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Old 08-10-2014, 05:13 PM
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Daughter newly diagnosed with epilepsy.

My daughter,20yrs old, had her first grand mal in June this year. She ended up having 4 in one day and the eeg showed activity in the temporal lobe. She started on Keppra but had really bad side effects and is now on Vimpat and Lamictal with the neurologist gradually building up the lamictal and then will do away with the Vimpat. It turns out that 2mo before the grand mal she was having mini seizures. Last month while on vacation, she had a grand mal in the middle of the night while sleeping and two hrs later went into several grand mals within in minutes of each other. After the last one her pupils stayed constricted and she was totally unresponsive for almost three hrs. This scared me to death and I had a few questions.
1. Is it unusual to have seizures that occur like this and you remain unresponsive for so long.
2. What can I do if she is having seizures in her sleep, is there some sort of an alert bracelet or something. {I wanted to use a baby monitor but she won't allow it because she is 20. She is really having a hard time with this and I am always afraid to leave her alone. but I can't stay up all night every night.}
3. Days before having her seizures she starts to lose her appetite, has a personality change, and has a lot of nausea. After the seizures she spends hours vomitting and at least 3 days with major appetite loss and nausea. She also breaks out in a rash. Has anyone experienced similar symptoms?
Quick note: after researching and watching her behavior I am pretty convinced that her disorder is called Catamenial Epilepsy and is related to hormonal imbalance. This helps in knowing the time frame of when seizures are most likely and will hopefully help in discovering nutritional and natural things to possibly minimize or get rid of the seizures.
Any information would be greatly appreciated.
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cawhitern (08-11-2014)
Old 08-10-2014, 05:51 PM
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specialist for your daughter

I have had seizures since I was 15. Luckily basically controlled but grand mal. Each Dr always said seizure disorder. Please if you do anything, get a second opinion. I do not know where you live but finally at the age of 32 I went to A huge University in Pa that had a epilepsy clinic. The Dr,s are epileptologist's.This is a neurologist that their specialty is epilepsy. You can type in the computer epileptologist in your area. All neurologists can treat seizures but find a specialist. I have been in the medical field for 30 years. Trust me ,it wasn't till I went to the specialist that I was totally controlled. The sooner she is controlled the better. You will feel better too. I have juvenile myoclonic epilepsy but it effects the whole brain not one lobe. Any questions feel free to ask.....
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cawhitern (08-11-2014)
Old 08-11-2014, 02:48 PM
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Hi jenshops and welcome to CWE,

My seizures started when I was 22 years old and oddly enough, they were Catamenial, too. But at that time, those in field of neurology knew nothing about it, despite what I was telling them. Mine started out as complex partial seizures and slowly turned into tonic clonic seizures as well. I could always tell because I would start having simple partial seizures a few days before + mood swings. But I never was nauseated. That and the rash could be from Lamictal? Have you mentioned that to the neurologist? Call him/her ASAP.

Mood swings info:

And like guitarlady mentioned, see if you could get your daughter in to see an epileptologist, a specialist in seizures. I've been seeing one for 20 years now because I have refractory E. Here is a website that can direct you:

Plus, get your daughter in to see an endocrinologist (a dr. specializing in hormonal disorders) as there could be other issues going on here due to a hormone imbalance.
"The Golden Rule is that there are no golden rules."
~George Bernard Shaw

Last edited by Cint; 08-11-2014 at 02:55 PM. Reason: added info
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cawhitern (08-11-2014)
Old 08-11-2014, 04:04 PM
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Welcome, adding to the great advice listed above is to pay special attention to the rash that your daughter is developing. I was on Lamictal and was allergic to it, which gave me a rash. The rash could be an indication that she is not doing well on the medication and it can be deadly.
There are monitors that you can purchase and place under her mattress pad, over her mattress that will go off should she have a tonic clonic in her sleep. Similar to a baby monitor, your receiver will alert you.
Since dehydration is often a seizure trigger, make sure your daughter remains as hydrated as possible while she is nauseous and vomiting.
Regarding natural remedies, there are lots of articles and suggestions regarding dietary information and seizure reduction. I eat a low glycemic index diet and I know others on here that have been successful using the modified atkins diet. My epileptologist has advised me to reduce my carb intake and that has helped me. Talk to her neurologist about it, I'm sure you can find a healthy balance.
Welcome to the forum and I wish you and her the best!
The ache for home lives in all of us, the safe place where we can go as we are and not be questioned.
- Maya Angelou
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cawhitern (08-11-2014)
Old 08-11-2014, 06:47 PM
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Great advice here and I agree with all of the above. Unfortunately, epilepsy is not a one-size-fits-all disorder and the same goes for it's treatment. Seeing a specialist is the best advice you'll get and is the right place to start. How scary for you as a mom! I wish you and your daughter the best. Please let us know how you're doing. Good luck.

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Old 08-11-2014, 07:31 PM
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I was diagnosed with epilepsy when I was 27, which was 11 years ago. At first when I was having them it was a good bit of tonic clonic seizures. Now it's partial (semi and complex) with a tonic conic about once a year. As far as I know I only have my seizures when I'm awake.

At first I was having several seizures a day, sometimes only hours apart. I hated it because my family pretty much didn't want to leave me alone. When I would take a shower someone would come in to the bathroom while I was in the shower and would stay in there until I got out. If someone went some were I either had to go with them or stay with someone else so I wouldn't be alone. When we went shopping I was surprised that they didn't put me on a child leash so I didn't wonder off.

I hated being treated like this because I was too old to be treated like it. It took me a while to realize that it was actually a good thing because if I'd have a seizure when no one was around. It also helps so you can let the dr know how many seizures you are having. When I have a seizure I usually don't know that I'm having one. So if there was no one there to see it going on I may tell the dr that I only had 2 during a month. When there is someone there to seizure happen then we know that I may be having 10 a month. This is a lot better because the dr knows what meds and dosages you should be on.

Even now that my seizures are somewhat under control, there are things that I don't like doing if I'm alone. I don't like cooking unless there is someone in the house. There have been a few times that I've had seizure's while cooking on the stove and don't even know what's going on. My husband is normally home when I cook and there have been quite a few times that he's smelled things burning and come into the kitchen and found me having a seizure. If he wasn't home then there's a chance that I might start a fire in the house.

It took a few years to get the medicine I was taken worked out. I am still having seizures but not as many, not as often and most of them aren't as bad. I've had seizure's that have lasted longer than 10 minutes. Usually my seizure, when I am totally blacked out and don't know what's going on, last's around 5 minutes. After that I start to come out of it but it might take me 10 minutes before I know where I am and I'm able to answer questions with the right answers.

It's nice to meet you!
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Old 08-12-2014, 09:07 AM
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I was dx'd with epilepsy 50 years ago when I was 2 years old.I never know if it might be a tonic clonic complex partial, simple partial, or absence I have like 5-6 types of seizure's.I'm refractory and when I shower I always make sure my DH is home and the door isn't locked.I can go 1-3 months seizure free or I can have 15 in a month I never know how it's going to go for me.I don't have auras an dI refuse to stay home wait for my next seizure.
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Old 08-14-2014, 06:35 AM
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Hi Jenshops,

Welcome to CWE. It was made by Bernard out of love for his wife Stacy. That love permeates throughout the whole forum.

I would be concerned about #3. That sounds like a very serious allergic reaction to a medicine. Tell your daughter's Neurologist's about these symptoms. I am not a doctor and only a doctor can tell you what the cause is. It might be serious.
It is how we live in the present that determines how we live in the future. - quote unknown
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