Hi this might seem like a strange question but I was wondering how many other epileptic people find having routines help them cope better with some of the issues of being an epileptic? For example taking your medication at the same time everyday and making a note or telling your caregiver that you have done this or if you live alone having your caregiver check in on you daily be it in person or by phone or even for simple things like going out or doing housework? Also if these routines get upset in a big way do you find you suffer with things like confusion or the epilepsy brain fog or even stress induced headaches? I am just wondering if it's just me as I have been following routines since I was 7yrs old I'm now 40yrs old and the other day someone really tried to provent my routine just from spite and I ended up with feeling both confused and having a stress induced headache and thought of how important it is for people like myself to have these routines so that is the reason for this question is to truly see how many of us really are dependent on routines.
How many people find a routine is very imp... - Epilepsy Action
How many people find a routine is very important to there daily life?
Hi Wintersbite
Communicating with people on here and through other social media, is a really good idea. So I hope you hear from others in this community soon.
If you don’t, as well as managing the HealthUnlocked community, Epilepsy Action has other ways for you to contact others. These are:
Online community forum.epilepsy.org.uk/
Virtual groups epilepsy.org.uk/virtual-groups
Local meetings ¬ epilepsy.org.uk/involved/br...
From our experience, in most case people find it helpful to talk to or contact people who understand what they are experiencing.
Regards
Diane
Helpline Team
Yes I have always used a routine all my life, having had JME epilepsy since 14, now 65, my trouble is if the routine is badly broken, some major event affecting me, try to get back to something near THAT routine, I panic, which means stress, which usually means a seizure! That is why I ALWAYS prefer my own company, I DO NOT like change, in any form! An example is a change of bank, I was with old bank since 1973, but the trouble I was having with them 🥴🙄 incompetent!!! Now getting into new routine, finding people being paying for years🥴Actually one of these "company's" I had been paying insurance for a cooker for years routinely🙄I blocked their account, they rang me up, "Why should I pay you?" absolute silence for about ten seconds, down their end, then they put their phone down [that really made my day!] I have a routine for every day, when I get up, doing the washing, weekly shopping, boringly routine! About eighty percent of my seizures happen in the morning, within about two hours of waking up, or an important event I am TERRIBLE under pressure, I gave up doing O and A levels I would blank out starting or just before them! Try to get all my dentist, doctor, epilepsy specialists, etc appointments in the afternoon! I am lucky in that I have auras before a seizure, and having had over 400 of the blighters, set routine to adjust to them! I NEED ROUTINE!🙄
Thank you for responding to my question you seem to have a similar routine type to myself unfortunately I am a photosensitive epileptic and I sometimes get auras but unless they involve a body jerk ( my arm sling's out to the side for no reason and full force) then the auras mean nothing at all ( I pay attention but there just a nuisance), as I mentioned in my question my routine has been upset this week and I'm trying to get back to my normal routine but it's become even more difficult as my dog is also suffering from this horrible person who upset my routine and my dog is now unwell with anxiety and nervous issues that I have delt with once before at this level but this level was overcome about 4yrs ago and was during a time when both myself and my dog where in a domestic abuse situation so my dog is reliving this experience which is making my routine harder to get back and with the added pressure of how serious my dog is the stress is mounted.
I really do appreciate your response and it really shows how important routine is for people like ourselves and how deviating not having it can be.
I can fully empathise with you, I have an aura usually about 20 seconds before a seizure, I tighten up, like an electric warning, I then move as quickly as possible to a soft chair or double bed especially for the purpose, I relax or try to as best possible and wait? Rarely I'm able to make it through maybe have a short sleep? Actually one of my neighbours, nicknamed me "the Ambulance man!" my numerous 'visits'! I live on my own, my own mancave is important! I have not worked since 2003 when I first moved in here! Nice neighbourhood, one of the more older residents around here, quiet, convenient to town! Although living in an area I have as long as I can remember wanted to move away from, never anywhere to go even if I wanted to🥴 SO BORING!!💤
Yes I get what you mean I also live on my own except for the dog and other than my caregiver ( who lives about 3hrs away from me) being my age all my friends are older than me and when I say older I'm kinda leaning more towards the pension age range I don't know what it is about this age group but most are alot kinder to people like us when my mum passed away this age group everyone I knew in it wanted to adopt me and I was in my 30s and married at that time I thought it was sweet and funny but I have a lady friend who I do think of like a mum and once a fortnight she gives me my orders" stop living in your head, get off your game your coming out to town to meet me for a coffee and a chat" YES MUM lol I do warn her she would never be able to handle me I just get told I'm no problem to which I remind her I'm sarcastic ( in a good funny way) and my sarcasm has no limits just ask any and all of my doctor's especially after I've had a seizure ( I don't think asking a doctor what there doing at your flat and being told that you've had a seizure and then replying to the doctor how that explains the headache but still what is the doctor doing there and then getting told your normal lol)
Most of my friends were always older than me, always associate with the older generation, trouble I am a member now of the older generation, being a historian, a real history nerd, I have been writing a book [which this site knows all about🙄] true crime, for 12 years, reckon I'm the number uno on this particular subject, but it appeals to my dark sense of humour, which appears in reams of it! My friends and family all know about my dark sarcastic sense of humour, keeps my wheels turning! I've forgotten what true normality is!😆
Maybe the dark sarcastic side is our epileptic minds because don't you find it funny that both you and me both have epilepsy and are both sarcastic people I kinda like some history stuff but not the stuff you learn about my interest is I guess you could say I'm like a cat and have a bad curiosity I'm also still a big kid lol but my taste in TV is interesting I love Horror, Anime and cartoons it kinda balances everything out but amp's up the sarcasm lol
Yes, absolutely. I'm not an extreme epileptic, my seizure cycle happening around every two to three weeks. Sometimes I do break from it a bit, sitting up late to watch a movie or spending longer than normal on a stressful task. It's why I don't travel if I can avoid it and don't like change or potentially stressful relationships.
Yes I understand what you are saying my seizure cycles are funny in general I should have one once a year ( that is my normal I'm fine with it and I'm actually happy with it it's part of my routine lol) but the little devil don't like to keep to this for years it's yearly then changes to anything from monthly-6 monthly or even a max of 5 years ( if I go over the year) and my stress level is very high I'm actually due one now but the little devil is playing games again. I was just on my way to bed when I got your reply and because of how much I appreciate you taking the time to reply I stayed up later to respond and to thank you.
Yes never really thought about seizure cycles, anytime of the year, hot or cold, wet or dry, ALWAYS caused via stress, wish my epilepsy specialist could work on that, obviously a major factor in my "seizure cycle"! Juvenile Myoclonic Epilepsy caused via fracturing head in swimming pool aged 14 in 1970 for the record! Bit too late now!🙄
Don't know what caused mine but all I remember is waking up and asking my mum where was the man in the funny hat ( my grandfather RAF hat ) and the big black andrex dog Judy ( I was 7yrs old I didn't know it was a Labrador all I knew was it was the same dog as on the andrex ad back in the 80's) and that's actually my first memory of life ( little bit more to this memory but I only remember my life from the day I fell asleep and woke up with epilepsy nothing before the epilepsy)
I have this theory that people with epilepsy are also especially sesitive to stress, especially burnout. Two symptoms of burnout can be seizures and higher frequency of accidents/falls, which can lead to the kinds of injuries that cause brain trauma which can leave the person with epilepsy. I had my first seizure when on a hayfever med called polaramine. I stopped the drug and no more seizures. Then, when 19 and doing tertiary study they started again - nocturnal tonic clonic seizures which came with simple partials during the day. My years unmedicated taught me the average cycle and what would bring it forward or push it back. Physical and mental stress would always bring it forward.
Yes👍
You might be on to something but also we must never forget that we are also very special and unique ( I would have put lucky but not everyone feels lucky to see things differently because of having a gift/ curse like we have)
Yes, mine was brought on by working hard on a stressful project, encephalitis was the result.I was found at the bottom of the stairs, convulsing.
Have to be careful to keep within limitations, but I want to do more!
Hi I seen that you said about stress and how like everyone else on here you mentioned that the greater the stress the worse it is for you I'm actually the other way around I can handle quite a lot of stress but I find as soon as I'm not so stress I have issues or I've I'm overwhelmed with more than one major issue at a time I have to be careful.
Actually am on an agreeable medication Briviact and Vimpat, had one seizure since April 2018, unfortunately too late? A recent hospital visit assured me 🥴 [can really be subtle those dr's?] "your next seizure will probably be your last!" fractured skull symptoms! Yes I have a bad habit of staying up late, bashing my laptop into submission most nights! Thus proving that I'm not like yourself photosensitive! Some consolation?🥴
I don't think so I've just got over Colon Cancer 5yrs free and then I had my first seizure so what's next I know it's the epilepsy that's my curtain call but at the moment ( God) him upstairs don't want me and ( Devil) him downstairs don't want me so I'm stuck here ( trying to find something to do for fun not easy)
I have an Irish dark sense of humour always helps me!🙃
Your Irish are you? Hello neighbor I'm Welsh don't worry I live in England so I've had all the jokes 😎
Conceived in London, born near Belfast, father born in Belfast, mother born in London, grandmother born in Dublin, brother now living in Wales, I'm a retired genealogist, but I always prefer my Irish dark sarcastic sense of humour! Without it☠️?
No I get it I just thought I'd ask as most of the people I talk to on the healthunlocked site are mainly from places like USA so it was extra nice speaking to a fellow local shall we say who also gave a great conversation and lots of laughs ( reason why I said extra nice )
Yes I know what you mean, some of their 'terms' or shortened capital letters, or even weird medications, like some of their "comedy" mentioning people whom I've never heard of before🙃🤪different world, different parallel universe🙃
Normally I get told things like that about us lol but I have to admit that my favourite one has to be I married a person from Morocco ( now divorced) and everyone there kept saying I was English I said No I'm Welsh I was born in Wales and I got Wales is a Town in England and England is also known as UK/Britain so I had to explain that the UK is made up of different countries UNITED together and thay are England, Ireland, Scotland and Wales and I'm a British Welsh citizen due to being born in Wales my partner didn't get it until thay actually moved to the UK and seen both Wales and England for themselves lol.
Having done so many family trees, so many links with so many different countries, especially in the UK, it was not until I started my true crime book in 2009 I found my true calling, when I stepped into the vicinity of the noble city, a nice chill up my spine, I spent a whole week in the place, writing about Irish murderers who killed at least 16 people [probably more] ....... Edinburgh, as they say [somewhere?] I will be back 🤗🤗🤗
Absolutely, how cruel and insensitive of that person.
Luckily I now need medication twice a day, it was horrible for three, or more.
My other half checks the contents of my daily Med box, checks to see the used tablet strips.
I fill up for next day, they double-check.
Maybe too strick about the time of day (half an hour might not make much difference).
The routine helps to keep me sane.
Now, I can do only one major task per day, else it's a trigger.
Stress, worry, anxiety, don't help.
Good Morning, if you're in the UK. I was diagnosed with Epilepsy when 20 years of age. First one whilst awake, after that in my sleep. When leaving Hospital (after 3 weeks) the Dr said to me; Mark, take your medication and there's a good chance you won't have another seizure. Don't take it and there's a good chance you will. Guess what, I've been taking medication since.
I now take other meds for a different reason. However, they are all in my diary (phone) along with times and alarms. It works for me.
I keep strictly to a routine for taking my meds. Outside of that, I have no routine.
I guess what I'm saying is that no-one will prevent me from taking my meds. The appropriate med, the amount & time to be taken.
I take my medication twice a day regular as clock work 7am and 8pm but about 7 years ago I was diagnosed with cancer but before it came back as a positive on cancer it was a unknown illness and because I couldn't keep any food or drink down my old doctor at the time actually turned around and stopped all my epilepsy medication just like that he said that it was a waste of both money and medicine if I couldn't keep it down ( I wasn't even offered any other form or anything like anti sickness to try to keep my meds down) I've been epileptic since I was 7yrs old and my mum really drilled in how important medication and taking it is aswell as daily routine to help remember to do things so now I'm stuck 6 months with no medication and as soon as I see a new doctor due to moving I tell him about everything and he is shocked can't believe a doctor would do that I told him try 7 because of my right for a 2nd opinion the new doctor asked for 24hrs thinking I'm pulling his chain next day I get a call from him " please come to collect your epilepsy medication but can you see me today at X " I see him and he reminded me how dangerous it is to go without medication and to be suddenly stopped like I was is extremely dangerous he said even an hour is better than nothing and how did I manage to stay safe I told him how my mum taught me to do routines and medicine and he said that it was my routine that kept me safe all this time this was also when he confirmed that he suspected my unknown illness was Cancer and that due to that I was very dehydrated and could I try to keep a drink diary which I did and proved that I was drinking over 10 pints of water but I was still dehydrated two days after that I'm in hospital and having a operation for cancer.Point of story Meds aren't in our control even if we do everything to take them what if thay get taken from us? I was in real trouble and I struggled with memory as a result
In no way am I questioning your need for routine. Who we are, what we are and our circumstances are all different. I was attempting to relate to you how important it is to me to take my meds.
10 years ago I was diagnosed with Cancer and it was recommended I have XYZ treatment. I take Phenytoin, 4 x 100 mg capsules, at 7 pm very evening. Before I agree to undertake any treatment, I ask if there will be any affect on the Phenytoin.
I am not likening my circumstances to yours. And well done to your Mum. Sounds like you may have your epilepsy meds in place. Now the same with any Cancer treatment recommended to you.
I think you might have slightly missed my point and for that I'm sorry for the misunderstanding .
I was trying to point out that no matter how religious and reliable ( how good we are at taking our meds) there are some things that are out of our control in my example 7 doctors refused my medication because I was ill but instead of trying safer options like the last Dr who gave me anti sickness medicine the other 7 thought it would be cheaper to just stop my epilepsy medication ( something outside of my control) this frightened me because I knew how important taking our meds is so all I could do was my routine and pray it was enough when the 8th Dr gave me back my medication I felt so relieved I almost cried with joy ( because I had now been put back in control of my epilepsy and I wasn't in this strange limbo I did have medication that I could actually physically take ).
That's all I was trying to say is sometimes control is taken away from us without reason no matter how well our meds routine is and we can't do a thing.
I'm sorry for the misunderstanding please accept my apologies.
As you can probably guess, I'm sat here with a computer on my lap. No need to apologise. I've sat across from Dr's/consultants who have suggested treatments for the Cancer without any regard to the affect on the Epilepsy. However, I have not had my prescription stopped and I agree, you can't have a meds routine if you don't have the meds.
Hey, as I said, sounds like you may have your Epilepsy meds in place. Is there a plan for your other medical challenges..?
I'm Cancer free now thanks and the only treatment that worked for me was surgery but I did tell them at the start the cancer won't get me the epilepsy won't allow that the epilepsy is the boss and when it's time that is what will do it so I'm not worried. I got told I was in shock but I've never broken down and done the oh poor me I've got Cancer or wow I've survived cancer I've been ok I had cancer so what what's next? Sorry if this sounds heartless but I think everyone on here or reading this might understand why I was like that because we have epilepsy and fight every day some for years we are very strong people and we will NOT let another big illness take away what we have fought so hard to keep of the little normality we have left I was just lucky enough to prove my point.
Hope this makes sense I do get told I'm odd because I talk about my epilepsy like this but I just think it shows I have made peace with this horrible condition.
You get onto any roof top and shout as loud as you like.
Good to hear that you're Cancer free.
There is absolutely no harm in taking control of your heath.
I realise Epilepey can't be cured. However, it can be controlled and that's what I'm doing.
Take care of yourself & here's to keeping well.
I think that is what we are all doing and with sites like this as you said we shout from the rooftops proudly and the charities like epilepsy action can keep working hard to help us have a better life.
Take care
Someone created a Facebook page for me years ago. And added as my picture, a T shirt that says. Epilepsy is proof of having a brain. What proof do you have..? 
I used that in a augment my words where " I can prove I have a brain I have epilepsy and that's a BRAIN DESEASE what's your proof of having a brain I know you don't have as good as proof as I have" lol sorry but sometimes it just pays to have this condition
Absolutely, and why not have a bit fun...
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