Refractory epilepsy

[RainbowBrite]

I was wondering how many people on CWE have refractory epilepsy? I'm on 3 AED's and my neuro is thinking it's PNES because his belief that it could be refractory E is so low. He thinks that I would have relief by now if "they were real epileptic seizures". How did you find out if one of your AEDs was making your seizures worse?How do you measure how helpful a new med is?(I know in general terms, I was looking for more personal experiences on things like how long you waited to give the med a chance,etc.) Does anyone have any info about seizure medicines actually increasing the number of seizures one hasonder:? I feel like my neuro doesn't believe that a medicine could make them worse, only that it would either help or it wouldn't. I'm so confused!!

 

[epileric]

Even with medications I still have partial seizures every day or so, However without meds I get T/C seizures. Does that make mine refractory?

 

[RainbowBrite]

"Refractory epilepsy is established when there is inadequate seizure control despite using potentially effective antiepileptic drugs (AEDs) at tolerable levels for 1–2 years, "
I don't think all neurologists follow the "1-2 years" part necessarily

 

[Cint]

I have had seizures for over 30 years now. Initially, I was having TC and CP seizures before medication, but when I started meds, I was only having CP's for awhile. They increased and gradually became worse so tried different meds, to no avail and had a LTL. After the surgery, I was only seizure free for 14 months, and then the seizures were worse then before. I started having TC's instead of CP's and we started trying more drugs and nothing worked for me. It seems like some of the AED's I was only on for maybe a year, if that long, plus I was on some heavy-duty anti-depressants at the time, also, so that added to the problem. Then we tried the VNS, and have it on the "rapid cycling" and I still have a break-through seizure on occasion. For me, I believe the surgery made my seizures worse (refractory).

 

[Cint]

From:http://www.epilepsy.com/epilepsy/seizures_refractory/reasons

Reasons for Intractable Seizures

The diagnosis is wrong
The treatment is wrong
The seizures do not respond to the best diagnosis and treatment

Mine being because of the last reason. The seizures didn't respond to the treatment.

www.epilepsy.com

True Intractable Epilepsy

True intractable epilepsy is the metaphorical equivalent of the bar across the front door. Difficulty controlling seizures can result from seizures that are “too strong” to be controlled by medication, or by intolerance of medication. All medications have potential side effects, but some people experience them with greater frequency and intensity than do others. This can be in the form of allergy or of non-allergic intolerance, for example, severe stomach upset from medicine. It is distressing and discouraging to break out in a rash to a half-dozen AEDs in a row, and it limits therapeutic options. Seizures that might be easy to treat with medicine become hard to treat when the best medicines are off-limits. Multiple drug resistance is a condition in which people are resistant to multiple medications. Some people with multiple drug resistance have a type of metabolism that quickly inactivates or isolates drugs, causing them to be less effective.

Another common experience in treating refractory epilepsy is “honeymooning,” or as it is officially known, developing medication “tolerance.” In this situation, a new drug works for a few months and then becomes ineffective. The cycle repeats with each new medication. Such patients can end up on a stressful “rotation diet” of different medicines. It is another form of drug resistance.

 

[Endless]

Hey, Rainbow,

According to my seizure journal my seizures get worse when I'm on a low dose of AED's. They get better on higher doses. I'm down from 2-3 a day to about 1 simple or complex partial every 1-2 weeks. I have mild auras more often than that.

 

[Dutch mom]

My 11-year old son has refractory epilepsy (called the Lennox Gastaut syndrome.) None of many different combinations (>10 AEDs and benzo's) did help to control his seizures (tonics, clonics, tonic-clonics, atonics, myoclonics, absences.) For over 6 years he's on the ketogenic diet -without any AEDs or benzo's. The diet has improved his EEG >70% and a significant seizure reduction (70-80% less seizures.) The ketogenic diet often is succesful for kids with refractory epilepsy and kids with malignant child epilepsy syndromes.

 

[Crystal11]

I went to my neuro and he said mine were refractory since taking two at a time wasn't controlling my complex partial seizures. One med stopped working and we added Lamictal XR. I told my doctor that I would not be on three meds even if it means having a few seizures here and there. He reviewed my EEG and asked if I wanted to go through
surgery testing etc.


I take Keppra XR 3000mg and Lamictal XR 400mg and it seems to be helping a lot.
I hope things get better soon.

Take care

 

[RobinN]

I don't know if Rebecca's are refractory. All I know is the increase in seizures was not worth the side effects, in order to find out if an increase in meds would be better. My instincts took me in the opposite direction, and it seems to be paying off.

I have always wondered if the changes in brain function when on medication, make it impossible for most to reduce the mg. successfully. If seizures cause kindling over time, then what does the medication do to brain function long term.

Just wondering...

 

[Bernard]

I was wondering how many people on CWE have refractory epilepsy?

Most old timers on epilepsy forums could be considered as having refractory epilepsy. People who have excellent seizure control to the point that it's an afterthought generally don't spend much time in epilepsy forums.

How did you find out if one of your AEDs was making your seizures worse?

Keeping a seizure diary/journal to track seizure activity helps when adding or removing a treatment. With some treatments, the effects are immediate and obvious.

How do you measure how helpful a new med is?

Same as above.

(I know in general terms, I was looking for more personal experiences on things like how long you waited to give the med a chance,etc.)

Generally need to give a med a couple of weeks for your body to adjust/adapt.

Does anyone have any info about seizure medicines actually increasing the number of seizures one has?

Yes. There are countless examples posted in the forums. Everyone reacts to meds differently. One person's wonder control can be another person's seizure exacerbating nightmare.

I feel like my neuro doesn't believe that a medicine could make them worse, only that it would either help or it wouldn't.

If he believes that, he would be wrong.

FYI: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

 

[Endless]

:agree:

I agree with Bernard. Don't lose heart, though. There are LOTS of anti-siezure meds now. Also, I wait longer than a couple of weeks. For me it's a few months at the new dose after I'm completely ramped up on it. It takes my body a couple of months on the theraputic (right) dose to make sure.

Hang in there. And maybe find a new doc.