Intractable

[huskymom]

Okay, so the doctor lays Intractable on me. Supposedly means that my E is not controllable by meds for any length of time. Yippee! (sarcastically said) Anyone else Intractable??

 

[sbncmo]

Hi huskymom. I haven't been told that in that specific term, but 2 weeks ago, my neuro relayed a message to me thru his nurse that since no AED will work for me (I've tried them all), he didn't feel he could treat me anymore or do anything more for me & he is sending me to an epileptologist. Then last Friday, I called to see what was taking so long to get me into the epi & asked about my appt with my neuro at the end of the month & the nurse said he does still want to see me while I'm seeing the epi. So I don't know what the next step is.

So what did your doctor say comes next for you? VNS? Anything?

Shelia

 

[Cint]

Yes. ME. I've had epilepsy now for 35 years, had SP, CP, & TC seizures, tried 11 drugs, had a LTL, 2 VNS surgeries and still have an occasional breakthrough seizure. I was told mine was intractable after the failed lobectomy and they realized I couldn't have another brain surgery and the VNS doesn't control seizures either. I've been seeing a specialist (epileptologist) now since 1992.

Lots 'o fun, huh?

 

[epileric]

I don't remember any doctor or neurologist using the word "intractable" on me but if it was used it was after it had become pretty obvious to me, otherwise I'd remember.

 

[Endless]

Hi, Huskymom,

After trying 5 AEDs, my doc has labeled me "possibly intractable." I guess he's waiting until we run through all 25-ish. (Actually, I'm hoping Lamictal is the magic one. Am still ramping up)

 

[huskymom]

Thanks everyone for posting. I have been using several different drugs in all kinds of different combinations and still have them. Yes, the doc did mention vns, but I am not going that route until I am so bad I can't stand it anymore. I am still able to work most of the time and get by pretty good, so that is way off in the future. I am just glad to know that I am not the only "special" one :woot:

 

[ColmanMac]

I'm not even sure within which context it's meant- My Consultant would probably deem me incapable!!
Col

 

[stephk]

the specialist hasnt told me that directly, however in a letter to dds she mentioned that word... eh i am in denial though

 

[huskymom]

Col,

special as in unique

 

[sbncmo]

I've been wondering. Most people respond well to AED's. There is a small group of us that don't - so I guess we are unique. Anyway, my thought is could there be more that we are dealing with than ep? For instance, I have CFIDS. I'm called a textbook case since I have every symptom but two. Part of CFIDS is great difficulty with meds - being sensitive, allergic or intolerant of most meds. For me, taking some meds is like taking a placebo, others cause almost instant allergic reactions. I can't even drink alcohol or take liquid med in an alcohol base - my throat swells shut.

I'm not trying to be a doctor here or suggest this is what everyone else is dealing with, but I wonder why some of us have so much trouble with meds when others respond so well. Has anyone else thought of the possiblity that something else is interfering with their AED's?

Shelia

 

[Nakamova]

That's a great question! There's known to be a genetic component to med sensitivity -- for example, research indicates that Asians are often more sensitive to meds, due to differences in the 6 enzymes which metabolize most medications. (Genetic factors determine the level of these enzymes in the liver, so if you have too much of the enzyme, you process the medication too quickly, and if you have too little of the enzyme the medication builds up in your bloodstream potentially causing adverse reactions or side effects.). So it's possible that other ethnicities or sub-groups are susceptible as well.

 

[sbncmo]

Nakamova, I find that information very interesting. I'm not Asian, just plain caucasian, but about 6 months ago when my new neuro started me on AED's that I hadn't tried previously, my liver enzymes skyrocketed. My PCP thought it was my cholesterol medicine & stopped it. The enzymes came down slightly, but when my AED was changed, the enzymes went up again. My PCP suggested milk thistle to help reduce the liver enzymes, but after several months, we haven't seen much improvement. I've always had my cholesterol checked, along with liver enzymes & they weren't a problem before. Maybe it is the type of AED's my neuro tried me on. I know he expressed concern when my ALT's went up, because the next AED he wanted to put me on was known to elevate liver enzymes - which it did.

I don't know if CFIDS affects liver enzymes or not. But there is definately something about it that affects medications I take. It would seem there is some connection with all of us who are extremely sensitive or allergic to meds or don't respond to them at all. I know my allergic reactions to meds happen very quickly, sometimes with just 2 doses.

Maybe we should get researchers to look into why some epileptics respond well to AED's while some don't. There has to be some kind of connection.

Sheli

 

[Cint]

I'm not trying to be a doctor here or suggest this is what everyone else is dealing with, but I wonder why some of us have so much trouble with meds when others respond so well. Has anyone else thought of the possiblity that something else is interfering with their AED's?

Shelia

My problem was the medication(s) didn't control the seizures. The drugs I had the hardest time with were phenobarbitol- an allergic reaction, Felbatol- severe migraines, and Sabril- made me psychotic. My question has always been why were my seizures harder to control than those of other folks? Why didn't having part of my brain removed work? What the H***L happened?

Another site explaining refractory seizures:

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

 

[Endless]

There has been some research. But you are right - there hasn't been nearly enough. Here are some articles.

Genetics of antiepileptic drug resistance

Defining the clinical role of pharmacogenetics in antiepileptic drug therapyDefining the clinical role of pharmacogenetics in AED therapy

Diminished Response of CA1 Neurons to Antiepileptic Drugs
in Chronic Epilepsy

Gene Variants Explain Patient Differences in Antiepileptic Drug Responses

Clinical factors and ABCB1 polymorphisms in prediction of antiepileptic drug response: a prospective cohort study

ABCB1 polymorphisms influence the response to antiepileptic drugs in Japanese epilepsy patients.

Brain Homocarnosine and Seizure Control of Patients on Gabapentin or Topiramate

Editorial: Teratogenicity of antiepileptic drugs

And then check THIS out - the wave of the future - genetic testing to tailor drug therapy for each person to maximize their response to the AEDs.

Patient-tailored antiepileptic drug therapy: predicting response to antiepileptic drugs

Genetic Biomarkers of Drug Response: Carbamazepine
and ValproateTreatment for Epilepsy

And just for fun, if you've ever wondered how your AED works in your brain, here's the best article I've seen: Mechanisms of Action of Antiepileptic Drugs

 

[Endless]

P.S....

Cint,

I seem to have more side-effects than other people, too. I have no idea why. I'm that way with all drugs, not just AEDs. I'm allergic to a bunch of them, too (anaphylaxis). Wish there was an answer to all of THAT.

 

[sbncmo]

Endless & Cint, it's exactly the same with me - the medicines simply not working or more side effects & allergies than anyone else with every type of medicine & my doctors sitting here saying "I'm sorry, there just isn't anything else to give you. We've tried everything available singularly & in combinations, but nothing works or you have severe reactions." I've heard that soooo many times. Then comes the boot - "I see no reason for you to come back since I can't do anything for you. Sorry."

I looked at all the references you listed Endless. I wish I understood what they were all saying. It was Greek to me. However I did catch in several of the articles that ~30% do NOT respond to AED's. That's a large percentage. So there are a lot more out here just like us than I ever thought.

I could never understand the problems with medicines. When someone on another website suggested I look up CFIDS & it described me to a T, I just chalked up all the medicine problems with it. Of course I realize that it could be something else, something wrong with the genome or whatever it's called. It's odd that no one else in my family has these same problems.

I figure if I see this new epileptologist & he says there is nothing medicine-wise, that I'm "Intractable", then so be it. I'm not about to let anyone remove part of my lobes & I'm not too sure about VNS - I'll have to learn more about it. But I'm not going to jump ahead of things. I already know there are no meds available for me, but I'll wait to what the epi has to say. It's frustrating, but really, what can we do about it?

Shelia

 

[Ann T.]

HuskyMom:

Hi. I figured that I was intractable many suns & moons (and 12 meds!) before 95% of my M.D.'s did. I've not lost hope, but it's just starting to fade. What I can't stand is when doctors throw in the towel before I do, and doctors who give me the short shrift @ my appointments. When it comes to meds & me, I've noticed that my meds seem to plateau about a yr to 18 months after I begin them. They work well for 18 months, then it's back to Square 1. I'm worried my Vimpat's beginning to plateau, but I don't want to increase it, because it gives me nightmares (but not every night), or it makes me too sick to work. I agree, it is frustrating, but do try to look on the sunny side whenever you can, okay? Take care!

 

[huskymom]

Thanks Ann! I am one of those who can take the medication for awhile and it will seem to work, but only for about two months. Then back to the drawing board. I don't think that I fall under the other group that is sensitive to medications. I don't notice much in the way of side effects other than tiredness, but not to the level that I can't function. The only allergy that I have is to anything with codine. Makes me toss whatever is in my tummy! Not fun. At my next appointment we may switch med combo's again........

 

[Cint]

I figure if I see this new epileptologist & he says there is nothing medicine-wise, that I'm "Intractable", then so be it. I'm not about to let anyone remove part of my lobes & I'm not too sure about VNS - I'll have to learn more about it. But I'm not going to jump ahead of things. I already know there are no meds available for me, but I'll wait to what the epi has to say. It's frustrating, but really, what can we do about it?

Shelia

I only had my lobectomy because I was having 4-5 CP seizures a day, medications weren't controlling them. After the lobectomy, I was seizure-free for 14 months and they came back worse than before, CP's and secondary generalized seizures. That is why I have the VNS.

Once upon a time I, too, said I would never let anyone remove part of my brain, but when you want relief, you may change your mind if things get severe.

I bet the epileptoligist will more than likely suggest the VNS to you, since you can't take meds. What type of seizures do you have and how many a day?

 

[sbncmo]

Hi Cint,
At this point I have 8 different types of active seizures. CPS - usually 1 or 2 a week. SPS - all 4 types (motor, autonomic, sensory & psych), which vary in frequency. The sensory I have at least 3 times a week. Myoclonic is the most frequent. I had two days in a row where the myoclonics lasted about 15-20 seconds, hitting every 1-2 minutes apart. The second day was more intense than the 1st day. That was earlier this month. I had that happen again one day last week. Usually I have 2-5 a day, but some days none. I have Tonic seizures about twice a month. And I have Atonic/drop seizures - maybe 1 a month.

When I was taken to the ER a couple of weeks ago, I started out with CPS, followed by an autonomic SPS, then a motor SPS. When I got the the hospital with the CPS, admitting was asking me questions & I couldn't understand what they were saying & couldn't respond, so they got me to a bed & changed ino a gown without my being aware of it. My sister took me & gave the staff information from my wallet. I'm sure the seizure itself didn't last that long, but I was totally unaware of anything for a very long time. It actually took me 3 days to recover from the series of seizures.

I guess the wide variety of seizures is what makes me reluctant to have brain surgery & I'm just not that sure that a VNS will help. But I'm trying to keep an open mind since medicines just don't work. I need to be open to all possiblities, but it's scary. But then, the seizures are scary too. I guess part of my reluctance is reading about ones that have had these procedures done, only to have the seizures return, so I think "what's the point in doing it in the first place?" Anyway - no decisions until the time comes.

Shelia