I'm a newbie to the forum but old to siezures

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

donding

New
Messages
50
Reaction score
0
Points
0
I'm Donna Beeler and live in the great state of Alabama. I started having seizures out of the blue when I was 35. May 6th 1995 to be exact. I am now 49....so I've had them for quite a few years. I've taken Tegretal, Zonegran, Kepra, Dilantin, Depakote and probably more I don't even remember. I am presently on 700MG of Lamactal. I still have seizures but not as severe when on my meds. My seizures occur about every 30 to 45 days and all in one day. I can have up to 10 blackouts...that's what I call them...and grad mal seizures all within a 24 hour period, then I'm good for another 30 to 45 days. I spent time on the epilepsy monitoring unit several years ago. They have never found the cause. My health in the last year is on a downward spiral and I am curious about rather I've developed a thyroid problem or rather that could be the cause all along but was undiagnosed. That's me plain and simple. I'm glad I joined the forum so I feel there are people out there just like me.
 
Hi Donna - My daughters seizures began out of the blue also but at the age of 14.
We tried the drug path, Tegretol, Gabapentin, Lamictal, Trileptal, I finally said enough. There is a point where the % chance you will find a med that works drops dramatically.
Rebecca's life spiraled downward as well, and the quality of life as a teen was hard to watch.

I finally began to be proactive. I met some doctors online that believe that for many, changing nutritional choices can improve GI health. We have added supplements to support brain and body health, and kept a journal to find connections of life choices that affect seizure threshold.

Life has dramatically improved. It isn't a quick fix, but it is a lifelong fix.
I can't claim it works for everyone, but there are many who see results when they are disciplined to make the changes.

BTW - Welcome to CWE. We are glad that you decided to join us here.
 
Thank you Robin. I've gone off my meds and went back on them so many times I don't remember. I get frustrated then go off them. When I was in the epilepsy monitoring unit considering brain surgery, they could never catch me having a seizure until the last time I was there. Only problem was they didn't even have me hooked up. I had three grand mal seizures that day which was the most grand mals I ever had in one day...I usually have a up to 10 blackouts in a 24 hour period and maybe one grand mal. That day I had walked down to the nurses station to find out when they were going to get me hooked up and had my third grand mal right there at the nurses station. I was on call so I could go in anytime I started having seizures. If they didn't catch me having a seizure the day I went in, I would go home the next day because they only had 24 hours to catch it. I never went back when I found out my insurance only payed 60%. If I started blacking out right after I got up they would only last that day. If I started having them after 10 o'clock in the morning, then I usually had one or two in the morning the next day.
 
Hi Donna, welcome to the forum. :hello:

Have you ever had your thyroid function evaluated?

I remember when my wife used to have a pretty regular schedule for her seizures. At least then we could kind of prepare for them. Her seizure patterns have changed dramatically over the years as she has tried different things to get them under control.

Do you get regular sleep at night? Just curious because chronic sleep deprivation catches up to you and can be a big factor in your seizure threshold.

More ideas: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/
 
Hi Donna! welcome to our exclusive group! LOL
Where in Alabama are you...I have a LOT of family there and have lived in both Montgomery and Troy.
I got diagnosed with E at age 47. Two year later I would have thought I would have a hold on this thing...but I have learn it has a hold on me! But I am learning how to tame it.
Before I started meds, I could have multiple seizures in a day or go weeks between. With my meds, I can go 4-6 months with no seizures and WHAM one hits me...so my meds are constantly adjusted.
This is a great group of understanding, supportive people with a lot of information or experiences with E. I referred to it as home!
jenn
 
Hi, helllo

and how do you do? It's nice to meet you, Donna. :)

Sounds like you've had your fair share of issues with E.....and thyroid problems CAN contribute to issues within the body, having had them for a number of years now. My hypothyroidism has played a part in my E before, but not much. I had to balance out my hormones, and after that, it was just a matter of staying rested, taking my meds, and watching my diet.

If you DO suspect that it's your thyroid, have your regular physician run a screen for it, or ask to be sent to an endocrinologist--they are the specialists in this. They will look for levels of TSH, T3 and T4. Whether you are hyperthyroid, or hypothyroid is entirely dependent on those levels. Hypo means that the thyroid produces too little, and Hyper means it produces too much. Either way, a balancing act will have to occur. Diet can also help with thyroid issues--thyroid sufferers quite often have issues with iodine as well.

Welcome to CWE, you're going to like it here I think. Mr B has built us an AWESOME home here. The dinner party is fun, and the guests are great, especially as friends.

Take care,

Meetz
:rock:
 
Hi Donna, welcome to the forum. :hello:

Have you ever had your thyroid function evaluated?

I remember when my wife used to have a pretty regular schedule for her seizures. At least then we could kind of prepare for them. Her seizure patterns have changed dramatically over the years as she has tried different things to get them under control.

Do you get regular sleep at night? Just curious because chronic sleep deprivation catches up to you and can be a big factor in your seizure threshold.

I've had my thyroid tested twice that I am aware of. Once when I first started having seizures in 1995, then right before I went on Lamactal in 2005 or 2006..don't remember when. Both were normal. I currently don't have a neurologist because of no insurance and we moved to this area about a year ago and getting ready to move again. I think I have developed a thyroid problem in just the last few months, but I really wonder if I have been having Thyrotoxic Episodes, which from what I have researched, are hard to detect because your thyroid levels can be normal at one time and not the next. Because of the regularity of the seizures and the cluster of them I really wonder if I haven't been having the Thyrotoxic Episodes for a long time. It really all makes sense. I have also thought they were hormone related. I wish I was back in Dallas to take this up with the neurologist I had there. Now the trick will be trying to convince a doctor to consider this here. I've been to alot of neurologist and many of them I feel like don't even know anything about seizures or have very limited knowledge. Any one need a good neurologist in Dallas I'd highly recommend Dr. Jay Harvey.
 
Oh and as for sleep. I take Trazodone and have taken this for years. It works alright..not always but usually. The usually part has to do with right before I have seizures. Two nights of tossing and turning even after taking the med.
 
Hi Donna! welcome to our exclusive group! LOL
Where in Alabama are you...I have a LOT of family there and have lived in both Montgomery and Troy.
I got diagnosed with E at age 47. Two year later I would have thought I would have a hold on this thing...but I have learn it has a hold on me! But I am learning how to tame it.
Before I started meds, I could have multiple seizures in a day or go weeks between. With my meds, I can go 4-6 months with no seizures and WHAM one hits me...so my meds are constantly adjusted.
This is a great group of understanding, supportive people with a lot of information or experiences with E. I referred to it as home!
jenn

I live in Enterprise at the present time but am moving to Ozark at the first of the month. Troy isn't very far from here.
 
Hi Donna, welcome to CWE!

I had my first seizure at 35 also, so I guess I know how that feels. I agree with the others above -- if you suspect that you thyroid is a potential cause, get tested. I think one of the ways they suspect that Lamictal helps to control seizures is by interacting with Tyrosine, an amino acid that is a precursor to the thyroid hormone Thyroxin, so that may be another indication that you should look into this more closely. I hope you get some answers soon.

Best,
Nakamova
 
Hi Donna, welcome to CWE!

I had my first seizure at 35 also, so I guess I know how that feels. I agree with the others above -- if you suspect that you thyroid is a potential cause, get tested. I think one of the ways they suspect that Lamictal helps to control seizures is by interacting with Tyrosine, an amino acid that is a precursor to the thyroid hormone Thyroxin, so that may be another indication that you should look into this more closely. I hope you get some answers soon.

Best,
Nakamova

I've been on Lamactal on and off in the last 5 years. Could the problem develop later after being on it on and off? I had no known problems with it when I was on it the first time, I had the joint pain on it when I was on it for the second time, but this time there are so many symptoms I can't count.
 
Absolutely -- people can definitely have different side effects from meds at different times that they are on them. Part of it is that the body itself changes over time -- things like menopause and aging metabolisms affect how the meds are absorbed and how consistent the levels are. Your joints may be more vulnerable to the effects of the Lamictal. And Lamictal has a strong relationship with estrogen, so that could be a factor too.
 
Absolutely -- people can definitely have different side effects from meds at different times that they are on them. Part of it is that the body itself changes over time -- things like menopause and aging metabolisms affect how the meds are absorbed and how consistent the levels are. Your joints may be more vulnerable to the effects of the Lamictal. And Lamictal has a strong relationship with estrogen, so that could be a factor too.

I had a complete hysterectomy back in 2000 or 2001. They had upped my estrogen to cover this. Maybe it needs to be done again. I had the option of having them remove my ovaries or leaving them in. I had them removed because I thought that may have had something to do with my seizures. As you can see I've been grasping at straws for a long time. I just can't stand the thought of going on another seizure medicine. I've been on so many and still have seizures. Lamactal has been the only one that made them less severe and I thought I wasn't having any side effects. The amount of meds I had been on was why one of the neurologist I was seeing wanted to do brain surgery.

Sorry for the multiple posts.
 
New Here Also

Hello Donna,
I am new here also, and it looks like a more than great place to be able to talk to others who understand what I mention and want to talk about pertaining to seizures. I have had my seizures for about ten and a half years now. I wish I would have known about this location sooner! I hope you have a pretty nice weekend.
Emily
 
Hello Donna,
I am new here also, and it looks like a more than great place to be able to talk to others who understand what I mention and want to talk about pertaining to seizures. I have had my seizures for about ten and a half years now. I wish I would have known about this location sooner! I hope you have a pretty nice weekend.
Emily

Thank you Emily. I wish I had found this forum a long time of go. I've got to learn the ropes as to what is where but I'll get there. What I've seen so far there is alot of good info. It's nice to know I'm not alone and have found people who understand and don't run when you mention seizures!
 
Hey Donna...I know the area of Alabama you are in...I have family that live in Dothan and Ashford!
When I got diagnosed 2 years ago, I searched the internet for more info, I posted on a few E sites....but this is the only one I stayed with, everyone here is very supportive and some times we just need to know we are not alone in this.
jenn
 
Donna, there are natural methods that you can try. I personally can't find a reason not to, since they don't cause any harm.
First is nutrition. It doesn't have to cost much, but it does have to be a priority.
Sensitivities
What Diets Have You Tried?

Second is to work on clearing your liver.
Liver Health

Third, if you can afford it there are some supplements that can help with adrenal fatigue ( a precurser to thyroid issues), brain health, etc.
Adrenal Fatigue
Omega 3 - DHA

Other ideas worth considering:
GI - Brain
Thyroid Dysfunction
Alternatives
Do Alternatives Work?

There is obviously more on the subject, but I just grabbed these from a quick search to get you started.
I hope this info helps you and gives you the courage to realize that perhaps there is another route you can take.
 
Oh and as for sleep. I take Trazodone and have taken this for years.

FYI:

Seizure Possibly Caused by Trazodone HC1

SIR: I have not seen it mentioned in the literature previously,
but I have had a patient who had a seizure most likely due
to trazodone HC1.

The patient, a 28-year-old registered nurse, had never had
a seizure disorder and was taking no medications, licit or
illicit, except for 75 mg of trazodone HC1 at bedtime, which
she had been taking for S days. There had been no orthostatic
dizziness, although her blood pressure had not been taken
before the event mentioned here.

The patient’s depression had improved and she was dniving
to school. The last thing she remembered was leaving her
driveway. The next thing she remembered was waking up in
a police station. In the interim the patient had driven several
miles, had hit one car, pushing it into a third car, and then
plowed into a tree. Fortunately, nobody was hurt except that
the patient sustained a left frontal bruise. Skull X-rays and
EEG and CT scan of the head were normal 2 days later, as
was a neurological examination.

After the accident the patient did not remember that she
came out of the car angry and swinging at the police, who
tried to restrain her. It is not clear whether she started
swinging after they tried to restrain her or before. She was
extremely combative and belligerent. When she woke up in
the cell she found that she had been incontinent of urine
although not of feces. She had not bit her tongue, nor had a
seizure been witnessed.

The same night, after her parents had taken her home from
jail, her mother, also a registered nurse, witnessed the patient
having what she described as a grand mal seizure in bed.

After that the patient was admitted to the hospital and
evaluated neurologically and psychiatrically after the trazodone
was discontinued, and no abnormalities were found.

The current Physician’s Desk Reference (PDR) lists muscle
twitches as one possible side effect of trazodone. It is
conceivable that lowering the seizure threshold, as occurs in
other antidepressants, may be an additional side effect of the
drug.

NEWTON D. BOWDAN, M.D.
Holyoke, Mass.
...

http://ajp.psychiatryonline.org/cgi/reprint/140/5/642b

Post Introduction Reports: Although the following adverse reactions have been reported in Trazodone HCl users, the causal association has neither been confirmed nor refuted.

Voluntary reports received since market introduction include the following: abnormal dreams, agitation, alopecia, anxiety, aphasia, apnea, ataxia, breast enlargement or engorgement, cardiospasm, cerebrovascular accident, chills, cholestatis, clitorism, congestive heart failure, diplopia, edema, extrapyramidal symptoms, grand mal seizures, hallucinations, hemolytic anemia, hirsutism, hyperbilirubinemia, increased amylase, increased salivation, insomnia, leukocytosis, leukonychia, jaundice, lactation, liver enzyme alterations, methemoglobinemia, nausea/vomiting (most frequently), paresthesia, paranoid reaction, priapism, pruritus, psoriasis, psychosis, rash, stupor, inappropriate ADH syndrome, tardive dyskinesia, unexplained death, urinary incontinence, urinary retention, urticaria, vasodilation, vertigo, and weakness.

http://www.drugs.com/sfx/trazodone-side-effects.html
 
Hey Donna...I know the area of Alabama you are in...I have family that live in Dothan and Ashford!
When I got diagnosed 2 years ago, I searched the internet for more info, I posted on a few E sites....but this is the only one I stayed with, everyone here is very supportive and some times we just need to know we are not alone in this.
jenn

Jenn....you want to hear something funny??? Before we moved here a year ago I lived in Wylie, Tx. Not far from Rowlett at all. So I know the area you are in too. If you don't mind me asking...what neurologist do you see there? You don't have to answer that is you don't want to.
 
Small world! I know Wylie...I go to church in Rockwall.
I go to Texas Neulrology on Gaston, near Baylor. Dr Heitzman is my neuro, he is great!
 
Back
Top Bottom