Is it normal?

[WarHawk]

So, lately as my epilepsy has got worse, I've began feeling an urge to end it all (Die) I lost my little job I had cleaning Aviaries for Falcons & Hawks, I can't go out the front door on my own, my mum's constantly following me. I've told her to stop but she just doesn't. My doctors have had me on the same medication[Keppra] for 2 years & it hasn't worked, yet they're refusing to change it. I have no friends 'cause the ones I've had got sick of my epilepsy. I have 2 good friends, but I've never even met them. So, was wondering if me being Suicidal is normal when you have epilepsy...?

 

[Crash]

No,you certainly cannot let epilepsy get the better off you.You might not think it,but i bet you are far stronger than that.Remember it is your body and if you want to change medication or try another medication along with your current one,(most off us are on two different medications or more) then you can.Your doc and neuro are there to advise you,if you want to change YOU have the power to change.

Please never let epilepsy get you so far down,it can be a bugger yes,but not ending your life over.Please take time to read or vent in the padded room.There is so much information on this site and we are all here to help one and other.So come on,keep your chin up!!!

 

[arnie]

I agree with what Crash said. You really do need to talk with your neurologist about changing meds. One side-effect of many of the AEDs is depression and/or suicidal thoughts. I was on Keppra for a short time, and later on Zonegran very briefly, and both of those meds made me feel absolutely horrible, (mentally and psychologically, not physically). Hang in there, keep in touch with us, and tell your neuro that you need to get on a new med ASAP. I have been on Lamictal for about 15 years, and while it hasn't given me control of my simple partial seizures, but it hasn't had the awful side-effects, either. None of the other meds helped the seizures, and I felt like s--t in the bargain! Onward and upward! It's cool that you work(ed) with raptors. I like birds.

 

[WarHawk]

Thanks. I see my Epileptic Nurses on Monday, so, I'm gonna refuse to leave until they change my meds. It seems lots of People here have been on Keppra & has the same thing happen. Makes me wonder if it's a real epileptic drug & not just some stuff they put a label on & said "This might cure Epilepsy."

 

[Crash]

LOL,now thats the spirit WarHawk,don't take any off their shit.Do whats good for YOU!!!

 

[WarHawk]

\(^-^)/ My Epilepsy! I deal with it! Whoot!

 

[N Sperlo]

Hi Amy. I agree with the two up there.

Your doctors work for you. If you feel like you should be trying other options, they need to allow you to go that route.
I have been on Keppra for years now and yes, it does work. I am now on it along with Vimpat which has been like a miracle drug for me. Everyone is different so some drugs will work differently for other people. All anti-epileptic drugs "might cure epilepsy". It is just how it goes for us. Our doctors have to experiment on us before they can get the chemical mix correct.

Life gets rough and if you ever feel like you just want to die, you should be talking to a doctor. You are certainly not the first person to think that way. Even on medicines, these thoughts should not be considered "normal". Yes, suicidal thoughts can be an effect of medicines. I would suggest seeing a therapist. The next 10 years will define your life immensely and honestly, I think all people your age should see a therapist. I think I should see one too. lol.

If you have anything you want to talk to your doctors about, write them down and go through the list. Talking to doctors and nurses can be a stressful situation and if you're like me, you'll forget to ask most the questions.

Good luck.

 

[Crash]

LOL,Perhaps that cam out wrong!?! But if you are on a medication that does not work very well,you are perfectly in your rights to demand a change or an extra type to be added along with your current one.

It can be hard finding the right type of medication/s and amounts to help control your seizures.Hope you find the start off it on Monday,all the best.Let us know how you get on.

 

[Belinda5000]

Depression is a side effect of probably all the AEDs.
You'll find out who your real friends are also when you have epilepsy.
If your neuro doesn't listen about meds not working sounds like you need a different neuro.

Epilepsy isn't the end of the world you just need a doc who'll listen to you and explain things to you.

 

[qtowngirl]

:agree:

neurologists are there for us, not the other way around. if your med isn't working or is affecting you in a way you can't handle YOU get to decide to change things, not them.

and very sorry to say but regardless of meds or procedures (ie: brain surgery) epilepsy is not curable. it's a lifelong disease regardless of seizure control.

as far as suicide (which to be honest we are not supposed to talk about on this forum), i do understand. i went through it once in my life, as far as starting to cut my wrist, for something completely unrelated to epilepsy.
my best friend found out what i had done and completely squashed it. she was not going to engage in my plan, and shot down the irrational thoughts i was having in one conversation. her not buying into my 'seriousness' actually worked, and proved it was suicidal ideation, and not fully reality even tho i had started to cut. i never would have been able to go through with it, and she knew it.
point being that it's not the end of the world to have these thoughts, alot of people go through it when facing trauma of many kinds. it's not so much that you feel this way due to 'epilepsy'... it's b/c it's a 'there's nothing left' type of feeling, which unfortunately has a great hold on us and makes us think very differently.
also it could be affected by the meds, so if you can, separate having epilepsy with suicidal thoughts - you're going to be okay. yes it does take a long time to accept the new life ahead, but that is okay. we all deal with it in our own amount of time, and whatever your time is, IT IS OKAY. you'll see.

:hugs:

 

[kirsten]

Web MD says: "It is estimated that up to one-third of individuals with a serious medical condition experience symptoms of depression." http://www.webmd.com/depression/guide/chronic-illnesses-depression

And with depression comes suicidal thoughts. It's very difficult to overcome alone and you might find that you get a lot of help from antidepressants. But it's also important to get to the root cause, which could be two things: the anticonvulsant itself or the active epilepsy. (Or both, of course.)

I disagree with what was said about suicidal thoughts not being the end of the world. They very likely can be the end of the world for the person who's having them. They are very often acted upon successfully and seriously. Depression can spiral out of control to the point of suicide without the sufferer even noticing how bad it's getting, which is why I take depression very seriously if I find myself in it. Honestly, if I find myself having experienced three solid weeks of depression, it's straight to the therapist for me.

And of course you deserve to be seizure free and to be on meds that don't make you feel suicidal, whether through side effects or pure inefficacy. If I were in your situation I would change neuros because I can't and won't work with someone who isn't interested in making me seizure free. You really deserve better.

 

[MAB]

So, lately as my epilepsy has got worse, I've began feeling an urge to end it all (Die) I lost my little job I had cleaning Aviaries for Falcons & Hawks, I can't go out the front door on my own, my mum's constantly following me. I've told her to stop but she just doesn't. My doctors have had me on the same medication[Keppra] for 2 years & it hasn't worked, yet they're refusing to change it. I have no friends 'cause the ones I've had got sick of my epilepsy. I have 2 good friends, but I've never even met them. So, was wondering if me being Suicidal is normal when you have epilepsy...?

Sorry you are feeling so bad but suicide is never the answer.

I don't know if this will help or not and I don't know if it will work for your seizures but maybe lamictial would be better for you. Talk to your doctor or nurse. It is also used as a mood stabilizer. I have been slightly depressed for years but feel much better on it and it is controlling my seizures well, at least for now.

 

[qtowngirl]

They very likely can be the end of the world for the person who's having them. They are very often acted upon successfully and seriously.

onder: not sure about 'very likely' and 'very often'. there is a large difference between it and ideation, not only journals i've read but i also know first hand. also, it's not black and white that 'with depression comes suicidal thoughts.' they can, but it's more common that they don't. aka, there is a large difference between depression and major depression. it's common to only feel depressed due to a sudden trauma or other acute issue, in which many times with proper help it diminishes. in a case such as a sudden medical diagnosis it's not abnormal, and is not the end of the world. major depression is a complete separate issue.

MICHAEL F. GLIATTO, M.D., Veterans Affairs Medical Center and University of Pennsylvania School of Medicine, Philadelphia
ANIL K. RAI, M.D., University of Pennsylvania School of Medicine, Philadelphia
Am Fam Physician. 1999 Mar 15;59(6):1500-1506.

Suicidal ideation is more common than completed suicide. Most persons who commit suicide have a psychiatric disorder at the time of death. Because many patients with psychiatric disorders are seen by family physicians and other primary care practitioners rather than by psychiatrists, it is important that these practitioners recognize the signs and symptoms of the psychiatric disorders (particularly alcohol abuse and major depression) that are associated with suicide. Although most patients with suicidal ideation do not ultimately commit suicide, the extent of suicidal ideation must be determined, including the presence of a suicide plan and the patient's means to commit suicide.

warhawk you are among many who relate to the beginning of living with epilepsy - can be very scary and bring depression. these feelings are normal, and there is help to feel better. definately suggest talking to your doc re: integrating help for depression, can be very therapeutic. i agree with MAB too re: asking about changing meds. it is common with some drugs to bring these feelings and once med is changed feelings start to straighten out. i was also put on lamictal (generic is lamotrigine), as my specialist seen there was a depression issue. pls feel you're never alone, epilepsy is not the easiest condition to live with but there are a number of ways to live with it.
:hugs:

 

[giveasmile]

So, was wondering if me being Suicidal is normal when you have epilepsy...?

Suicidal is never normal. It is more a state of the epilepsy (or any other illness) not being treated or managed as best as it can be. Be the little bird in your avatar. He/she (I can't see under the feathers) has the attitude you need to get through this. :woot:

The people here helped me, tremendously, reach out as often as you need to and really try to get someone to come to your appointment with you if you feel you can't get your medication changed on your own.

Many people do great with Keppra. I wasn't on it for very long and had to stop it, specifically, because it made me feel suicidal. I am not suicidal anymore.

 

[Cint]

Hi and welcome warhawk,

Dealing with epilepsy is difficult. Unfortunately, along with epilepsy, many folks deal with depression also. They do go hand in hand. I am one of those that has and I currently take Keppra and been taking it for 14 years now. But I've suffered from depression for many years prior to that. And there were times I was suicidal myself. I was seeing a neuropsychiatrist whose specialty was epilepsy and depression/psychosis,etc. He knew better than anyone on this site what the disease does to a person's mind. So please find a psychiatrist who knows the ins and outs of epilepsy. And do find a new neurologist, too. There are better meds as some of the anti-seizure meds are also used as mood-stabilizers: Lamictal, Trileptal, Klonopin, Tegretol, just to name a few.

onder: not sure about 'very likely' and 'very often'. there is a large difference between it and ideation, not only journals i've read but i also know first hand. also, it's not black and white that 'with depression comes suicidal thoughts.' they can, but it's more common that they don't. aka, there is a large difference between depression and major depression. it's common to only feel depressed due to a sudden trauma or other acute issue, in which many times with proper help it diminishes. in a case such as a sudden medical diagnosis it's not abnormal, and is not the end of the world. major depression is a complete separate issue.

Well, in my case it started out as depression and finally was diagnosed as major depression and then the shrink said I was bi-polar, after I was suicidal. So I know first hand also. And to this day I still take an anti-depressant. So often times, the docs don't realize until it's too late that the person was actually suicidal and not just depressed.

From the www.epilepsy.com website:

http://www.epilepsy.com/epilepsy/interprob_depress

Interictal depression , occurs in 25% to 55% of patients (1,2). Further, the suicide rate of persons with epilepsy is more than five times that of controls (1,3). Interictal depression has biological mechanisms (family history of depression, structural lesions, AEDs) and psychosocial-reactive mechanisms (1,2,4–6). The burden of suffering depression causes is enormous. In one study of patients with medically refractory epilepsy, depression was by far the most significant predictor of poor quality of life, overriding seizure frequency and severity (7).

 

[kirsten]

onder: not sure about 'very likely' and 'very often'. there is a large difference between it and ideation, not only journals i've read but i also know first hand. also, it's not black and white that 'with depression comes suicidal thoughts.' they can, but it's more common that they don't. aka, there is a large difference between depression and major depression.

I understand that there is a difference between suicidal ideation and being suicidal but here, on the forum, which of the two applies is not for us to judge. I wasn't intending to say that there are statistically more depressed people who kill themselves than those who don't or that depression always results in suicidal thoughts. Rather, I was saying that every thought of suicide needs to be taken very, very seriously because it can end in death. It's up to a psychiatrist or psychologist, after much assessment, to decide whether or not the patient's suicidal thoughts have moved from ideation to planning. We can't say it's not a big deal. I believe it is a very big deal, if only because we can't assess it properly. In other words, when in doubt, err on the side of caution.

 

[kirsten]

Well, in my case it started out as depression and finally was diagnosed as major depression and then the shrink said I was bi-polar, after I was suicidal. So I know first hand also. And to this day I still take an anti-depressant. So often times, the docs don't realize until it's too late that the person was actually suicidal and not just depressed.

From the www.epilepsy.com website:

This happened to me, too, about seven years back. By the time I had moved from asking 'why die?' to 'how,' I had no reason to tell anyone about it because I didn't want the help at that point. There was not a person who knew me, including my doctor, who wasn't completely stunned when they found out how low I had sunk. I don't have a neuropsychiatrist but I have a psychiatrist who specialises in temporal lobe epilepsy, and I believe the biggest danger here is that the temporal lobe can push us to suicide in a minute. It just takes a seizure, or the bipolar-like mood swings that can push us into major depression so quickly we can't even blink. I have been taking antidepressants for years now and I see my psychiatrist for an hour every month. The agreement is that every suicidal thought is reported immediately by phone and I stick to that, although we have good control of the mood swings, which has taken care of the depression for ages now. Still, I now know well enough to take even the vaguest suicidal thought as a threat that needs to be confronted head on straight away.

 

[Cint]

We can't say it's not a big deal. I believe it is a very big deal, if only because we can't assess it properly. In other words, when in doubt, err on the side of caution.

:agree: When person is in a depressed frame of mind, they cannot make the correct judgement. The end could be moments away and help is imminent.

 

[Nakamova]

as far as suicide (which to be honest we are not supposed to talk about on this forum), I do understand.

Just wanted to clarify CWE's policy on this (please see: http://www.coping-with-epilepsy.com/forums/f34/do-not-post-any-reference-suicide-forum-4328/):
Discussing suicide is discouraged for several reasons: If someone is imminently suicidal, CWE urges them to seek emergency help rather than to post here at CWE. As amazingly helpful and supportive as CWE members are, we are not professionals and cannot be certain of the appropriate intervention to take to ensure that a suicidal member is safe. In addition, such a post can be stressful for other members who may be emotionally vulnerable.

That said, suicidal thoughts are concerning for many folks with chronic disorders such as epilepsy. I think there is some leeway in discussing them as folks have in this thread, particularly in the context of medication side effects and depression. As long as folks understand that this is a sensitive grey area, and Bernard or the mods may step in if the ultimately protective intent of the policy is compromised.

 

[qtowngirl]

tbh (re: me saying it in the beginning), i've kept one eye shut in this conversation b/c i know and respect that it's preferred to be a non-topic here. put simply i've been waiting for you to post here, and thank you for doing so.
my apologies if it's a bit 'out of bounds' and it's understandable if any of you or B step in, the best we can do as members is respect the 'rules.'
HUGS to all.