lots of question

[valentineee]

My daughter fell from her top bunk in college in 2001 and landed smack on the top of her head. She now has a seizure disorder, thought to be trauma induced, but it is possible that she had her very first seizure and then fell from the top bunk. She was bleeding from her nose due to the shear force of her brain impacting her cranium at the time of the fall. This is how her seizure history started.

She was put on Depakote, and later on Depakote extended release formula. She hated being on Depakote due to lethargy, lack of energy, memory problems and inability to experience full range of emotions. She kept telling her doctors that she felt over medicated, but they insisted she stay on the DepakoteER, 1000mg twice a day. She is allergic to Dilantin.

Last October, in order to comply with the demanding pressures and hours of her employment, she weened herself off of Depakote over a three month period. She remained seizure free without medicine for seven months after totally ceasing medication. This week she had a grand mal seizure at 6am. The emergency room loaded her up on Depakote and released her with instructions to take 500mg.

She is waiting to see a neurologist at Northwestern Memorial Hospital, Michael Macken, but can not get in to see him until the end of the month. Basically, she is not being medically supervised until she sees him. This makes us a nervous wreck.

She still wants to go to law school. She is very depressed right now, that her experiment failed.

My questions:
1. Do all siezure medications cause the lethargy and cognitive problems that my daughter experiences?
2. Do you think that seven seizure free months without medication provides any sort of hope for her?
3. She needs a medical bracelet; one that she can wear in a professional environment. She is allergic to metals other than 14K gold. She is petitely framed and most bracelets would look huge and clanking on her wrist. Do you know of anyone that sells petite women's 14k gold ID bracelets? Do you know of any jewelers in the Chicago area where she could try on bracelets?
4. Do you know of any good doctors in the Chicago area for seizure disorders that would be open to other options than drugging her with Depakote?
5. You all are in my prayers. Life can be so difficult with epilipsy. I see that many of you have additional health hurdles and epilipsy is only one issue that you have to contend with. I feel for you all, and pray that science delivers. Please pray for my daughter, to those of you who pray. She is 25, beautiful and kind. She is extremely intellegent and hopes to do more with life than sleep twelve hours a day.

 

[Wally]

I saw some Medic Alert Keychains at Walgreens last week. They had one for Epilepsy. I carry a Medic Alert card in my wallet with the Caduceus
Seal plainly in view when my wallet is opened. My seizures have only been nocturnal and are under control so far, so I am comfortable with just a card.

Has she been able to identify any triggers? There are lots of medications available. If she can just be patient and stay in good spirits.......

Maybe she would find this fine womans story interesting........

http://www.epilepsyfoundation.org/epilepsylegal/jeannecarpenter.cfm

 

[RobinN]

I wish there was somewhere you could post: DO NOT MEDICATE per my instructions!
The last time my daughter went to the ER they tried to PUSH a medication on her. Even though I said no, they got the medication with the glass of water and still tried to force me to give it to her. This is outright insanity.

If your daughter wants to be med free it should be her right to do so.
So far my daughter is doing quite well without medication. Certainly less side effects than when she was being drugged up with little control. It is knowing what to say in these types of situations, and it is such a "dance" with authorities and keeping your cool so that you don't come across as a lunatic parent.

Your questions in my opinion:
#1. Yes
#2. For me a month free from seizures gives me hope. I would certainly see this as a good sign, but obviously she is still needing to find what is triggering her episodes.
#3. I like this company http://www.laurenshope.com/
but don't count on EMTs actually reading it.
#4. I have no connections to medical help in Chicago, but conventional medicine will most likely not be looking elsewhere. I had to teach myself via Google University. I have learned about nutritional options (and not just the Ketogenic Diet), I have learned about vitamin and minerals that support brain health, and I have learned about Neurofeedback that can stabilize brain function even if there has been an injury. My daughters greatest control has been brought about by neurofeedback.
Most all of the information that we all have researched, has been brought back to CWE and listed in the Library, or you can do a search.
#5. My daughter is 16 and she has been dealing with this for the past two years. Starting HS by having multiple Tonic Clonic seizures in class or in the Quad has been quite a life changer.

BTW... Welcome to CWE. I am glad that you have decided to join us. I wish your daughter well, and tell her that we would love to have her join us as well if she is feeling up to it.

*** I was wondering if you have an MRI after the injury. Also does the EEG show abnormal brain activity?
What about neck injury. Have you ever taken her to a chiropractor? Sometimes, this can be helpful (and sometimes not).

 

[tinasmom]

You can purchase all different kinds of medical bracelets at stickyjewelry.com. You can acutally pick the type of band you want and they are very reasonable. They have some real nice leather bands. They also have some fun ones for kids.

 

[valentineee]

At some point she had an MRI. We were told it was normal. Most recent ER visit produced negative CT results, for whatever that's worth. Her EEG of more than six months ago was inconclusive or nondiagnostic; this is when the doctor decided to simply keep her drugged. She then took things into her own hands without medical supervision. She had an EEG this past week, but the results will not be available to her until she meets with Michael Macken at the end of the month. She waited months to get this appointment. I hope he is good. He comes from Cleveland Clinic, and I noticed that they have contributed to some alternative therapy research. We can only hope he leads us to other alternatives. I've also read that MDs cand become indignant when questioned about alternative therapies. So we are prepared of the possibility of walking out of his office with a script.

The doctors were amazed that she did not break her neck. Her injury was the equivalant of diving into an empty pool. Sometimes I feel greedy, and think that we should just be grateful that she is not a quadrapalegic.

i used to wrok for a chiropractor. She does not seem to have any chronic sort of spinal misalignments causing her pain. I don't have enough confidence in the chiropractors I know to suggest they start manipulating her. If I knew of a chiropractor I completelytrusted, I would happily steer her in that direction.

Thanks again.
Elaine

 

[Georgiagirl88]

Hi there!
Hope your daughter is doing well. I had a concussion when I was in High school after falling and hit my head pretty bad. They aren't sure if that is what caused my seizures...like your Daughters. I actually got my bracelet on Ebay believe it or not. Very reasonable compared to American medical ID..worth a check. And mine actally usually stays backwards, so it doesn't look bad at all. I am so used to it, I do not mind or notice it at all. The gentleman that made it also was able to engrave sleep apnea for mine as well. Wish I had more answers, but I am still learning myself. Best wishes for your daughter. I am doing really well on Lamictal.. welcome to the group! It is a wonderful, supportive bunch of folks!

Michelle : )

 

[valentineee]

thanks

I am so happy that I ran into this group. Your support means so much and I am very grateful.

Our situation has left us feeling isolated, wandering around in a deep abyss of unknown circumstances. No one seems to understand, or care, or maybe they don't know what to say other than, "thank god she's okay." I want to say, "Aren't you hearing me? She is NOT okay!!!"

She lost forty pounds without dieting while she was off the Depakote. Interestingly, she gained five back just prior to her latest seizure. I don't know if this is related at all. Since she has been on the Depakote for nearly a week now, she eats tons of food all the time, in between sleeping.

It is such a relief to say things as those stated above without being judged. Her friends and coworkers thought she had an eating disorder and anorexia when she dropped all that weight after discontinuing Depakote.

I worry for her, how her being drugged is going to affect her work life. That would be another devastating blow to her if she lost her job due to her decreased cognative abilities.

Thank you so much for understanding. It is sorely needed. Thank you allowing me to be honest and put her out in the open. It provides courage to move forward, accept things, and to be hopeful for her future.

Thanks,
Elaine

 

[Georgiagirl88]

Hi Elaine..again,

You absolutely came to the best group in the world! You can expect so much support and so much knowledgeable help from everyone..and it is a great place to just sit back and relax,vent..whatever. Plus..some fun here and there. Your daughter would probably love it as well..when she is ready. There are people all different ages here. It is hard to tell her not to feel depressed,(because that can just come with epilepsy and all it entails) but let her know there is alot of help and support and I truly feel better and have a better outlook just having some answers and tools to deal with it. I have had mine for yrs. but only diagnosed this past Fall. Mine are almost always Nocturnal complex partial ones. And they are left temporal lobe. This was all very confusing to me at first..but I really learned so much here. I also found some excellent books as well.Tell her not to give up on her hopes and dreams!!! She is blessed to have you for a Mom!!

Michelle : )

 

[Wally]

almost always Nocturnal complex partial ones. And they are left temporal lobe.
Michelle : )

Did they determine the location from an EEG? Did you have a seizure during the test?

 

[Georgiagirl88]

Hey Wally,

Were you asking me if they did an eeg?? I wasn't sure. If so..yes they did. My first eeg just showed slowing activity in the left temp. lobe, but the 2nd one showed seizure activity. They were both sleep deprived ones. Interestingly, they never showed up during my sleep studies. I also have sleep apnea...but my "spells" as I started calling them were random and came in clusters of a few a week or more and then I maybe wouldn't have them for a few more weeks. I had them for a number of yrs. and they were always diagnosed as "anxiety'. I knew that wasn't right. Just curious..do you get nocturnal seizures? Not as many people do. The epileptologist and Neurologists said they are more rare.
If you do..I would love to hear what yours are like. Hard to find many people to discuss these kinds.

Take care!
Michelle

 

[Bernard]

Hi Valentinee, welcome to the forum. :hello:

... She hated being on Depakote due to lethargy, lack of energy, memory problems and inability to experience full range of emotions.

My wife had a similar experience with Depakote. It turned her into a zombie.

She remained seizure free without medicine for seven months after totally ceasing medication.

Did you have any EEGs done during this period to ensure that she wasn't having epileptiform activity in the brain. Has she ever had any simple partial seizures? The reason I ask is because some times, people aren't aware that there are many different types of seizures and some of them are not visible to observers.

Per your questions, my opinions:

#1) Yes, but everyone reacts to/tolerates drugs differently. What causes lethargy and cognitive problems for one person might be well tolerated for another.

#2) Yes, that is a good sign IMO. Just be sure you aren't fooling yourself if the 7 months "seizure free" was only measured by whether or not she had a tonic clonic/grand mal. Even so, I'm betting that EEG neurofeedback could really help her.

#3) No opinion

#4) No

#5) Thanks!

 

[skillefer]

Hi Elaine! Welcome to CWE. Like your daughter, my first seizure occurred after a head injury. The doctors say I have "an idiopathic seizure disorder of unknown origin". My head injury occurred when I was about 3. I was on phenobarb until 5, and then seizure and med free till 13. Then I had some tonic clonics (grand mals) and was put on phenobarb and depakote. Like your daughter, I gained a lot of weight. Also, I was feeling tired alot. And, I could sleep anywhere. (That kinda comes in handy when traveling...) I got through college and grad school, and was seizure free for about 9 years. I was taken off the depakote, and started seizing again. Now, I'm supplementing my phenobarb with vitamins and it seems to be working. This is a great site for information and support. I really suggest your daughter come check us out. And, there are some things (like vitamins) that she could start doing now. Make sure she's honest with her doctor. And it helps when discussing alternative treatments, if you can walk in to the appt. prepared. Do the research. Print out copies for the doc. You may be surprised. Her doc may be more open to alternatives than you think. Good luck. And again, welcome to CWE.