hello

[Guest guest]

Thank you Sharon. Your kind words go far. I don't think I read the posts yesterday. I was so upset I pretty much just hit the delete button. I really appreciate what you said about crying not being a pity party cause lately I have been doing it an awful lot. Not only is there the pain, but there is the fear too. I have 2 year old twins and I am so scared that I am not going to be the kind of Mother they need. Unable to play with them, or take them places because its too painful for me to walk. My pain specialist finally got my back feeling better with the right dose of meds, and was getting out more with my babies, and now overnight it seems I Rheumatoid arthritis. I will see my rheumatologist the 20th of this month and I hope he can help. I see my pain specialist tomorrow and I hope he can give me something that will work on joint pain. Its unbelievable the opiates that help my back so well, does not touch the joint pain. Thank you for your kindness, and lending me your ear. Hugs -- Re: hello Hi we all have bad days as you can see here if you read back in the post and NO ONE accuses anyone here of having a pity party OR not hurting as much as someone else. For one how the heck would they know what your pain is?? they are not in your body, idiots!!! Sorry for whoever it was hassling you but I can assure you that does not and will not ever happen here. I've seen that before in groups too, thats why I made this one because I thought some of the others were a tad too mmmmmmmmm well you know what I mean Anyway as for her banning you that was uncalled for I think but she CAN NOT make it so any post you make in any of your groups has to be approved. For this one I would have to do that, cause its my group, she has no authority here. If it happened in other groups then I'd guess they all know each other and its your choice but I doubt I'd stay, but thats me. Btw did you read the post I just did yesterday about chronic pain and depression ?? and the few before that ?? if not and you have time read them, you will see you are not alone. As for this group you are safe here she can't touch you here, its my group. But I hope and pray we do not have a member like her in our group. All the people here are kind and undertanding and we all have gone thru bad days when we just want to curl up and cry, thats not a pitty party its called "hurting like hell with no way to stop it" and it does get to all of us from time to time. I hope this helps you feel better,if you need me, email me if you want. I hope your day goes better from here on out. Best wishes Sharon Group owner > earlier today I sent a message to the groups I am in about being in so much > pain and being depressed. One of the groups responded back rather nastily > (it was the owner) basically stating I was having a pity party, and there > were other people out there with more severe pain than mine, and they were > not crying about it. This upset me terribly! I did reply to her, but I do > not think I said or did anything nasty to her. Anyway it ended with me > leaving the group voluntarily. Then she sent me a letter banning me. Now on > all my groups it says I need approval from the owner for me to post to the > group. I am very very upset about this. I have kept every corrispondance > between the two of us just to verify I did nothing wrong. > > > > I just want things back to normal. I don't know if all the group owners has > to fix this for me to post, or what. Could you please help me out? > > I love being in all the groups and the people are wonderful. > > > > Please help > > Climer

[Guest guest]

Thank you Sharon. Your kind words go far. I don't think I read the posts yesterday. I was so upset I pretty much just hit the delete button. I really appreciate what you said about crying not being a pity party cause lately I have been doing it an awful lot. Not only is there the pain, but there is the fear too. I have 2 year old twins and I am so scared that I am not going to be the kind of Mother they need. Unable to play with them, or take them places because its too painful for me to walk. My pain specialist finally got my back feeling better with the right dose of meds, and was getting out more with my babies, and now overnight it seems I Rheumatoid arthritis. I will see my rheumatologist the 20th of this month and I hope he can help. I see my pain specialist tomorrow and I hope he can give me something that will work on joint pain. Its unbelievable the opiates that help my back so well, does not touch the joint pain. Thank you for your kindness, and lending me your ear. Hugs -- Re: hello Hi we all have bad days as you can see here if you read back in the post and NO ONE accuses anyone here of having a pity party OR not hurting as much as someone else. For one how the heck would they know what your pain is?? they are not in your body, idiots!!! Sorry for whoever it was hassling you but I can assure you that does not and will not ever happen here. I've seen that before in groups too, thats why I made this one because I thought some of the others were a tad too mmmmmmmmm well you know what I mean Anyway as for her banning you that was uncalled for I think but she CAN NOT make it so any post you make in any of your groups has to be approved. For this one I would have to do that, cause its my group, she has no authority here. If it happened in other groups then I'd guess they all know each other and its your choice but I doubt I'd stay, but thats me. Btw did you read the post I just did yesterday about chronic pain and depression ?? and the few before that ?? if not and you have time read them, you will see you are not alone. As for this group you are safe here she can't touch you here, its my group. But I hope and pray we do not have a member like her in our group. All the people here are kind and undertanding and we all have gone thru bad days when we just want to curl up and cry, thats not a pitty party its called "hurting like hell with no way to stop it" and it does get to all of us from time to time. I hope this helps you feel better,if you need me, email me if you want. I hope your day goes better from here on out. Best wishes Sharon Group owner > earlier today I sent a message to the groups I am in about being in so much > pain and being depressed. One of the groups responded back rather nastily > (it was the owner) basically stating I was having a pity party, and there > were other people out there with more severe pain than mine, and they were > not crying about it. This upset me terribly! I did reply to her, but I do > not think I said or did anything nasty to her. Anyway it ended with me > leaving the group voluntarily. Then she sent me a letter banning me. Now on > all my groups it says I need approval from the owner for me to post to the > group. I am very very upset about this. I have kept every corrispondance > between the two of us just to verify I did nothing wrong. > > > > I just want things back to normal. I don't know if all the group owners has > to fix this for me to post, or what. Could you please help me out? > > I love being in all the groups and the people are wonderful. > > > > Please help > > Climer

[Guest guest]

Yes. This group is a wonderful one to be in although I find that

more of the members are in more pain than me but I can sympathize

with them because I went through the pain. Welcome!

> > earlier today I sent a message to the groups I am in about being

> in so much

> > pain and being depressed. One of the groups responded back

rather

> nastily

> > (it was the owner) basically stating I was having a pity party,

> and there

> > were other people out there with more severe pain than mine, and

> they were

> > not crying about it. This upset me terribly! I did reply to her,

> but I do

> > not think I said or did anything nasty to her. Anyway it ended

> with me

> > leaving the group voluntarily. Then she sent me a letter banning

> me. Now on

> > all my groups it says I need approval from the owner for me to

> post to the

> > group. I am very very upset about this. I have kept every

> corrispondance

> > between the two of us just to verify I did nothing wrong.

> >

> >

> >

> > I just want things back to normal. I don't know if all the group

> owners has

> > to fix this for me to post, or what. Could you please help me

out?

> >

> > I love being in all the groups and the people are wonderful.

> >

> >

> >

> > Please help

> >

> > Climer

[Guest guest]

Yes. This group is a wonderful one to be in although I find that

more of the members are in more pain than me but I can sympathize

with them because I went through the pain. Welcome!

> > earlier today I sent a message to the groups I am in about being

> in so much

> > pain and being depressed. One of the groups responded back

rather

> nastily

> > (it was the owner) basically stating I was having a pity party,

> and there

> > were other people out there with more severe pain than mine, and

> they were

> > not crying about it. This upset me terribly! I did reply to her,

> but I do

> > not think I said or did anything nasty to her. Anyway it ended

> with me

> > leaving the group voluntarily. Then she sent me a letter banning

> me. Now on

> > all my groups it says I need approval from the owner for me to

> post to the

> > group. I am very very upset about this. I have kept every

> corrispondance

> > between the two of us just to verify I did nothing wrong.

> >

> >

> >

> > I just want things back to normal. I don't know if all the group

> owners has

> > to fix this for me to post, or what. Could you please help me

out?

> >

> > I love being in all the groups and the people are wonderful.

> >

> >

> >

> > Please help

> >

> > Climer

[Guest guest]

Your most welcome I know too well how joint pain and

back pain together can drive you insane. I am waiting to hear what

your new dr says but I know there are several things they can do now

to help with rheumatoid arthritis that they didn't have until

recently. If I remember right the stuff they tried on my daughter

for her chron's at first was originally for just that, then they

found out it worked well for chron's patients. Unfortunately it

didn't work well for her she broke out in shingles all over from it

the very first dose. But I do have a g/f that has RA and she has

done very well trying several meds, since she started them the

change in how she feels is a big difference. Have you tried celebrex

or msn?? I take both of those and although they are not a fix I can

tell when I don't take them, they do help some. As for your young

ones I know that must be tough but kids do understand more than we

realize, even young ones. I am sure that even if mom can't go to the

park or on a walk with them, they are just as happy to dig in the

backyard, play boardgames or do crafs with you. Remember its not

what you do with them but the fact that you spend time with them is

what counts. All kids want is attention and yes sometimes it will be

harder cause they might have a harder time understanding why you

can't do this today but as they get older the will understand it

more. For now just remember its YOUR time they want not anything

else. Thats what is truly important. Best of luck at the dr I hope

he has some new ideas that will help you. And if you need a

shoulder to lean on or cry on thats why we are all here to support

each other. Best wishes Sharon Group Owner

> Thank you Sharon. Your kind words go far. I don't think I read the

posts

> yesterday. I was so upset I pretty much just hit the delete button.

>

> I really appreciate what you said about crying not being a pity

party cause

> lately I have been doing it an awful lot. Not only is there the

pain, but

> there is the fear too. I have 2 year old twins and I am so scared

that I am

> not going to be the kind of Mother they need. Unable to play with

them, or

> take them places because its too painful for me to walk. My pain

specialist

> finally got my back feeling better with the right dose of meds,

and was

> getting out more with my babies, and now overnight it seems I

Rheumatoid

> arthritis. I will see my rheumatologist the 20th of this month and

I hope he

> can help. I see my pain specialist tomorrow and I hope he can give

me

> something that will work on joint pain. Its unbelievable the

opiates that

> help my back so well, does not touch the joint pain.

>

> Thank you for your kindness, and lending me your ear.

>

> Hugs

>

>

>

>

>

>

[Guest guest]

Your most welcome I know too well how joint pain and

back pain together can drive you insane. I am waiting to hear what

your new dr says but I know there are several things they can do now

to help with rheumatoid arthritis that they didn't have until

recently. If I remember right the stuff they tried on my daughter

for her chron's at first was originally for just that, then they

found out it worked well for chron's patients. Unfortunately it

didn't work well for her she broke out in shingles all over from it

the very first dose. But I do have a g/f that has RA and she has

done very well trying several meds, since she started them the

change in how she feels is a big difference. Have you tried celebrex

or msn?? I take both of those and although they are not a fix I can

tell when I don't take them, they do help some. As for your young

ones I know that must be tough but kids do understand more than we

realize, even young ones. I am sure that even if mom can't go to the

park or on a walk with them, they are just as happy to dig in the

backyard, play boardgames or do crafs with you. Remember its not

what you do with them but the fact that you spend time with them is

what counts. All kids want is attention and yes sometimes it will be

harder cause they might have a harder time understanding why you

can't do this today but as they get older the will understand it

more. For now just remember its YOUR time they want not anything

else. Thats what is truly important. Best of luck at the dr I hope

he has some new ideas that will help you. And if you need a

shoulder to lean on or cry on thats why we are all here to support

each other. Best wishes Sharon Group Owner

> Thank you Sharon. Your kind words go far. I don't think I read the

posts

> yesterday. I was so upset I pretty much just hit the delete button.

>

> I really appreciate what you said about crying not being a pity

party cause

> lately I have been doing it an awful lot. Not only is there the

pain, but

> there is the fear too. I have 2 year old twins and I am so scared

that I am

> not going to be the kind of Mother they need. Unable to play with

them, or

> take them places because its too painful for me to walk. My pain

specialist

> finally got my back feeling better with the right dose of meds,

and was

> getting out more with my babies, and now overnight it seems I

Rheumatoid

> arthritis. I will see my rheumatologist the 20th of this month and

I hope he

> can help. I see my pain specialist tomorrow and I hope he can give

me

> something that will work on joint pain. Its unbelievable the

opiates that

> help my back so well, does not touch the joint pain.

>

> Thank you for your kindness, and lending me your ear.

>

> Hugs

>

>

>

>

>

>

[Guest guest]

Welcome to the group. Sorry to hear what happened. Everyone here understands pain and depression. Only people who go through this understand. I deal with it everyday with my husband. There were times he wanted to commit suicide because of pain and no one understanding. This is a wonderful group that are caring and understanding.

Good Luck

Ingrid Climer <climers4@...> wrote:

earlier today I sent a message to the groups I am in about being in so much pain and being depressed. One of the groups responded back rather nastily (it was the owner) basically stating I was having a pity party, and there were other people out there with more severe pain than mine, and they were not crying about it. This upset me terribly! I did reply to her, but I do not think I said or did anything nasty to her. Anyway it ended with me leaving the group voluntarily. Then she sent me a letter banning me. Now on all my groups it says I need approval from the owner for me to post to the group. I am very very upset about this. I have kept every corrispondance between the two of us just to verify I did nothing wrong.

I just want things back to normal. I don't know if all the group owners has to fix this for me to post, or what. Could you please help me out?

I love being in all the groups and the people are wonderful.

Please help

Climer

Click here to donate to the Hurricane Katrina relief effort.

[Guest guest]

Welcome to the group. Sorry to hear what happened. Everyone here understands pain and depression. Only people who go through this understand. I deal with it everyday with my husband. There were times he wanted to commit suicide because of pain and no one understanding. This is a wonderful group that are caring and understanding.

Good Luck

Ingrid Climer <climers4@...> wrote:

earlier today I sent a message to the groups I am in about being in so much pain and being depressed. One of the groups responded back rather nastily (it was the owner) basically stating I was having a pity party, and there were other people out there with more severe pain than mine, and they were not crying about it. This upset me terribly! I did reply to her, but I do not think I said or did anything nasty to her. Anyway it ended with me leaving the group voluntarily. Then she sent me a letter banning me. Now on all my groups it says I need approval from the owner for me to post to the group. I am very very upset about this. I have kept every corrispondance between the two of us just to verify I did nothing wrong.

I just want things back to normal. I don't know if all the group owners has to fix this for me to post, or what. Could you please help me out?

I love being in all the groups and the people are wonderful.

Please help

Climer

Click here to donate to the Hurricane Katrina relief effort.

[Guest guest]

Thank you Ingrid. This is a wonderful group with even more wonderful people. Hugs -- Re: hello Welcome to the group. Sorry to hear what happened. Everyone here understands pain and depression. Only people who go through this understand. I deal with it everyday with my husband. There were times he wanted to commit suicide because of pain and no one understanding. This is a wonderful group that are caring and understanding. Good Luck Ingrid Climer <climers4@...> wrote: earlier today I sent a message to the groups I am in about being in so much pain and being depressed. One of the groups responded back rather nastily (it was the owner) basically stating I was having a pity party, and there were other people out there with more severe pain than mine, and they were not crying about it. This upset me terribly! I did reply to her, but I do not think I said or did anything nasty to her. Anyway it ended with me leaving the group voluntarily. Then she sent me a letter banning me. Now on all my groups it says I need approval from the owner for me to post to the group. I am very very upset about this. I have kept every corrispondance between the two of us just to verify I did nothing wrong. I just want things back to normal. I don't know if all the group owners has to fix this for me to post, or what. Could you please help me out? I love being in all the groups and the people are wonderful. Please help Climer Click here to donate to the Hurricane Katrina relief effort.

[Guest guest]

Thank you Ingrid. This is a wonderful group with even more wonderful people. Hugs -- Re: hello Welcome to the group. Sorry to hear what happened. Everyone here understands pain and depression. Only people who go through this understand. I deal with it everyday with my husband. There were times he wanted to commit suicide because of pain and no one understanding. This is a wonderful group that are caring and understanding. Good Luck Ingrid Climer <climers4@...> wrote: earlier today I sent a message to the groups I am in about being in so much pain and being depressed. One of the groups responded back rather nastily (it was the owner) basically stating I was having a pity party, and there were other people out there with more severe pain than mine, and they were not crying about it. This upset me terribly! I did reply to her, but I do not think I said or did anything nasty to her. Anyway it ended with me leaving the group voluntarily. Then she sent me a letter banning me. Now on all my groups it says I need approval from the owner for me to post to the group. I am very very upset about this. I have kept every corrispondance between the two of us just to verify I did nothing wrong. I just want things back to normal. I don't know if all the group owners has to fix this for me to post, or what. Could you please help me out? I love being in all the groups and the people are wonderful. Please help Climer Click here to donate to the Hurricane Katrina relief effort.

[Guest guest]

In a message dated 9/30/2005 10:04:03 A.M. Eastern Standard Time,

lindybuzz@... writes:

I gave up on AEDs more than five years ago and have found remarkable control

with vitamins and supplements.

Please share with us, which vitamins/supplements are you taking?

~susan

[Guest guest]

Glad that you decided to join! I have left temporal lobe epilepsy too - the

seizures started as complex partials when I was 11 - turned into grand mals

when I was 21 - I am now 53. I gave up on AEDs more than five years ago and

have found remarkable control with vitamins and supplements. You'll find

alot of people here who have found alternatives which gave them much greater

control than the conventional drug therapy.

>From: " i_luv_san_miguel " <i_luv_san_miguel@...>

>Reply-

>

>Subject: [ ] hello

>Date: Wed, 14 Sep 2005 04:17:29 -0000

>

>Hi everyone-

>I'm ashley, 33 and have had left temle lobe epilepsy since I was 9.

>

>I am wishing to learn and get to know from others there experiences

>that they have/are dealing with. Any input or advice will be greatly

>appreciated

>

>Thank you for letting me join that group.

>

>Take care

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

In the AM, I take a multivitamin, 1000 mg of flaxseed oil, 500 mg of

taurine, 500 mg of magnesium, 50 mg of 5-HTP and 30 mg of CoQ10. In the PM,

I take 100 mg of B complex, 1000 mg of flaxseed oil, 500 mg of taurine, 500

mg of magnesium and 50 mg of 5-HTP. I just added the 5-HTP in March to get

my doctor off of my back about taking a chemical antidepressant and, based

on what I've read, I believe that it has to be a help in seizure control in

my case. I know that stress and being overly tired are my greatest

triggers. My doctor (during her lecture about why I needed an

antidepressant) told me that stress/anxiety/depression prevent the body from

manufacturing enough serotonin and that, without enough serotonin, the brain

can't function properly. I felt a remarkable difference with 24 hours of

starting 5-HTP. Whether it really did calm me down and lighten my mood, I

don't know. It may just have been that since I started to take it, I sleep

like I haven't slept for years and dream like you wouldn't believe (which,

serotonin is taken through the brain barrier during REM sleep makes sense to

me). I've been really happy with how seizure free I've been. Hoping to pass

the two year mark this time!

>From: saki1129@...

>Reply-

>

>Subject: Re: [ ] hello

>Date: Fri, 30 Sep 2005 10:15:35 EDT

>

>

>

>In a message dated 9/30/2005 10:04:03 A.M. Eastern Standard Time,

>lindybuzz@... writes:

>

>I gave up on AEDs more than five years ago and have found remarkable

>control

>with vitamins and supplements.

>

>

>Please share with us, which vitamins/supplements are you taking?

>

>

>~susan

>

>

>

[Guest guest]

To the group,

Any insight as to whether vitamin/natural type therapies are more

successful when there is not a seizure focal point verses when there is?

~

Re: [ ] hello

>Date: Fri, 30 Sep 2005 10:15:35 EDT

>

>

>

>In a message dated 9/30/2005 10:04:03 A.M. Eastern Standard

Time,

>lindybuzz@... writes:

>

>I gave up on AEDs more than five years ago and have found

remarkable

>control

>with vitamins and supplements.

>

>

>Please share with us, which vitamins/supplements are you

taking?

>

>

>~susan

>

>

>

[Guest guest]

I have never gotten back an abnormal EEG or MRI so the only idea I have ever

been given of a focal point was based on the voices I hear as a part of my

seizures. All that I do know is that none of the drugs I took did me any

good at all but vitamins and supplments have done me a world of good.

>From: " Hamilton, " <kelly.hamilton@...>

>Reply-

>< >

>Subject: RE: [ ] hello

>Date: Fri, 30 Sep 2005 11:56:09 -0400

>

>To the group,

>

>Any insight as to whether vitamin/natural type therapies are more

>successful when there is not a seizure focal point verses when there is?

>

>

>~

>

> Re: [ ] hello

> >Date: Fri, 30 Sep 2005 10:15:35 EDT

> >

> >

> >

> >In a message dated 9/30/2005 10:04:03 A.M. Eastern Standard

>Time,

> >lindybuzz@... writes:

> >

> >I gave up on AEDs more than five years ago and have found

>remarkable

> >control

> >with vitamins and supplements.

> >

> >

> >Please share with us, which vitamins/supplements are you

>taking?

> >

> >

> >~susan

> >

> >

> >

[Guest guest]

I've had the same problem. EEG's and MRI's all came back normal, and

the anti-convulsants only caused me to have seizures on a daily basis.

So the vitamins and supplements really work for you??

Nai

On Sep 30, 2005, at 11:32 AM, CL Muscat wrote:

> I have never gotten back an abnormal EEG or MRI so the only idea I

> have ever

> been given of a focal point was based on the voices I hear as a part

> of my

> seizures. All that I do know is that none of the drugs I took did me

> any

> good at all but vitamins and supplments have done me a world of good.

>

[Guest guest]

Unbelievably well. It's been 20 months since my last grand mal (more than 5

years since my last partial) and I went for 23 months between seizures

before that. It's an absolute miracle for me.

>From: Naomi de Bruyn <nai@...>

>Reply-

>

>Subject: Re: [ ] hello

>Date: Fri, 30 Sep 2005 12:45:39 -0700

>

>I've had the same problem. EEG's and MRI's all came back normal, and

>the anti-convulsants only caused me to have seizures on a daily basis.

>So the vitamins and supplements really work for you??

>

>Nai

>

>

>On Sep 30, 2005, at 11:32 AM, CL Muscat wrote:

>

> > I have never gotten back an abnormal EEG or MRI so the only idea I

> > have ever

> > been given of a focal point was based on the voices I hear as a part

> > of my

> > seizures. All that I do know is that none of the drugs I took did me

> > any

> > good at all but vitamins and supplments have done me a world of good.

> >

>

>

>

>

>

[Guest guest]

Hi ,

Welcome to the group. I had uncontrolled seizures (right temporal

lobe) for many years. Brain surgery didn't work and I finally brought

them under control on my own and have been seizure free since 1998.

How are you dealing with your seizures? Do you work with your diet or

supplements? What works and what doesn't work for you? You'll find

lots of suppport and information on this board.

Zoe

> Hi everyone-

> I'm ashley, 33 and have had left temle lobe epilepsy since I was 9.

>

> I am wishing to learn and get to know from others there experiences

> that they have/are dealing with. Any input or advice will be

greatly

> appreciated

>

> Thank you for letting me join that group.

>

> Take care

[Guest guest]

I heard voices with my seizures too! I used to think I heard

someone playing the flute [great music too!]. Your story just points

out that seizures often are not due to any problem with the brain at

all, but may be related to any number of causes, metabolism, stress,

and many others. Did you have any idea what might have set them

off?

> I have never gotten back an abnormal EEG or MRI so the only idea I

have ever

> been given of a focal point was based on the voices I hear as a

part of my

> seizures. All that I do know is that none of the drugs I took did

me any

> good at all but vitamins and supplments have done me a world of

good.

>

>

> >From: " Hamilton, " <kelly.hamilton@f...>

> >Reply-

> >< >

> >Subject: RE: [ ] hello

> >Date: Fri, 30 Sep 2005 11:56:09 -0400

> >

> >To the group,

> >

> >Any insight as to whether vitamin/natural type therapies are more

> >successful when there is not a seizure focal point verses when

there is?

> >

> >

> >~

> >

> > Re: [ ] hello

> > >Date: Fri, 30 Sep 2005 10:15:35 EDT

> > >

> > >

> > >

> > >In a message dated 9/30/2005 10:04:03 A.M. Eastern Standard

> >Time,

> > >lindybuzz@h... writes:

> > >

> > >I gave up on AEDs more than five years ago and have found

> >remarkable

> > >control

> > >with vitamins and supplements.

> > >

> > >

> > >Please share with us, which vitamins/supplements are you

> >taking?

> > >

> > >

> > >~susan

> > >

> > >

> > >

[Guest guest]

Zoe you said you brought them under control by yourself. could you share what

you did. medication is sure not working for me.

vicki

Hi ,

Welcome to the group. I had uncontrolled seizures (right temporal

lobe) for many years. Brain surgery didn't work and I finally brought

them under control on my own and have been seizure free since 1998.

How are you dealing with your seizures? Do you work with your diet or

supplements? What works and what doesn't work for you? You'll find

lots of suppport and information on this board.

Zoe

> Hi everyone-

> I'm ashley, 33 and have had left temle lobe epilepsy since I was 9.

>

> I am wishing to learn and get to know from others there experiences

> that they have/are dealing with. Any input or advice will be

greatly

> appreciated

>

> Thank you for letting me join that group.

>

> Take care

[Guest guest]

For a long time, I thought that the seizures were caused by a childhood

accident (fell 30' out of a tree when I was 10 and broke my back). My

mother kept swearing that there was no family history, even though, when I

was diagnosed, my neuro told her that there was no sign of a brain injury.

That was when I was 21. About 5 years ago, my mother had her first grand

mal in almost 60 years and, while postictal, told me about how she used to

" purposely pass out from stress " when she was a child. She also told me

about her mother, walking around, unable to talk intelligibly and shaking

her hands. It is the only time she has told me all of this and, once she

recovered from her seizure, she went back to talking about my brain damage.

I assume that I inherited this but there is no way to verify any of it.

After all, when my mother was a child and her mother was still alive,

epilepsy was something that wasn't often diagnosed out of fear of the

stigma.

>From: " zoe88025 " <Zll51@...>

>Reply-

>

>Subject: [ ] Re: hello

>Date: Sat, 01 Oct 2005 02:49:49 -0000

>

> I heard voices with my seizures too! I used to think I heard

>someone playing the flute [great music too!]. Your story just points

>out that seizures often are not due to any problem with the brain at

>all, but may be related to any number of causes, metabolism, stress,

>and many others. Did you have any idea what might have set them

>off?

>

>

>

>

> > I have never gotten back an abnormal EEG or MRI so the only idea I

>have ever

> > been given of a focal point was based on the voices I hear as a

>part of my

> > seizures. All that I do know is that none of the drugs I took did

>me any

> > good at all but vitamins and supplments have done me a world of

>good.

> >

> >

> > >From: " Hamilton, " <kelly.hamilton@f...>

> > >Reply-

> > >< >

> > >Subject: RE: [ ] hello

> > >Date: Fri, 30 Sep 2005 11:56:09 -0400

> > >

> > >To the group,

> > >

> > >Any insight as to whether vitamin/natural type therapies are more

> > >successful when there is not a seizure focal point verses when

>there is?

> > >

> > >

> > >~

> > >

> > > Re: [ ] hello

> > > >Date: Fri, 30 Sep 2005 10:15:35 EDT

> > > >

> > > >

> > > >

> > > >In a message dated 9/30/2005 10:04:03 A.M. Eastern Standard

> > >Time,

> > > >lindybuzz@h... writes:

> > > >

> > > >I gave up on AEDs more than five years ago and have found

> > >remarkable

> > > >control

> > > >with vitamins and supplements.

> > > >

> > > >

> > > >Please share with us, which vitamins/supplements are you

> > >taking?

> > > >

> > > >

> > > >~susan

> > > >

> > > >

> > > >

[Guest guest]

> Glad that you decided to join! I have left temporal lobe epilepsy

too - the

> seizures started as complex partials when I was 11 - turned into

grand mals

> when I was 21 - I am now 53. I gave up on AEDs more than five

years ago and

> have found remarkable control with vitamins and supplements.

You'll find

> alot of people here who have found alternatives which gave them

much greater

> control than the conventional drug therapy.

>

>

> >From: " i_luv_san_miguel " <i_luv_san_miguel@y...>

> >Reply-

> >

> >Subject: [ ] hello

> >Date: Wed, 14 Sep 2005 04:17:29 -0000

> >

> >Hi everyone-

> >I'm ashley, 33 and have had left temle lobe epilepsy since I was

9.

> >

> >I am wishing to learn and get to know from others there

experiences

> >that they have/are dealing with. Any input or advice will be

greatly

> >appreciated

> >

> >Thank you for letting me join that group.

> >

> >Take care

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Zoe please let me know as well what you do to control yours a

[Guest guest]

Hi would like to know what vitamins you take roberta

[Guest guest]

Hi ! Welcome to the group, the best one on the net! My name is Donna and

I live in Louisville, KY so we are practically neighbors. I have had JRA

since age 4 and have had several surgeries myself. I am married and I have 2

sons,

3 step-daughters and a 5 month old grandson. I am chairperson for the

American Juvenile Arthritis Organization of Kentuckiana ( including S. Indiana

). We

would love to have you and your family join us at future events. If you would

like more info please drop me a line.

Hugs and smiles to all!

Donna