

I saw the neurologist within a few days, he confirmed epilepsy and prescribed medication there and then. Immediately I felt reassured, at least I was being treated and I felt more confident to be out and about again.

I have learned that you have to be quite pro-active in dealing with the NHS. If you don't insist you can get left at the back of the queue and feel uncared for.

I hope you get this sorted soon...all the best...Nick

[Louie24 in reply to Hidden]

Thank you so much for your reply Nick, I really appreciate reading other people's experiences of seizures/epilepsy. I'm sorry though that you've been diagnosed with epilepsy and that you had to push for your care. You were absolutely right to do that and the only reason that my appointment is in January is because I rang Neurology and said it's my 5th seizures in a little over a year, otherwise the wait was 15 months. That's really helpful knowing about NICE guidance. If I had known that then perhaps I would have had a diagnosis quicker. I'm worried when it will happen again as it's awkward as it affects my speech and I can't reply to those around me. Thank you again for your reply, and I wish you the best of health & happiness for 2024. Best wishes Louie

[busylife]

Hello, Louie. In my limited experience I think what you have sounds like epilepsy. I had my first grand mal/tonic clonic seizure while asleep at night, about 1.15 a.m. in Sept 2020. An EEG 5 months later, in February 2021, revealed "slight seizure activity" as a result of which I was told I had epilepsy and asked to take "a low dose" of Levetiracetam. (This is the generic form of Keppra.) So I took 500mg at night and 500mg in the morning: this dose stopped my short absence seizures which my husband had only noticed happening since the big seizure in September 2020. However, in June 2021 I had a second nocturnal tonic clonic seizure, as a result of which my dose was increased to 750 mg to be taken twice per day. I've now, thankfully, been seizure-free since June 2021....and been able to drive again since June 2022.

I had also occasionally smelled a burning smell, just for a few seconds, but I didn't realise, until I eventually got to see a neurologist and he asked me about it, that such smells are part of epilepsy. Since taking my medication I've never had any more instances of burning smells. I hated the idea of having to take medication but sometimes you just have to bite the bullet and get on with things. I don't remember anything whatsoever about my 2 seizures. As far as I'm concerned I went to bed, went to sleep and woke up to see Drs/paramedics looking down at me! But my husband witnessed both my seizures and I feel it was traumatic for him. He said in the first one, when I seemed to have stopped breathing, that he thought I was dead/going to die. So, as long as the medication works to prevent more seizures I'm going to take it as I don't want the experience of further seizures either for myself (it has affected my memory a bit) or for my husband, who found it all terrifying.

I do understand the inconvenience of not being able to drive after many many years of the freedom to jump in the car and go wherever & whenever you like. I hope you get some answers at your neurology appointment. I suggest you write down a list of questions/things to talk about and take it with you to your neurology appointment. It helps to have a list with you and you don't want to come out and then remember something you should've asked.

[Louie24 in reply to busylife]

Thank you so much for your reply, and I'm sorry that you've been diagnosed with epilepsy. Your experiences are very similar to mine. My husband also witnessed all but 2 of my seizures, it's scary for them. The one where I was out for 15 minutes 111 thought I was having a heart attack so sent 2 ambulances. I felt as if my body was slowly shutting down, I couldn't even open my eyes or respond. That was a particularly bad episode. The fact you can drive again gives me hope so thank you. I still have a child at school and I miss being able to collect him luckily he's older so can use public transport. Thank you regarding the burning smell, it's a horrible smell and I purposely smell anything very scented to try and stop it. It doesn't happen for long but it's a very toxic smell that the rest of the family can't smell. I'm pleased that the medication is keeping you seizure free and my fingers are crossed that this will continue. Thank you again for taking the time to reply, I wish you & your family all the very best for 2024!

[busylife in reply to Louie24]

All the best to you too, Louie. I hope you get the help you need. If you're in the UK the NHS is somewhat slow because of horrendous waiting lists. I paid to see a neurologist privately in Sept 2021 (and even then had to wait 4 months) because there was no sign of the appointment that I had been referred for after the first seizure in 2020. I did eventually get an NHS appointment with a neurologist in Sept 2022 and he said I'd have a review appointment in a year's time, and that it may well be a telephone appointment. However, that's now 15 months ago and I haven't received any word of a review appointment date. That's why I suggest you and your husband think of all of the things that have happened to you and questions that have occurred to you and write them down to ask about at your appointment. When the time came for my first neurology appointment I found that I didn't need to ask some of my questions because, during the course of the appointment, the neurologist had already answered them.

[Louie24]

Thank you, and I'm sorry that you had to pay privately to get things moving. After my 4th episode they thought it was my heart and diagnosed POTS. I paid privately to see the same consultant that I saw on the NHS Cardiac ward and he said he's lucky if he gets 20 minutes per patient on the NHS but he gets an hour per patient privately, he said after reviewing my notes it wasn't POTS they thought it might be as I'm tachycardic after the episodes. I also paid for a scan of my abdomen as I get a pressure there before the episodes, it was thankfully clear. I work for the NHS and sadly there are backlogs in certain departments one being neurology. I will definitely write some brief notes and I thought maybe a timeline for the consultant. Thank you again and take care 🙂

[GillyA]

Hi Louise, this sounds like a really difficult time for you, A couple of things which may help:

I was devastated when I had to give up driving. At the time I lived 3miles from town and had no bus route, I live on my own and felt very stuck. I was given advice which really helps. Think of all the money that you normally put into driving (purchase, maintenance, tax etc). You now have that money to pay for taxis, trains…. Get a disabled rail card (hate the name, I’m not disabled, I have epilepsy) and try not to fret too much about what you can’t do. See if you can set up an account with a local taxi company - they’ll treat you well if they know there’s a regular income.

If you have a good employer they may well have an employee assistance program, which will normally include a counselling service. I found it really helped to have a safe space, where they wouldn’t get fed up with only talking about me and my troubles. Using this doesn’t mean you are depressed or have a clinical problem, it just gives you someone to talk to.

Good luck, hope it all works for you.

[GillyA in reply to GillyA]

Oh one other thought. After my initial diagnosis I was advised not to move house, if things get under control you’ve gone through a huge amount of upheaval and cost that may not have been necessary. But if you have to move house for some reason (for me it as a new work location) then factor not driving into your decision making, eg good bus route, shop within reach. Keep that taxi firm happy too.

[Louie24 in reply to GillyA]

Hi Gilly Thank you so very much for both your replies, I really appreciate your advice and experience.

I'm sorry that you have epilepsy , you sound really resourceful and have adapted to the challenges well.

I have been having some really good support from my work so I'm very lucky. I was at my lowest in July when my husband and children went on a special holiday to America but I knew I was too sick to go and was worried what if I had an episode on the plane. I think you're amazing as you live by yourself and at times when my family were away I was worried about being alone and losing control (I get an aura so at least I have a warning but then I know I must lie down straight away.)

I hope you're happy in your new job and home. I have been thinking of moving to town but you're correct it would be a huge financial cost and the family are happy here. I will look into the disabled train card, that would be very handy. I also have some lovely taxi companies and would feel less of a burden using them. I really hope you stay seizure free and once again thank you as it was so kind and thoughtful of you to reply. Take good care 🙂