Weaning off Keppra...

[LJ-Bain]

Hi guys.
I hope everyone is doing well. A little update...

After my last hospital adventure they are weaning me off of my Keppra without me knowing what my epileptologist thinks. I can only guess he thinks pnes too since he is supporting this weaning. Who knows for sure though.
I'll find out in August.

I get it though. Negative eegs and poor response to aeds.

What sucks though is that I have to deal with my daily "seizures".
If they are psychogenic they will continue.
If they are epileptic they will continue.

I just have to buck up, paste a smile on my face and try my best to give my kids a normal happy life with as little impact from my issues as possible.

I feel like a normal person. Just sad now and a little defeated.

Whatever though. Everybody has issues. This is mine. No one said life was easy. Beauty still surrounds me everywhere and opportunities for happiness. I just have be open to every possibility.

Cross my fingers that the "seizures" don't increase with the decrease in meds.

 

[Silat]

:?

Why don't you contact your Epileptologist and ask what he/she things, and why he/she thinks that?
It's your health and your body, you're entitled to know why they're doing what they're doing... you don't have to sit back and just let them do it.

I don't know... If I were in your shoes I'd be demanding answers and explainations... I couldn't sit back and just let them do what they want, because it's not them who has to deal with the consequences of it. You do. :?

 

[LJ-Bain]

Unfortunately in Canada that is just the way our healthcare system works.
We don't pay so they get to do it their way.
I'm able to contact my epileptologists nurse as much as I want but she is unable to give me his interpretations. Her hands are tied. She is my only connection to him. We're such a polite bunch in Canada here that whenever someone gets fiesty it does not get you results. They get offended and their hackles rise up. We have learned this. Doctors have egos after all.
Plus I fit their criteria. As a woman with young children this would make me seem even more "hysterical" in their eyes.

I am entitled to answers but because my eegs show normal brain waves my life is not at risk...even if I go status again. They have asked me stay at home with ativan. Not just one, but 3 hospitals. I can go, but my records will show my history and it's easy for them to tsk tsk and sympathetically send me on my way.
I've been through 7 neurologists now (3 at the last hospital) so we were going to just accept whatever the epileptologist says because I have been labelled until something changes.
And things will change if they are epileptic because they have worsened over 4 years.
I can choose to accept or not accept their opinions but I cannot change the facts and what all tests have shown.
I am not rolling over and taking it but I feel like I have to play it safe and play by their rules. I know it's my life and it's not a game but I have more than just myself to think of.
At least I have a great support system so I am lucky.
Yes, I have to live with it. But I already have been...and for a long time.
I have to patient and just wait a bit longer.

Thank you Silat, I do appreciate your input. I don't want to be the person banging their head against the wall and expecting different results...that's insanity, right?
I know that if I do have something difficult to detect it will take years for them to reach their conclusions from this point. I don't have to like it but it's true.

 

[MaryK]

Hi LJ and so glad you are back. This is really just so disconcerting to me.

The normal EEG as I know you know really does not mean a thing, especially if your seizures are deep within your brain. I still cannot imagine them intubating you for a psychogenic seizure. (the hosp admit about a month ago).. Just does not make sense.

What sucks though is that I have to deal with my daily "seizures".
If they are psychogenic they will continue.
If they are epileptic they will continue.

Have you asked the nurse of your neurologist to check your chart so you can see the note about weaning the Keppra and why. I agree with Silat you have the right to know. Can a friend take you to the hospital so you can get a copy of your chart?

I really wish there was something I could do.. You have such an amazing family who always supports you. So surround yourself with everything you love and find peaceful, whether it is reading, singing to your kiddos, planting a new flower garden, etc. I know it is easy for me make suggestions that are possibly hard for you to do depending on the day. You are right one day at a time.

Take care,
MaryK

 

[epileric]

Wow, sorry to hear you're going through all this.

I've had neurologists who didn't like me asking questions, When one took me off 2 of the AEDs I was on but doubled the dose of the third I asked him why that one and not one of the others. His answer was "because I'm the doctor & you're the patient". Of course that was the last time I saw him.

I think you have to be more assertive & not only not be scared to ask questions but if they act like they don't owe you an answer then just find a new neurologist.

I've known people in numerous countries who've encountered such medical professionals, it's not a Canadian thing and there's no reason for you to accept that behaviour, especially when our insurance will cover any neurologist we go to.

 

[Nakamova]

How frustrating! Since they seem to think they may be Psychogenic Seizures, have they referred you to someone who can help with those? One treatment that has been successful for non-epileptic seizures is Cognitive Behavioral Therapy (CBT). You can read more about that here: http://psychiatry.jwatch.org/cgi/content/full/2010/719/1 and here: http://psychcentral.com/news/2009/05/01/cbt-can-relieve-seizures/5651.html

Whether they are psychogenic or epileptic (and my untrained opinion still thinks they are epileptic), you might find that a therapist/psychiatrist of some sort can help, and become an ally for you in the health care system.

Keep us posted.

 

[julie wishes]

Sounds like you've had a long journey with many neurologists and many hospitals. Bit worst of all it sounds miserable. Im sorry you have no answers. It is usually harder to cope when we don't know what we are coping with. I hope your answers come soon. I think there are some good suggestions here. I say go with your intuition. If you feel there is more going on than they think, don't give up. I understand you are going to try it "their" way and see what happens, but don't give up. Stay strong! and do what MaryK says, surround yourself with the things you love. Good luck

 

[julie wishes]

How exactly do they wean you off keppra?

 

[Nakamova]

The pace of weaning depends on how long someone has been on the med, and how large a dose they are at when they begin their taper. The general rule of thumb for tapering is to go at least as slowly as when you ramped up. Ideally the increments should be very small, and you should wait at least two weeks at each level before moving down to the next one. Unless there's been an allergic reaction, going slowly can't hurt, and it can definitely help by allowing your brain & body to adjust and recalibrate. The faster you go, the more likely there are to be withdrawal side effects, and if you stop too quickly or go cold turkey it can increase the risk of seizures.

 

[LJ-Bain]

Thanks guys.
I know I must sound like a defeatist but when I've smoked through so many neurologists who have come to the same conclusion then you have to wonder if what they say is not true.
I've read my most recent eeg results. I don't have post-ictal sleep even though I rest. They don't question my facial spasms but because eegs don't show nerve damage then it comes across as benign. The lack of abnormal brain waves along with everything else and my skepticism towards psychiatry all point towards an unco-operative patient who shows "la belle indifference". Plus the quantity of seizures I have and the number of hospital visits I have had point them towards psychogenic too.
So I'm not good at talking about my feelings and would rather put on a polite smile points towards me not dealing with issues. I just didn't know I had emotional issues, that's all.

My gp is talking to a neurologist friend of his to see if he'd take me on (neurologist #9 if you include the epileptologist) but I am someone who neurologists are unwilling to work with due to my history. It's not that I don't want to fight it's that I've run out of ammunition.

They do intubate a small number of people showing pseudostatus. So it's not unheard of...just not super common. It simply points towards a poor outcome in ridding myself of said seizures. I am told again and again that no one thinks that I am fabricating them. They are just non-epileptic. And all physiological reasons have been ruled out.

I've been told there is 1 year waiting list for seeing specialists covering pnes.

One nurse told me to look on the bright side and take up running in the meantime. She meant well.

Thanks for the post nakamova. I'll see what they offer in my area and whether or not it is something my husband's benefits cover.

In the meantime I have to wait until August to get my answers and try to stay positive.

When you have been labelled with a mental illness it changes things. It's a whole new ball game I tell you. My gp is willing to try out different things but neurologists can say no, and have said no to seeing me. Doors are closing that cannot be opened and if I fight too hard it solidly confirms their diagnosis.

I've been painted into a corner. I just have to wait for the paint to dry before I can venture out further. I'm just trying to be practical.

I'll keep you guys up to date. I'm sure others have been in this position. It does take years. It's not so unusual. I remember reading about someone whose seizures had to become tonic clonic before she received her epilepsy diagnosis and who also had been diagnosed with ptsd. I don't have ptsd or conversion disorder but they cannot rule out psychosomatic.

They're looking into whether or not I can see a social worker at least since my husbands benefits only cover $500 worth of psychiatry. Apparently that doesn't go far.

I'm not giving up. I'm just being patient. I am quietly being assertive. I'm the turtle you see. It's not worth getting angry about...it will just lead to bitterness.

Wow. As you can see I have no problems expressing myself though! ha ha!

I've been told my "seizures" cannot kill me. So that's something.

 

[LJ-Bain]

How exactly do they wean you off keppra?

I'm on 1000mg twice daily.

They are decreasing it 250 mg every two weeks.

Right now I'll be decreasing to 1000mg in a.m. and 750mg in p.m.

In two weeks I'll do 750mg in a.m. and p.m., then 750mg in a.m. and 500 in p.m.

At least I can still take ativan! Apparently they won't be taking that away. I try not to lean on that too much though.

 

[Nakamova]

I think many neurologists are too quick to label patients as having PNES, and have a built-in bias against such patients once they've labeled them. When I read this article, http://professionals.epilepsy.com/page/e_b_psychogenic_pseudoseizures.html I found myself getting so angry at the neurologists for the way they often view the patient. There doesn't seem to be a consensus in terms of treatment, and the patient can suffer as a result.

 

[LJ-Bain]

It's true nakamova. They don't know how to handle pnes. Just anti-depressants and psychiatric therapy.
Hospitals know even less.
We are left to handle things on our own and create our own coping mechanisms.

One psychiatrist at the hospital questioned why I relate to my issues as fighting a battle.

It feels like war that's all. I'm fighting for a better life.

Thanks for all the supportive words everyone.

 

[MaryK]

Nakamova said

I think many neurologists are too quick to label patients as having psychogenic non-epileptic seizures, and have a built-in bias against such patients once they've labeled them.

I totally agree. It is so easy to attach a label, even it appears to be thought out. This reminds me of how easy it is for teachers to attach a label, i.e. possible ADHD, to a student's permanent record and then a subsequent teacher could have a bias towards this quasi diagnosis, when the first teacher only put possible in the records. I saw this firsthand while I was a one-on-one tutor in a grade school years ago.

I am so glad your GP is going to talk to his friend who is a neurologist. This sounds very positive to me because no one probably knows you better than your personal physician.
I hope he is able to help you 'fight your battle'.

I have attached a video on psychogenic epilepsy, although I agree with Nakamova that you have true epilepsy, untrained opinion. The video is from the Epilepsy Project although the link is on Stanford University's Epilepsy Center site. There is also a box with many, many more videos to watch about epilepsy.

http://neurology.stanford.edu/divisions/e_19.html



Mary

 

[momof3boys]

I'm on 1000mg twice daily.

They are decreasing it 250 mg every two weeks.

Right now I'll be decreasing to 1000mg in a.m. and 750mg in p.m.

In two weeks I'll do 750mg in a.m. and p.m., then 750mg in a.m. and 500 in p.m.

At least I can still take ativan! Apparently they won't be taking that away. I try not to lean on that too much though.

When my neurologist tried to take me off of Keppra, they did it the same way. Every week I went down 250mgs in dose. I went from 3000mgs down to 2500mgs and was stuck there til I saw the PA close to 3 weeks later at that time. It was then, I asked to be put back to 3000mgs, she said that was fine. I had alot of tingling in my hands and feet when I was on the lower dose. once I was put back to the higher dose, it all went away.

I hope things get better for you and you can get some good answers from some good doctors!

 

[acpollard2010]

I have both types epileptic and non had to go to er yesterday like most of us have history there nurses wouldnt come near me even though I had 2 seizures just x rayed injuries

 

[acpollard2010]

I wish they would take me off keppra!

 

[LJ-Bain]

acpollard: It is true that you get treated differently when they view your seizures as psychogenic. They actually don't treat you at all. I hope that you are feeling stronger.
I can already feel my body weaning off the Keppra and my seizures getting stronger and longer. But I'll give this a shot.
Can you ask to wean off Keppra if you hate it so much?
Have you had any luck with any other meds?

 

[Lizzie1963]

Keppra XR below 500mg

We are currently trying to wean my sister off Keppra XR. At the moment she's taking 500mg Keppra XR once a day. We understand that there is no lower tablet than 500mg and apparently switching to regular Keppra is not ideal as they are basically two completely different drugs. We have been advised not to abruptly stop the medication. How have others managed to stop taking Keppra XR without switching to regular Keppra? Thank you...

 

[Nakamova]

It's best to discuss the tapering process with her neurologist. Generally speaking, if she can go very slowly, and in small increments, that will help minimize the risk of any withdrawal side effects. She should be able to go from KeppraXR to regular Keppra by taking the 250 mg Keppra (it is available in this size) twice a day. If she ordinarily takes the XR at 8am for instance, she could take a regular Keppra 250mg at that time, and again 12 hours later. For additional slow tapering, some pills can be sliced in half -- I'm not sure if this an option with Keppra or not. Again, it's best to check with her doctor to get precise information on the best way for her to taper.