Bad day

[notime]

Hi,

I've been depressed, but not as a result of medicine. I have usually felt like this before, when I've had other diagnosis, so pretty much it's normal for me.


I've went to my neurologist today, and talked to him about the medication side effects and treatment for the future. He says I have primary generalized seizures on the EEG, and it is usually caused by DNA. He didn't take any examples of it or done any testing.

He pretty much told me, that I will have to take medication for the rest of my life... I didn't want to believe it, and considered a surgical option and asked about it. He said that there are no known surgeries that could help genetic generalized seizures, and then I asked about VMS and the other device which was known to stop seizures he didn't think any of that would stop them. Pretty much, I am stunk with it for life. I've asked about clinical trials or anything at all that could help. He doesn't even think there will be any cures for this within my life time that could help..


I am feeling terrible, as to the point that life isn't worth living if I am going to have to take medication which makes me want to sleep all the time even if it does work for a few years.. If something happens to my father, then I will have to stop treatment anyway since I will be unable to support myself..

I am unable to get any form of public transport, I've checked and even went to town hall about it. I didn't want to be a burden on the system, so I looked at disability, and they said you pretty much have to have multiple seizures a month without medication working. I have no relatives or friends that are able to transport me, I've asked and tried so usually I cannot take classes and for the profession I want to do, I must attend a university taking it online will not help. So pretty much I am feeling ill and suicidal at this point... I don't want to go through this my entire life, losing my driver license for one year at a time which will probably happen. Any advice about what to do in life?

 

[masterjen]

For starters, no single neurologist knows everything. It's impossible for them to, when you consider ALL the neurological conditions out there. Can you imagine a neurologist reading every single article in every neurology journal that comes out each month? No way - they'd never have time to see patients.

Seek the advice and opinions of another neurologist (preferably an epileptologist - a neurology specialty that focuses only on seizures). And by seeing another doctor you are not accusing yours of not doing his job; you are simply following your right to learn as much as you can about your condition. I have seen three great neurologists who fully supported me in seeking additional opinions - in fact they encouraged it since they acknowledged that they didn't understand certain aspects about my condition.

If I stuck with the first neurologist I saw I could be like you, caught up in dwelling on treatment that wasn't working, and feeling like I can't accomplish anything. Take the first step in taking back some of the control of your own life, and talk to another neurologist/epileptologist. Good luck!

 

[Cint]

Notime,

Depression and epilepsy often go hand in hand, especially if it is temporal lobe epilepsy. I have TLE and have had CP seizures as well as TC's and suffer from depression, too. I take an anti-depressant and was seeing a neuropsychiatrist who specialized in depression along with epilepsy. If you are suicidal, seek medical attention immediately! There is someone out there who can help. Find a counselor to direct you.

My epileptologist says mine is secondary generalized epilepsy. I've tried many meds, had a lobectomy and now have the VNS, which is a godsend for me. The lobectomy made the seizures worse. So for your neurologist to say there is not much more he can do, then it is time to see a more knowledgeable neurologist, preferably an epileptologist, like masterjen said. At the time, I lived far away from family, couldn't drive, had two small children and my husband was a pilot. So I had to rely on friends and neighbors to help me out thru all those rough times. And there was no public transportation but I made it thru that awful time.

And about the disability. Sometimes you need to apply several times before you can get it. So never, ever give up. Don't be afraid to ask for help. That is what they are there for! Please get the help you need! Chin up.

 

[daviscy60]

I had a neurologist tell me the same. That it would be for life. He said just as a diabetic takes insulin. I disagreed with him as far as a diabetic. You tell someone that you are a diabetic they look at it as an illness. I have lost jobs over having a seizure and if you tell them of this problem they look at you ad though you have a mental problem. This can be very depressing.

 

[Cint]

Daviscy,

Well, I do have E AND DIABETES!!!! So have that idiotic dr. tell me the same thing!!! :bigmouth: Yes, both conditions are for life, but they can both be dealt with. One just has to find the right docs who knows what they are doing. Some so-called docs are just plain ole idiots!!!!!!!!!!

 

[masterjen]

Just a hi, notime. How are you feeling about things today? Do something special for yourself today

 

[Nakamova]

Hi notime -- I agree with the others who suggest that you get a second opinion on treatment options, including meds that won't make you as sleepy. If your neurologist isn't in your corner -- either to help you look for more effective treatments, or to find ways to deal with the side effects of your current meds -- then you need a new one.

You might also be interested in looking into diet or neurofeedback as alternative treatment approaches. Regardless of whether your epilepsy is genetic in origin, these treatments can help. See: http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments and http://www.coping-with-epilepsy.com/forums/f22/eeg-neurofeedback-501/

Also, keep in mind that many people take daily medication for a wide variety of reasons. It's not a death sentence. People take birth control pills every day. Or pills for allergies or cholesterol or high blood pressure. Or insulin for diabetes, like Cint. My cousin who has Parkinson's takes handfuls of pills daily, knowing full well that all those pills will only slow the inevitable onset of his degenerative disease. So while you may feel depressed at the prospect, there's no reason to let a daily pill or two prevent you from enjoying life. You and your doctor should be working toward that goal together.

 

[cadsgj]

I certainly do understand your situation and the way you feel but be very careful if you do come across a neurologist who states you can get all taken care of via brain surgery. Me, I had neurologists/neurosurgeons in four US states wanting me to have brain surgery, stating that almost certainly (no 100% guarantee) the problem will be taken care of... after three brain surgeries now I still have to deal with seizures, though much less than before the first surgery. As well I am still having to take medication. Sooooo, be careful if you find someone who tells you that surgery could take care of your problem, there is no 100% guarantee onder: and results in the end may be much more depressing.

I do hope things for you get better in your mind and heart.

 

[notime]

masterjen
"preferably an epileptologist"

To be honest, I don't know if my doctor is just a plain neurologist or an epileptologist. I've looked in this state, and there are only three epileptologists according to aesnet.org and he wasn't one. But, I've looked at the clinic's website, and it said something about fellowship in epilepsy for a year or two. I don't know if that makes him an epileptologist though will ask him when I go back in 3 months.


Clint:

"Depression and epilepsy often go hand in han"

It isn't because of keppra xr, I've dealt with depression before taking any AEDS and I don't really care to take more medication. I'm not really feeling suicidal anymore, just to the point where it isn't worth living if I am going to have to take medication with terrible side effects. But, it isn't bad now since I pretty much came to terms with it, guess it took a little time to accept it.

"So for your neurologist to say there is not much more he can do"

He said that I should give medication a try, and there are other medication options out there if it doesn't work or change doses. Nobody talked me into any surgical options, it was my own opinion that it would be better to have surgery than to live with it for life which he said wouldn't work for me. I don't know why

cadsgj

Nobody suggested it to me, it was my own opinion that it would be a better alternative than to take medication for life with terrible side effects where you just want to sleep all the time...

 

[Sparkles]

Notime, I'm sorry you had a bad day. This epilepsy diagnosis is fairly new to me and I went through something like the stages of grief when I was first diagnosed, with denial being very strong for me, but also some self pity and despair. I think because I have to take thyroid and high blood pressure medication every day taking the anti seizure med as well didn't affect me as much as it might have others and the really great thing that happened is that it tremendously decreased the frequency of my migraines. Maybe there is another med that will have fewer side effects for you.

While I still bounce around from anger to denial to despair to acceptance, I find I'm at acceptance more and more, especially if I take it one day at a time. When I start thinking too long term and too much of the "what if" scenarios I become way overwhelmed. As a single mom I was overwhelmed enough already!

Sending hugs and good thoughts to you. What this site has taught me had been a godsend. Information first and foremost, and also knowing you are not alone. You are not alone, and we are standing with you. I hope today is a much better day.

 

[Nakamova]

What this site has taught me had been a godsend. Information first and foremost, and also knowing you are not alone.

This.

 

[Cint]

Clint:

"Depression and epilepsy often go hand in han"

It isn't because of keppra xr, I've dealt with depression before taking any AEDS and I don't really care to take more medication. I'm not really feeling suicidal anymore, just to the point where it isn't worth living if I am going to have to take medication with terrible side effects. But, it isn't bad now since I pretty much came to terms with it, guess it took a little time to accept it.

I also take Keppra and I also suffer depression and have for years, well before Keppra was ever on the market. ALL meds have side effects, some are worse than others. And some AED's are also used as mood stabilizers.
Epilepsy and depression often go hand in hand, regardless if you take meds or not.

Have you seen a therapist?

 

[cadsgj]

And I thought depression and I were personal friends! But I must say, looking at it from the direction most all share, friendship with depression I'm understanding we all bring forward here, I don't feel too terribly bad

 

[valeriedl]

He pretty much told me, that I will have to take medication for the rest of my life... I didn't want to believe it, and considered a surgical option and asked about it. He said that there are no known surgeries that could help genetic generalized seizures, and then I asked about VMS and the other device which was known to stop seizures he didn't think any of that would stop them. Pretty much, I am stunk with it for life.

I was diagnosed with epilepsy in 2003, when I was 26. I took meds for 4 years and my neuro suggested a VNS because I'm unable to have surgery.

Since I've gotten it I'm still having seizures but not having as many and they aren't nearly as bad as they were before I got it. I am still having to take medicine along with it and I'm probably going to always have to take meds.

I'm probably going to have seizures for the rest of my life too and it's just something that I've learned that I'm going to have to deal with.

I don't have public transportation so it's hard to get around.

As Cint said sometimes you need to apply several times for disability before you can get it. I was able to get it so I have money coming in but a hard time going out to spend it.

Try to keep your hopes up.