Medically Refractive?

[Zoofemme]

Those of you who have been told this...how did you feel when you heard those words and how do you deal with it?

 

[Bernard]

If medicine (ie. AEDs) won't work, maybe it's time to looks for a non-medical solution (diets, NFB, CBT/neurobehavioral techniques, etc.).

 

[Endless]

My epi has labeled mine refractive. That news just exhausted me, and made me sad. Kind of resigned to my fate in life, and I started to reimagine what my life would be like from this point on.

Things may be changing for me soon, though. I may have psysiological non-epileptic seizures. It looks like I may have PsudoTumor Cerebri (also called Idiopathic Intracerebral Hypertension or IIH). It's cerebral spinal fluid (CSF) that is too high and puts pressure on the brain. It mimics the symptoms of a brain tumor, but there's no tumor. It may be causing my seizures. No AED in the world would have stopped those. So, if this turns out to be the case, then solve the IIH, solve the seizures. But my neuro also thinks multiple head injuries may be playing a part here, too. So I have no idea what's going on.

If your doc hasn't explored every possible cause for your seizures, find a doc who will. Run every test known to human kind. In the end a lumbar puncture found the critical puzzle piece for me. Your doc may not find anything, but at least you will know you've looked into everything.

 

[Zoofemme]

SHe said technically I am medically refractive, whether i want to hear it or not. I have been on 6 different meds and have never gone more than 18 mos without a seizure. Technically I am not even seizure free right now because I still have the simple partials She was going to send me to the epilepsy center but she backed off because she doesn't want to add any more doctors to he mix right now.

 

[Endless]

Yes.... I understand. right now I haven't gone more than 4 weeks without a seizure, and that was only once. I've had a few times with a week seizure free. Really, it's been exhausting. I want it to be zero. I'm hoping treatment of my IIH will get it way, way down, if not to zero.

 

[Crystal11]

Several moths ago I was diagnosed as refractory by my neurologist.
We talked about possible surgery and testing that is needed before it. He asked if I was interested in having it and I said no. I already had 8 surgeries for various things throughout my life. It was already hard being born three months early as twins- we both died several times due to complications but we survived.
Anyway- I've tried Keppra XR, Lamictal XR, Tegretol XR, Dilantin and Zonegran. The Trazodone and Butalbital work well for my migraines and some are seizure-related.
The combination I'm on are those two and for my seizures I'm on Keppra XR 2000mg and Lamictal XR 400mg a day which works pretty well. After having up to 20 seizures a day (complex partials 45sec) and 2 to 4 1-3min complex partials a month we had to find something that works! These two meds seems to be doing good although I have a few seizures here and there which is nothing to me with having that many before meds!

I now see an Epileptologist or epilepsy specialist which is a totally different experience than a neurologist that deals with many conditions.
My Dr only focuses on Epilepsy cases that are complicated or need more attention than a regular neuro can give to the case.

I attend Epilepsy Support Group here in Austin and its very helpful to mention new discusions and neuro visits with a group that all have Epilepsy and are dealing with similar situations. Some are dealing with more than others- but its great to have people other than family to talk to.
Its held first Monday of each month.
I definitly talked about my feelings to the group after I was dx with refractory epilepsy.
I felt sad but frustrated at the same time. I've been dealing with seizures since 6 and didn't really understand what i was experiencing until i was older. I started treatment at 13 then again at 22.

So far so good even though I still have seizures just not as many.

I go back for my next Epi visit on Feb 11 and hope to learn more and talk about my seizures and migraines more and see what can be done to make my life alittle easier.

I hope everyone is doing well!
Take care
Crystal

 

[sbncmo]

Well, I haven't been told I'm refractal YET, but I wouldn't be surprised if that isn't what ends up happening. I've been on 13 AED's. Most of them, I have had bad reactions to. A couple of them just didn't work. I've had them one at a time or in combinations, they just don't work (what few I could take). I'm on Vimpat now & it was just increased, but it, like all AED's, only work on certain types of seizures. I have 8 types (thankfully not tonic-clonic) & that's just too much to deal with in my opinion. Add to that the many other health issues I deal with, which also have the same problem of bad reactions or no response to meds, I'm fed up with it. (On a pain scale of 1-10, my daily pain is 8-10 & nothing helps it.)

If I do receive the determination from my epileptologist next month that I am refractive, I don't think I will even care. It wouldn't change anything in what I've been dealing with all my life. If anything, it might give me a sense of relief to know that everything that could be done, has been done & I can just go on with my life the best I can. I know that others will respond differently. Some will become depressed about it, some angry. We are all different & must deal with this the best we can. And talking about it can be one of the best ways to deal with it.

Shelia

 

[Zoofemme]

There was some discussion abou surgery in the very beginning...my neuro knows where my CP seizures originate from but it got pulled of the table. I think the focal point is too deep? It is close to my "smell" center and she thinks that is what kicks off the simple partials too? I've been on Klonopin, Dilantin, Tegretol (reg and XR), Trileptal, Lamicatal and Topomax...Im on the last two right now. SHe had me stop keeping a seizure diary becaus it was stressing me out too much. I refused to see a psychiatrist or therapist because I already have too many doctors. I literally have a doctor appointment or 2 every month, its ridiculous. I have a PCP, neurologist, orthopedic specialist, rheumatologist and an opthamologist. The neuro decided to hold off on the epileptologist, although if the opthamologist doesn't help then she is going to call in a neuro-opthamologist *sigh*. I'm trying to process everything that all of these doctors keep throwing at me and then basically I'm told "ya know, we can keep you on meds but basically you are always going to have seizures". TH mere thought of someone stirring around inside my rain makes me shudder...I've already got cognitive problems and I'm scared to death of those getting any worse!

 

[Endless]

Now after being labeled refractive, the docs may have juar found a root cause for my seizures - idiopathic intracranial hypertension (in addition to the TBIs). Just had the lumbar puncture to test for it a few days ago. The IIH is something that's treatable (somewhat). I guess the moral of the story is to not give up. My 4th neurologist (and umpteenth doctor) figured it out. I had resigned myself to a lifetime of seizures. It still may be that way, but I have a glimmer of hope. So when you don't want to be stuck with one more needle or irradiated one more time, let 'em do it. They just might find something.

Surgery... doesn't sound great to me, either. It's helped lots of people, but it's still really scary. Do lots of research and take your time in deciding. You don't have to be in a hurry to have surgery. It's a big decision and once it's done you can't take it back. Especially take time to find the best neurosurgeon in your area. Don't settle for second best, or 20th best, for that matter.

 

[Zoofemme]

The one thing I got lucky with is my neuro, that I won't deny. She does go above and beyond when it comes to her patients or at least when it comes to me at any rate. I can call her at anytime and she WILL call me back. She will either straighten it out on the phone or have me come in. SHe has tolerated me giving her hell even, oy. We have 3 Level 4/5 Epilepsy Center within 2 hours of us and she trained at one and has practised at all of them before she went into private practise. I have confidence in her...I just don't like nor accept what it happening to me very well. Actually, I don't accept it at all and I dig my heels in. She's a great doctor, I'm a lousy patient.

 

[Endless]

I'm a lousy patient, too! We should form our own club, like the "midnight club."

Any time my neuro wants to do a test I give him hell about it, refuse to do it, and when he finally talks me into it I go kicking and screaming. I guess I just hate tests. Or maybe it's that I'm scared of them for whatever reason.

I AM good about following medication orders, though. Although I'm known to switch around dosages without calling in first.

 

[Zoofemme]

Yeah...I was given a "stern warning" about self-medicating because I took an extra anti-depressant a couple of times when even I realized I was going over way to many boundaries. I could have swore she told me I could in that case since I was on the lowest possible dose you could be on. Apparently not

 

[Endless]

I keep adjusting my anti-seizure med's dosages. My epi has learned to embrace this and just gives me a dosage and says to adjust it until it's right. I do call in, though, if I am about to go outside the boundaries he's set.

I've learned my lesson on the tests, though. I resisted the lumbar puncture and pretty much refused to do it. One of the members in here talked me into it, and I thank him profusely. If he hadn't I wouldn't have known about the fluid pressure thing, and my loss of vision could have become permanent.

So I'm cured from resisting what my neuro says. "Whatever you want me to do, doc."