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Author Topic: Epilepsy with some of Rosalindís experiences and some details:  (Read 30832 times)

Offline rosalind dna

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I will try to explain in my best way but I am not a doctor, although Iíve had Epilepsy since my late teens thatís for nearly 40 years.
But there are many well-known people with this condition.

Of course if there are any questions are welcome and I will do my best to reply, if I canít itís because I donít know enough.   
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
First thing, I guess is to tell you just how I feel before the seizures/fits occur, then during the seizures/fits also how I feel afterwards.
Epilepsy can be passed on genetically but not in my familyís case as I am the only person with it.
--------------------------------------
Before the fit/seizures, my left arm (usually) goes into a sort of stiff spasm, which I know this as a sign but my legs also feel like a cross between as wobbly as jelly but also they feel so heavy that I have to sit down or Iíd fall over and harm or cut myself. I have done that before.
Also I start to feel very light-headed then I know thereís trouble coming so by then
I have hopefully managed to lie on my back in the middle of the sitting room.
--------------------------
During the seizures/fits, my whole body starts to completely tense up then my head rolls backwards as all 4 of my limbs jerk all over the place but whilst I am having the seizures/fits, I am unconscious and very scared because Iím not in control of my body.
-------------------------------
It always exhausts me afterwards and then I feel like I have not slept for 2 whole nights.
As I recover from these seizures, I feel groggy and if I try to speak then my words would sound like double-dutch so I donít try to talk for a while.

Also my legs always feel like a jelly so I stay sitting on the floor. In other times, I become disorientated where I canít find my way around the home that Iíve lived in for 19 years that I know extremely well.
As I know that I am feeling a bit better then I have a sleep or just rest until I feel ok.
---------------------------
I do not drink alcohol because of my Anti-Epilepsy medicines because if I did drink then epilepsy would not be controlled that well. But coffee, tea, water and fruit juices are fine and food too. 
These medicines work to control my brain in a similar way that when we take Vitamin C pills and we get a cold. Also I canít drive which doesnít bother me one bit.
As with every medicine for anyone, they are an individual thing so thatís why I have not named them.
--------------------------------------
Another thing, I canít drive as itís illegal in the UK to drive when someoneís (me) has had a seizure recently.
That includes strobe or flashing lights as they can be a trigger for a seizure, because itís called Photosensitivity.  So if on the news there are flash-lights with cameras then I turn my head away until itís over also as a way not to harm my head/body.
---------------------
http://en.wikipedia.org/wiki/Epilepsy
http://www.bbc.co.uk/health/conditions/epilepsy1.shtml

                        Types of different seizures/fits:

1. Tonic-Clonic (Grand Mal/Major) seizures, which are the type that I have.
The person loses consciousness, falls to the ground and their body stiffens and starts to jerk uncontrollably.
Because the limbs muscles start to tighten and then relax in turn. It is not possible to stop the seizure and do not try to stop it or force anything into the personís mouth or youíll break their limbs or teeth.
Some people may become incontinent but this happens in a rare cases.

2. (Simple) Partial Seizures: This type are called ďfocalĒ seizures and they affect just part of the brain not like the Tonic-Clonic (Petit Mal) seizures are similar to the ďAbsenceĒ ones, where the person loses their concentration for a few seconds or moment, but they are unlike the Tonic-Clonic seizures, as the individual doesnít always know that theyíve happened. Another familiar description might be like a daydreamer.

3. Atonic Seizures: Sudden loss of muscle control can make the person fall quickly to the ground and recovery is quick. This type of seizure is mainly begins as a childhood condition, but adults can have it and some where helmets to protect their heads. I have only seen people like this a long time ago.

4. Absence Seizures: (Petit Mal) This type of seizure/fits are like just staring into space for up to 10 Ė 20 seconds. People do not get injured here.  But sometimes warnings beforehand can be that they are rubbing their fingers together.

5. Narcolepsy: you may have heard of this condition and it is not strictly one of the Epilepsy conditions but sounds like it. Which makes the individual feel very sleepy in the daytime or their eyes, cheeks and face just go all droopy then they fall asleep and one of several things that they shouldnít do is to drive, work with machines and get overtired.

Symptoms:

Epilepsy can affect 1 in 50 people in the UK, (sorry I donít know the US statistics) it begin as a baby and as they grow older in some cases, the children tend to grow out of this condition.
Or in other cases it can start when people get to their teens and hormones changes. But also as itís been documented that Epilepsy can begin at about 65, it started for me in the middle one.

But it is mainly the Temporal lobe of the brain thatís affected in any sort of seizure. This is used for many different things in our lives such as spatial awareness, including some of the main 5 senses, hearing, speech, smell, memory and emotions.

The Frontal lobes are responsible and used for many things, including movements, emotion, memory and language, social and sexual behaviour. For some scientists they are also considered to hone our personalities.

The Parietal Lobes are used for bodily sensations, such as touch, pain etc.

The Occipital Lobes are mainly used for our sight and visual senses.

 
                             First Aid for Epilepsy: Only UK tips:

Make sure that the person, whoís going to have a Seizure or Fit, is not near anything that might harm them and if they are in the middle of the road then guide them to the pavement, then lie them down on the right-hand side of their body,

With their head to one side and the right arm put at the back of their body but the left arm should be at the front of the body to stabilise them.
Always make sure that the head is put onto a soft surface e.g. a rolled up coat, cushion or carpeted floor.

Do look for a medical identity bracelet or medical identity card to see if you can find out the individualís name or details. That is unless they are already known to you.

But do not restrain the person during the fit/seizure or shout at them as they will not be aware of you being unconscious. Also do not give any food or drink until theyíve completely recovered.

But do stay with the person until they have recovered from the seizure/fit as there might be problems.
~~~~~~~~~~~~~~~~~~~~~~~~~
Call for an ambulance if...
ē   You know it is the personís first seizure
ē   The seizure continues for more than five minutes
ē   One tonic-clonic seizure follows another without the person regaining consciousness between seizures
ē   The person is injured during the seizure
ē   You believe the person needs urgent medical attention if they have had fits/seizures running one into the other or for longer than that itís called ďStatus epilepticusĒ: 

http://www.epilepsy.org.uk/info/firstaid.html
http://www.thenakedscientists.com/HTML/content/interviews/interview/750/

Thanks


 

Offline Karen W.

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Rosalind.. Thanks so much for the wonderful information.. You have put a great deal into arranging this thread and explaining these seizures.. I am sure people will have questions and I think it is wonderful that you took a part of your self and are helping others to understand more about Epilepsy. Wonderful!!!
« Last Edit: 10/05/2008 17:23:23 by neilep »
 

Offline rosalind dna

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Thanks Karen and yes any questions are welcome.
 

Offline Karen W.

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Your welcome Rosalind.
« Last Edit: 10/05/2008 17:23:38 by neilep »
 

Offline Karen W.

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Hey I was just wondering.. you said you can tell in your hands and  or arms and legs when a seizure comes.. does this happen all the time or just some times.? Do you ever have them come on so fast that you have no warning? Is that true of other epilepsy patients also? do others get other symptoms before they go down or in some cases become transfixed in a seizure?
 

Offline rosalind dna

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Hey I was just wondering.. you said you can tell in your hands and  or arms and legs when a seizure comes.. does this happen all the time or just some times.? Do you ever have them come on so fast that you have no warning? Is that true of other epilepsy patients also? do others get other symptoms before they go down or in some cases become transfixed in a seizure?

Karen thanks and yes most times I can tell if a seizure is coming on also I get a bit light-headed, which is the best sign/signnal
every time.

Yup I have had some that came on very suddenly like in the street then my head was cut so I looked like, I'd been ill. But I can
now know, the day beforehand, so I don't go out.

Not now. I have the seizures in my home where it's hopefully not
blocked by furniture and stuff.

As to your question about just how others react to Epilepsy is of course different for everyone, but some people get an "Aura" beforehand, which is like lights in front of their eyes but this
doesn't happen to me.
http://www.epilepsy.org.uk/info/aura.html

Also others get funny tastes or smells before a seizure. Even musical sounds but when I have a seizure.
I keep my radio on so that I have a background noise. Yes I guess that they'd become transfixed as when a seizure occurs the patient is unconscious.

I have had a few with my eyes wide open and unable to move my head so I get transfixed on the ceiling.
-----------
Great questions and I hope that I have answered them well.


 

Offline neilep

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Fascinating topic Rosalind. Thank you for posting it. It's very noteworthy of you to share this with us.


Unless I missed it....can you tell me how long a seizure lasts with you ?...and is there any routine to the frequency when they happen ?..ie...do they happen at regular intervals ?....

...and what about time of day ?

Can you have them when asleep ?...do you ever wake up having a seizure ?

 

Offline rosalind dna

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Fascinating topic Rosalind. Thank you for posting it. It's very noteworthy of you to share this with us.


Unless I missed it....can you tell me how long a seizure lasts with you ?...and is there any routine to the frequency when they happen ?..ie...do they happen at regular intervals ?....

...and what about time of day ?

Can you have them when asleep ?...do you ever wake up having a seizure ?


Neil thanks for your interesting and great questions. I will do my best as ever to answer them.

There is no specific time for a seizure to last but mainly between
30 seconds, 2 or 10 minutes is the longest. I can't time them.
NO routine to the frequency that they happen. It's like a cold we don't know when they are going to appear. I can't say that for a seizure.

The last ones I had where in late March and I had not had a single major seizure since November 2006 and the longest time that I have ever gone without a single seizure was for 3 years and 11 months.

They mainly happen either in  the early hours or late at night, that when I am relaxed from the normal daily stuff.
I wouldn't know if I have them when I am sleeping, my cats can't tell me. No I have never woken up having one yet. I hope I don't.

 

Offline Karen W.

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Great questions Neily..

Rosalind thanks for the wonderful answers .. it seems that there are a lot of unknowns involved in epilepsy.. I have often wondered.. one of me daughters old friends from early grade school had epilepsy her seizures seem to go from a stare or gaze into a full blown granmal seizures as she got older.Is this a common occurrence, that they can increase in intensity or change like that?
 

Offline rosalind dna

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Great questions Neily..

Rosalind thanks for the wonderful answers .. it seems that there are a lot of unknowns involved in epilepsy.. I have often wondered.. one of me daughters old friends from early grade school had epilepsy her seizures seem to go from a stare or gaze into a full blown granmal seizures as she got older.Is this a common occurrence, that they can increase in intensity or change like that?

I should have added but forgot sorry that both of my cats can sense
at the day before the seizures are going to happen and they won't stay in the same room as me.I usually ignore that.

Karen yes it is quite a common occurence and I don't know for sure quite why.
 

Offline Karen W.

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Thanks Rosalind.. That is interesting...
 

Offline Karen W.

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Maybe the cats pick up a scent they dislike  as your body chemistry must change at times of seizure.. maybe somethings humans can't smell but cats etc can.That is odd .. animals pick up lots of scents..

My dog senses my illness he would not leave my side this morning and is still at my feet.. he wants to lick at my chest and bad arm.. also this morning was determined to coil uo with his pa on my arm and one paw ober my chest and his nose burried into my neck snuggled underneath if I made a sound or move he pressed down harder and licked my thoat and arn as if to want me to lie still.. like a mom when her child is ill. So weird ..

Your cats sound as if they do sense something too.
 

Offline rosalind dna

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Karen you sound like you that you have a very devoted and caring dog also a sensitive one as well. Part of the reason for my cats not coming near me before or during a seizure is because right from the start that's what I taught them to do., Never to come near me if I am lying on the floor or I might kick out at them then hurt the cats.

yes but my cats are a Mother and her son, so it might be a genetic instinct plus a part of their/our history. But it's clever of your of dog and my cats.
 

Offline Karen W.

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animals sense a lot of things..that we as humans cannot! Its good that you usually can have an inkling that something is not right..
 

Offline neilep

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Thank You Rosalind for your answers.

I take it you are completely unaware whilst having a seizure..?...you lose consciousness ?
 

Offline rosalind dna

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animals sense a lot of things..that we as humans cannot! Its good that you usually can have an inkling that something is not right..

Karen, yes it is a good thing that I do have an idea beforehand and my appetite seems to reduce also I drink more than an average day.
Well I have had this condition for nearly 40 years., Which it'll be that
next year. Oh crikey. That soon.

Quote
Posted by: neilep 
Thank You Rosalind for your answers.

I take it you are completely unaware whilst having a seizure..?...you lose consciousness ?

Neil, yes I am completely unaware when the seizure(s) happen.

Also yes I can feel am unconscious when the seizures occur but it's odd as
I can feel when I am about to lose consciousness, sadly because of experience
might be a possibility or probably.

Great questions all so far !!!
 

 

Offline Karen W.

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Do having these grand mal seizures eventually leave or do permanent damage in the brain at the places where the seizure take place? Do they affect specific sides or places in the brain or can they just hit sporadically in any part? What kind of long term damage can be done by these seizures over a persons lifetime! besides the obvious bumps on head etc.. I mean internal effects..?
 

Offline rosalind dna

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Karen the brain is not really affected after a grand mal seizure
only that if the patient/individual has a lot then their memory could be affected. Only as I am coming out of the seizure then
I find it a bit difficult for a few minutes at the very least to remember stuff.


With the Grand Mal or Generalised Seizures it's the Frontal lobe that's affected. Also the Temporal lobe as this picture shows although our brains are grey.
But with Partial seizures it is only the Temporal Lobe/area that's
affected.

BTW I didn't research into neurones because I don't understand them.

Their brains can be shaken about a bit and possibly damaging the brain stem.

All and any type of questions will and are welcome as you've seen I hope that I do my best at answering
« Last Edit: 11/05/2008 20:55:39 by rosalind dna »
 

Offline neilep

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Rosalind,

Thank ewe for your answers.

Do they know what triggers the condition ?..Is it something which most people get when they are in their teens ?...........can you then grow out of it ?...or will you be stuck with it forever now ?.....ahhhh !!.....DOH !!...you kind of answered these already in your above introductory post under symptoms !

Are you affected by flashing lights ?...can anything else trigger a seizure ?
 

Offline Karen W.

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Karen the brain is not really affected after a grand mal seizure
only that if the patient/individual has a lot then their memory could be affected. Only as I am coming out of the seizure then
I find it a bit difficult for a few minutes at the very least to remember stuff.


With the Grand Mal or Generalised Seizures it's the Frontal lobe that's affected. Also the Temporal lobe as this picture shows although our brains are grey.
But with Partial seizures it is only the Temporal Lobe/area that's
affected.

BTW I didn't research into neurones because I don't understand them.

Their brains can be shaken about a bit and possibly damaging the brain stem.

All and any type of questions will and are welcome as you've seen I hope that I do my best at answering
Well I am glad or that. I was worried that over time tat it may start to damage bits of the tissue surrounding the areas of the original seizure site. you know what I mean.
thank you Rosalind... yo have really done well in explaining how these siezures and the whole disease effects you in your everyday life and also physically. thank you so much its been very enlightening I must say...
 

Offline rosalind dna

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Rosalind,

Thank ewe for your answers.

Do they know what triggers the condition ?..Is it something which most people get when they are in their teens ?...........can you then grow out of it ?...or will you be stuck with it forever now ?.....ahhhh !!.....DOH !!...you kind of answered these already in your above introductory post under symptoms !

Are you affected by flashing lights ?...can anything else trigger a seizure ?

Neil one of the things that can trigger a seizure is stress, overtiredness, which I may have said earlier but not explained properly sorry or not taking the prescribed medication or drinking alcohol. Yes, some people when they enter their teenage years as their hormones change. Also others can and do grow out of this condition. I started it in my teens and still have it now.

Yes flashing lights can and do triggers seizures with me, so for an example as we all might have seen the flashing camera lights on the TV's news. so I simply turn my head away from the TV.
But for me it's when I am over-stressed, depressed and have not slept properly for a bit. Otherwise I am fine.

Good questions again and the more, the better to help you all nice TNS people.
 

Offline rosalind dna

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Karen the brain is not really affected after a grand mal seizure
only that if the patient/individual has a lot then their memory could be affected. Only as I am coming out of the seizure then
I find it a bit difficult for a few minutes at the very least to remember stuff.


With the Grand Mal or Generalised Seizures it's the Frontal lobe that's affected. Also the Temporal lobe as this picture shows although our brains are grey.
But with Partial seizures it is only the Temporal Lobe/area that's
affected.

BTW I didn't research into neurones because I don't understand them.

Their brains can be shaken about a bit and possibly damaging the brain stem.

All and any type of questions will and are welcome as you've seen I hope that I do my best at answering
Well I am glad or that. I was worried that over time tat it may start to damage bits of the tissue surrounding the areas of the original seizure site. you know what I mean.
thank you Rosalind... yo have really done well in explaining how these siezures and the whole disease effects you in your everyday life and also physically. thank you so much its been very enlightening I must say...

Karen, thank you for your concern, I do appreciate it a lot. But as you can tell I  hope from my posts and research that nothing will stop me ever!!
 

Offline Andrew K Fletcher

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Rosalind, thanks for beginning this thread. You answered Neil by saying you get problems mainly in the early mornings and late evenings. It may interest you that there is a 10% increase in humidity in the evening and during the early hours there could be an increase in localised humidity due to your activity, I.E. airing washing indoors, having a shower, boiling water.

I am very interested in your observations.

You say you have lived in the same place for 19 years. Did you have the fits prior to living there and if so have they decreased or increased from your last address.

Please give details of you location, not your address or anything but a general description of the local area. For example near a coast, in a river valley, on top of a hill higher than surrounding area. The same goes for your previous address to give us an idea.

Also, do you have a problem with dampness, usually mould growing is indicative of damp.

Does / did you job involve working in a damp environment?

Did the last event happen during unusually damp weather?

I ask because a few dogs locally have also shown fits and this always happens when the weather is sticky and humidity is very high.

If anyone reading this has the same problems could you also relate to these questions and provide us with some details of your own observations relating to your environment and the onset or indeed the absence of further fits?

http://www.gpcontract.co.uk/pcoarea.php?orgcode=5QQ&targ=Epilepsy%205&year=7
All the data we need to identify a link between environmental factors, couple this with data of humidity from the met office and combine the two in a graph as I did with Cot Deaths and we may be able to pinpoint a causitive affect.
« Last Edit: 14/05/2008 12:44:19 by Andrew K Fletcher »
 

Offline rosalind dna

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Rosalind, thanks for beginning this thread. You answered Neil by saying you get problems mainly in the early mornings and late evenings. It may interest you that there is a 10% increase in humidity in the evening and during the early hours there could be an increase in localised humidity due to your activity, I.E. airing washing indoors, having a shower, boiling water.
Quote
I am aware that the humidity rises in the evening but with
most of my windows open then it's cool and nice. Airing the clothes
outdoors is no problem unless it rains. Boiling kettles no problems.
I am very interested in your observations.

You say you have lived in the same place for 19 years. Did you have the fits prior to living there and if so have they decreased or increased from your last address.
Quote
I have lived in the same place for 19 years and I've had
this condition since my late teens and now I am a middle-aged womman.  All in all, I reckon on a rough count than I've gone
around 6 - 7 years without a seizures and the longest time was 3years. ended by a meddling (retired) doctor.

Please give details of you location, not your address or anything but a general description of the local area. For example near a coast, in a river valley, on top of a hill higher than surrounding area. The same goes for your previous address to give us an idea.

Quote
I live in a leafy city area on a hill backed off by a
big garden and behind that a SSSI walk that was a railway cutting.
As to my previous home it was a small lot of flats and cramped so
I did have more seizures then. The medication wasn't that good then.
Also, do you have a problem with dampness, usually mould growing is indicative of damp.
Quote
I did have dampness once here through condensation but
it is not temperature or weather that causes seizures after all
I have grown up with the British weather.

Does / did you job involve working in a damp environment?

Did the last event happen during unusually damp weather?
Quote
The last lot of 15 seizures happened the week before
Easter Sunday and it was a nice Sunny day as it is now.No to the
wet weather.

I ask because a few dogs locally have also shown fits and this always happens when the weather is sticky and humidity is very high.
Quote
My very first cat had feline type seizures and because I have them then I took him to the vet. He died as an old cat at
the age of 14.

If anyone reading this has the same problems could you also relate to these questions and provide us with some details of your own observations relating to your environment and the onset or indeed the absence of further fits?

http://www.gpcontract.co.uk/pcoarea.php?orgcode=5QQ&targ=Epilepsy%205&year=7
All the data we need to identify a link between environmental factors, couple this with data of humidity from the met office and combine the two in a graph as I did with Cot Deaths and we may be able to pinpoint a causitive affect.
 

Offline rosalind dna

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What do you know or have experience(s) of epilepsy as I'd be
interesting to read them.

BTW It took me guts to post this thread but I am so glad that I did.
 

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