I'm posting this for my brother he's not yet been diagnosed with epilepsy but we have been monitoring him for some time I do have epilepsy and I have noticed that my brother seems to be having daily grand mal fit's and these seem to happen 9/10 times when he has a bath ( everytime he has a bath he has a grand mal fit and the other 1% of the time he may also have one in bed but he always has a grand mal in the bath) unfortunately we can only monitor him as we are in a catch 22 situation but I've never known a situation where just having a bath can cause this type of fit and I was wondering if this is something but also is there any safety measures we can do to help as everytime he hits his head on the bath ( I'm actually thinking about a crash helmet just for when he has a bath now that's how bad it is) my brother is now frightened to death to even have a bath but unfortunately at the moment that is the only means of bathing he has I've already referred him and he's on the waiting list for a shower to be put in.
Thanks all for any help and advice I really appreciate it.
Thank you
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Wintersbite
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Thanks for your reply I'm waiting for the local social team to help with putting a shower in for my brother as you rightly said there safer but since I wrote my question here I have found out that my brother had a terrible experience when he was a child which I believe is the link to the fit's in this unusual event I believe that the stress of the memory of the original event is so terrifying that it's enough stress to cause a fit every time my brother has a bath so it's causing a trauma related fit which I have heard can happen but I've never known to be like this I'm still trying to find ways to keep my brother safe until a shower can be installed for him.
I have mentioned those to him but the fitting of the one thay have is either never to be removed or refusing to be attached lol but we do have some good news due to my dairy keeping of his fit's my brother now has an appointment with the epilepsy specialist in march next year his own Dr said that it's highly likely that given the new information and the dairy which helps alot my brother IS highly possible to be a epileptic.
This is a little different. My son has seizures in the shower, many. He is an adult but I think it had to do with making the water too hot and the time of day. Most of his seizures were at night so now he takes morning showers and they are shorter and I don’t think he makes the water as hot but I can not be sure. . It seems to have helped but those shower seizures are horrific along with any bathroom seizure——Just So dangerous.
Sorry in my delay in responding to you I've been having trouble with my email and I've only just seen your message but you are right my mum made one big bathroom rule for me growing up as I have had epilepsy since a child and I'm now a grown-up myself which has caused it's embarrassing moments but my mum always said " Never lock the door and if it's only me and her keep the door open so she can listen out for me better in the shower" I'm only allowed a 10 mins shower before I get a call asking if I'm ok a long shower is 20 minutes if I have a bath because I'm at my friend's house I ask my friend if she wouldn't mind having the door open if we are just us and she sits the other side of the wall and we chat while I have a bath or if this is not an option as I'm not allowed my privacy would she mind coming into the bathroom with me so the door can be closed ( if there are males in the house) and we will chat but I explain that she's just keeping an eye on me and if I go funny pull the plug even though the water is for a baby my friend even if I'm alone and need a shower at home will have me take a landline phone into the bathroom and she will listen out for me just so I can have a safe shower but the funny thing is every time I have had a bathroom fit I have been in hospital and they told me to lock the door and I would be fine clearly my mum had the best way to deal with bathroom fits. I tell my brother this but he doesn't get it but his neurologist has said he has been given the best advice to date and that what I've been telling him is so accurate it's what they would tell him I told him it's because I ask questions and I've learnt to live with this.
Take showers. Yes, water immersion can trigger seizures. Many people with epilepsy have FREQUENTLY drowned in a bath. Getting you out in time is NOT easy. You weigh much more when you're submerged.
Thanks for your reply I do know on a personal basis how dangerous baths are but as I stated in my post my brother only has this option and I've even mentioned changing the time and temperature but from what I've learned it may be due to a surpressed memory but my brother is a bit difficult to tell which realty is the right one sometimes I have told him on meny occasion to have a recording of himself during a fit for his epilepsy appointment as it will be so benifical for his case and he refuses to do it and only him and his partner have seen these fits so it's tough to say as our real dad informed me that my brother can play on conditions others have and our real dad informed me that as far as he knew I was the only one in the family out of 3 siblings of 5 ,1 he hasn't been in contact with so wouldn't know about her who has epilepsy as he didn't know it was in the family I informed him that it is in the family and the family member he has no content with also has it our real dad informed right then that my brother didn't have what I had but it could just be that they don't know what to look for so I said I would help if he wants and if he is playing games I will get him found out because he will refuse to do what is required and change his life to follow the rules to make a safer and better life
I've had epilepsy Juvenile Myoclonic Epilepsy for fifty years and had a few seizures while in the bath, so lying in the bath I always wrap the plug cord around my big toe, okay I never had since my last time, about thirteen years ago, actually not had seizure for three years, but it can happen, a matter of routine. I always have a shower every day, matter of routine, much safer. I live on my own for 19 years, and have seen others and acquaintances have told me what happened when I have had a seizure, I was a postman and they threw me onto the postbags or a good friend told me when he visited my house how the rest of the family just walked past me when I was in the throes of a seizure! I have an aura before the event [or panic attack]. Over the years I have helped quite a few people when they are in a similar position, so I know the prescribed routine.
Wow my brother said that he gets aura's so I've made a big deal over that he pays huge attention to them as unfortunately for me I don't I just go no warnings in my whole epileptic life I think I've had maybe 2 or 3 warnings I knew it was different to the just pay attention one's I sometimes get but nothing happens I just didn't know when it would happen so I always used to tell my family and friends anytime from now up to a month but this is why I know it's a "true warning this time because..." Like you I also live alone I've this time round been on my own for 3 years due to getting out of a bad marriage but like you said about your family just walking past you when having a fit my ex-husband might have done that aswell but I got nervous after he stopped with the epilepsy jokes after a fit I had and I've wondered if instead of leaving me did he do something my ex-husband was a drink and abusive so my Dr said I had good ground to leave ( I also have to tell people not to touch me except my head as I have spinal damage to the point of one more fit could paralyze me according to a Dr 3 fits and my ex-husband ago but I'm still walking)
I am in somewhat similar situation, my back is bad but I had a double seizure in 2018, broken skull, a subsequent MRI in 2021 diagnosed that if I had another seizure would probably be my last! Having had over 400 seizures since I was 14, I was quite alarmed, I have not had one since Dec. 2019, " but I'm still walking"!
Sorry to hear that but isn't it amazing just how strong we have become because of this condition even though at the same time our condition also makes us weak. I've been asked would I ever imagine what my life would be like without my epilepsy and I have said that my epilepsy life is all I know so I wouldn't want a life without my epilepsy as I wouldn't be me and even though epilepsy can be a pain it's the only life I know and want.
Strange way of putting it I have been living in a glass cage all my life, sickness including epilepsy holding me in, away from real life which I have NEVER had, I can see it but never REALLY had a real normal life! I'm a survivor always have been, fought some bad battles, hardened my general outlook on life, I had no choice if I want to live, it gave me some 'backbone' [pardon the pun🙄]
True but let me ask you this what IS a normal life? I'm a photosensitive epileptic so I have to avoid all flashing lights and I've only just been allowed to play computer games for the first time in 20yrs on my phone and my new switch and for me it's huge but as soon as I see a flashing lights warning I'm asking Game and thay tell me if it's ok or not I love a franchise called Dragonball if you haven't heard of it think kinda mortal Kombat but with comedy and you will get the flashing lights warning but I keep my contrast very low. Also like you I have other health problems but I'm very sarcastic in a good way and I'm not mentioning this for symphony but just to show a point 7 years ago I was told that I almost passed away from colon cancer I was lucky thay found it when they did I was 34 my husband at the time was doing the woe is him but me I just said " this won't kill it will just make me stronger it's only a test as if my epilepsy will move over to let something new finish me off after years of the epilepsy getting me ready trust me it's the epilepsy that's going to end me it's already thrown me down a flight of concrete stairs which is why I never carried my children down stairs doc once you get used to me you will know I'm right and just ignore the comedy when I'm I'll that's how you know I'm not well but him on the other can you shoot him?"
I got the all clear and had a fit that was different at the same time so I'm now two years fit free but still wondering why I had my last fit where instead of the standard feeling like rubbish my last fit had me feeling like a million bucks I knew it wasn't good I even begged the hospital for a brain scan because it's not normal but they ignored me it wasn't until my options appointment that we found out what happened with that fit.
So as you can see we are normal just a different type of normal enjoy your life as a epileptic you have a normal epileptic life which to the healthy people might not be normal to them but just remember it there type of normal that treat our type of normal as strange and make us feel this stigma for example my favourite color is black am I going to be told it's not normal for girls not to like pink and get it forced on me to be more girly that's a horrible thought I would rather be odd because I'm happy just being me yes it's a pain sometimes having the rules we have but we have more fun if you think about it.
I put on my pip questionnaire that I live like a hermit so glass cage isn't much different but try not to be me when doing your benefits form's I'm sure that's why I get more often than not we need to see you I really can't help my sarcasm huh haven't heard back from pip but still getting my disability maybe I got them with the hermit thing oops oh well have fun enjoy your life be a devil
My seizures are set off by stress, and anxiety, so have to stay as cool as possible, with oodles of sarcasm and black humour! [you need it over in Northern Ireland🙄]
I was cut off from PIP because I could walk 200 metres, so eventually gave up, two years later, after living [surviving] on basic benefit, I was told [by my brother in law] I was eligible for a pension, what they didn't tell me I would not receive it until seven weeks until after my 66 birthday! Some sort of long winded form something akin to PIP procedure if I wanted anything resembling money in that time? My GP is horrified that I could not get PIP but was not allowed to verify my state of health, that's NHS in Northern Ireland, quite rightly the worst in UK😣🙄It will take me at least two months paying off my debts for this Civil Service 'oversight'🙄
You should be able to get pip even though you can walk 200 meters I can just about walk that but I suffer pain and I told them as much these forms are not worded well because how do you explain that sometimes you can't even get out of bed let alone walk and other days you can walk but it hurts so much you cry I live 5 minutes from the town but I have to get a taxi home just because it's up hill I've been stuck in a wheelchair and have to use a zimmer frame all before I hit my 40th birthday and I still tell the doctors like hell I think I actually frightened one doctor because I'm now banned from any and all mobile scooters and automatic wheelchairs oops oh well just have to find something else for them to spoil my fun but that's going to be a hard one to top lol
Actually because of my bash on my bonce, I can't now walk 200 metres, over and I get😵I want to get out of the area I live in, which I've always hated, but more forms🙄😵 I would lose patience with mobile scooters, I have very shaky hands, not reliable?
I just asked the doctor simply if he thought it was wise given I have the tonic-clonic fits he then said he couldn't see why not and I just mentioned how I could just imagine it being my luck that I have a fit on the thing and thay end up chasing me for miles and probably down the motorway or something until either I come around or the thing runs out of juice my doctor thought about it banned me and put me on a travel ban apparently due to my back but I think it's because I put that image in his head because the few times I did have to leave Devon to go back to Cardiff if I sufferd with my back I just got servers you right for not listening but here you go and next try to deal with travel sickness like this I stopped the 3rd degree and said this is the best way unless you come with us Doc.
The forms you mentioned for moving is that for benifits and housing or something different in Ireland because in England and Wales yeah you have your tax and benifits to fill out also the council forms but you can privet rent instead of filling out more forms for housing or council properties and if the forms confuse you why not ask citizens advice or another charity like that to help you fill out the forms I've even had the housing department of the council help me do my form's.
I have NH3, benign tumours on my back, [collapsed chest] and prolapsed discs so I'm no superman in the back department, but my pension as from yesterday means a few more pounds in the pocket, I have just tried walking about 2 miles to see my estranged sister, I won't do that again, she was not in and I am presently exhausted, pools of sweat etc [I'll pay for that for the next couple of days?]Forms have always been my nemesis , hate them😤😤 We have systems over here, very loosely based on the UK model, but positively neolithic!
The CAB is positively non-public friendly over here!
I get what you mean about being no superman in the back department I actually threw my back in my sleep the other night and when I over do things ( for me it's like doing the dishwasher shopping and washing given that I can no longer bend) I have a pillow on the sofa to help and I was issued a medical mattress but on bad days I need to use a walking stick but on the day's I've overdone it I can't move but I try to take keep my mind off the pain.
Ahh the forms confuse me but maybe a helpful hint is do you do any form of note taking I was started on this by my doctor from when I was a child to help me with my memory now I'm a hobby note taker so this could help you with forms by jotting down what you want to put before you actually wrote on the forms and then gave a chance to look over your answers and think about what you want to add or change before you have to finish the form and you will have got everything out of your head to help you fill in forms I find it helpful but that's just me.
My brain damage, and shaky hands means early dementia, a book I have been constructing for 13 years, looks very like being passed over near the finishing line? I like keeping notes, thus my house is a positive tip, bits of paper everywhere! [a real fire hazard?]I too have a walking stick, this being the worst time, sticky and hot, I have osteoarthritis, and that dander today was certainly not a good idea!
And what mischief are you planning on getting up to while you are recovering from overdoing it? Have fun and enjoy life just remember life is short and we can still enjoy life by having fun just be the innocent kid you used to be have fun
That's the spirit lol isn't this the true meaning of life to have fun and enjoy your time ☺️ and thay used to call epilepsy the devil's disease so why not be a little devil 😈 in a fun way life is more fun that way trust me 😉😎
I never said that exactly but sure knowing me I would probably end up going with a Dragonball quote because thay apply and the sarcasm and how funny thay are are just too much I actually related to this frenchies ( forgive spelling) because the main character is alot like me a big kid who has a fear of needles and a brain problem and my best friend still don't get why I relate to this even with all that but I enjoy it more than people so what is the problem this Dragonball z really helped me with my outlook on life let me see if I can find the image on pain just looked it must be on the other device but I found the wiki of the main character I will add that one it's a bit of fun
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Anxiety and seizures
How can you be diagnosed?
Son age 8 epilepsy diagnosis
Grandmal epilepsy 
