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[Bobbi]

I have been on this forum for a short time - first seizure hospitalized in Dec for Status epilepticus (SE). Was not told this at the hospital - had to figure it out myself and read my medical report from hospital. Did a follow up appointment with a specialist and since I have been having side effects from Keppra (1000 mg 2x/day) I asked if I can change. He wanted an EEG first to determine which meds best for me. I have a follow up appointment with Dr. M early April. The RN who did the EEG told me I had 20 seizures in 20 minutes. They lasted 1 maybe 2 seconds each. So I was told the meds are not working good enough. Again all new to me. I am seeing another doctor Wednesday Dr. R. He preordered blood tests (Keppra level, Vit D, CBC w/differentials & platelets, Lipid panel, comprehensive metabolic panel). Should have results before appointment. So I'm thinking that I will see what both docs say before I change the medications. Another doctor who I originally saw in the hospital was willing to change my med over the phone without seeing me or any tests results and without a plan to wean off of the keppra. I hope I make the right decisions and I will read through the forum (not enough time in the day) but any comments on my situation are welcomed. I was never diagnosed as epileptic but I guess I am after the last EEG. Was hoping it was a one time event. Not driving or enjoying my vino stinks.
Thanks

 

[jyearta]

Hi,

You have come to the right place.

There is so much information here, that helped me.

The people here are understanding, will to be helpful, or just listen if you need to rant.

Are keeping a diary? This will help you and your Dr.
There a many trigger such as lack of sleep, infection, antobic. some foods, stress and more.

 

[Bobbi]

I have started a diary but it's more like notes in my planner and I downloaded an app for seizures but I haven't really felt any seizures yet but I do keep track of other health issues in that app. I have problems with my throat also where I choke on my uvula and the doctor says it's from being intubated. One doctor I saw said food has nothing to do with it. I felt like giving him a book I read but I have to realize doctors sometimes don't have open mind.

 

[jyearta]

Everyone reacts diff. to the diff. meds.

If you are not happen with your current meds. ask your Dr. about changing.

It a matter of trial and error to find the meds. that gives you best seizure control and at the same time have a quality of life.

 

[Bobbi]

Well today we discovered (my husband & I) that I have genetic epilepsy FROM Dr. R. He explained other meds but no change in meds yet, but next month I see Dr. M. So tired, watching american idol on DVD but my pillow is calling. Goodnight

 

[jyearta]

Are you taking any Vitamins. My B-12 was very low, ask your Dr. to run levels. Anti-seizures meds. seem to deplete these in our system. Now having said that Imhave to have my compounded, over the counter Vit. B of any type, Vit.D, calcium and Folic acid causes seizures.

I have had several Neur. who didn't believe me, but several in this forum have the same reactions. You might not, we all react diff. to diff. meds.

 

[Bobbi]

I am taking D3 & B12 now. Looking into a good multivitamin. My white & red blood cells have decreased since December. Will keep on top of this. This is too much work!thanks

 

[jyearta]

I glad you are already aware of this. I didn't know my B-12 level got so low I had the hardest time getting it up there where I could fuction.

 

[Bobbi]

I also stopped eating meats last sept so I started taking B12 but didn't know about the meds until reading more about it.

 

[Nakamova]

Hi Bobbi, welcome!

You are right to seek out a neurologist that you are comfortable with and that you feel you can trust. It can make a huge difference. Unfortunately, many of us here at CWE have had neurologists who were incompetent or indifferent or both.

With the genetic diagnosis, it sounds like you have epilepsy in your family? Interesting, perhaps that gives you a sense of relief...

There are many medications out there for treating seizures. When you evaluate a med's efficacy, it's always a matter of weighing the benefits (seizure control) against the negatives (side effects). Each person has a different threshold for gauging these things. the important thing is to pay close attention to how a med makes you feel, and to get in touch with the neuro if the med becomes problematic in any way.

 

[Bobbi]

Thank you Nakamova. That is My fear.I see Dr.M April 17 so I have time to research till then. Dr. R who I saw weds emailed me yesterday. The details in the email are so medically technical that I have to look up terminology as I go to understand it all. But I am learning. Still strange that I didn't learn of this till now at 57 years.maybe parents concealed young episodes from me.
Enjoy your day! Bobbi

 

[arnie]

Hi Bobbi, and welcome!

Nakamova said everything I would have said, so I will simply second it all. My epilepsy is probably also a genetic thing, since in over 30 years (after my first witnessed tonic-clonic sz) there has never been any cause found. My father had a few years in his life when he was having seizure issues and one of my maternal uncles had epilepsy, too. In addition, my eldest daughter was diagnosed about 8 years ago after a tc seizure (she was 24 at the time) and has been on meds ever since. It can run in families, I guess.

You commented that your parents may have concealed your episodes from you. In my case it was only in retrospect that we decided that i had probably having been having seizures for a lot of my life. My first tonic-clonic szs happened when I was asleep, and until I got married there was no one to have seen them. My parents did say that there had been mornings when my bed was really torn up and that i was extra tired. I also, again in retrospect, realize that I probably had partial seizures a lot, but they would not have been terribly noticeable to others, and I just thought that was how life sometimes was.

As for meds, I was on Dilantin for years, then Lamictal. I've had short trials of Keppra and Zonegran and, very recently, Trileptal but all of them had unacceptable side-effects so I told my neuro I would not continue taking them. The Lamictal gives me as much sz control as I will probably ever get and has very minimal side-effects. As Nakamova said, it's a balancing act.

It was interesting that a doctor said an EEG would determine what the best med would be for you. As far as I know, there is very little an EEG can do to predict how a certain AED will affect you as an individual, both in sz control and side-effects.

Best of luck and keep in touch with us here!

 

[Bobbi]

I think the doctor Wanted to see the scans to determine if it was genetic. The second doctor said that they can determine The genetic diagnosis based on the pattern of the seizures on the EEG. He explained that different meds handle different types of seizures but if you take a medication that is designed for Little seizures then they may not control the big seizures. Therefore you take more than one medication. I'm learning something every day. Thanks for your input. It's nice to see other people's experiences.

 

[arnie]

I hope they can tell you something definitive. I have never even had an abnormal EEG, and my various brain scans have not shown any cause for my epilepsy either. Certain meds are theoretically do a better job with certain types of seizures, some meds are supposed to be monotherapies while others might be better in conjunction, but, in my educated layman's opinion, I think that a lot of it is a crap shoot and it really boils down to what eventually works for your individual seizures and what you can tolerate.

As for the vino, there is probably no reason that you will not be able to enjoy it again after you've gotten stabilized on your meds. I have found over the years (decades!) that alcohol consumption has never been correlated with an increase or decrease in my sz activity. There never really has been much of a correlation with anything, even meds, to a point. They mostly come and go as they please. C'est la vie!

 

[Bobbi]

Just a quick update....my daughter 21 years old had a seizure about a week ago. Was admitted to the ER & now has done tests. Will follow up w primary doc & neurologist. I go to another neurologist tomorrow. Both my daughter & I are in denial & need prayer. Will update again soon as I am so tired. Goodnight

 

[Nakamova]

Hi Bobbi, thanks for the update. So sorry to hear about your daughter. I hope things get better for both of you. Sending good wishes your way.

 

[Bobbi]

I'm scheduled to go in today for a 24 hour EEG. waiting for call from hospital when a bed opens. Never a dull moment. Just finished reading Never Get Sick Again by Raymond Francis. Very informative read. General health not just epilepsy.

 

[Bobbi]

Well it's been awhile since I posted here last but the 24 hour EEG basically told us that I have more activity at night while asleep. They told me I actually talk through the mini seizures that I have. I have no idea that I am having them. They increased my Levetiracetam ER to 3500 mg/day (1500 am 2000 pm) but I chose to stick with the 1500 2x/day. The manufacturer of the meds doesn't recommend more than 3000 which I just read the other day. Last month I picked up a new refill and I reacted to the generic by being more tired from day one! Turned out that the pill's inactive ingredients included sodium lauryl sulfate! I refilled the prescription and I am back to being less tired. I tried mixing them (am & pm) and that didn't work either. Has anyone ever had this problem with different generic manufacturers? I visit the Neurologist on Monday. I am also going to see an orthomolecular doctor in December. I can't wait! I had seen him many years ago so I know what to expect so it will be exciting to see what he says! I have an idea that my food allergies could be part of this for me but I am not sure if I will ever know. I have stopped dairy again and I miss it only a little. I read a lot of books now on nutrition and I am driving my husband crazy (sorry hon). I try to have massages monthly and use my sauna as much as I can. I try and walk too but exercise is harder being tired. I don't have any other symptoms that I can tell, once in a while I feel depressed but I don't know if it is a real side effect or if it is natural being in this state.

My daughter is fine and the neurologists say that she most likely fainted and her EEGs had no seizure activity.

Enough for now...when I have time I will be back......

 

[Nakamova]

Has anyone ever had this problem with different generic manufacturers?

Some people have experienced problems when their medication is switched from brand to generic or from one manufacturer's generic to another. If you're sensitive to small fluctuations in the active ingredients or to fillers then that might what caused your reaction. You might ask the neuro about specifying "Brand-only -- No substitutions", or asking your pharmacist if they can use the same generic manufacturer for every order.

 

[Bobbi]

Update

Update: So it's been a while since I posted.....I am seeing an ortho-molecular (OM) doctor (in addition to my neurologist) and since 12/13/13 (a year to the day of my status epilepticus) my visit to the OM doctor confirmed what I had been dreading. I am now limited to certain foods and my vitamins are now increased. They include magnesium, B-12, multi, K-2, Vit A, D-3, molybdenum, coconut oil and fish oil. I also use allergy drops 3x a day. I started the diet the first day and have just started the vitamins a few days ago. Christmas Eve I ate all the foods I shouldn't (they had no fresh veggies) and I regretted it. I had the typical allergy symptoms, wheezing, scratchy throat & eyes, itchy ears, congestion. I am on Keppra ER 1500 mg 2x a day but I do not notice the mini-seizures the EEG says I have. I've had allergies my entire life and I made the assumption that my seizures were related to my allergies but none of the doctors including my allergist said that it could be related. I am keeping a daily journal and I am looking forward to the next few weeks to see how I feel. My neurologist said I can prob do a follow up EEG in 6 months and I go back to my OM doctor in April. I did get both a serum magnesium level blood test and and RBC magnesium blood test last week before I started taking the magnesium. It will be a few weeks before I go to my primary to see the results but it should be interesting. My OM doctor is anticipating that with this plan I may be able to reduce the medication. My neurologist is doubtful......We shall see........