WHY am I being passed around????

[LJ-Bain]

My saga continues....
So.
My neurologist's nurse says I need a psychiatrist to get anti-depressants and
to go over any possible underlying psychogenic issues. My gp will not dispense anti-depressants because he feels they are epileptic seizures.
I arrange to see a psychiatrist.
It was all arranged for Monday.
I get a call from the out-patient psychiatry department saying that
they have to cancel my appointment because after going over my file
they feel it is best that I deal with my neurologist.

What the hell.

I am beyond frustrated.
At this point I wonder what they aren't telling me???

I call my gp and they say that the department felt uncomfortable dealing with my case because I don't fall within their parameters. What parameters are those???
They were going to refer me to the psychiatrist who saw me in the hospital last time when I was status
but she only sees in-hospital cases and not out-patient.

Basically I am THAT complicated that no one wants to take responsibility for my health.

So now again, I wait. Hold my breath and try to keep it together in any way I know how. I can do this. I can do this. I can do this.

[Nakamova]

They were going to refer me to the psychiatrist who saw me in the hospital last time when I was status but she only sees in-hospital cases and not out-patient.

Well there must SOME psychiatrist they could refer you to who sees out-patients? WTF?
And/or since they feel it is best that you "deal with your neurologist", will they call up the neurologist on your behalf and explain why?

[P-Funk]

My god, this has been a nightmare for you! I feel like this should be part of some news story exploring the flaws of the healthcare system. Something has to give sooner or later... right?

[LJ-Bain]

I should have just left this with my neurologist to refer to whatever psychiatrist but he has been in conferences and then on holidays for over a month and I was and am having a really tough time dealing with everything.
I am trying to help myself and I am being blocked.
So I just have to wait until he gets around to me. Leave messages. Stalk them. I feel like I am begging.
I won't lie...the depression has gotten dangerous but because I am not actually suicidal (thank you dear children for that) they feel it's ok.

This will pass. I'll get help for WHATEVER but wow. I am calling on all my superwoman powers and all my strength.

My gp's nurse just tells me my file is on top of his desk.

What has a girl got to do to get some help.

I'm ok. I'm ok. I'm ok. This is just REALLY hard.

[LJ-Bain]

THe health system is flawed P-Funk. The nurses at the hospitals are really understanding and they all agree there is a gap and that there are people who just aren't being helped.
I just want to talk to those people and ask how they do it?

I have to go to work soon. I have to try eat and wipe these damn tears and get my crap together because I don't moan and groan at work. I have to remain employable after all.

I have become, comfortably numb. Pink Floyd, right?

Thanks for listening. I'll get through this. I have to.

[pita300]

I am right there with you. But for me I am seeing the psychiatrist and a therapist! Went to the epileptolgist yesterday. He told me that they (the seizures) seem to be stress related. Isn't stress a trigger? He also told me yesterday that seizures usually decrease significantly after the video eeg. Yes they have dropped to a 2-3 times a week. He wants me to continue seeing the psychiatrist and therapist and if its not getting better he might rethink his diagnosis. So in the meanwhile here I sit. A wife who doesn't believe whats happening to me is real. An older mother who doesn't understand how it can be in my head just not in the brain. I can't give you the answers your looking for. However I absolutely know how you feel. It makes me want to

[LJ-Bain]

I know you understand pita! You've been through alot.
And of course seizures can be stress related! Stress can be a trigger for seizures and almost everything it seems. I wonder why they told you that seizures decrease after the video eeg...that makes me feel like they are patting you on the head going there, there now, you're ok. I am glad they have dropped to 2 -3 times a week for you but still, that is alot and tough to handle. You're in the waiting game too. It seems like you have to prove yourself to them when they say it's just stress.
I hope today is a good day for you.

[qtowngirl]

I am right there with you. But for me I am seeing the psychiatrist and a therapist! Went to the epileptolgist yesterday. He told me that they (the seizures) seem to be stress related. Isn't stress a trigger? He also told me yesterday that seizures usually decrease significantly after the video eeg. Yes they have dropped to a 2-3 times a week. He wants me to continue seeing the psychiatrist and therapist and if its not getting better he might rethink his diagnosis. So in the meanwhile here I sit. A wife who doesn't believe whats happening to me is real. An older mother who doesn't understand how it can be in my head just not in
the brain. I can't give you the answers your looking for. However I absolutely know how you feel. It makes me want to

-Stress is one of the top three triggers (lack of sleep and alcohol...)

-WTF He told you they usually decrease after the video eeg? Significantly? I'd like to know how the hell how. I'm doing it in a month and that's the part I'm looking forward to least - coming home after being off meds for two weeks and next to no sleep; they're going to be pretty steady until the meds are leveled out again and I've slept for a week straight, wouldn't think anything less. HOW can they decrease? If anyone else on here has been told the same thing, pls chime in, I'd like to know what that's all about.

-Pita your wife doesn't believe what's going on? That would put me over the top, so sorry to hear. BIG HUGS.

[pita300]

Qtown,

Sorry to get you going! Let me clarify what i think he was talking about. He meant the non epileptic seizures. Since none of the seizures I had during the video eeg showed on the eeg. So their thinking is since its brought to my attention I would pay more attention to the stimuli that would bring on the episode and be able to defuse that stimuli. work through it so to speak. So in a way it kinda makes you feel like your faking it. The relationship with my wife hasn't been healthy for a while and that's a whole other forum. LJ. Yes in a way the epileptolgist is just patting me on the head.. Basically unless the psychiatrist proves him otherwise its like a tennis match and I'm the ball. Now i'm in the psychiatrist court!

[Cint]

My neurologist's nurse says I need a psychiatrist to get anti-depressants and
to go over any possible underlying psychogenic issues. My gp will not dispense anti-depressants because he feels they are epileptic seizures.
I arrange to see a psychiatrist.
It was all arranged for Monday.
I get a call from the out-patient psychiatry department saying that
they have to cancel my appointment because after going over my file
they feel it is best that I deal with my neurologist.

Basically I am THAT complicated that no one wants to take responsibility for my health.

So, there is NO neuropsychiarist available to deal with this sort of case? Or an epileptologist instead of a neurologist?
When I was going thru a very rough, deep, deep depression, my epileptologist sent me to a neuropsychiatrist who dealt with this specific type of case. A regular psychiatrist usually doesn't know enough about all the aspects of epilepsy to deal with it appropriately.

And they told me at the time that I was the most complicated case because 1) we couldn't gain control of the seizures and
2) the depression was so overpowering, at times I was suicidal. Thank god, I had kids to love and love me back.

[qtowngirl]

Pita,
Ahhhh, okay that's better. I was like wtf?
So none of yours showed up? How frustrating!

[Cint]

-Stress is one of the top three triggers (lack of sleep and alcohol...)

-WTF He told you they usually decrease after the video eeg? Significantly? I'd like to know how the hell how. If anyone else on here has been told the same thing, pls chime in, I'd like to know what that's all about.

I 2nd that!!!

[Silat]

There sounds like there's an awful disconnect between your doctors...
Any way you could get them all to communicate so that they're all on the same page?

[julie wishes]

My echos everything above. Frustration for you and with the system. You are one brave woman. I know you feel depleted and like crap. And then you have to paste a smile on your face and go to work. Keep trucking girl. We are here for you.

I like the idea of a neuropsychcologist as Clint mentioned. I also wonder about neurologist feedback for you.

If remember right, you're in Canada? Not familiar at all with your insurance up there, but wondering if you can call the insurance company and ask them to help you find a psychiatrist? ???

I hope you can find time to take a 30 minute walk each night. It can really help with depression. Also decrease your Carb intake. Do what you can for yourself. So they see your efforts.

[Silat]

If remember right, you're in Canada? Not familiar at all with your insurance up there, but wondering if you can call the insurance company and ask them to help you find a psychiatrist?

Universal healthcare
Great for little things that most people deal with, terrible for illnesses like E which are so complicated and varied.

[Cint]

I like the idea of a neuropsychcologist as Clint mentioned. I also wonder about neurologist feedback for you.

If remember right, you're in Canada? Not familiar at all with your insurance up there, but wondering if you can call the insurance company and ask them to help you find a psychiatrist? ???

I did say neuropsychiatrist, not neuropsychologist. The neuropsychiatrist will distribute meds, not the neuropsychologist, but I have been to both. The neuropsychologist just puts you thru all kinds of tests to see how you function and what kind of therapy one could use.

[epileric]

Universal healthcare
Great for little things that most people deal with, terrible for illnesses like E

Universal healthcare just determines how the system is paid for, not how they are treated.

Some medical people can mess things up regardless of the payment system.

[Silat]

Universal healthcare just determines how the system is paid for, not how they are treated.

Some medical people can mess things up regardless of the payment system.

As I see it, that's not entirely true. It gets the government involved, which loves to cut costs in any way it can. That leads to things that make it hard on the patients, such as denying medication unless there's a diagnosis. That makes it hard on those who don't get a quick diagnosis...

(Not sure if that occurs in Canada, but I know there are countries in the EU that take that approach.)

Regardless, there's a ton of extra red tape to tear through simply because the state is paying for it, rather than privite businesses. Private business has always been more effecient at keeping costs low while keeping standards of care as high as possible. They have to, to survive as a business and remain competitive in the market, whereas the state doesn't have that to worry about when it's universal, so the entire system tends to become ineffecient.

Though I do agree that mistakes happen frequently and things get botched up regardless of the payment system... That tends to become more frequent with cases like E where multiple doctors are involved and communication between them is sub-par.

I think, in this case, the culprit is far more a lack of communication than it is a system problem.

[epileric]

I think, in this case, the culprit is far more a lack of communication than it is a system problem.

Agreed!

[thornton8000]

with anti depressants they lower seizure thersholds thats why they keep telling you to keep going back to your neurologist, I get the same storyand they keep upping my anti-epileptic drugs since most have mood stablizing affects I'm sorry your going throuhg the same things i'm going through here as well.

mike