taking so long for any Drs. to listen to me.

[bazpa]

Hi, I am new to all of this. Four years ago this week, I felt like I hit a wall. I was tired like I have never been before. It was six weeks before my youngest child was to graduate. I decided that I must just be burnt out from working so much, band, sports, drama ect. My kids were very active, and I wanted to see everything they did. It did not get better. I started waking up every couple of hours at night. I was so tired at times, that I could not function. I stopped talking to friends, and family, and would rarely leave the house, except to go to work. I slept most of the time. I could not remember things. I could not watch a movie, as I would start, and the next thing I knew the credit were rolling, and I had no idea what had happened. I would realize I was outside on my deck at 3 in the morning, and had no idea how I got there. I would have episodes where my eyes would flutter, and my head would fall. People around me thought I was just tired, and a few even thought I was doing drugs. I went from doctor to doctor, trying to get an answer. Everyone of them said I was depressed or it was hormones. I guess if your in your 40's, you must have depression or hormone issues. I cannot say how many times I pulled onto the side of the road, and had somebody else drive, as I could tell when one of these episodes where coming. I finally gave in, and started taking anti-depressants. I don't know how many I tried, but none of them worked. The longer this went on, the more I isolated myself-I just did not have the energy to deal with anything. In October of 2010, I was driving to work, and the last thing I remember is seeing 3 of everything, and thinking what is wrong with my eyes. I have no idea why I kept driving, but I drove for 25 minutes, with people calling 911, and the police after me. I became aware that I needed to pull over right before they caught up with me. I am thinking law enforcement need a little education on this. I do not remember everything, but I do remember them yelling at me, asking me if I was drinking or on drugs, asking me questions that I could not answer, because I could not remember. I think I was about to be cuffed, when my eyes rolled back in my head. The called paramedic, and I refused to be treated. I don't even remember signing the form saying I did not want treatment. I was off balance, had memory problems, couldn't remember the words I wanted to use, and slept a lot for 3 days. I felt like I came out of a dream very soon after starting seizure meds. My energy started coming back, and I wanted to be around friends and family again. I watched my first movie, and slept thru the night for the first time in 4 years. unfortunatley, my med slowly have stopped working. I have tried 4 different ones, and 3 gave me rashes and hives. I am so disappointed to go back to feeling so bad again. Does anybody get so tired all the time from these, that they can hardly function? Maybe it is hard for me right now, because after a couple of months of feeling normal, I realize how bad I was. I have had no life since this started, and if I have to feel like this, and the Drs can't help me, than I would rather not be here. Does anyone have any advice on how to cope with this?

 

[Nakamova]

Hi bazpa, welcome to CWE!

I'm sorry for all you've had to go through. The medication merry-go-round is stressful all by itself. What med are you on now? Which meds have you already tried? It's possible there may be another med out there left to try. If it's an option, you might also consider trying neurofeedback as an adjunctive treatment. If nothing else, it might improve your sleep, and it could potentially help with seizure control as well. The drawbacks are that it's not often covered by insurance, and it takes many sessions (at least 20) to see results.

Have you ever had a sleep study done? Maybe some of your exhaustion is form nocturnal seizures or sleep apnea? (Heaven knows the meds can make us tired too, but sometimes a sleep study can point to other factors.)

Best,
Nakamova

 

[valeriedl]

I've been on so many different concoctions of meds.

On one all I did was sleep. I didn't eat and just stayed in bed. I was loosing weight like crazy so the neuro changed things around. On another one all I did was eat. My husband mentioned to me that I was really starting to put on weight and to watch what I was eating, so I'd just wait for him to go to bed and eat a half gallon of ice cream and then hide the box at the bottom of the garbage can.

It may take the dr a while to get things working out right. Make sure you tell him all the things that are going on with you so he knows that one of the meds might not be the right one for you to be taking.

When you go to the dr do you go alone to the visit or does someone come with you? Alot of times if the dr has someone else to ask questions about what you are doing to back you up it could help.

 

[bazpa]

Thank you for all of your advice. I have gained 20lbs, and am so cranky, and feeling hopeless. I am wondering if it is the meds. When I went to the Dr. for over 3 years, the kept telling me I was depressed. I kept telling that I was not, but took several anti depressants, as I was willing to try anything to feel better. They did not work. Now I am feeling depressed, and anxious. yes I try to take somebody with me to appointments. My husband can tell when I am not doing well, and wakes up when I have night seizures. I am just really frustrated, and there is so much I want to do, but am too drained to do it. They just increased the Keppra to 1000mg twice a day, so I am a little dizzy, and tired. I just dont know how to explain how I feel to other people, to make them understand how drained, and anti-social I feel.

 

[Nakamova]

Keppra is known to cause moodiness, so it could be causing or contributing to your depression. Some folks have found that taking a B-complex vitamin helps. You could give it a shot. You should also let your neurologist know that the Keppra is affecting your mood.

 

[bazpa]

I have been taking vitamin b since I started getting what I called episodes, before I was diagnosed. I tried everything to combat how drained I was. I have continued to take vitamins since I started and got into the habit. I am feeling worse everyday I take the keppra-everything from being really agitated, to crying. I own a business, and my mom, dad, sister and daughter work for me. Unfortunatly I almost bit their head off yesterday for stupid stuff. I was so tired this morning, that I got root beer out-left if out without the lid, and don't remember doing it! I also did not make it to work. I don't know it I can take this much more. I really am thinking that the side effects are not worth it, and want to just stop taking my meds. My doctor is very popular, and while I really like and trust him, it takes forever to get in to see him. What will happen if I stop the meds? I know I will probably have more seizures, but they are better than feeling, so depressed, and angry. Any thought would be appreciated.

 

[Nakamova]

There ARE other meds to try. They all have side effects of course, but not all of them seem to affect mood to the extent that Keppra does. Before ditching meds altogether, at least have a conversation with your neurologist about what your options are. If you do decide to stop your meds, let your doctor know, and taper down in small increments over long periods of time. Doing it as slowly as possible will minimize the risk of withdrawal side effects and seizures.