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Becka

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My daughter was diagnosed with epilepsy at 3.5 years old. She had atonic/drop and myoclonic seizures. She was on Depakote for about 1.5 years and after being seizure free that whole time she was taken off the medicine. She is 14 now and was just diagnosed with JME in January after having her first tonic-clonic. She is back on Depakote and we are still struggling to get her seizures under control.

Thanks for reading this and I look forward to getting to know you. :)
 

Porkette

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Hi Becka,

Welcome to the forum! I've had myoclonic seizures along with absence and complex partial seizures just like your daughter. I've also taken
Depkaote for many yrs. until my body got used to it and it no longer worked for me. Your daughter is at a hard age now going through puberty and that in turn causes the hormones to change which can trigger seizures. I had this problem every month and my Epileptologist couldn't get
my seizures under control after taking 10 or more different meds. My Dr. did a DNA test on me to find out if I was drug resistant and sure enough I was a DNA test will also show what seizure med will help your daughter the best with the least side effects, all they have to do is take some blood and get some salvia from the inside of her mouth and that will go to the lab where they will be able to see her body chemistry and the amount of enzymes in her liver and by looking at this info. they can tell you what would be the best seizure med for her.

When I started having myoclonic seizures my Dr. did a sleep study on me and found out I was having seizures in my sleep 1-2 hrs. before I would may want to consider doing this with your daughter also along with an e.e.g. and e.k.g. all at the same time like they did with me.

Make sure your daughter stays away from diet soda or anything with nutra sweet in it because that can cause more electrical activity in the
brain and sometimes it can lead to seizures for some people. I also found out I was cell phone sensitive so if you notice your daughter
using a cell phone and then having seizures it could be she is cell phone sensitive like I am and it's all do to the frequency the cell phone uses.

Whatever you do be sure to keep track of your daughters seizures write down on a calendar what time the seizure happened and the type
of seizure she had, also have her write down when she starts and stops her monthly cycle that's when I always had seizures or if there was
a low pressure in the weather. Also lack of sleep and to much stress will trigger seizures or if a person is sick sometime that can trigger seizures.

I had brain surgery to reduce my seizures and it was a big help but what has helped me more than anything is using the medical marijuana
(cbd oil) and believe it or not taking 2 Tablespoons or apple cider vinegar with mother in it which is a good protein and bacteria. I was using
the vinegar to lose weight but then I noticed my seizures reduced to the lowest in my life and I found out that sometime the vinegar can help
some people.

You will find a lot of help and good friends here I've learned a lot even though I've had seizures for 48 yrs. I wish you and your daughter only the best of luck and May God Bless the Both of You!

Sue
 

Nakamova

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Hi Becka, welcome to CWE!

I hope your daughter’s seizures get controlled soon. It's promising that the Depakote worked for her before -- hopefully it will do so again -- but if not, there are a lot of other meds to try.

Best,
Nakamova
 

Becka

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Thank you both for the welcome. :)
I have been tracking her seizures since the tonic-clonic and they are always worse around her cycle. I had no idea that the weather could play a part in all of this. There is so much to learn especially from those that have dealt with it for many years. Thank you Sue for all your tips! I will try the apple cider vinegar this week.
 

Porkette

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Hi Becka,

I'm glad to have been able to help you I remember when I was young back in the early 1970's they didn't know as much as they do today
about epilepsy and what can trigger seizures and how to control it. If your daughter isn't allergic to nuts tell her to start eating a few nuts
right before her cycle and see if that helps her. I know it sounds crazy but nuts have progesterone oil in them and the progesterone helps
calm the nerves, this is why she may have more seizures around her cycle the progesterone level drops a little while the estrogen level increases
and its the estrogen that can sometimes trigger the seizure for a person.

What happens when there's a low pressure in the weather is the air gets heavier and that in turn can cause some people to have seizures
because it's effecting the hormones in the body. I found cold water therapy another good thing to do. I was in a medical study and was
told to take my temp right before a seizure and put a cold washcloth on my face and back of my neck 3 times a day at the same time
and any time I felt a seizure coming on. After the Dr. got all the data they found my temp went up a couple degrees before the seizure
but the cold water calmed the neurons down in my brain stopping a few seizures. Have your daughter do that if she wants to.

I wish you and your daughter the best of luck and May God Bless You Both,

Sue
 

Nakamova

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nuts have progesterone oil in them and the progesterone helps
calm the nerves, this is why she may have more seizures around her cycle the progesterone level drops a little while the estrogen level increases
and its the estrogen that can sometimes trigger the seizure for a person.
Sue's absolutely right, diet can potentially help if someone is susceptible to estrogen as a seizure trigger. But just to clarify: No foods actually contain progesterone -- it's the nutrients in some foods that can help stimulate progesterone levels in the body. With nuts, it's the zinc they contain that helps the body synthesize progesterone. You and your daughter could consult with a nutritionist about an anti-estrogenic diet, as well as one that includes nutrients that raise progesterone production.
 

Becka

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She is allergic (anaphylaxis) to peanuts, tree nuts, and shellfish. I'm reading on other foods that might help with progesterone production after you posted about the nuts. The doctor raised her Depakote to 850mg a day and it has helped for the most part. She still has the smaller myoclonics around her cycle though. Her VPA levels are above the therapeutic range so the doctor said the next step is to add a second medication. I was wondering if going on the pill might help?
Thanks again for all your help.
 

Porkette

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Hi Becka,

I'm sorry to hear that your daughter is allergic to nuts. One drug that has helped stop my myoclonic seizures is vimpat but
I don't know how that would mix in with Depakote. When I was taking Depakote my Dr. had my on mysoline (primidone) and
I still take it to this day the drug breaks down into phenobarbital so if your daughter does go on the drug she will be tired
until her body gets used to it. As I mentioned before have her Dr. do a DNA test on her and that will show the best med
for her with the least side effects. You may also want to give your daughter vitamin B12 once a day this vitamin helps calm
the nervous system I've taken it for yrs. I wish you and your daughter only the best of luck and May God Bless You Both!

Sue
 

Nakamova

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Hi Becka --

The Pill doesn’t seem to help with catamenial epilepsy, but injections of Depo-Provera have been shown to help especially if periods are irregular. It's not great to do it long-term, so there are other treatments worth discussing with her neurp, such as increasing med dose or adding a low-dose of a benzodiazepine (such as valium or ativan) at certain times of her cycle.. You can read more about treatments here:
 

Sabbo

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Hello & welcome. I also have simple & complex partial seizures. I had some grand mals in 1987--none since. I've also taken EVERY AED out there, but none seem to stop my seizures. I still average 1-3 breakthroughs/month.
I just saw my neurologist last week. I'm currently on Topiramate & Zonisamide--200mg of each twice a day. Now he has added 50 Vimpat 2x/day as a third medication, which is kind of useless in way, I feel. He wants to raise the dose eventually to replace one of the other AEDs with a higher dose of Vimpat. I know it probably won't work. Vimpat is what had been used to replace Dilantin in 2013.
 

Becka

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The doctor did give her Ativan but said to only use it if she started having the myoclonics in clusters. The last visit we talked about using Clonazepam instead of the Ativan because he said that could be taken everyday at a low dose. The Ativan works well and since they're in the same family I'm wondering why she can't just take the Ativan everyday during the cycle? I will talk to him about the DNA test.


I just saw my neurologist last week. I'm currently on Topiramate & Zonisamide--200mg of each twice a day. Now he has added 50 Vimpat 2x/day as a third medication, which is kind of useless in way, I feel. He wants to raise the dose eventually to replace one of the other AEDs with a higher dose of Vimpat. I know it probably won't work. Vimpat is what had been used to replace Dilantin in 2013.
Do you have a lot of side effects from three medications?
 

Sabbo

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I feel Topamax/Topiramate has the most annoying side effects. Those are "word loss" & short term memory issues. By word loss I mean knowing what you want to say, but being unable to say it. There have been times when I can literally see what I want to say in my mind, as if its written on a piece of paper, but my brain and mouth can't connect. I feel short term memory issues cause problems by allowing me to get distracted from what I'm doing if there's a lot to do.
The other annoying side effect of this medication is hair loss. I had already lost most of my hair (85% of it) thanks to an allergic reaction to Tegretol. It never grew back, though doctors said it would. When the doctor suggested using Rogaine, I said No Thanks. If any hair did grow back from its use, it would fall out when/if I stopped using Rogaine.
I've become so accustomed to the medications that they don't cause me to be drowsy at all. I will actually have nights when I'm extremely tired & have trouble sleeping.
I haven't experienced any side effects from Zonisamide or Vimpat.
 
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