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I really urge you to seek a second opinion about these medications. If you have concerns about these medications then I highly suggest that you express these concerns to your doctor and seek a second opinion. You are your greatest advocate when it comes to your health and I commend you for doing your research.
My thoughts are with you.
Please keep us posted.View Thread



It must be extremely hard to watch your son go through this.
It is even more frustrating when your son has been admitted 3 times to the hospital and you are seeking medical and professional help, but no solutions have been suggested.
Have you spoken to a specialist about your son's symptoms?
If you check out Vimpat, Depakote and Trileptal in the WebMD Drugs & Supplements center, there are hundreds of user reviews. You might find some who have similar side effects who have found a solution.
Most importantly, know that you and your family are NOT alone in this.
Please keep us updated.View Thread


Living with epilepsy is a struggle only known by the person who is living with the disorder. For some living with epilepsy, their struggle doesn't just end there. A Norwegian study found compelling evidence that kids with epilepsy may be at risk for other health conditions.
Click on the link below to learn more:
http://www.webmd.com/epilepsy/news/20160801/4-out-of-5-kids-with-epilepsy-have-other-health-problems-studyView Thread



Yes, there is a co-relation. What she has is known as Catamenial Seizures. You can use our Search This Community Tool up top on the rite next to the Post Now, to see more Info/conversations on this Topic. There is more info in Helpful Resources, too.

Her doctor may want to increase her meds. She has alternatives, also. My Sister has been seizure free for over 7 yrs. Thanks to Progesterone. Her seizures were diagnosed & treated by a Homeopathic MD AKA 'naturalist'. She is, also, on the Mediterranean Diet, which may be Helping, as nutrition is an important part of control, too. Corrective Chiropractors are recommended, too. The treatment involves Upper Cervical alignment. There is lots of Info on Search Engines.
Please, encourage your daughter to keep a Daily Journal. More Info as to what to include in our Helpful Tips.




Hugs & Please keep in touch. I would love to hear any progress or answer any other questions you may have.
Love CandiView Thread



Thank You for your reply.





I noted that WebMD may be discontinuing some groups. This group and others' have gone downhill since Social media sites started forming groups & dispensing info. Save conversations & Profile on Phone? Not me! Clik my ID or pic to read my Profile.


Love CandiView Thread






I've had complex partial ep since the spring of '75. I have often found that a simply acitivity such as walking, meditation, doing puzzles,etc has often eased stress for me. Listening to jazz or classical music has also put me in a relaxed state.
Somewhere in the 70s, I was put on Mysoline for a short time. I say "short" because it caused me to have mood swings. One moment I was peaceful then w/o warning the "Mr Hyde" side showed up. Some meds are known to be able to cause mood swings. Please discuss this, if you haven't already, with his doctor. Do you see a common time when this agitation occurs i.e when wakening, before his 1st daily dosage, nighttime, foods, etc.
I hope someone who is more familiar with the meds and sleep apnea answers you soon. Oh yeah, discuss this concern with the pharmacist. Hang in there.
angie
Has your husband's med level been tested recently?View Thread



Thank you!View Thread





Your questions are 'normal' for someone changing meds. But, my answer is always the same. You won't know How the medication will afect You, personally, unless you try it. What others' experience? Clik on the 'Drug/Supplement Tab up top. Use the Search Too for your medications. Clik on Side effects & then read more. Under the basic description are some blue highlighted words that will take you to another page w/ a list of Everything someone or several someones, at one point, experienced. But, in my book...All side effects are..Is what we & our Drs watch for. Not what will necessarily happen. Please, read our journal info in Helpful Tips on the rite. To insure your meds metabolize properly & work more efficiently, you should eat a very healthy diet, too..

My Daughter has been on both those meds. Neither worked for her. I do Hope whichever you choose will work for You! Keep in mind that IF that med is Intolerable or doesn't work w/in 2/6 weeks, you can always try the other med, next.

Personally, I went thru at least 5 med changes in a 10 yr period. My Daughter has been thru More in the same amount of time.


Never Give Up! Don't let Epilepsy Rule! Hugs
Love CandiView Thread

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May Allah make it easy for you and your kid.
My father spent almost all his life with this sort of disease until finally it was cured 100 % so much so that he had not more urges to stare at sun with rhythmic movement of his hand infront of his eyes.
He suffered since his childhood and my grand father did all he could and also my father consulted many doctors around the globe but it went in vain, until one day a doctor who happened to visit our house to check up my very ill grand mother inquired my father why he looked so tired (as probably that day my father had suffered with a seizure) and thus my father explained all without any hope for getting cured and guess what the doctor prescribed him a medicine called "Epival".
In the beginning he used to take 3 or 2 dosages of 750 mg in a day and later the potency was reduced to 500 mg and later to 250 mg and then once per day and eventually no more of this medicine was needed.
Why I signed in to web MD today is not to suggest you a medicine but to tell you that my father lived an excellent life and sunflower syndrome did not effect him in any other way except that it was like a leisure time for him (like someone playing a game) but he had realized that this is something to be done in free time and in a safe place and not while crossing a road. BUT yes he could not live without it and he had to satisfy his compelling urge once a while.
Still today when I think of his seizures and Sunflower syndrome I feel for my father and I am certain that being a Muslim he would be rewarded on the day of judgement for the patience he exhibited towards his epileptic disease.
May all those who are suffering from this disease or any other disease may get well.View Thread






I answered your post 2 days ago, but, noted today, that it was Gone.




Did you know over 65& of people w/ seizure disorders have 'no known cause' ? As for medical terms...Yes, gran mals are termed tonic-clonic's now. And Epilepsy is now considered a Seizure Disorder. Visit the EFA.com or epilepsy.com to learn more. Although most docs & people w/ Epilepsy still use the Old Terms.

http://epilepsytalk.com/2014/07/18/epilepsy-glossary-100-terms-defined/
Hope this helps. Know I care. Hugs!
Love CandiView Thread



Question...Are you on any anti-epilepsy drug?
Problem...Seizures don't discriminate as to When or how often they will occur. Minutes, hrs, days, weeks, yrs later.
But, Researcher says if you are seizure free for 2 yrs, you Can ask your doc to wean you off meds for a trial period. Doc may want to runn tests, once again, b4 doing so. My niece was born w/ a traumatic head blow. She suffered a concussion when her Mom fell across a bed. She was diagnosed a week or 2 later & prescribed Phenobarbital. She was weaned off Phenobarbital when she had been seizure free for 6 mths. So Far, she has had no more seizures. As for me, I, too, had a traumatic head blow. Clik on my ID to read my Journey. An update....Last week I was diagnosed w/ Another seizure Type. Complex Partials. But, my doc did not increase my meds, so, I am just taking it one day at a time. I keep a Journal. Please, read Journal info in Helpful Tips. There are apps on some cell phones that make journals easier.

Plus, did you know we now have a SmartWatch that can detect signs of a seizure?
I wish I Could say you are Healed. But, seriously, only Time will tell! I, personally, can't even miss a med. or 2 w/out a seizure. But, my seizures are genetic, also.
If you have a Facebook acct. there are Traumatic Brain Injury Pages & support groups. I hope this Helps. I hope you respond to let me know if it did. Hugs Know I Care.
Love from Candi & familyView Thread


















This Issue hasn't been discussed in this group. But, I googled to find more Info. Yes, it has happened to others'. From what I read I certainly feel for your Hubby. Pain & memory loss are common factors following a seizure. A Supervised Epsom Salt bath may help w/ the pain. The memory Loss, nothing can be done. As his caretaker, you need to start a Journal. Please read the Journal info in Helpful Tips.
Here is a link for an article about this. http://www.columbia-lyme.org/patients/ld_lyme_symptoms.html Use your Google or Yahoo Search Engine to learn even more. I would use the Term Treatments in your Search, also.
I know it's hard to watch someone have a seizure. Or at least, I have been told that by Lots of people. My Hubby is my Caretaker.

Hopefully, your Hubby's seizures will go away during his Lyme Disease Treatment. I do hope you will keep us posted on his Progress. Hugs
Love CandiView Thread






A new report from the Epilepsy Foundation claims it can Help. According to their article...it can decrease seizure activity up to 36%. But, I have noted in other groups & reports that it Has eliminated seizures in some.
If he has been on those meds more than 6 weeks & is still having seizures, then your son/daughter need to go back to his Neuro & ask about trying another med/treatment. Or go for a Second Opinion! Preferably to a Seizure Specialist/Epileptologist. Helpful Hints has an article that may help you locate one in your area. Also, look for Journals & have your Family start one Today. It can Help pinpoint Triggers. We All have Triggers. And they vary from one person to the next.
Knowledge Is Power. So, please, continue to Learn all you can about All aspects of his disorders. If you have more questions or just need someone to talk to, I will be here for you. Hugs
Love Candi
P.S. Can you tell me what type of seizures your grandson is experiencing?View Thread




I can say I have had similar experiences, more than once. I asked my Doctor about abdominal seizures. Yes, these are Real! Usually triggered by foods. My trigger was sour cream. I use it in a home made dip & have learned...Everything in moderation. Or not at All!
Please, read the Journal Info we have posted in Helpful Tips. Hopefully, you & your wife can figure out what triggered her seizure.
Love CandiView Thread





Love CandiView Thread

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It is always wise to seek a second opinion when it comes to seizzure disoreders or Possible seizure disorders. But, to tel you the truth, I think the Doc is doing Right! I know concussions can lead to Seizure disorders. TBI or Traumatic Brain Injury can be a cause of seizure disorders. Problem: seizures can take up to a moment to Yrs to appear, after the TBI.
I believe the Dr has placed her on medication as a Preventive. Preventing further seizures from happening. Which is Good! Becuz, after 2 or more, the brain develops a 'Habit' At least this is the way I interpret all the Info out there.
As to the medication. I know it's awful! Especially when you read about 'possible' side effects of the meds. But, keep in mind not everyone experiences the Same. Eating Nutritiously helps metabolize the med so it works more efficiently &&&& can diminish or eliminate some side effects.
Tip: Please read the Journal Info in our Helpful Tips on the rite. You need to start one ASAP.
OK Doc wants to take 1-2 yrs b4 weaning her off med. This is a Rare DR. And sounds to me like a Well Informed Dr. But, yuo may be able to convince him, if there is no further seizure activity, to re-run the portable EEG w/in 6 mths. And Maybe, the doc will take your daughter off meds then. My Great Niece developed seizures after birth. She was on Phenobarbital for 6 mths & my daughter & Niece convinced the doc to do so.
Hope this Helps.
Love CandiView Thread



Thank You for your Reply.


I do hope you see a neuro soon. So, that you can get answers about your meds. Plus, keep in mind a neuro has to sign papers stating you are 'fit to drive' which is then submitted by you to the DMV office. Yes, I know how difficult Not Driving can be. But, I am Wise enough to know the Danger I place Myself & others' in, by doing so. So, Good Luck! BTW: Not sure if this available in your area, but, check out Uber (a place to find 'share rides') or check out/place an ad on Craig's List for 'share rides'.
I do hope you will keep us posted. And Keep Educating yourself about Epilepsy & all it's aspects. It may not seem important, now. But, it could be very useful to know in the future. And may just get you out of 'denial' mode. Hugs
Love CandiView Thread



Headaches have been a part of my life since my 1st med in '75. I usually experienced the worst ones following a seizure. I have always been hesitant to take aspirins or whatever for them because of a concern for med interference. Over time the headaches simply have become an annoyance to me. Like that cuticle that simply keeps showing up.
Please be careful about changing those meds w/o doctor approval. As Candi said, levels are taken for a reason. Dilantin and Phenobarbital were a part of my 70s med regime. Effective for a while but later changes were necessary. Taking Dilantin, please be aware of the dental issues such as swollen gums and heavier plaque.
Hope you find something to give some relief to your headaches.
angieView Thread

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