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seizures starting back
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Georgiaann posted:
here I go again and it never ceases to amaze me.
My seizures will go months not have any than all of a sudden 2 in a month.So it seems my meds aren't doing there job all of a sudden.
My pacemaker isn't either it doesn't want to catch them either.
I guess it has to much to do.

the phenobarb isn't working like it was suppose to either.
I give up.

Belinda
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saxofone1 responded:
Belinda, DON'T GIVE UP!!!!!

I went through this so many times before I had my lobectomy in '02. And I'm sure many on this site have had to deal with this too. YOU ARE NOT ALONE!!!!!!!!!!

I too had periods of no seizures and was thinking that we finally found the right med(s). Then out of the blue BAM, SEIZURES.

I know I have been on at least 10 different meds prior to my surgery. Pheno was back in the 70s when I was in high school.

Belinda, you have to be stronger than the seizures. I feel that I can honestly say this to you because I have walked similar paths.

Have you and your doc(s) discussed other options of treatment such as the VNS or a lobectomy? Have you noticed a pattern to your seizures? Are they more frequent around your menses? Any foods bother you? Think of any thing that might help you with your frequency.

Not all of us have our seizures completely controlled with meds. Mine certainly weren't. What got me through it was that I am a stubborn person who refused to be a prisoner of epilepsy.

Is there an EP foundation in your area? A live support group might beneficial to you. Check out a local hospital too.

DON'T QUIT!!!

HUGS AND LOVE TO YOU,
angie
 
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Georgiaann replied to saxofone1's response:
saxophone1,

I've had three VNS surgeries and I've been in 21-22 different meds.I also had a RTL, and I sure feel alone when I have gone so long than all of a sudden they start back up.

I took valium in High school in the 70's.About 50% are controlled by meds.I'm allergic to six meds and med resistant to everything in the Tegretol family except the original Tegretol.

The nearest Epilepsy foundation is quite bit from me.I'm not sure if there is a support group though it disbanded years ago.

There's no pattern for my seizures and I don't remember mine, unless someone has told me about it or I bit my tongue or lost control of my bladder.

I'm on 4 meds now Tegretol,Topamax,Clonazepam and phenobarb.
I've had 4 seizures this month and three were this week.
I've had epilepsy 49 years and one thing might help with my seizures is my heart pacemaker.
 
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saxofone1 replied to Georgiaann's response:
Wow, Belinda,

You have been through a lot. I'm so sorry to hear that with all that you have already been through, you still are searching for some relief.

Check the resources on this site and maybe something new will there for you. New info is always being posted. Is it possible for you to ask the Ep Foundation to send you an info packet to see what is new?

I knew a seizure had passed because of an unpleasant taste in my throat. At one time, I had sensations to warn me of an impending seizure.

Maybe there is a local support group at your neighborhood hospital. Have you googled for support groups in your area?

Are you seeing a general nuerologist or an epileptologist(seizure specialist)?

Will you please explain how your pacemaker is helping.

Please keep in touch with us even if you need to vent/rant about whatever you ate for lunch. Talking/sharing can be helpful to your emotional spirit.

More hugs to you,
angie
 
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Georgiaann replied to saxofone1's response:
I'm seeing a neurologist been with him 23 years.
I've tried some of the supposedly best epileptologist at Emory in Atlanta. I've had bad luck with them, and my neuro knows my case better.

My pacemaker has really helped to cut down on my seizures.
I was told it probably would I was having more triple of what I have now and I've had 5 this month.
Two today.
 
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saxofone1 replied to Georgiaann's response:
Hi Belinda,

Twenty -three years is a long time to be with a doctor. There is definitely a trust/comfort zone there. Which is very important.

Have you recently checked Amazon for books about epilepsy. There are so so many that I know I'll never read them all. A lot of them are reasonably priced but there are those that I simply can't afford.

I had problems controlling my seizures prior to the lobectomy. Though I never had such concerns that you have been experiencing, I do understand your frustration.

I hope you're feeling good today and haven't been too exhausted from your last seizures.

Simply drop in with a hello whenever you feel that need to rant/share, or whatever.

angie
 
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Georgiaann replied to saxofone1's response:
saxofone,


I don't feel it's necessary for me to read books on epilepsy.
Epilepsy been my life I feel like i could write a book a though.
 
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dancer86442 replied to Georgiaann's response:
Hello Belinda,

Welcome to our Community. My First questions: Do you know what triggers your seizures & do you keep a Daily Journal? Chek out our Journal Info under Helpful Hints to be sure you are including all necessary Info. A Daily Journal should be Mandatory! Especially when trying a New medication/dose/treatment. As well as Eating Healthy! Nutrition plays a big part. It can Help how we react to meds (diminish &/or eliminate some side effects) & Helps meds work Properly. Nutrition Helps us Metabolize our meds Properly!

I Know how frustrating it it IS to have seizures, just when ya thought you had control. You have been thru a Lot & it is a shame the DRS have not been able to control them. But, you are Not Alone!

How long have you been on the Phenobarbital? Has your DR considered weaning you Off some of your other meds? I know, when first starting a new med/dose, increased seizure active is a Possibility. But, I'm, also, wondering about the interactions of the other meds w/ the new addition. Did you Know that Monotherapy has been proven to be Best when trying to control seizures? My Daughter was on Multiple medications for Yrs & she insisted her Dr wean her off all of them B4 trying a new med. She is now on Lyrica & has Control. I am on Phenobarbital, also. I started out taking them 3 times a day, but, was unable to stay awake after morning dose. So, asked my DR if I could take my full dose at Nite. I am on 180mg & That has controlled my seizures for 25 yrs. You can read about my Journey if you clik on my User ID or Photo.

OK, so you don't need books, as experience has taught you well. But, do you keep up w/ the Latest on Scientific Research/Treatments &/or new Epilepsy Products? Did you know they have developed a watch that can alert you to on-coming seizures? I don't have the article saved on this comp, but, you can use your Search Engine to learn more.

I could write a book about my own experiences, too. But, I have found Education & Support Groups to be more my style. Hugs! Hope you are having a Better Day.

Love Candi
 
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Georgiaann replied to dancer86442's response:
dancer,
there are a few things that trigger my seizures,crowds,stress ,heat&humidity.Mono therapy would never work with me.
I have to many different types of seizures I'm refractory I don't just have one type of seizure either.
I wouldn't believe in a million yrs that a watch could alert me to a seizure I'd have to have proof.
Not everyone is controllable I'm allergic to some meds and med resistant to others.
 
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dancer86442 replied to Georgiaann's response:
Belinda, I have more than one Type & more than 1 Cause. So does my Daughter And my Sister.

I assume you have learned to avoid some of your triggers when ever possible. I know my Sis & daughter had/have Catamenial (hormone induced) seizures & they had similar triggers. Have you ever consulted a Homeopathic MD?

Belinda, I have been here w/ this group for over 20 yrs. I am well aware of Refractory Epilepsy & medication Issues. I think it is the same w/ all of us when it comes to medications. Our bodies/systems either accept or reject & sometimes, it's just a matter of what you can or can't tolerate as a side effect.

The watch has been the latest news in Research. One lady I am talking w/ on FaceBook has one & Yes It Worked! But, like you I want more than Research & 1 opinion. It could be like our meds: Works for one, but, not another.
 
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Georgiaann replied to dancer86442's response:
dancer,
hormones would increase my seizures.

It's hard to avoid what triggers my seizures heat&humidity I live in Georgia. Crowds there are places I wont go. stress if I could manage my stress it'd help.my seizures cause stress.
I can handle side effects of meds. My seizures are good at coming on for no reason.

I got rid of stress in my life I didn't need my mother.
 
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dancer86442 replied to Georgiaann's response:
Hi Georgiann,

I lived near Atlanta for over 5 yrs. Heat & humidity didn't affect my seizures, Thank Goodness. I had been on my Pheno's for over 2 yrs & seizure free B4 moving there.

If Hormones are a factor/cause of your seizures, ask your DRs to do a Hormone Level check (if they haven't already) and ask for progesterone cream to help. Hormone levels can affect us even after Menopause. As my Sis found out the Hard way!

There are ways of diminishing/ eliminating Stress. In fact, this was being discussed on a FB Support Group. A friend of WebMD's is a member of our Group & was talking about how Stress not only caused seizures, but, also made him think, say or do things he normally wouldn't. Our Group Founder replied best: When we are Stressed Cortisol builds up in our brains to a point where we get fight or take Flight feelings & we don't get it out of our systems creatively (yoga, meditation, breathing exercises, or even creative hobbies) so, it tends to grow as a 'negative energy'' causing anger, self-pity, depression, etc.

Seizures Always seem to 'come out of the blue' for no apparent reason. But, if you keep up w/ a Daily Journal you may see a Pattern & Find Reasons!

Have you joined any Epilepsy Support Groups on Face Book? Look for the National Seizure Disorders Foundation Community & ask to join. If you have problems let me know & I can assist. Hugs!
 
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saxofone1 replied to Georgiaann's response:
Hi Georgiann,

I have been dealing with ep most of my life too. You and I coudld probably write a book together. Most of us could.

I simply read the books for new info. I have learned much. The books have also given me new questions to ask my doctors.

Hope you're having a good day.

angie
 
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An_252597 replied to saxofone1's response:
one thing you may not think their is a cure but guess again if you have scar tissue that's whats causing them i had it to but be warn the pills they give you to heal up may cause anxitey i had all of this except i had adhd 2 years off the meds no more seizures in till 9 months every thing i just said is true you will have to go to test though i hardly feltany pain when i woke up
 
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saxofone1 replied to An_252597's response:
Hi "an_"

I don't really worry about a "cure" for myself in regards to my ep. I simply want the seizures to be under control so that I can continue to have a productive and fun life.

My ep is due to scar tissue from meningitis I had as an infant. The lobectomy I had in "02 removed it and I'm doing great. An occassional break-thru seizure but after experiencing 12-20/month, that one doestn't bother me at all. Except if I'm watching football and I miss a play.

Good day to you and your family,
angie


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