Ha. Ha. Ha.

[hydrogyrum]

A few months ago I introduced myself and my problems. All I got were platitudes.

At the time, I had spent 10 days in SpectrumHealth's EMU unit (Grand Rapids, Michigan, supposedly a level IV EMU). They found out that my right temporal lobe was heywire. This was a highly stressful time for me.

I have read coping-with-epilepsy.com's message boards for a good while now. I have read your conversations on epilepsy in order to find answers. Why did you not reply to me with an honest answer?

:e: :brain: :bigsmile: :soap: onder: fft: :banana: :banana: :banana: :banana: :banana: :banana: :banana: :banana: :banana: :banana:

 

[Frink]

Hi Hydrogyrum,
Looking back at your 4 posts I could find no questions to provide an answer to, so at this point I can only say,
Welcome to CWE.

If you would re-post your question I am sure someone here will give an answer, if they have one.

 

[Porkette]

Hi Hydrogyrum,

I looked at your post and I saw where a few people responded to you. I just came in this past spring, just like you I have right temporal lobe E. and I've had it for 44 yrs. I found seeing an Epileptologist the best thing I ever did. They were able to pinpoint the cause of my E. and keep me on the least amount of med to control my seizures. After doing many tests I was able to have surgery to reduce my seizures and my Dr. found out I was drug resistant so now I'm using the medical marijuana (CBD) and I'm amazed at how that's reduced my seizures.
Welcome to CWE everyone here has been a great help to me and they are very friendly and supportive. I wish you the best of luck and May God Bless You!

Sue

 

[acshuman]

! ! ! ! Welcome to CWE ! ! ! !

hydrogyrum,
I read your description of your situation to try and get an idea of what you are dealing with. The first thing I can say is that having feeling of anger is going to cause a lot more problems for you than a keeping a level head would!
Feeling dejected is a very common feeling to have when you receive a diagnosis of E. The anger part is something that you are going to have to get rid of.
It has been 50+ years since I was diagnosed w/E so I have seen many different people and many different reactions to their diagnosis. Anger is NEVER going to help you. If anything, feeling anger can lead to higher stress levels which can lead to more seizures for the person with that feeling of anger! Two of the biggest allies of a person w/E are Patience and Acceptance of Time. This is because E is a condition that is very difficult to reach a conclusion on as far a a plan of treatment. This means that the treatment plan is going to take some time to reach! Don't expect an overnight miracle to happen so your life will be back to normal the next day. Having Patience will allow you to accept this fact. The treatment plan may be reached, but many times it takes what seems like 'forever'. This is where Patience comes in as an important factor for any person w/E. Not getting upset or angry because of time that is passing before a treatment plan is reached is a VERY important part of not just your stress. Feelings of anger can raise the stress levels which in turn may affect the way an AED works in treating your E.
This means that the feelings of anger are hurtful to you in more ways than one. That anger may be part of the reason that it is taking so long to find a useful treatment plan, so it is hurting you this way also! That is why you need to get rid of it!
The best thing you can do is talk to others about your E. This will give you access to the experience of many people who have many years of experience living w/E. CWE is a perfect place to do this! :clap:

acshuman

 

[knothing]

Nakamova replied with an honest answer from her perspective. Not everyone replies and the answers aren't always what we like. Now for me I read hundreds of threads the first year to educate myself and understand what was going on with me. I was thankful for most of the replies that I got and many of them were very helpful.
People are here and are reading and reply when they have a reply. 99.9% of the people are sincere and want to offer support (not sure who the .1% are). Welcome and post more, the more you post the more people will see you.

 

[Fedup]

A few months ago I introduced myself and my problems. All I got were platitudes.

I am sorry all you got were platitudes, the problem is most people try to be nice. I was reading your first post where you asked the questions??

I've been reading these forums for the past few months and just joined recently due to the seizure activity I've had.

A year ago, I had a concussion (the last of about 8-9; I'm 47). I have had seizures since then, including partials ("staring spells") and what I guess are convulsive nocturnal seizures. I now know when it happened while I was asleep because of the pain in my neck.

I'm currently going through misery. I've been to the ER and admitted to hospital 2 times in the last six months. The first time, I had a 1 or 2-hr. EEG; this last time, a 24h video EEG. Of course it didn't pick up anything, including the neckpain-causing seizure I had the next night.

So what neurologist did you see that told you all this.

Now, I don't wish E on myself, but I feel as though I'm stuck in an infinity loop right now. I've certainly read anough of other people's experiences here to know that I'm in for a rocky ride. Still, it's nice to have a place where I can vent my frustrations. Any feedback would be most appreciated.

I am glad you do not wish E on yourself, neither does anybody else, so you have read everybody else's experience and you are going back to see your neurologist. You do realise that no two people are the same, so what you read is each of our experiences while trying to help each other. What is the question you want answered.

At the time, I had spent 10 days in SpectrumHealth's EMU unit (Grand Rapids, Michigan, supposedly a level IV EMU). They found out that my right temporal lobe was heywire. This was a highly stressful time for me.

I am sorry you had to go through all of that, like you said the stress it brings is not nice.

I have read coping-with-epilepsy.com's message boards for a good while now. I have read your conversations on epilepsy in order to find answers. Why did you not reply to me with an honest answer?

No where have you asked a question and the good people here at CWE who answered gave you "platitudes" you wanted people to guess your questions not be polite. To tell you what you wanted to hear and nothing else.

The good people here at C.W.E. will try and help anybody in any situation if they are asked, you will not find a better group of people, a polite and understanding group of people.

 

[hydrogyrum]

I'm sorry. I phrased my introduction in a way that I saw other newbies doing--just to introduce themselves. They didn't have any particular question to answer, but they received a nice welcome nonetheless.

I've been experiencing a lot of anger due to my medications and also personal situations.

MEDICATIONS
I first was on Keppra for about 7 months. It was doing fine--taking care of the seizures and making my brain feel "good." I can't explain it. About 6 months in, however, I noticed personality changes: I became irritated at the least thing. It reminded me of when I was on prednisone, except that I could now control my response to the irritation. (With prednisone I couldn't control myself.)

I was taken off Keppra because I had 2 suicide attempts while on it. Mind you, I'm not the type to commit suicide. I tried alcohol and an overdose. It didn't work, but afterwards I was happy it didn't work. Remember, I'm not interested in killing myself.

The second time, I did a little bit better. I had a jack knife and tried to commit hiri-kari. You know, stick the knife in your stomach and slice it around. Fortunately, this didn't work either. After the ER, I ended up in a "safe place," i.e., a psychiatric hospital. The psychiatrist there wanted to put me on Depakote, but I wanted my epileptologist to prescribe whatever new drug for me.

When I got out of the shrink hospital, I decided to call my eptileptolist and report my problems. She took me off the Keppra and put me on Depakote. I used to be on Depakote for bipolar, but since 2008 was off it because I'd had no bipolar symptoms. (I had gastric bypass surgery, which took care of the bipolar.)

So. The first night I was on Depakote, I was hypomanic--very creative, enjoying my productivity, the works. Except, I knew I was hypomanic, and I knew this didn't bode well for me.

At this time, I dropped my Prozac 40mg and Trazadone, as they increase the serotonin in the brain. Yet I took the Depakote, knowing it was a "mood stabilizer." The next two nights, however, I was completely full-blown manic. I didn't sleep (3 nights in a row now), and couldn't get anything done. (I was off the Prozac and trazodone these nights.)

So anyway, my eptileptologist took me off the Depakote and on Lamictal instead. By the way, I noticed afterwards that she prescribed Depakote ER, not plain old Depakote. This means that she also had me taking essentially double the dose of Depakote.

Lamictal hasn't caused me problems yet, but I'm still on the second stage of titration.

PERSONAL SITUATIONS

You and I know that our personal lives interfere with our nice little medication regimens. So, on October 20, my brother died of a heart attack. He was a year older than I, and we were quite close. I still have problems with thinking about how he will never walk into the house. My first suicide attempt happened before his death; my second attempt happened a few days after his funeral.

Tonight I learned that my sister-in-law is in the hospital and perhaps at death's door (not my brother's wife, my other brother).

I guess the point of this rambling post is that I am very angry. I'm angry about the death in my family, and another one that might be pending, and I'm angry about the medication roulette I've experienced thus far. BTW, my epileptologist isn't actually an eptileptologist; she's a nurse practitioner operating under the supervision of an epileptologist. I'm sure she's following protocol as far as what to prescribe, but geez, the Depakote was a plain-sure bad way to go (especially as I was given Depakote ER, not plain ole Depakote).

I thank you for your response.

 

[valeriedl]

Keppra can make you angry very easy, it's called Kepprage. I'm on it and almost anything can set me off. I'll find myself yelling at people over small things. My family has yelled at me for yelling at people but the words come out of my mouth before I even realize I'm saying them. I can't handle being around young children. I know that the kids are just acting like kids but I just cant take it.

When I was first diagnosed I tried several different meds and dosages. Some worked, some didn't, some made things worse and others I couldn't take the side effects of. I don't know how many meds I tried before I found the right ones that helped.

Different meds can cause different side effects for people too. Sometimes the med might make you happy, sad, angry, hungry, starve yourself (all of these things have happened with me when I was on some meds) and other people will have the complete opposite or none at all. If you don't feel the med is working then talk to your neuro about doing something with them.

Stressful and depressing situations will cause me to have seizures. Usually around the holidays or when things are going hard I'll usually have more seizures than normal. When someone close to me has died I'm almost guaranteed to have a seizure/seizures. When my grandparents and one of my pets had passed away I think I had at least one seizure a day for the next week.

When I was first diagnosed with epilepsy I'd see my neuro's nurse practitioner every other visit. The woman was evil, there's not even a word to describe what she was that I can post on here! At one point I was having a lot of seizures. I was trying to talk to her about it and see if there were any changes in my meds or something else that we could do. All she told me was that I wasn't taking my meds and if I would then I wouldn't be having all those seizures. Both my mother and husband were with me at all those appts and all three of us told her that I always take my meds and I take them on time. I have an alarm set on my cell phone to make sure I did. She didn't believe me. She didn't want to listen to anything I had to say because she knew what was going on and why, I wasn't taking my meds was why, so she didn't want to hear what I had to say.

The last visit I had with her was the worst, I think we were yelling at each other! When I went out to see my neuros secretary to schedule my next appt I started yelling at her saying that if I didn't see my actual neuro every visit and not the nurse practitioner then I was going to another neuro.

Haven't seen her since, she won't even look at me now when I'm in the waiting room. My husband and I gave her a nick name. Her real name is Jill Bishof but we call her Jill Bitchoff (sorry for the language).

If you don't want to see the nurse practitioner anymore then DEMAND to see the actual eptileptolist. This helped me a lot! My neuro listens to what I have to say and ask me questions about the problems I'm having, we try to work out an answer together. His answer to any problem I'm having isn't "You aren't taking your medicine!"

Hope this helped some.

 

[Fedup]

hydrogyrum

There was nothing wrong with the way you introduced yourself, it was a good introduction on your part and you are very welcome to C.W.E. where we will try to answer all your questions, I might not be much help but there are a lot of others who will.

Being on keppra could/would explain your anger, as you said it was due to your medication, kepper does not agree with everybody although it is very good for some it is called keppra rage by some of us because it can cause sever mood swings. All medications come with warnings about side effects and even though that medication might agree with me it can be the complete opposite for you no matter the medication, so do not beat yourself up over it. We have to watch out for these side effects and react quickly at times as they can be a danger to us, it helps if we have somebody with us to help us at these times.

Always remember you are human just like the rest of us and you are a good person who has people who love you, if or when you start to have these thought go to your doctor straight away, no waiting around. You are too important to a lot of people.

Good on your epileptologist.

You need to keep a diary and write down everything you notice about any medication you are on because you will never remember everything you need to tell the doctor. Remember all medications have side effects and not just what is printed. Me personally I find the Lamictal good but there are people who cannot take it.

I am so very sorry to hear about your Brother, that was not and is not easy on you, these situations bring on a lot of stress which can effect you as well and cause extra seizures, so please be careful and remember its not something you did deliberate in these situations that brings on a seizure. Now you have to deal with another situation I am sorry to hear.

Of course you are angry about all that has happened, you are a kind and loving person
who cares, if you were not you would not be angry about all this. Your epileptologist may be a nurse practitioner but she is helping you which is important.

Findinding medication that works for us is as you put it "roulette" it does take time.

Always remember you are a very important person to a lot of people, a caring, thoughtful person and a loving person so any thoughts you had forget about them and any that may happen go straight away to a doctor.