Diagnosed today... What does this mean now?

[MeredithVS]

Hi Everyone,
My name is Meredith, I'm 25 years old and a hairstylist and a medical esthetics student in Atlanta,Ga.
I was diagnosed today with epilepsy. Although I am still learning and trying to find out all the details of what this will mean for my life from now on.
My first known seizure happened in January of this year. My doctor began searching for a reason, and we thought for months it was sugar related because I am a diagnosed hypoglycemic. But the attacks kept happening, we kept searching. After MONTHS of searching I have finally recieved an answer.
Yesterday I went for my EEG. The process wasn't painful, but during the hyperventilation I had another seizure (although I didn't feel it or remember. I never do) but the process continued and luckily there were several disruptions that came up abnormal in my result. After the test was over on the way out, I began to see spots, had a sudden headache and then fell over and jerked for a few minutes. I never remember those things, but when I come back around I'm immediately scared because there are people everywhere asking me if I'm okay.
Today I met with my specialist who perscribed me Lamictal and told me that I have epilepsy. I am scheduled for an MRI next, but I don't know what this will entail. The CT scans during the early tests were painful and frightening for me, the EEG was painless and relatively easy. I'm hoping that the MRI is like the EEG, but I appreciate any information you have about what you experienced if you have done these tests.
Now I am trying to learn about the problem. I've found that anxiety and stress make me more likely to have a spell, but that I never know when or if it is coming.
My symptoms always entail loss of conciousness, and sometimes jerking.
I'm scared of the diagnosis, but I know that I will learn that it won't stop my life.
I'm here to learn about what this really means for me. How is it for you?

 

[Bernard]

Hi Meredith, welcome to the forum. :hello:

You've come to the right place. Keep reading in here and you will get a good sense of what many people are going through.

One thing I can tell you is that "epilepsy" encompasses a very broad spectrum and what is true for one person with epilepsy may not be true for another.

Still, there is a good chance that you will achieve full seizure control with Lamictal or some other drug. They take time to titrate to a therapeutic dose in the blood stream (they are not fast acting like an aspirin) though so the trial and error can be a time consuming process.

The MRI should not be painful.

 

[Nancy]

Hi Meredith ~ Epilepsy started very late in my life and I'm 63 now. I'm no expert about anything except MRIs - lol - I've been having at least one every 3 months since July, 2005, so I know all about them.
They are NOISY but totally painless. Ask for ear plugs or even music thingys ... you'll be fine if you aren't claustrophophic.

 

[POSITIVEPERSON]

Hi Meredith welcome to the board!! I have had epilepsy for the past 41 yrs. I got epilepsy when I was 11 yrs old and been onmeds up until last month . I took regular meds for epilepsy for 39 yrs and the past 2 yrs been on homeopathy .Last month I started the Gard diet and enabled me to drop the last 25 mgs of mysoline. If you have any questions about homeopathy, or the Gard diet feel free to ask. Feel free to ask about meds ,szs, side effects , tests . Whatever you are wondering about.

Nice meeting you
Riva

 

[brain]

:hello: Meredrith!

I can understand and relate about being
"scared", I feel that way too, and I totally
understand about the 'loss of consciousness'
part as well. Been through it all.

But it's a WONDERFUL THING you were caught
and treated early! The names might all sound
'scary', but it really isn't, it's just a whole new
avenue - like Star Trek - "where no man has
gone before" - only that you've never gone
through it.

That's what we're here for! Many of us here
can share our experiences with you, and even
provide links and resources if we find them.

But so sorry you had to undergo through the
horrible "E"!

 

[Birdbomb]

Welcome MeredithVS

Attitude is very important and even though you have just found out your diagnosis, you have a positive attitude.

Learning everything you can, chatting with others and maybe even seeking out a support group in your area are all excellent ways of learning to adapt to your new lifestyle.


You will adapt, we all have. My Epilepsy began suddenly at age 47. But now I am 53 and FINALLY have my seizure under control. It's all been trial and error. Sometimes it's very hard to accept this diagnosis, but there are a lot of supportive people here.

Good luck to you!

BB

 

[Zoe]

Hi Merideth,
I had uncontrolled seizures for many years and brain surgery did not work for me. I did eventually learn to control them on my own and have been seizure free since 1998. There are many, many, things that can trigger seizures and you are right on target with seeing stress as one of your triggers. It is very individual.
You mentioned that you are a hair dresser. Have you considered that you may have developed chemical sensitivities to the fumes you are exposed to at work? This happens over time and can also trigger seizures. How was the CT scan painful? If you have fears or concerns be sure you talk about it to the techs before they put you in the machine for your MRI. They usually try and make you as comfortable as possible.
A lot of your fear may be overcome by arming yourself with information. Ask questions about everything and seizures, nutrition, stress, sleep, etc. you can do a lot of searching on the internet too. Having a seizure disorder is very frustrating and frightening, but you are right, it won't stop your life.

 

[MeredithVS]

Thanks everyone! I really appreciate the help,encouragement and information I am getting here.

This morning I feel a bit better. Its like sleeping on the information I had gathered helped it sink in and become a bit less overwhelming.

I did want to answer the question about the chemicals...
I don't feel like that causes a problem. I've never had a seizure at work or even really after one. We use Paul Mitchell, which is a line of color that really doesn't have much of a chemical smell. It smells like lavender and eucalptys (sp?) which actually feels pretty calming to me.
I will certainly look further into this potential issue though. Usually my triggers come when I am overexcited... or a little later from it. I have had panic attacks for the past 5+ years, and I am on medication for it... which has been pretty good for me. I do have a problem with stress. I beat myself up emotionally for stupid things, which comes from a seriously type A personality. I used to cry if I even got a B in college....
There have been times that I have had a seizure and nothing was wrong around me. My blood sugar was low, but not low enough to typically result in a seizure in most people. I was at my parents house helping them clean house the last time I had an completely random seizure. It could have been the cleaning agents we were using, or the fact that it was really hot and I felt stuffy. I don't really know what else triggers me.
Being in school for esthetics has really helped me calm down most of my stress. Working on facials and spa techniques is a great way to reduce stress. Its quiet and soft and relaxing, even when its me giving the service
Hair is a bit different. I really love my job though and can't imagine myself not being a hairdresser.
I don't do perms because the smell makes me sick, so I can see how chemicals can trigger reactions that are pretty unpleasant.

I will look into our chemicals a little further today when I go to work. I'll see whats in them and run them through google and see what I can find
Thanks for the advice everyone!
~*meredith*~

 

[spinnymommy]

Hi Meridith and welcome

About MRIs, as it was mentioned, they are very noisy.

What they do is have you lay down on this sliding thing and if it is for the head, they put this helmet thing on you (actually slide it on, it is attached to the bed thingy) Mine had a window in it. Then the sliding bed thingy slides into the machine which is a long tube. It is about the diameter of one of those tubes kids play in at Burger King. Mine was open on both ends.

They told me I could have earphones with music or earplugs. I took music, but wish I had taken the earplugs because the noise of the machine drowned out the music anyway.

I had to lay perfectly still. The noise was on again off again. VERY loud clacks and brrs and other sounds.

I closed my eyes. I am slightly claustrophobic and it was difficult for me. I cried a little. What really helped is they said that if I really needed to, they would stop the machine for me. Of course that would mess up the test, but it helped to know. Also it helped me to realize that I was not strapped in and if I really wanted to I could slip out of that machine anytime.

I did not like the MRI, but I wouldn't hesitate to do another one if I needed it.

Kerin

 

[Bernard]

Hi Meredith, eucalyptus is one of the essential oils which is purported to exacerbate seizures.

Stacy has had grand mal seizures within 24 hours of having her nails done something like 3 times in a row now. She told me she would stop having her nails done.

The chemicals in the air are so strong, I get a headache if I'm in the building more than a few minutes when I go to pick her up. I don't know how the ladies who work there can stand it. :dontknow:

 

[MeredithVS]

thanks for the advice

Thanks so much for the advice. I will start looking for another colorline.

And I am not claustrophopic, so i feel like I should be able to handle the MRI now. I'm afraid of the contrast. The contrast HURTS it makes me itch and burn and I taste this horible metallic taste... and when they did that one, I was strapped with my hands above my head with an IV in both arms that released the dye.

 

[MeredithVS]

last night and an important ? about klonopin

Last night I spent 5 hours in the ER.
I was on my way to school (my mom was driving) and I went into multiple seizures... I've never had these before. And these were more violent that what I have had.
I began to vomit... which is totally gross and jerk violently.
My mom said she had to pull over about 3 times during our trip the hospital.
I don't remember anything but stopping to get gas before anything happened, and then I remeber at one point she told me to put on my sunglasses and try to sleep. apparently i had another after.... it took almost an hour to get to the hospital (Atlanta traffic.)
When we got there the people in the ER checked me in. There was NO ONE else there. My head was killing me, but my mom was terrified so I tried not to say anything about it.
About 30 minutes into our wait, my headache started to decrease and I felt hungry. I hadn't eaten in about 4 hours and I also am a diagnose hypglycemic.
The people wouldn't let me even have a soda or anything to drink or eat. Mom was passing me lifesavers mints. I decided to just take a nap. My doctors office told me I wasn't to leave the ER under any circumstances (we called them first) I was laying my head on my moms shoulder, and about 2 and a half hours into our wait in the ONCE emply waiting room, now full....... I had another seizure. Not as big. This one was very strange because I was having a dream about donuts and then This man was holding my hand and telling my mom to calm down. Mom was holding me really tight to keep the people from staring. Then I went out for a second and came around in time to hear the EMT telling me that my pulse was at 120 and they were bringing a wheelchair.
Some lady was screaming at the people at the front desk "How could you people do that to that child! SHe has been sitting here longer than anyone! How can you just wait for her to do that! What about the people out here! Don't you know they are scared! What is wrong with this hospital! You need to take care of her!"
No wheelchair arrived.
But eventually some guy with an office chair on wheels came around.
Okay... I would have been better off walking.
In the end I waited for another 3 hours was given adavan and send home with a perscription of Klonopin but I have NO idea how to take it because the doctor never came back in to tell me how and the nurse said that she didn't know either she said that she thinks that I am supposed to stop taking my lamictal and begin taking klonopin.
Does this sound right?

 

[Birdbomb]

Do you have a regular neurologist?

If so call them ASAP. If not call your primary and have a referal to one done STAT. You need your medication adjusted by someone quailified and familar with your medical history.

DO NOT STOP ANY AED MEDICATION SUDDENLY

The body must be slowly weaned off these drugs or all kinds of nasty things happen, rebound seizures, to start with.

Klonopin is very effective for some but it's derived from morphine so it's highly addictive and very hard to come off of. One of my E buddies has been trying to wean himeself off klonopin for 2 years. When I took klonopin, I got toxic, and it took me 3 months to get off the drug

You were treated very shabily at that hospital! You can always call the patient advocate and file a grievance. Something simular happened years ago at a military hospial. Had a late night trip to the ER after dislocating a bone in my foot, there was NO one in the place. Hubby had to get a wheelchair himself and as we walked thru the entrance we could see the staff watching wrestling while the doctor slept! They made us wait 3 hours. I called the Chief of Hospital services and complained. OH boy did those guys get nailed!

 

[brain]

BIRDY IS ABSOLUTELY RIGHT!!!

When we were victims of an accident in
June, my son was getting PEEVED to the
core when the ER Doctors wouldn't let me
have my AED's!!! They knew very well I
was on AEDs! And it was PAST time and
I was overdue for my meds! Mind you, I
began to feel really funny leaving that ER
I took my meds as soon as I got home,
and waited 6 hours and took the rest,
and got myself back on schedule! I wasn't
going to put myself in a seizure-mode,
and certainly not with a neck and back
pain like this! It was hard to tell if I was
in pain or out of sync or both for a few
days and I was up and down like crazy
and my Insurance Company (which I was
on the phone with the next day) had to
cut calls short to have me lie down as
I was slurring and not making sense. I
did not complain, MY SON DID! And he
it's still a sore subject when it's brought
up, as he gets miffed about it.

 

[Bernard]

Hi Meredith,

I saw your post earlier today, but had to leave the house and did not have time to post any reply. Birdbomb said everything I wanted to say though plus more. :hi5:

 

[execwife2002]

Hi Meredith,
OMG...what an ordeal you have been through lately. I know how horrible hospitals can be. My son is 19 and has had seizures since 12 1/2. He doesn't have them all of the time, usually 1 every 3 weeks or so. Lately he went 2 1/2 mo. without one and then boom. But, one day he had 4 in a row within 12 min.. I called 911 after the second one. He had 2 more while the Peramedics at our home.. They rushed him to the hospital and all of the rooms were filled, the halls too were filled ( just like on T.V.) anyway I was with him and started raising my voice as this was an emergency ( he( my son) was still unconscious). Thank goodness a Dr. who recognized me ( been there to many times) made a switch around and got him a room. The peramedics made some noise too and my son got attention right away. If I ever have to go through that again I will come in the E.R. with bells and whistles to make sure he is attended too.
Marian

 

[Zoe]

Hi Merideth,
Sounds like you are staying right on top of things. You may want to do a google search on any medication you are taking and whether it may trigger seizures, which sometimes happens with any number of medications. Amitriptyline [Elavil], one of the drugs used for panic disorder, does increase the risk of having a seizure.
Extreme panic and cardiac arrythmia were symptoms of my seizures. When I learned to control those symptoms, I also began to get my seizures under control. I saw a pyschologist for this and learned self-hypnosis to manage the panic symptoms which also improved the seizures.
Keep your hopes up. It can be frightening and frustrating to have seizures. Yet there are many options for managing them and learning to reduce the risk of having one.

 

[Zoe]

You can call the radiology department and talk to them before you have the MRI. They will want to know that you have had a problem with a scan in the past. Also, be sure you tell them again before you go into the scanner and are assured that you can just call them should you have a problem during the scan.

 

[Zoe]

Hi Meredith,
Must have been having a senior moment not to make the connection right off. "Panic" and seizure episodes may be related. There are many types of cardiac disorders which can look and act like seizures even leading to a diagnosis of temporal lobe epilepsy. This letter below is from the Mayo Clinic magazine. It is very common for people with any number of types of cardiac disorders to be diagnosed with epilepsy, the symptoms can be identical. It may be something for you to consider, especially since panic can also be another of the symptoms of cardiac disorders. For more information, try a search on "epilepsy" "syncope" on google.

Mayo Clin Proc. 1999;74:533-535 © 1999 Mayo Foundation for Medical Education and Research

Letters to the Editor
Cardiac Asystole Masquerading as Temporal Lobe Epilepsy
To the Editor: The article by Dr. Ficker and associates on cardiac asystole masquerading as temporal lobe epilepsy, which was published in the August 1998 issue of Mayo Clinic Proceedings, was an excellent, concise summary of what can be a very difficult clinical distinction. As the authors quite correctly stated, the decision in this scenario is often made clinically. I would like to offer another “pearl”—although both patients with cardiac syncope and those with seizures have myoclonic jerks, the etiologies of the motions differ. Because of the intense electrical stimulation of the muscles during a seizure, affected patients almost universally respond affirmatively when asked whether they experience muscle soreness after an event. This symptom occurs because many more muscle units are spuriously recruited by the seizure discharge and because they are all working concurrently—flexors and extensors—against each other. The lack of such electrical storms in the central nervous system of patients with cardiac syncope makes similar complaints of muscle soreness rare.

Gregory A. Hood, M.D.
Southern California Permanente Medical Group, La Mesa, California

http://www.mayoclinicproceedings.com/inside.asp?AID=2589&UID=