New to this and feeling alone!

PAK

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Hi all-

I’m not one to usually post on forums but I feel so lost. I had a Grand Mal seizure on August 1. Thankfully, I had a seizure at home so I was in the ER. Doctor said my eyes were open, had full tonic clonic movements, and no response to pain. They admitted me and did an overnight EEG which showed “nothing”. I questioned why they were doing it when they had me on Valium, Neuromtin and Keppra.

so I get released, and had a 45 minute seizure on the 8th. I saw the Neurologist for the first time yesterday. I really liked her (unlike the one in the hospital). She upped my Keppra and added lamotragine. She will see me back in 3 months.

I feel like I must have had a seizure during the night last night as I woke up with a broken tooth.

Do I call her and tell her this? Does anyone else think Keppra was created by the Devil? I have blurry vision, stumbling around, and extremely tired. Also slurred speech. How long does it take to get used to Keppra?

i live with my 80 year old mom. She currently has pneumonia so things are a mess here!

i feel so alone-looking forward to ”meeting” you! This message took me 45 minutes to type as I am SO,shaky....

PK
 

PAK

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Also-I am a lawyer in the Juvenile Court. My cases are all child abuse and neglect. Neurologist and Psychiatrist want me to take e time off but I just can’t. They don’t understand.
I just got a call from the hospital and now I have an appointment with an Epileptologist in one month.

the Neurologist told me yesterday that the plan was-keep me on seizure meds for 6 months and then bring me into the hospital, take me off all of my meds, and see if I seize and what kind of seizure it is. Is this normal?
 

Porkette

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Hi PAK,

Welcome to the forum! Stress and lack of sleep are the 2 big things that can trigger a seizure. It's good that you will
be seeing an Epileptologist these Drs. specialize in epilepsy and know a lot more on how to treat it and what causes the seizure.

There is a chance that you could have had a seizure in your sleep these are known as myoclonic seizures. I was waking up
in the morning feeling really tired then my Dr. did a sleep study and e.e.g. on me and they found out I was having seizures
in my sleep. If you have sleep apnea or any other sleep disorder this could be causing the problem also.

I've taken Keppra in the past and the drug was terrible for me it gave me a hot temper and it increased my seizures.
Neurontin was dangerous for me. My family Dr. put me on it for headaches and then the drug was causing absence
status seizures which would last 30 min. - 2 hrs. I later found out the drug co. has a lawsuit on them for over $240 million
because they were selling the drug off market and for some people it was causing seizures who never had them before.
There are also many people who the Neurontin helps out but I wasn't one of them.

Tell your Dr. to do a DNA test on you this will show what med is best for you with the least side effect. All they do
is draw some blood and get some salvia from you and send it to the lab, this will show your body chemistry and the
enzymes in your liver and the Dr. can match that up to the best seizure med with the least side effect.

Keep track of your seizure write down on a calendar what time of day/night they happen and the type of seizure
you had by doing this the Dr. may see a pattern in your seizures. I always have seizures the 1st and 3rd week of the
month do to hormones changing.

Sorry for carrying on so long. I wish you only the best of luck and May God Bless You!

Sue
 

Nakamova

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Hi PAK, welcome!

How many seizure meds are you on at this point? When you have more than one they can potentially interact to affect seizure control and/or magnify side effects. For some people they can even cause seizures, as Sue mentions above. Upping the Keppra dose at the same time as adding Lamotrigine makes it hard to evaluate the efficacy of either med and/or the dosages you are on. Keppra has a short half-life and and can be ramped up to a working dose within a day. Whereas Lamotrigine has a long half-life, and it can take several weeks or months to ramp up to a therapeutic dose.

I have blurry vision, stumbling around, and extremely tired. Also slurred speech. How long does it take to get used to Keppra?
These can be symptoms of being over-medicated. After my very first seizure I was put on Dilantin. I was experiencing vision problems, poor balance, fatigue, all of which I thought was related to the seizure. But it turns out it was caused to the Dilantin -- they had put me on too high a dose.

Everyone reacts to meds carefully, so there's no set time for when you might "get used to Keppra". With any brain med, it might be after a few weeks or months -- or never. Usually it's worth giving a med at least a few weeks to evaluate seizure control and side effects before deciding whether it's the right med for you. Of course if there's an allergic reaction, and/or the side effects are immediately problematic, then you need to get in touch with your neuro right away and ask about alternatives.

I recommend that you write a list of questions for the neuro to bring with you to your upcoming appointment. Bring a friend or family member with you if possible, especially if you're not feeling great. Ask about anything that is unclear or worrisome -- meds, side effects, interactions, the plan to stop meds cold turkey in 6 months -- and don't leave the appointment until you are satisfied with answers. Write down the answers, since sometimes it can be hard to remember what was said.

It's unusual to stop meds cold turkey, unless they are planning to keep you in a hospital setting for at least a week. And it can sometimes take longer than a week before the brain is provoked to seize. If they send you home after abruptly taking you off the meds it could be dangerous for and for others, so they need to clarify exactly what the plan is and why.

I think it might make more sense to taper off one or all of the meds -- slowly to protect the brain -- and do a sleep-deprived EEG towards the end of the tapering process. Sleep-deprived EEGs are more likely to generate abnormal brainwaves that can confirm an epilepsy diagnosis. (Note: you don't actually have to have a seizure during an EEG to produce brainwaves that are characteristic of epilepsy). In addition, your doctors may need to be reminded that a positive EEG can help rule in an epilepsy diagnosis, but a negative EEG can't rule it out. An experienced epileptologist may be able to make the diagnosis based on clinical symptoms alone (i.e. seizures or seizure-like episodes), and then give you advice about next steps and treatment options.

Lastly, you're not alone! Hang in there. We've all "been there" and can offer anecdotal advice, and lost of support. :)

Best,
Nakamova
 

Fedup

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Hi Pak

Welcome to C.W.E. feel lost the weight of the world is on your shoulders and you have Grand Mal seizures, this seems like a last resort. Not surprising and then you work as a lawyer in the Juvenile Court, wow, that is a great job but excuse the expression "you like playing with a loaded gun". It's ok tho feel like that, you are not on your own, I have lived with Grand Mal all my life (do not want to think of the years, ok so its 50+) and I have felt like you and gone through a lot of drugs at this stage. An EEG will not show up anything if the seizure starts deep in the Brain and an EEG is not going to say you have or have not got epilepsy.

I think doctors are great crack and also extremly annoying, its good you found a neurologist you like, second question do you trust her enough to look after you, if you do you are on a winner and to answer your question, yes keppra was made by the the devil so he could have fun. I had to get off keppra it was driving me crazy and yes if it bothers you ring and tell her. Did you know keppra is known to cause outbursts of rage and anger towerds others thus it is also known as keppra rage, now it is very good for some and has no side effect for them as regards keppra rage.

Do not worry about how long it took you to type this its part and parcel of your seizure and mine actually and for me all I want to do is sleep, the headache and the heat of my body is unreal and more.
 

Sabbo

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Hello, & welcome to CWE. Grand Mal seizures are the worst. For me, the ones I had when I was 14 were the key to getting diagnosed. I haven't had any of those since then. I've always had simple partials, & began having complex partials about 20 years ago.
As everyone has said, doctors play around with our medications trying to see which combination can/will control our seizures. I've taken so many of them that I often joke about feeling like a lab rat. I'm currently taking Topiramate & Zonisamide--400mg/day of each, along with 1mg folic acid. Even then, I get 1-3 breakthrough seizures a month. The first AED I was given, Tegretol, in 1987--caused the worst allergic reaction. I had an extremely high temperature and rash so severe that my mom said I was like a fish out of water on the hospital bed. I also lost 85% of my hair, which never grew back. Keppra gave me such horrible cramps that I was doubled over in pain. Lamictil is related to Tegretol, so when my neurologist had me add it, I had to stop within a few days. I could feel the same type of rash starting to break out on my back that I had when I took Tegretol.
 

suebear

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Welcome to the group, I have been living with these since the age of 1. Started with Grand Mals then switched to Complex Partials and so on. I've gone through so many medications I feel like a medicine chest. Have learned the best way to get through day to day is to try and keep a smile rather than get frustrated as it avoids insanity.🤪 This group is the best thing that I've found to keep me on solid ground as everyone has given me hope in moving forward and staying in tune with information when I need answers whether I'm curiously asking about a new product on the market or have a situation taking place with my health. Welcome to the group again, you're in good company! :giggle:

Sue
 
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