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angie2312

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Hi all :banana:

My name is Andrea , I am 33 and looking forward to making some new friends

I joined this forum because for as long as I can remember I have suffered with what I call my funny five mins - Until a few years ago I just thought I was a little strange all of which wasnt helped by my doctor who said all of my symptoms were bought on by the fact I drank Coke ......Hmmmm !!! So I on I went and put up with these FFM (funny five mins) ..... Until recently I did a little research into them and was amazed to hear it had a name and it wasnt just me being weird :roflmao: ... So now I am waiting .... and waiting ....and waiting to see a Neurologist - but the long and the short of it is they think I may be suffering with Simple Partial Seizures ! Which to be honest I am kind of relieved about because just lately my FFM's have been getting stronger , longer and just plain horrid and I tend to spend most of my days sleeping to try and get over them ... which is not good ... I am young , I want to be out there shopping and having in fun !!!

So anyway would love to hear from you all - and hope I havent bored you too much :clap: THE END
 
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Howdy angie,

Welcome to the site - there's a whole universe off information regarding seizure's and epilepsy on this site, and more importantly (to me) a great bunch of people who enjoy having a laugh as well as helping each other out with questions, etc.

So, put down the bottle of coke, put your feet up and enjoy.

What tends to happen during your 'funny five minute' periods ? :ponder:
 
Thank you so much for taking the time to read my constant drivel :roflmao:

My FFM's are bizarre to try and explain - but shall try none the less .....

I start with a feeling ...Its kind of warm and tingly and not totally unpleasant , When I get that feeling I know its on its way ... Then I get the strongest feeling of De Ja Vous ( which is a ridiculous feeling because I am normally doing something I do every day ...all the time) and then I feel a little cloudy , a little sick and VERY shaky - the whole time I am with it , I know whats going on around me but just feel a little not there (sorry this probably makes no sense ) . They last about a minute or so . But they leave me exhausted and completly drained . I can go weeks with not having any of these at all .... But then some weeks I can have up to about 9 a day - They are certainly not nice !!!

New friends and a giggle along the way sounds like just what I need - shall try and lay off the coke too

Thanks again for answering me
 
angie - there's no such thing as drivel on this site.....it's usually just somebody either wanting to vent off about what happened during a sz, or questions about what can be done to help the condition. So, no such thing as drivel on here hun - type away all you like :)

Well, the first part you describe about when you get the feeling that IT's on it's way is an aura (do a search on the word - you'll find loads of info)....I get 'em too. For me, I find 'em pretty handy as it helps me find a location to get away from Joe Public, or just get to a 'safe' area before I have a sz.

The second part you described is definitely a sz in my opinion. The brainy ones on here would be able to pin-point a bit more accurately as to what type of seizure you are getting.

PS. I think for the time being, it is a good idea that you're coming off the coke - caffeine can be one off our worst enemies. Myself ?...I limit myself to three cups off coffe, maximum, per day. Any more than that, and I tend to go 'off the rails' a little, and don't enjoy the feeling. So I can kinda see why your Doc says it can be related to the caffeine intake.

So there you go ^^ that's my 'drivel' over and done with :roflmao:
 
Hey Angie

Don't worry, I love reading drivel.

This is a very supportive and knowledgable group, we are all here to help each other, this is a great place to let off some steam or sit back and have a laugh

Welcome to CWE

Take care
 
Wow ... thank you , thank you , thank you ... You have know idea how much of a relief it is to talk to someone who knows what they are talking about . I have a very close family and they are all very supportive ... but my mum doesnt want to hear the word epilepsy around her as she says it scares her too much . Bless her !!!!

Its very intresting to know that all these things have names and are recognised - after thinking i was just a bit loopy for years its a relief - I shall certainly be looking up auras - but they are very handy for giving you a chance to get out of the way ... just recently my FFM's have been quite powerful and I feel like I am grinning like a cheshire cat during them - and i cant get rid of this stupid grin ... so when I have the feeling of it being on its way i get out of the way as dont really want people to see me with a cheesy grin all over my face (lol)

I have indeed stopped coke now - Not because i find it makes them worse - well have never spotted the connection before - but just because I think my body might have got sick of the stuff ! I find it horrid now

I am really very very grateful for your advice - I dont know anybody with any type of epilepsy , so lovely to chat to someone who knows there stuff

Thanks
 
Thank you Crazy monkey - I love it here already - Your all SOOO nice

If you like drivel .... then I am your gal .... Keep watching :woot:
 
I didn't know stuff all about E until I joined CWE, the members and moderators here are brilliant and have helped me no end. Like you said, it is a relief to find people that understand and that are willing to listen to the word epilepsy rather then running a mile or pretending it doesn't exist.

Once you get your diagnosis, maybe you should sit your mum down and educate her so that it doesn't scare her. (My mum buries her head in the sand) afterall, if you have been getting these just about forever then your mum should be used to them, the only difference is they now have a name.
 
Thank you - it is hard with my mum - but she will get her head round it - I keep printing up information and leaving it all over her house to find !!! But will be dragging her with me when I go to see the neurologist so hopefully they might be able to make her see what its all about ! I do keep saying to her that nothing has changed since before I saw the doctor - I am still me - You know what mums are like

I am so grateful for all this wonderful advice - I cant even tell you :eek:)
 
Thanks for sending the link - It was very interesting to read other peoples experiences !! I have put mine down as FFM's for so long now - and just thought that was me and I would always have them
Thank goodness for all you lovely people and your kind advice:yippee:
 
Hi Angie im new to the site also . From 13 onwards i used to get spells were if i was doing something suddenly everything would go haywire for 10 seconds or so , this could happen once a day or once a month . I had a full seizure when i was 20 . Ive being on medication ever since which has more or less controlled the seizures but i still get those strange episodes .
 
Hi Andy

Nice to hear from you

I am so pleased to be able to hear from people with the same things happening - It certainly makes me feel more normal aftr such a long time of feeling like a bit of a fruitloop ! As you have probably read already , I am waiting to see a neurologist now , but am 100% I have epilepsy and so is my GP - I feel relieved I am finally being taken seriously - although I have to say I am worried about the possibility of losing my driving license , I love driving --- But I know its not forever !
 
Hi Angie - welcome!
You are difinitely normal. Remember though, Epilepsy is only a label. You do not treat Epilepsy. You find what causes the seizures. Most doctors will only put "duct tape" over the symptoms in the form of medication. If you can find out what causes your seizures you will be far healthier in the long term than not.

If you found that soda made matters worse, then you need to look into other foods that might be the "cause" of your symptoms. My daughter is showing signs of having hypoglycemia, and it didn't even show up in the normal testing. We had to go to do other testing, that wasn't even suggested by conventional medical doctors. However, a prominent doctor says that hypoglycemia is a common cause for seizures and many neurologists don't even know this.
 
:?:?
thank you for the welcome

I will certainly look into that -- at this stage I am willing to look into anything ! For the last few months I have been feeling worse and worse , and am incredibly tired ALL the time. I think , well know some nights that I am getting my FFM's during sleep and I am 33 but have to sleep EVERY day because I cant go a whole day without a nap ! I feel useless and feel very sorry for my children who have to put up with their mum asleep all the time . Just want to feel normal now

Any advice anyone might have for me would be greatly appreciated xxx
 
angie : you'll be surprised just how much children DO understand. Whatever you do, don't waste time and energy worrying about how it will be effecting them - that will only bring on another sz (especially in my book) ;)

My sz's are mainly during the night, if and when I have 'em. I usually get just the one not long after I've jumped into bed, as that's when my mind likes to kick in and try and solve the riddles off the day. I've been meditating now for a good couple of months, as soon as I get into bed, as it helps me drop off to sleep.

Take a look into your own life and see what things may be causing your sz's. Do you get more when you are feeling soooo tired ?.....Is it through stressful periods in your life ?.....is it a dietary thing ?

Mine is definitely a combination of stress and tiredness.

I told you there will be a minefield of information coming your way on this site from a great bunch of people - hang around and you'll find out loads more. :rock:
 
Mine too , seem to be when tired and stressed ... but as I spend half my life being tired its a vicious circle ! I can have up to 9 a day when its bad but have been woken several times a night recently with them too !!! Probably explaining why I am SOOO tired all the time !
My kids are fab .. its just my guilt that drives me mad . I generally try to sleep when they are at school so i have a little bit of energy when thy get home to hear about their day !

If diagnosed , and put on medication .... will i feel better ????

Thanks again for listening to my moans .... Your all great on here
 
Hi Angie welcome,
I'm a newbie too, It's my son [aged 26] who has E.

Please make sure you get yourself thoroughly checked out before you hit the meds, as once you start it's hard to get back. For some they work but for others it is the start of a nightmare. I am sure you will gets lots of advice here on the tests and questions to ask your neurologist. I wish there had been something like this 20yrs ago. Ben [my son] has done all the meds and from having 2 grand mal fits ayear he now has 800 abscences and 6 grand mal seizures aday. He is about to start a Ketogenic Diet [ low carb, low protein, high fat].

See if you can get your GP to do some blood tests while waiting for Neuro, thyroid, anemia, vitamin deficiencies, [might explain why you are so tired].

It is hard for parents to admit that their child is not perfect [no ones perfect except Ben], I am sure acceptance will come in time.

I hope I haven't put a dampner on things for you, but I am sure if you get as much knowledge as you can you will soon be back on track.

Keep Happy:)
 
Hello and Welcome to CWE, Angie. If and when you start on meds, there may or may not be side effects. It will be couple of weeks or longer for your system to get use to your meds, so you may be tired there for a bit, but everybodys is different.
Your children will understand what is going on. Just sit them down ( have information with you for their AGE) and let them know what is going on. :ponder:Includ them in everything that will be going on with you, that way their will be not be scared when things may happen in front of them.:banana:

Nancy
 
Hello - thank you so much for taking the time to read my message

It sounds like it must be very tough for you , but you also sound like a wonderful mother . It is very hard to for a child to have a label put on them . I havent had it even a fraction as hard as most but my youngest son was diagnosed ADHD at 6 years old - he is 10 now and has to take a combination of drugs for his own safety - but is a wonderful boy and I wouldnt have him any other way -and I'm sure you must feel the same !
About three months ago I was diagnosed with complete and utter exhaustion and they did every blood test going to try and find out what it was but it all came back clear- unfortunalty I kept my mouth shut about my funny turns because I had tried to explain them to my GP five years ago and he treated me like i was a little mad and told me it was because I drank coke - so didnt have the energy to say it to them again at that time !

You certainly have not put a dampner on things , and I am grateful to be able to speak with such lovely people . I dont know anybody who has epilepsy so have felt a little isolated - this site is just fantastic

Take care xxxx
 
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