Nervous Nellie aka cuppatea

cuppatea

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Truly, I wish I had found this site months, even years ago. I'm sure it would have been a huge help. I'm still as much in the dark about seizures as I was when I woke up in an ambulance in 1991 and was told I'd had one. I thought I was being told I'd had a heart attack, so when I was put in the tube for an MRI I tried to tell the staff they were putting me in the wrong way!

The trail of MRIs ever since has never revealed why I have them, what sort they are, or when they decide to happen. They have their own rules, it seems.

I had a few years of "remission" but then they recurred after my son's death in '04 so I feel, strongly, that stress plays a large part.

Additionally, I have never broken a bone following a fall but, from the age of four to my adult years, always managed to land on my head and believe that is significant, also.

One major factor which seems to be overlooked in treating epilepsy is a comparison between prescriptions. The first I was given, Dilantin, gave me the tizzies, and Keppra kept me in a fog, doing nothing at all to help the convulsing.

The last week of 2008 I was referred to another neurologist who described a few characteristics and I asked her to put me on Topomax. Within a week-and-a half of her recommended "takeover" method from Keppra it was as if a light went over in my head. I knew it was working! I am now taking only Topomax and I am feeling something like my old energy (allowing for some missing years!)

The subject of epilepsy has had me guessing ever since it entered my life without permission. To my knowledge there is no family history, although history recounts many well known figures who left good legacies.

Biblical references speak of demon possession. I am sure it must have looked like it, although I have never actually seen mine, or anyone else's (my husband is my witness but I have asked him not to describe them!) Just a few close friends have been around to see me in action. Thank God they are in the nursing field.

So why am I now writing at length to other epileptics? For a number of reasons --first to say, "Thank you" for this opportunity, even though it has been difficult to write this far ( I made quite a few starts). Secondly, I was dealt a double whammy when a dear, vivacious, loving friend, an RN who cared deeply for America's vets., died of her first seizure a week ago.There was the underlying cause of an aneurysm, (to be confirmed by an autopsy) but I still want to scream out loud. It seems so ironic compared with my countless episodes. I don't believe God is spiteful, there is some meaning to both death and life, but when I heard the news I thought there had been a mistake...I should have gone

I've been assured there is no cure for epilepsy, only relief. I have never really believed that. When I get over my grief I will return to my hope.
God Bless!
 
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Hi :hello: Welcome to CWE! Please accept my sympathy for the loss of such a dear friend. It's hard to lose someone in such a sudden and unexpected way.

This is a wonderful place full of information, support, and encouragement. Make yourself at home and have a look around. You may just be surprised to find the answer to some of your questions here.

I currently believe that epilepsy can be cured by restoring health. We're using a combination of nutrition and natural therapies to promote healing in my son's life. So far it's working and he's not on any medication. Check out alternative and natural therapies for treating epilepsy. They may just help give you your hope back :)
 

cuppatea

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Thank you for sharing your son's story and your words of sympathy. Yes, it's hard to lose someone and this one hit harder than most.
I enjoyed hearing you and son speaking - -he looks and sounds like an encouragement in himself, so thanks to both of you!
I believe in natural healings, actually I use them with my prescription and recently began NUCCA Chiropractic adjustments, as well as having some Infrared Sauna Sessions. They all help and so did your reply. Thanks again.
 

skillefer

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Hi cuppatea! Welcome to CWE. :) As you can see, a friendly group. Feel free to ask questions, chime in, or just vent in the padded room here. After all, seizures are stressful. Also, check out the library here at the site. It's got some excellent info. As for cause, many of us dont know exactly what caused us to start seizing...the most common causes are:
1. genetics (and don't be surprised if your family either don't know, or wont' tell....especially if they grew up being taught it was something to be ashamed of....and because seizures don't always make people fall down. Some people have seizures where it looks like they're staring off into space...)
2. fevers as a child (yes, high fevers as a child can cause it in later life...)
3. food allergies
4. head injuries
5. forceps delivery

The scary thing is that none of these causes has to be immediate. With many of them, they occur during childhood, and the seizures don't show up till we're adults.

So the best thing we can do is:
1. Make sure we get 7 hrs of sleep a night
2. Use good ways to deal with stress
3. Eat balaned meals throughout the day
4. cut out the caffeine in our diets (wean off if you drink alot of coffee..)

The three common triggers for seizures are :
lack of sleep
stress
and too much stimulus like caffeine

Gotta go...but I hope this helped.
 
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It's good to know that you are able to benefit through natural therapies. I'm glad you found my son to be an encouragement. He's always been that way. Even as a toddler he was so intuitive, he knew just what to say when someone was feeling down.
 

cuppatea

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In my own way I can cope with having the episodes but my burning question has always been how to explain one is an epileptic. Does one have to do so, in the way we might say, "Excuse me, I have a cold", or, I'm allergic to seafood"?
I think it puts people on the spot, not really knowing how to react.That's why I've always been relieved to have RNs as friends outside my family. They have seen it all.
It's good to see more public interest in personal stories, etc.,it will be a big help.
Thanks for writing!
 

Cint

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Hi and welcome Cuppatea,

I've suffered from epilepsy for 30 years now. Been through the ringer with treatment for relief. I don't like using the word "epileptic" when telling others about my condition. To me, it sounds so demeaning and like something out of the dark ages. I tell people that I suffer from epilepsy or a seizure disorder and go on to explain to them what to do should they witness a seizure, since I suffer from CPs and TCs. I also have Type 1 Diabetes, so I am not a "diabetic". I'm a person first, so I don't like labels being attached to me along with my conditions. After all, it is difficult enough to deal with all of this alone, without the labels. When my son was growing up, he had a very bad case of asthma and allergies, therefore I didn't call him "asthmatic".
If it puts others on the spot, then it is our opportunity to educate them. Others do need to know! Who knows, it could happen to them someday. None of us are invincible!

Have a good day!

Cindy
 

cuppatea

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You are absolutely right, Clint, we are people first. In fact, I get impatient with some of the diagnostic labels which are dealt out like sentences of death. The other day a friend wrote that she had been diagnosed with a condition said to be terminal and that she "had about 4-6 years". I told her to show me a life which is not terminal!

But, if one is prone to disrupting meetings by having a seizure - I think that is another matter. I stopped attending 2 local associations, blaming my vertigo, because I thought the members could deal with that, and I was right. But, had I given them the list of "grand mal, diabetes 2, tinnitus, etc. etc." they might all have passed out and/or maybe closed to doors to me forever.
I suppose I should answer my own question by saying it all depends on the situation and the people involved. Maybe one day the public information will reach everyone.

Thanks, Clint,
All the best
 

skillefer

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I hate it when people are told they only have a specific length of time to live...last I checked, we don't come with expiration dates. The way they make medical discoveries, and how treatments for conditions that were once deadly like cancer have improved, those speculated dates are just that...speculated. We arent' all the same, and when docs give those speculated dates, they're using info based on averages. Just as some people won't last as long as the doctor's assume, there are others who will manage to beat what the doctors say.
 

cuppatea

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Hi, Skillefer, Yes! you are right, and I think we still have a lot to learn about beating those pronouncements.
At first I denied having seizures and refused to say that word for a long time, asking "Did I just have a doofah?" when I came out of one. It didn't stop them but they sounded better, like something to smile about!
 

Bernard

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Hi cuppatea, welcome to the forum. :hello:

The trail of MRIs ever since has never revealed why I have them, ...
MRI's help identify physical problems in the brain (scar tissue, lesions, tumors, etc.). Many people with epilepsy have clear MRIs. There are numerous possible root causes for seizure conditions. A physical problem in the brain is just one possibility.
 

zc3

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hi cint...my 24 year old son is having sz and i dont like to label him either...i always say sz disorder instead of epilepsy....he had his first at 3, one at 4, then one at 7 and 1 at 8 and after that went 5 yrs without one but started having episodes where he would make up his own language (we called it moon talk)...now since about 15 he has been having them more steadily and medicine didnt help.....i was raised by a chiropractor and always look to natural methods of healing...we tried neurofeedback but i am wondering if that dr was really doing it right because everything i read about it gives me lots of hope...thankyou for sharing yourself....i know how hard it is...my son just wants a life and friends but that is difficult when you dont know when it will happen....still searching!
 
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The stress

Hi: I've been diagnosed now for over 25 years with having E (i'm now 32). I also have no clue to this day why/how I have seizures mostly tonic clonic- (its assumed that there was something traumatic in my delivery my mom had a c-section). I also had a GREAT period in my life where I had no physical manifestations from seizure activity. I have to say i've not given much thought to the more natural therapies with the exception of vitamins its sad to say i've become a creature of habit (poppin whats been given to me). Partially because I went for over 6 years without having a single seizure (so I know the right meds have the propensity to work). I agree with you totally in that stress plays a major part in triggering seizures. My six years seizure free ended the year my mother was killed in a car accident. I am so sorry for your loss. I will pray that God speaks peace and strength into your life. I pray that you'll find something that works for you meds, natural therapies etc (each human brain is different intricate and complex).. I started Keppra a couple of weeks ago so far my levels are great and i've had no crazy side effects and no seizures-eating like a PIG but I HOPE thats because im working from home right now. Lastly, i'd just say I find it easier NOW (wasnt always the case) to tell people I have Epilepsy and answer any questions I can because its my duty. We have to be our own advocates and bring attention to the term Epilepsy. I feel like I went so long without information and wondered about things specific to being a woman with Epilepsy (in my late teens I thought that having children would be out of the question). Tell who ever you can, try to get over a persons reaction and be a little more comfortable with the fact that you happen to have a chronic illness there are opportunites to learn and grow all around us and forums like this are very helpful in building support networks.
God Bless You.
Christine
 
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Hi there cuppatea I too am sorry to here about your friends death. She sounds like she was a good person and a loving friend I am sure she must be dancing with the angels as we speek. May god and your friend always watch over you. Thank you for the hope.
 
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Welcome cuppatea and emilywrightway! Both of you have posted very hopeful information.

Personally, I totally agree with the stress as a seizure trigger. I exercise to get rid of my stress and I have a very sensitive, smart and devoted dog...my walking companion, food sharing buddy and playmate.

I have kept a log of any seizure activity, stress levels at the time of the seizure, illnesses, skipped medications and fatigue levels. I completely cut out alcohol and drastically reduced consumption of caffeine and sugar.

Anyway, that is what worked for me. My seizures have been stopped completely for close to 10 years...a real milestone for me.
 
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