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    Newly diagnosed and need advice
    willowwoman77 posted:
    I was recently diagnosed with epilepsy at 56 years old. I also have MS and lupus, and diabetes. I was told the form of seizures I have are heridtary..only while I sleep and I don't lose consciousness...frontal lobe nocturnal..I just started trileptal. I took 150 mg last night. I woke up having anxiety attacks - I think - my arms were tingling, I felt weird..I expected the sleepiness, but not the ringing of the ears or the nonstop headache. I asked him why I needed this drug when I've apparently had this my entire life. I am not going to be able to live like quality of aren't supposed to exercise too much. What is the point? It was only discovered quite by accident that I was having these nighttime seizures. I also have extreme medication sensitivities. I am frustrated and angry. I will go ahead and take another pill tonight, but if it's as bad as it was today? He's getting a phone call and I'm not taking it. On top of everything else, my husband passed away 2 months ago. Any suggestions?
    dancer86442 responded:
    Hello willow,

    Thank You for joining our family. Please, give your system time to adjust to the medication. Try to eat small meals, 5-6 a day & eat nutritiously. That can help diminish & even, in some cases prevent side effects. It will take your system at least 4-6 weeks to adjust. You mite ask if he will let you start on a lower dose. Say 50 in the morn, 50 at nite?? And increase to 75 Am 75 Pm in a week or two.

    I would suggest you set up a baby monitor w/ Video to capture an 'episode'. Or a 'spy cam'.

    Why take your meds? Becuz, you could do harm to yourself & every seizure 'harms' your brain. Leaving small scars that can build up & lead to Worse seizure Types.

    Exercise? You can continue to exercise. I see No Problem w/ that, as long as you are OK w/ it. Some people, well, excess exercise can trigger seizures. Stay Hydrated & Have someone w/ you for a while. OK?

    Most Important: Start a Daily Journal! This is More than keeping track of seizures or med side effects. Read the Article Journals under our Tips for more Info.

    Your seizures may be Hereditary. But, there is, also, the possibility that one of your other Disorders can Trigger the Seizures. Diabetes was an Issue for My Sister. But, so was her Hormones. Ask your DR to do a Hormone Level Test on you, also. I know at 57, you are probably doing menopause, but Progesterone or lack of, can be an issue for Ladies, too.

    Keep us posted. Keep asking questions. Know I care & will be here for you. HUGS!

    Love Candi
    willowwoman77 replied to dancer86442's response:
    The pharmacy told me to stop immediately. My arms were numb, and so were my thighs and my chest felt strange. I have not heard back from the dr. yet. I did some digging and found out trileptal and tegretol are the worst drugs to give an MS patient because it can cause a pseudo exacerbation. It has been nearly a week since I took that one dose and I still don't feel well.
    dancer86442 replied to willowwoman77's response:
    Willow, the Pharmacy did rite. But, you Still need a treatment for your Epilepsy. Do you have the Option of seeking another Opinion? I don't think I would go Back to a Dr who prescribed the wrong meds. Sooo Many Drs/Neuros are Clueless about the meds they give us. At Least Pharmacists are Required to 'keep up to date'. Shoot, we can keep up to date, just doing our own Homework. Which I say "High Five' to you for Doing So!

    Maybe that 1 Pill affected your metabolism &/or irritated one of your other disorders? Have you considered a de-tox smoothie?

    Hope you are feeling Better Soon. Hugs!

    Love Candi
    willowwoman77 replied to dancer86442's response:
    I am waiting to hear from the dr. The problem is I have extreme medication sensitivities. About 25% of women have it. I may not be able to tolerate any type of seizure drug. He told me the type of epilepsy I have is inherited and I can remember my father yelling in his sleep, etc.Neither of my parents ever took a seizure drug. I feel like I am getting into a quality of life issue, here. I am going to be 57 tomorrow and do not want to take anything that is going to make it so I can not function. What good is it? I have never had a seizure during the day.
    dancer86442 replied to willowwoman77's response:

    I understand. A Lot of people have problems finding a med &/or 'alternative' treatment for their Epilepsy. Being 'sensitive' to meds makes it a bit tougher to find that med. I, too, have genetic Epilepsy. Although no DR has ever tested me to confirm this. But, w/ a Cousin, sister, mom, daughter (who was diagnosed hereditary) & now, possibly Brother, it is, in my mind, a Very good possibility. I had to go thru at least 5 meds, over a 10 yr span, to find one that not only controlled my seizures but, had the Least side effects. Same w/ my Daughter. She is very sensitive to meds, too. But, as I said in my previous post: It takes 4-6 weeks for our systems to adjust to any of our anti-epilepsy meds. Time & Patience are Required!

    Willow, my Sister used the same reasoning: Only at nite, so, why bother? She finally sought Help from a Homeopathic MD. Diet (modified atkins) & progesterone Stopped her seizures. After 57 yrs of 'nocturnal' seizures. She sought help Only becuz Epilepsy caused Severe Depression. Severe to the point where she was having suicidal thoughts every day. Another Important consideration. It has been proven that women w/ Epilepsy are severely lacking Vitamin D. 5000IU D3 was recommended for Sis & she was back to norm after 2000IU. My daughter is on Lyrica & went over a yr w/out any seizure activity.

    So, IF you do not want to go on meds then do some 'homework' about 'alternatives. There are several Diets you can try. You may need a nutritionist & Neuro to get started on a diet of your choice. Most Neuros do not suggest this. Yet, diets have been used for 100's of yrs. W/ Success for Some! There is, also, Meditation, yoga, chiropractic specialist, neurofeedback to consider.

    BTW: Ever hear of SUDEP? Sudden Death due to Epilepsy. Most times Unexplained Cause, but, most likely to happen when seizures are uncontrolled. Another Good Reason to find Control!

    Hope this helps! HUGS!

    Love Candi
    saxofone1 replied to willowwoman77's response:
    Hi Willow,

    Welcome to the family.

    I have read all the previous posts.

    Please be patient with the meds, and continue to do your research. Oh boy, if all the info available today was there for my mom back in '75 when I had my first.

    I too went through the med roller coaster ride. It is definitely not easy. Unfortunately, it is necessary for some of us.

    You hang in there. Keep asking questions, questions, and more questions.

    Please keep us posted whenever you can. Also, please feel free to share your concerns with us.

    Good luck on this new journey.

    willowwoman77 replied to saxofone1's response:
    Thanks all. I think I need to find a new neuro. His response was, Ok let's do dilantin..what about medication sensitivities does he not understand. As far as vitamin D..I run low having MS and the level has not been checked in quite a while, so I'll be doing that in 2 weeks. I do not have depression, other than normal grieving. My husband passed away 2 months ago. Every medication has the side effect of interfering with your thinking..the doc told me there is nothing he can give me that is NOT going to cause problems. That's encouraging. I was told there just may not be anything out there that I can take, or at the most, they will have to try to dose me as if I'm under 12. The whole thing is making me angry. He said if I hadn't have mentioned a strange night time occurrence, he would never have known. According to what he described, just about everyone I know has these night time seizures. I am very angry. I am alone. If I take a med that causes problems, then I'm in deep trouble. My entire family is totally against me taking any drugs, including my chiropractor son-in-law. To try drugs when I am so newly widowed, they all feel, is bound to feel because of being complicated by grieving.
    saxofone1 replied to willowwoman77's response:
    Good Morning, Willow,


    I send you my condolences, love, and prayers on the passing of your husband. The grieving period you'r going through might be affecting how you're handling the meds. Just give that some thought.

    I think you are on the right track in findind another neuro.

    Is there an Epilepsy Foundation in your area? They might be able to help you locate a new doctor.

    I feel that what you are looking for is the combo of meds that give you the fewest and least bothering side effects. As we have said before, that could take some time to discover.

    I was too stubborn to be angry. But your feelings are quite common. Many meds can catch our moods. Boy, I had one that made me act like Mr Hyde's twin. Got off of that one quick.

    When you locate a new doc, make sure you have a list of concerns to share with him. Start writing down questions and have those with you also.

    As far as Dilantin goes, that is a med many dentists don't like because of how it effects the gums. Tenderness, bleeding, swelling. I was on some 30 yrs ago. It was awful. This is just an alert for you not a discouragement. The gum issue does not happen with everyone.

    All meds are likely to cause some sort of discomfort so I hope you soon find one that you can tolerate Not being on meds and continuing to have seizures can be very damaging too.

    Continue to vent your anger, fears, or concerns with us. Holding those feelings in can also generate seizure activity.

    Don't give up.

    dancer86442 replied to willowwoman77's response:
    Hello Willow,

    Definitely get your D levels cheked! But, include D3 in your vitamin Regimen, anyway! Long Term Issues of D depletion can cause Depression.

    Wouldn't have known, if you hadn't described an 'episode'??? Well, DUHHHH! Of course Not. No one knows we have Epilepsy, Unless we tell them or they Witness an Episode!

    True, any medications we use Can affect us. But, that's true even about over-the-counter meds. And some people Report No Side effects, to tolerable side effects on meds they are on. So, it's a process of 'trial & error' till you find a med that controls w/ the Least side effects. I have been on my medications for over 20 yrs & still doing Good! Worst side effect from the get-go was excessive tiredness. I dealt w/ that by taking Naps! Now, I do have Ospteopenia (borderline osteoporosis) It is a Long Term Side Effect of my med. But, my DR had given me another med that depleted Calcium, too. I honestly believe it was the combo of these 2 meds that caused the Problem. My bones were Fine until the added med.

    You still have a choice of 'alternatives'. But, Most neuros & even Neuro Specialists (Epileptologist) won't recommend them. Pharma has their hand in their pockets. You could try a homeopathic MD. My Mom & Both Sisters Highly recommend this! One Sis & Mom are, also, on the band wagon for Chiropractic Specialists. Ask your son-in-law for a recommendation.

    Keep in mind: Drugs or 'alternatives' Are Your Choice! Do your 'homework' & go from there! Dilantin: He must be 'old school'! There are newer meds available w/out the side effects this med can cause. There was a post on FB today that evaluated the effectiveness of Most Seizure meds. A med called Nuerontin was shown to be the most effective. I tried Neurontin, just B4 they put me on Phenobarbital. It didn't work for me. BTW: If the med is the Rite one for you, only time will tell. Meds affect us Depending on our own systems ability to adjust to them. I have short term memory, (Hubby calls it 'selective' memory) but, other than that, it does Not interfere w/ my Thinking! And at My age, well, Memory Issues are to be expected. I have no problem remembering a Lot of the Info I have read & shared over the yrs. It's People, Places that I forget. Becuz, I don't see them on a regular basis.

    Want a New DR? Chek the site. Phylis has a list of Neuros/epileptologists from all over the States, recommended by other Seizure survivors.

    I know it will take Time to adjust to being a Widow. Plus, everyone's 'Grief period' is different. But, know we are here for you! HUGS!

    Love Candi
    willowwoman77 replied to dancer86442's response:
    I have heard of sudep...ya know what? I'd rather live to 70 and be able to function than 80 and be crippled by the drugs.. I've been researching, and what I actually have are myoclonic. I jerk, or my shoulder will shrug and it wakes me up and that's it.The extreme reaction I had to trileptal, I found out, lets me out of a lot of the meds. I'm going to call the epilepsy center tomorrow and make an appt. This guy just did a 20 min. eeg (as I fell asleep), did not do a 24 hour eeg, or sleep eeg..nada..nothing. I'm really not happy with him.
    dancer86442 replied to willowwoman77's response:
    Hi Willow,

    I fully understand. The process & Side effects of 'trial & error' meds can be a Nightmare! I experienced reactions to All the meds I took. If a med ain't rite for you, that is what happens. You do Not stay on the med. You stand up to your DR & insist on trying a new med or method! No matter what you experienced on Trileptal, not all meds will leave you 'cripppled'. Just the one's that your body will not adjust to. Then you Try Again. I just re-read your First post & I Think I know what happened. Your First Dose was to High. Drs Should start you on a Low dose & work up to Higher doses till you reach a 'therapeutic' dose. You could have started on 50 mg & increased the amount w/in a week or two.

    Willow, just keep in mind, if seizures are left Untreated, they can/will change & become worse. As for your EEG, That is just Normal Procedure. It took me over 30 yrs & probably Just as many Neuros, to get a Neuro to do a 72 hr portable EEG. They never even suggested a sleep eeg or video EGG. I think Phylis just did an article on this subject. DRS are Trying to cut back on what they consider 'unnecessary tests' due to expense. Well, in my case, they started doing That 30 yrs ago.

    Yes, you are doing Rite in seeking another Opinion! Keep asking questions! Keep looking for DRS who have Knowledge of both your Disorders. HUGS!
    Love Candi
    BlazingTiger responded:
    I am very sorry you lost your husband. I offer my condolences & prayers. Since you are having sensitivity. This Dr. Sounds like he is very insensitive to his patents needs. You wouldbe well served finding another Neuro. As far as your meds that gave you a reaction. There was something in it that made you react negatively. My experience is that if a med causes a severe possible life threatening symptoms that stop immediately. Really though you need to find a Dr. You are comfortable with. Med sensitivity makes things difficult but not impossible. Being untreated is the absolute worst thing. I am glad you are taking the appropriate steps. Just because you had a bad reaction to 1 doesn't mean that all meds are bad. It is just finding what works best. Candi it a very knowledgeable person & knows her stuff. Hopefully the new Dr will be more understanding to your needs

    willowwoman77 replied to BlazingTiger's response:
    I've been doing a lot of research. From what I'm finding, these inherited nocturnal seizures - if you have them for several years only at night, the odds are minute they will cross over to the daytime. I did make an appt with a woman dr who is an epilepsy specialist as well as specializing in women's health..seems like a good fit for me.

    What you all need to understand is that I'm being told either my mother or my father had this and neither of them were ever on anything, and mom lived to 80 and dad to 84. This guy also had me on an MS drug that can cause seizures. I am not opposed to taking a drug..I am opposed to taking anything that has a side effect of depression while I am so newly in the grieving process and already sad, or will affect my memory or thinking..If I have had this my entire life (since it's hereditary), we'll see. Like I said, one little test, no blood work and he's got me branded. NOBODY has ever seen me have a seizure. The most that anyone saw was (I was on that MS drug) when I was laying in bed, drifting off to sleep and my arm raised and husband was like, "What the heck was that?" I figured it was an MS spasm. That was back in early 2008. But, I've always jolted, like dreaming I'm falling..not every night, but frequently, as far back as i can remember.
    dancer86442 replied to willowwoman77's response:
    Hi Willow,

    I believe I mentioned this B4: Depression can be caused by Epilepsy, too! It isn't just our Meds! My Sister wasn't on any medication when it hit her. And she has lived w/ seizures & No Treatments, since Infancy!

    I am Glad you have a New DR. Let us know what you think of her after your appt. I do Hope she is Better than that last DR & then some! Be sure to tell her about the 'jolts' you have experienced. And any other Odd Moments over the yrs that you can think of. I Do understand Why you are Reluctant to be on meds! So, Talk to her about 'alternatives' for seizure control. The Atkins Diet, Modified Atkins or GARD. All proven to be successful w/ Epilepsy control for some. Also, ask her about PNES! Psuedo/Psychogenic non-epileptic Seizure. Considering the Trauma of losing your Hubby, this is a Good Possibility for Seizure Activity. PTSD (post traumatic stress disorder) is a Very Likely cause of seizure activity. And you Can have Both. Epilepsy & PNES. For more Info on PNES visit

    As for Nocturnal Seizures crossing over to Daytime. Yes, the 'odds' are Good that that won't occur. But, never say Never. Becuz, they Did in my case!

    In the meantime: Please, find a baby monitor or spy cam for your bedroom! Hopefully, it will catch one of your 'jolts'.

    Hugs! Love Candi

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