Epilepsy with some of Rosalindís experiences and some details:

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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.
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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.
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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
Rosalind Franklin was my first cousin and one my life's main regrets is that I never met this brilliant and beautiful lady.
She discovered the Single DNA Helix in 1953, then it was taken by Wilkins without her knowledge or agreeement.

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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 »

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Offline rosalind dna

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Thanks Karen and yes any questions are welcome.
Rosalind Franklin was my first cousin and one my life's main regrets is that I never met this brilliant and beautiful lady.
She discovered the Single DNA Helix in 1953, then it was taken by Wilkins without her knowledge or agreeement.

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Offline Karen W.

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

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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?

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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.


Rosalind Franklin was my first cousin and one my life's main regrets is that I never met this brilliant and beautiful lady.
She discovered the Single DNA Helix in 1953, then it was taken by Wilkins without her knowledge or agreeement.

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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 ?

Men are the same as women, just inside out !

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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.

Rosalind Franklin was my first cousin and one my life's main regrets is that I never met this brilliant and beautiful lady.
She discovered the Single DNA Helix in 1953, then it was taken by Wilkins without her knowledge or agreeement.

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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?

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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.
Rosalind Franklin was my first cousin and one my life's main regrets is that I never met this brilliant and beautiful lady.
She discovered the Single DNA Helix in 1953, then it was taken by Wilkins without her knowledge or agreeement.

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Offline Karen W.

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Thanks Rosalind.. That is interesting...

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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.

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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.
Rosalind Franklin was my first cousin and one my life's main regrets is that I never met this brilliant and beautiful lady.
She discovered the Single DNA Helix in 1953, then it was taken by Wilkins without her knowledge or agreeement.

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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..

"Life is not measured by the number of Breaths we take, but by the moments that take our breath away."

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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 ?
Men are the same as women, just inside out !

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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 !!!
 

Rosalind Franklin was my first cousin and one my life's main regrets is that I never met this brilliant and beautiful lady.
She discovered the Single DNA Helix in 1953, then it was taken by Wilkins without her knowledge or agreeement.

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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..?

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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 »
Rosalind Franklin was my first cousin and one my life's main regrets is that I never met this brilliant and beautiful lady.
She discovered the Single DNA Helix in 1953, then it was taken by Wilkins without her knowledge or agreeement.

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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 ?
Men are the same as women, just inside out !

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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...

"Life is not measured by the number of Breaths we take, but by the moments that take our breath away."

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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.
Rosalind Franklin was my first cousin and one my life's main regrets is that I never met this brilliant and beautiful lady.
She discovered the Single DNA Helix in 1953, then it was taken by Wilkins without her knowledge or agreeement.

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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!!
Rosalind Franklin was my first cousin and one my life's main regrets is that I never met this brilliant and beautiful lady.
She discovered the Single DNA Helix in 1953, then it was taken by Wilkins without her knowledge or agreeement.

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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 »
Science is continually evolving. Nothing is set in stone. Question everything and everyone. Always consider vested interests as a reason for miss-direction. But most of all explore and find answers that you are comfortable with

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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.
Rosalind Franklin was my first cousin and one my life's main regrets is that I never met this brilliant and beautiful lady.
She discovered the Single DNA Helix in 1953, then it was taken by Wilkins without her knowledge or agreeement.

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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.
Rosalind Franklin was my first cousin and one my life's main regrets is that I never met this brilliant and beautiful lady.
She discovered the Single DNA Helix in 1953, then it was taken by Wilkins without her knowledge or agreeement.

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Offline neilep

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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.


We're so glad you did...

WELL DONE !!
Men are the same as women, just inside out !

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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.


We're so glad you did...

WELL DONE !!

Thanks Neil and so am I now.  [;)] [8D]
Rosalind Franklin was my first cousin and one my life's main regrets is that I never met this brilliant and beautiful lady.
She discovered the Single DNA Helix in 1953, then it was taken by Wilkins without her knowledge or agreeement.

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Offline Andrew K Fletcher

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The Founders of Child Neurology be Stephen Ashwal.
important; variations in barometric pressure and climate, particularly low pressure and hot summers, were thought to increase the incidence of seizures, Heat, Baumes said, stimulates the nerves, and high humidity, combined with heat, sends many "exhalations" into the air that may adversely affect the body. Thus, people who live in warm climates have a general disposition to convulsions, especially of the stomach and intestines,"

Sometimes it is worth taking a look at the old masters to see what they have written, as there analysis was seldom masked by people using drugs to dampen down the symptoms rather than trying to find out what is causing the problem in the first place.



ALL RIGHT, FACTS,....I HAD ABOUT 4 OR 5 S. TODAY. I FIGURED OUT THAT THE HUMIDITY WAS INDEED TRIGGERING THEM.

I TALKED TO SALLY. I WAS EXPLAINING ABOUT POST ICTALS. I WAS JUST STARING AGAIN........BUT I FELT LIKE I COULDN'T MOVE. WONDER IF I WILL REMEMBER TALKING TO SALLY. I THINK THE HUMIDITY IS CAUSING MORE S. MY HEART IS NO, I AM SPINNING. EVERYWHERE, OR SO IT SEEMS.

WHERE I LIVE, BUT DIDN'T VENTURE ACROSS ANY STREETS. THE HUMIDITY IS CAUSING THE PAIN AND STIFFNESS, WHICH IN TURN SEEMS TO CAUSE THE WEAKNESS.......I THINK.
MY HEAD AND JAW ARE TOLERATING THE HUMIDITY BETTER THAN THEY HAVE IN MORE THAN ABOUT 20+ YEARS. I HAVEN'T BEEN ABLE TO OPEN A WINDOW, MUCH LESS STAND OUTSIDE AND FEEL THE RAIN SINCE MY SON WAS IN K. IT FEELS WONDERFUL. I DO LOVE RAIN. I AM WORKING ON CONQUERING THE FEAR I HAVE CARRIED THESE LONG YEARS, WHEN THE HUMIDITY CAUSED SO MUCH PAIN, I WOULD END UP IN BED WITH A MIGRAINE, NOT ABLE TO OPEN MY MOUTH OR TOLERATE THE PAIN IN MY NECK.
WEDNESDAY JULY 18.
NO SLEEP AGAIN LAST NIGHT. AN INDICATION TO ME THAT I AM GETTING SICK AGAIN. WOKE UP IN P.M., EYES ALL SWOLLEN....LUMPS BIGGER, LUMPS ON BREATS TENDER.
NO S. ACTIVITY TODAY.DID HAVE TROUBLE TPYING AND TRANSPOSING LETTERS IN WORDS. IT SEEMS TO COME AND GO. WENT OUT FOR A SHORT WALK JUST NOW. MONSOON SEASON. HUMIDITY DOES CAUSE ME TO FEEL LIKE I AM SPINNING.
Found this mention of humidity being a trigger
http://www.epilepsy.com/node/970324


Then I found exactly what I was looking for. http://www.epilepsy.com/node/965976

By jacky99 on Wed, 06/20/2007 - 9:46pm
Re: Re: Temperature Triggers?
I moved from the sunny warm desert of Las Vegas, NV where I slept on a heated waterbed with the AC on (for others living there) to the humid, frozen hell hole of Erie, PA due to family reasons. My seizures went from almost non-existent to regular enough to set your watch by, and getting worse. The cold winters and humid summers bother me more than 100 plus degree summers there ever did. And, I worked mostly outside in the sunshine. If I had the money, I'd leave now! And my reason would be, for my health. This part of the country never bothered me until I lived in the desert for more than 10 years. The warm, dry air of the desert really made a difference!
A reply: Re: Temperature Triggers?
hey i have had some seizures due to heat. I live in a town that usually doesn't get to hot. But we are going through the drought. I have not had one for almost two years..........and I still drive by myself. I hate the fact I have them because I have to watch for the signs. heat is diffently a trigger along with high intake of chocolate, caffine, no meds, lack of sleep, severe headache, and probably alot more but those are mine.
I hope I helped you out some how!!
By autumn18 on Fri, 06/15/2007 - 7:52am
Re: Re: Temperature Triggers?
i had one just two days ago that was triggered from walkin from our hot kitchen into our cold bedroom (we just got a bigger better AC) and back into the kitchen. when i got into the kitchen i felt like i was a wax sculpture melting and the linoleum floor was melting to my feet through my sandals. i swear unless you have seizures none of these sensations make sense.
Science is continually evolving. Nothing is set in stone. Question everything and everyone. Always consider vested interests as a reason for miss-direction. But most of all explore and find answers that you are comfortable with

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Offline rosalind dna

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Andrew good post and it's not exactly relevant to me as a middle-aged woman also when I got the first seizure, I was 15 or 16 that is something that I have
"conveniently" forgotten as we do.

But yes any TNS members, who may have kids with epilepsy, that it is important
although I wrote this thread from my point of view and age as an adult.

I am learning from you as well and every time that I have
seizure(s). {sadly}

I have to do my own cooking so whether or not it's humid that
is one of the many things that has never bothered me YET !!
In fact I can see, the relevance to a condition that is to do
with the way that the nerves in our brain.

This is my way of explaining it. "When the seizure happens it's like a lightbulb
which fuses before its filaments go and we have to change it
or a brainstorm.
But the medication is meant to control this. it does mostly.

« Last Edit: 17/05/2008 15:15:59 by rosalind dna »
Rosalind Franklin was my first cousin and one my life's main regrets is that I never met this brilliant and beautiful lady.
She discovered the Single DNA Helix in 1953, then it was taken by Wilkins without her knowledge or agreeement.

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Offline Andrew K Fletcher

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The writer mentions he moved due to family reasons, not that his (s) happened because of them.

This post is very important because it states that a dry desert with air conditioning prevented seizures went from almost non-existent to regular occurrences.

This follows the same path as many other neurological conditions that I have been researching and testing my theory about how the nervous system is being influenced by gravity. In doing so, I have been able to predict some positive outcomes and have been proved right time and time again. In fact, I can safely say that low humidity is definitely the way to go, so having a dehumidifier running in the home when you are there would greatly assist you and lesson the numbers of (S) More to the point it would be relatively easy to test this and has additional bonuses by reducing the cost of your heating, because dryer air warms easier than High humid air.

My theory is that evaporation from the body changes the density of fluids and gravity must act upon those fluids and in doing so generates circulation by drawing solutes down the tubular vessels of the body.
Inclined Bed Therapy is designed to make use of these density changes due to respiration and evaporation, which is obviously enhanced by a dryer local atmosphere.

Leprosy for another example is predominantly found in very high humid areas such as steamy river valley areas in the tropics. Slowing down the circulation enables infectious organisms to invade the tissue and I suspect this is the main reason that limbs are lost and nerve endings fail in this condition.

Multiple sclerosis, again humidity is a very important factor.

Cot deaths and Sudden adult deaths again closely follow the same humidity related pattern.

Healthy people in humid conditions become listless and can experience a complete shutdown in these conditions.

A person living in an area close to sea level, or in a river valley area generally has poorer health. Leslie Munroe

Publication history
Issue online:
10 Aug 2005
Received 3 January 1996; revised version accepted 11 June 1996. (An earlier version was presented at the Geological Society, London, on 18 July 1995.)
 
European Journal of Soil Science
Volume 48 Issue 1 Page 1-17, March 1997
To cite this article: L.J.A. MUNRO, E.C. PENNING-ROWSELL, H.R. BARNES, M.H. FORDHAM, D. JARRETT (1997) Infant mortality and soil type: a case study in south-central England (with discussion)
European Journal of Soil Science 48 (1) , 1Ė17 doi:10.1111/j.1365-2389.1997.tb00179.x
Infant mortality and soil type: a case study in south-central England (with discussion)
∑   1Flood Hazard Research Centre, Middlesex University, Enfield, Middlesex EN3 4SF, UK aDepartment of Geography, Anglia Polytechnic University, East Road, Cambridge CB1 1PT, UK
Summary
 
We have analysed the differences in infant mortality for 1981 to 1990 in areas of contrasting soil types in south-central England. The soils overlie rocks of varied lithology and hydrology, ranging from porous and permeable Chalk and limestones, to the generally wet and impermeable Oxford and Lower Jurassic Clays. The study area comprises 504 administrative wards, for each of which the soil has been classified as being predominantlyĎWetí, Ď Intermediateí or ĎDryí, depending on the degree of seasonal or periodic waterlogging. The soil classes used are those mapped by the Soil Survey of England and Wales and relate closely to the underlying geology. We find proportionately more infant deaths on theĎWetí soils, and a gradation towards lower infant mortality rates on the drier soils. Overall, infant mortality on theĎWetí soils is 31∑9 percent greater than on theĎDryí soils, for reasons that remain unexplained. This relation between infant mortality and soil moisture remains after the effect of social class has been removed.
Science is continually evolving. Nothing is set in stone. Question everything and everyone. Always consider vested interests as a reason for miss-direction. But most of all explore and find answers that you are comfortable with

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Offline rosalind dna

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Andrew what does the desert humidity have to do with me, I live
in a rather damp London as it is today on a hill and at the
bottom of another one with trees around me.
The only damp I get is when I am in the bath or rain.

Also when I cool my home then I open the windows as it's easy and free !!!
I am writing from my very own experiences not someone else's
about whom I have never heard of humidity affecting epilepsy
and I would have done so by now. Sometimes I wonder where these other ideas come from. Out of "experts" heads, but I would think
of myself as more of an expert in epilepsy as the consultants
don't have this condition.
Rosalind Franklin was my first cousin and one my life's main regrets is that I never met this brilliant and beautiful lady.
She discovered the Single DNA Helix in 1953, then it was taken by Wilkins without her knowledge or agreeement.

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Offline Andrew K Fletcher

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The desert's lack of humidity has a lot to do with human physiology. For example in the UK the lowest rainfall is in East Anglia, in fact East Anglia has near desertification in areas to give you some idea of the situation it has about half the annual rainfall of Jerusalem. People live longer in East Anglia than anywhere else in the United Kingdom.

The following was found in the Met Office Statistics:
Mean temperatures generally close to average across the northern half of the UK, but slightly above average across the southern half of the UK. Rainfall generally above average and well above average across parts of East Anglia and SE England. Provisionally, the wettest March over England since 1981,  ďrainfall in March 2008Ē

You mentioned that it was sunny. Sun following heavy rainfall means very high humidity will inevitably be present.

I can see you are resisting a different look at the possible triggers for epilepsy. I included some pointers from ďpeople you donít knowĒ who have kindly provided some insight into their own triggers relating to humidity on other forums, which follow a predictable pattern.

I can see that you have your own deep-rooted views about this condition and believe that you must be an expert having dealt with this condition for many years. So if you feel I have wasted your time, I am sorry and will not post any more on this thread.
Science is continually evolving. Nothing is set in stone. Question everything and everyone. Always consider vested interests as a reason for miss-direction. But most of all explore and find answers that you are comfortable with

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Offline rosalind dna

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Andrew
Do please carry on posting/contributing on this thread. It is not for me to say otherwise.

Also there is one thing that I forgot to mention which is that just before and
during the seizures, it's odd but my temperature goes up and down even though
in reality, I am warm and comfortable. I just cope with it and don't worry there. Not sure why but it's happened for so many years that now I just sadly
take it as "normal" so put up with it.

I think that your posts/ideas about humidity are interesting which has given me
something to think about some of the reasons for the triggers for my seizures
but it's mainly as I've already said, Stress, being over-tired, depression which can occur more in epileptics because of the medication, seizures etc.
No I don't agree there but the epilepsy.org site mentions it.

I know it's been the wettest March for a while and spring this year too.
If it is warm then I turn the blinds facing the windows or the room would
be so hot that I would burn. It's south-facing.

My views are as you've said again "deep-rooted" in experiences nothing else
and I am always willing to find out more about epilepsyy as I did research
my initial post before I even copied/pasted it over from my Word file.
As ever I am careful with research.

Rosalind
Rosalind Franklin was my first cousin and one my life's main regrets is that I never met this brilliant and beautiful lady.
She discovered the Single DNA Helix in 1953, then it was taken by Wilkins without her knowledge or agreeement.

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Offline Andrew K Fletcher

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Hi Rosalind, thanks for putting up with my questions.

The last bit of information is very interesting. Fluctuations in temperature, particularly perspiration on the skin as a cold sweat are indicative of an increase in humidity. Obviously an illness can cause this to happen too, but then one could argue has the humidity caused the illness in the first place?

Ever seen a mattress coloured brown with the sweat stains from a person who perspires excessively? Mattresses become stained because when we lay in a flat bed our body temperature fluctuates. Our own mattress was thrown out because it became discoloured and so was the one before it.

Since we tilted our bed over 13 years ago our mattress has remained free from sweat stains, we no longer overheat laying in bed or feel cold in the winter, our body temperature appears to be regulated better. This is also the case with people who have spinal cord injuries and other neurological conditions.

 The only difference now is that our bed is now elevated 15cms at the head end. Even when we have been burned by the sun and have lingering memories of being painfully burned before and having a terrible time laying in bed, we no longer appear to suffer overheating from the burns as we did before. We still burn, and yes it hurts, but no where near as long or as intense as it has done before.

Our suntan lasts throughout the winter, whereas when sleeping flat it would last a month or two at the most and skin would peel off.

Maybe our circulation has improved in the dermis and epidermis? ( I am currently involved in researching psoriasis) and more to the point we have already observed some pretty remarkable improvements in psoriasis using Inclined Bed Therapy (IBT). Maybe avoiding a flat bed optimises our metabolism and main circulation too? 
Maybe the nervous system responds to the same gravitational stimuli?

According to inevitable density flow in the body due to evaporation, High humidity and poor posture maybe all that is needed to shut down the nervous system. This certainly is the case with people who have multiple sclerosis, and several studies have identified pockets of people with MS living in high humidity environments like sea level coastlines and river valley areas.

But first we need to test lowering the humidity in the home of a person who has regular seizures to see if they can be reduced by regulating the amount of water in the air. My guess is that we will be successful. The second thing is to see if avoiding a flat bed is also advantageous and I suspect combining the two together will prove to be fascinating.

Andrew
Science is continually evolving. Nothing is set in stone. Question everything and everyone. Always consider vested interests as a reason for miss-direction. But most of all explore and find answers that you are comfortable with

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Offline rosalind dna

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Hi Andrew
Thanks for your questions and there are definitely making me think but if I have my bed tilted then I would fall out of bed. Also if I know that I am
going to have a seizures as I have mentioned earlier in this thread, I
usually go into my front room and lie in the middle of the carpeted and concreted floor with no obstructions in it to stop myself getting injured.

Yes I have seen a mattress with brown-coloured stains, not mine although.
But I thought if you had a bad back that you should sleep on a flat, hard mattress not a tilted one. If I tried to sleep on a tilted bed then I wouldn't sleep at all. It was I am used too. Bit late to change that one now.

My home is on a slight tilt being on a steep hill anyway. I am so used to my home and love it too. The only things that I can see around is roads, concrete no water other than the rain or in home usages.
I have had less amount of seizures since I have been living here apart from the 15 that I had 2 months+ ago. They were the most seizures ever. I do know for absolute sure that stress and being overtired were the main reasons for them.

My late Stepmum had MS, but she would not research it or accept NHS treatment
and used Homeopathic treatments instead. I had wondered why she felt like this as it wasn't genetic.

Ask away. It is fascinating to read everyone's ideas./
Rosalind

Rosalind Franklin was my first cousin and one my life's main regrets is that I never met this brilliant and beautiful lady.
She discovered the Single DNA Helix in 1953, then it was taken by Wilkins without her knowledge or agreeement.

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Offline Andrew K Fletcher

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Your late Stepmum live near a river in a valley by any chance?
Science is continually evolving. Nothing is set in stone. Question everything and everyone. Always consider vested interests as a reason for miss-direction. But most of all explore and find answers that you are comfortable with

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Offline rosalind dna

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Your late Stepmum live near a river in a valley by any chance?


Yes I think that she may have been brought by a river in her childhood but my late Stepmum didn't start to get the symptoms of MS until her mid-twenties when she was living in S. London by
a railway. When she married my Dad then the nearest water they
had was the usual domestic things, bath, washing up etc.

Andrew why do you ask? 
Rosalind Franklin was my first cousin and one my life's main regrets is that I never met this brilliant and beautiful lady.
She discovered the Single DNA Helix in 1953, then it was taken by Wilkins without her knowledge or agreeement.

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Offline Andrew K Fletcher

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South London. While there is litle vegetation to transpire moisture into the air, there is a river and London therefore is fairly low level in relation to the surrounding areas, forming a basin where humidity will become trapped. The good news is that all of the concrete and tarmac will heat up quickly and like the desert sands will generate thermals that quickly evacuate the area of moisture, however the upward flow will inevitably drag more moisture in to replace the air that has risen in the thermals. Any moisture from atmospheric sources will inevitably remain in the basin much longer than the surrounding areas of London.

Now here is the man made additional vehicle generated humidity, polluted with toxic emissions.

When there is little up welling in the atmosphere, London is in trouble from not only the massive amount of exhaust pollution, but from the hot water saturated exhaust emissions that equate to around 1 gallon of water vapour to 2 gallons of burned fuel.
Add to this the massive emissions from the exhausts of two very large and very busy airports, and we can all see the water trails behind jet aircrafts in the sky, so there is no room for disputing these figures.

But just in case anyone doubts them: http://www.military.com/NewsContent/0,13319,78169,00.html

 The Humvees in the demonstration program are, from the outside, indistinguishable from other military vehicles, except for a small water spigot behind the right rear wheel. Beneath the metal panels of the truck bed is a system of pipes and filters, which can collect water whenever the engine is running, at a rate of one gallon of water for every two gallons of fuel burned. 

But cars, vans, motorcycles, jets, boats, trains and trucks are not the only vehicles that emit water vapour.

Multiply these figures by the numbers of vehicles, including those by air and water to the equation and it is not long before one realises that living in London at ground level might not be the wisest move anyone could make. Living on the street in any major city could dramatically affect ones health.
 

Travel Patterns in London
∑   In 2006, on an average weekday 1.11 million people entered central London during the morning peak (7am to 10am). This was 4.6% higher than the previous year.
∑   The proportion of people entering central London by car fell by 7%, representing only 7% of total journeys.
Yes even humans and animals contribute to the humidity factor, along with industrial processes, domestic activities, irrigation of local plants and trees, sewer outlets, sewage farms. All add water to the air and the more people we condense into a basin area the greater the problems with humidity.
 

Science is continually evolving. Nothing is set in stone. Question everything and everyone. Always consider vested interests as a reason for miss-direction. But most of all explore and find answers that you are comfortable with

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Offline rosalind dna

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Andrew

That is interesting but when my Stepmum married my Father, she came to live in North London near a park, where I grew up, but she died of cancer not MS. (long story)

As just up the road from me there's a resovoir (sp) and another one that is about 2+ miles away from me. But I have the windows open and my home is away from the busy road so quiet and leafy with a SSSI at the back of my garden. So it is cool in the summertime with trees, right round
the edge of the garden.

As I have said I can't drive. Although I walk where I can that is a healthy way of getting around.

Also when/if it snows in London then my area gets the snow first as it's higher than other bits of it.

I do know about toxic emissions having lived here all of my life and I love the city. Also remember the former London Mayor's Congestion Charge which was "supposedly" meant to make the traffic jams go. It has made it worse. My home is not covered by the CC.
http://en.wikipedia.org/wiki/London_congestion_charge


But what about the humid days that we get when it's so cloudy and the sun can't burn through to clear it all??
Rosalind Franklin was my first cousin and one my life's main regrets is that I never met this brilliant and beautiful lady.
She discovered the Single DNA Helix in 1953, then it was taken by Wilkins without her knowledge or agreeement.

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Offline Andrew K Fletcher

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A good investment would be to obtain a humidity meter, there are a number on the market for as little as £1.99 although these are not that accurate. Then keep an eye on the meter and when it goes beyond say 65% use a dehumidifier and close the windows and vents until the humidity drops again. This was you are not running a dehumidifier when there is no need. Alternatively there are dehumidifiers with a humidistat mechanism that switches the dehumidifier on when the humidity rises above a predetermined level.

Better still to confirm this one way or the other wait until your next S and make a note of the humidity. You might be in for a surprise.

I knew there would be water close to your home :)
Science is continually evolving. Nothing is set in stone. Question everything and everyone. Always consider vested interests as a reason for miss-direction. But most of all explore and find answers that you are comfortable with

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Offline rosalind dna

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I cannot see the point in investing in a dehumidifier when I can easily open my windows and in fact it's healthier to have fresh air circulating through our homes than the electronic version of it. BTW I have my windows open NOW.

BTW it is safer when I have a seizure than to have a machine going that I might fall on then get hurt. last one was very very recently.

Also I have 2 cats and they would sniff at anything new so get hurt whereas they've grown up with windows and vets bills are pricey.


Also I happen to know my epilepsy seizures better than anyone as it is me they happen too. So I reckon that I know the reasons for them and as I have said before over-doing things, too much stress, being over-tired even not eating properly. But humidity is just part of life and I have grown up in London so I know all about the concrete, pavements, buildings and accept it as part of my life from day    1.



What is wrong with open windows and fresh air???

Rosalind Franklin was my first cousin and one my life's main regrets is that I never met this brilliant and beautiful lady.
She discovered the Single DNA Helix in 1953, then it was taken by Wilkins without her knowledge or agreeement.

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Offline neilep

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Thank you for this ongoing thread Rosalind.....

Have you ever had a seizure when showering...?...or even worse....... when in the bath ?....could you drown ?
Men are the same as women, just inside out !

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Offline rosalind dna

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Thank you for this ongoing thread Rosalind.....

Have you ever had a seizure when showering...?...or even worse....... when in the bath ?....could you drown ?


Neil Thanks for your good questions and I do not have a shower but
once I nearly had one in the bath only I was quick enough to pull the plug. grab the towel etc.

Now that was scarey and when I think that something is up then I do not risk having a bath.

Yes I could drown as I would be unconscious and in fact it is possible
to drown in as little water as just 2 inches deep.
Rosalind Franklin was my first cousin and one my life's main regrets is that I never met this brilliant and beautiful lady.
She discovered the Single DNA Helix in 1953, then it was taken by Wilkins without her knowledge or agreeement.

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Offline rosalind dna

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Just thought that you might be interested to see how epilepsy was
regarded as in historical data. In fact it goes back as far as the New Testament.
Not well and up to the middle of the 18th - 19th Centuries it had been thought of as a condition sent from the gods as a punishment to the person. No way.

Also they were given Brimstone and soap to wash it all out of the person. 

http://www.who.int/mediacentre/factsheets/fs168/en/
http://www.epilepsy.com/epilepsy/history
Rosalind Franklin was my first cousin and one my life's main regrets is that I never met this brilliant and beautiful lady.
She discovered the Single DNA Helix in 1953, then it was taken by Wilkins without her knowledge or agreeement.

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Offline Andrew K Fletcher

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http://www.blackwell-synergy.com/doi/pdf/10.1111/j.0013-9580.2005.49504.x
Found this Neil.

Rosalind; Open windows and fresh relatively low humidity air is fine. Open windows and a relatively damp home is fine.

Open windows during high atmospheric humidity and you might find yoursel experiencing another S.

Having a hot shower is a great way to increase the humidity in the homw.

A dehumidifier used on days when humidity in the home is high will only rectify the problem if the windos are closed while it is operating. Having the windows open and running a dehumidifier will result in you trying to dehumidify the whole world!

Thank you for this ongoing thread Rosalind.....

Have you ever had a seizure when showering...?...or even worse....... when in the bath ?....could you drown ?
Science is continually evolving. Nothing is set in stone. Question everything and everyone. Always consider vested interests as a reason for miss-direction. But most of all explore and find answers that you are comfortable with

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Offline rosalind dna

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Andrew

I prefer to have the windows open as I would have to have several de-humidifiers in my home and as I have repeatedly said that it's FREE to open
my windows. the air is on damp when it rains !! LOL
I do not own or have a shower as I had replied to Neil's good questions !!

It is also nice to see the butterflies and fresh air come in through the windows.

I have had another seizure recently and had the window OPEN also did the same thing that I have mentioned in other posts, Stayed in my sitting room while
it happened no injuries and I have encountered this many times.

How can I make note of anything let alone a seizure when I am completely
unconscious.

BTW I heard this type of thing in the 1970s from my then doctors and no
doctor would go on and on about Humifidying or damp in the home now !!!

Rosalind Franklin was my first cousin and one my life's main regrets is that I never met this brilliant and beautiful lady.
She discovered the Single DNA Helix in 1953, then it was taken by Wilkins without her knowledge or agreeement.

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Offline Andrew K Fletcher

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Andrew Bangs head against wall.
Science is continually evolving. Nothing is set in stone. Question everything and everyone. Always consider vested interests as a reason for miss-direction. But most of all explore and find answers that you are comfortable with

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Offline rosalind dna

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When I have had a seizure or seizures then I won't watch or use
either my PC or my TV because sometimes the slight flickers from these screens could trigger new seizures, but I am fine with the radio and enjoy that more.


Any more questions are welcome thanks
Rosalind Franklin was my first cousin and one my life's main regrets is that I never met this brilliant and beautiful lady.
She discovered the Single DNA Helix in 1953, then it was taken by Wilkins without her knowledge or agreeement.

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Offline Carolyn

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Andrew Bangs head against wall.

Andrew, hasn't anyone ever told you that causes headaches?
Carolyn

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Offline Carolyn

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Rosalind, thank you for the very informative and interesting topic.  All the questions I had have already been asked by Karen & Neil, but if I have any more I'll be sure to ask away!  Thanks again for all the info!
Carolyn