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Levetiracetam, weight gain etc.....
floridanons posted:
Hello all,

My wife was diagnosed with Epilepsy when she was just a baby. The treatment discontinued after her seventh b-day as she no longer had seizures. She was unaware of this as her mother never passed on the information to her. In the 20 years we have been together, she had fainting spells and severe migraines on occasion, she wrote this off as having low blood pressure (???I don' t know why). Though no Doctor ever had an answer to the headaches or fainting. Weird huh?

Well we got a triple-whammy this past year in July. Diagnosed with epilepsy after fainting at the doctors office, he recognized it as a mini-seizure. On top of that she has had neck surgery two months after diagnosys and needs something done with her lumbar spine. She is always in moderate to severe pain in her lower back.

Doctor recommended a Neuro and we were off to the races. Well she has been on Levetiracetam 1500 a day since July. Out of work, unable to drive, unable to take her long walks daily, she is losing her zest for life. She has gained about 30 pounds and is far from the woman (emotionally) that I remember.

One month ago the Neuro added Vimpat to the regimen because she is still having seizures.

Now all along in the 20 years she has only had fainting spells associated with what we now know is epilepsy. Once treatment started they have turned into the higher level with muscle tensing coupled with auras . They are more frequent as well, at least once a week, when before treatment it was maybe four times a year. Though headaches a lot.

On the bright side she no longer had headaches.

I'm not even sure what I'm asking here.? Anyone else have similar experiences? Did you change your meds to something else?
floridanons responded:
To add to this. She is very lethargic and her memory is not nearly as sharp as it once was. She is forgetful of the simplest things.

I guess it is just taking its toll on us. We are in it for the long haul, but I need to connect with others that have the same issues. Perhaps we can find other answers from all of you.
dancer86442 responded:
Hello Floridanons,

Your wife is not Alone. Lots of ppl w/ Epilepsy have experienced same or similar issues. Medications, Epilepsy or the Combo are usually the culprits. Yes, even our meds can trigger seizure activity. Especially when we first start on them. Then again, it is possible that her seizure activity is Spreading (in her brain) Only tests can determine what's what, most times. Blood tests for med levels. Portable or Video EEG's MRI to determine origin of seizures & how much of the brain is involved. )

I, personally, went thru 5 med changes, In a 10 yr period. I finally achieved control at age 37. My Mom neglected to tell me about my Infant seizures & never mentioned that my Sister had Epilepsy, too. You can read my Profile by clicking on my User ID or Picture.

A new research study has shown that D3 can Help alleviate back pain. Plus, it is good to prevent/control mild to severe depression. Another Issue that can be caused by meds &/or Epilepsy.

Researchers have proven there is a direct link between headaches/migraines, too. Some of our meds can work for seizures & headaches/migraines. I believe Topamax is one of them. Lyrica may be another. But, the use of certain meds depends on types of seizures, too. Unfortunately, It is All 'trial & error' for each individual.

One of our former members is a Journalist. She has her own site & has over 200 articles she has written about Epilepsy & associated Issues. The Add Link feature is not working for me. You can find her page/group in our Helpful Tips or Resources. Look for Phylis Feiner Johnson & clik on her link. You do Not have to join to read her articles. You Can join if you wish to comment or ask questions. At the bottom of each article she has posted links to her Resources. I have been doing my 'homework' for over 20 yrs here on WebMD & the resources she uses are pretty much the same sites I learned from. She has a search Tool in her Menu. Use relevant words to find associated topics. Like 'Memory Loss'. I just re-read that article & think that will Help you to understand a Lot more.

As for Lethargic: Our meds deplete certain essential vitamins. Others' on Keppra have suggested increasing B6 for Mood swings. And B12 for Energy. But, any vitamins/supplements she takes, she needs to inform her DR about on her next visit.

Personally, if I was your wife, I would be demanding that DRS wean me off both meds, since they are not working to control seizures. Start Fresh w/ a New med &/or learn about Alternatives. DRS Used to recommend 6 weeks on any given med. Now, it is 2 weeks. If 'quality of Life' is not up to par w/in that time limit, it is a good idea to try another med/treatment/alternative..

Suggestions/recommendations: First, Start a Daily Journal! (More Info in Tips. Second: consider a Service Dog. I know SD's can be quite expensive, but, I do know of an organization, that charges a lot less than Most! Search Google for to learn more.

Keep asking Questions! Keep Learning. Education is Power & Very Necessary in coping w/ Epilepsy & all it's aspects. There are books on that can help. Please note authors/titles & then visit your Local Library & ask for the Research Librarian. They will see if there are any books available & if not, search other libraries &/or used book stores for you. A book that was recommended over 20 yrs ago & is still recommended. Treating Epilepsy Naturally by Patricia Murphy.

Visit & locate your State Epilepsy Foundation. There may be a Live support Group in your area. Encourage your wife to join us or seek Support groups on-line if there is no Live group near you. The NSDF site I recommended has a personal page & a Facebook page. If you go to Facebook, Friend: Jeanne Phelps. I will add her to some Good Groups. I am a Good Listener & visit WebMD everyday. I have Learned there is no such thing as Too Much Support/Info!

Hope this Helped. Hugs!

Love Candi
March 26 Epilepsy Awareness Day Advocate
floridanons replied to dancer86442's response:
Thank you Candi,

We have had the EEG and MRI's. The Doc stated she had a beautiful brain. No lesions could be detected. He did say on our last visit after starting the Vimpat that he would like another MRI in the near future.

Well, my wife has also developed a wonderful case of claustrophobia, making the MRI's a challenge for her.
floridanons replied to dancer86442's response:
Also anyone out there.

Is there a combination or a single med you have found that works well? I do realize everyone's pathology is different and all people will not respond the same.
dancer86442 replied to floridanons's response:
Hello Floridanons,

First, all my EEG's & MRI's have been 'Normal'. I had a Portable done several yrs ago that did Show Activity. Your DR May eventually request this test or you can Insist!

A Lot of ppl seem to have claustrophobia during MRI's I just learned to relax using deep breathing.exercises.

As for your question about meds. I have been seizure free for over 25yrs on Phenobarbital. Others' have achieved control on Dilantin, Lyrica, Neurontin & many other meds. As you said, it depends on a persons pathology. My Sis achieved control after 52 yrs w/ the Modified Atkins Diet & Natural Estrogen.

Here is hoping you find a solution for your wife. Soon! Hugs

Love Candi
March 26 Epilepsy Awareness Day Advocate

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