Waiting on referral...advice greatly received.

[stampton]

Hello! So here's the thing. my 'seizures' started out of the blue in March of this year. I am still waiting to see a neurologist and find out a little more about what may be causing them, what they actually are classified as(epilepsy or a different seizure disorder.) and trying to get them managed. I have had a few clear CT's over that time (repeat ones have usually been because I've hit the deck and given myself concussion. )

I don't have any idea when they are going to happen. Sometimes I will have an absence type seizure where I just lose blocks of time, those are confusing enough but a lot less invasive and worrisome because I also have had rhythmic jerking of arms/ face etc so like a clonic < but during sleep. I have also had tonic clonic types aswell with the full rigid shaking, lost consciousness business - I don't have a clue what is going on at the time, don't remember them and it takes anything from 15 minutes to a few hours for to remember where I am, my husband and pretty much anything that isn't my first name. <is that a "normal" [as it can be] reaction or are these just some other form of random episode that is just similar to a seizure disorder. I know you can't diagnose me, so I guess my point is, do any of you suffer with similar??

Now obviously I have no idea why these are happening and they happen at random, (though we have noticed they do tend to happen more during the time I am falling asleep or just waking up) PLUS they are completely unmanaged in terms of medical interventions. I have had to give up working as an electrician and I am 'resting' more and trying to avoid getting worked up and stressed as these are common triggers for a seizure, does anyone else have any advice I may find useful in the meantime before I get a chance to see a specialist. As lovely as the NHS staff are in A&E I would quite like to try and keep myself out of there. short of a bubblewrap onesie, I am stuck.

I'm Female and 32. I do suffer with migraine disorder, wonder if there could be a link there...

Thanks in advance, and apologies for the all over the place ramble.

[EpilepsyAction1 Partner Epilepsy Action]

Hi

It sounds like it’s been a difficult few months for you.

After a tonic-clonic seizure, it’s common to be confused or have memory problems. Lots of people also have a headache and feel sore, tired and unwell. The length of time it takes to fully recover after a tonic-clonic seizure is different from one person to the next. Some people feel better after an hour or 2, but for some people it can take several days to feel ‘back to normal’ (

epilepsy.org.uk/info/seizur....

Migraine disorder and epilepsy are two separate conditions, but it’s not uncommon for people to have both. And although some people may experience both by chance, there is research to suggest there could be a shared genetic cause (epilepsy.org.uk/news/news/e....

Diagnosing epilepsy is mainly based on a description of someone’s symptoms (epilepsy.org.uk/info/diagno.... So if you aren’t already, it would be a good idea to keep a seizure diary to show your specialist (epilepsy.org.uk/info/diagno.... And a description from someone who has seen your seizures or some video clips of your seizures can also be really useful.

Keeping a seizure diary can also help identify any seizure triggers you might have. As you say, stress is a common seizure trigger along with things such as been tired, missing meals, alcohol and being generally unwell. But everybody is different and over time you may see your own patterns emerging (epilepsy.org.uk/info/triggers). You may also find our safety advice for people with epilepsy helpful (epilepsy.org.uk/info/daily-....

We have lots of other useful information on our website such as seizure first aid, employment and benefits information (epilepsy.org.uk/). And you can also contact the Epilepsy Action Helpline team for advice and information on our freephone number 0808 800 5050. We are open Monday to Thursday 8.30am-8pm, Friday 8.30am-4.30pm and Saturday 10am-4pm.

Kinds Regards

Jess

Epilepsy Action Helpline Team

[stampton in reply to EpilepsyAction1]

Thank you so much for your reply Jess, that’s really helped me understand a bit more and all your links to further reading will make the journey a little bit easier.