Untreated Partial Seizures of TLE

Re: Untreated Partial Seizures of TLE

Submitted by 3Hours2Live on Mon, 2009-03-30 - 03:19

discussion/982511 Untreated Partial Seizures of TLE wldhrt13 03/28/2009pm|41views|9comments March 30, 2009 12:19AM PDT USA juperee Hi juperee, I haven't been able to gain free access to the first two links. Most of the books I have on epilepsy restrict the medically recognized use of the word "progressive" to the progressive myoclonic epilepsies, and cite it as a contra-indication for some AEDs. Panayiotopoulos in a larger book (The Epilepsies, 2005) list the prognosis with the common usage of the word "progressive" as halted by appropriate neurosurgical procedures, and with mesial TLE with hippocampal sclerosis as having a prognosis largely unknown, but initially well controlled with AEDs for the "silent period" until frequently (typically) becoming refractory to medication, with memory and behavioural disturbances possible and that then often "drugs do not work and polypharmacy makes it worse." (p. 389) He also cites that the question of hippocampal epilepsy being progressive (common English usage) is highly debatable and a controversial matter. I was in legal arguments with the government; the government claimed that TLE could not progress to a more severe directly caused condition; the government won. All the AEDs have very common side-effects (near 100%), with ocassional dire side-effects (around 10%). The diagnosis of epilepsy is incorrect as often as 40% of the time or more (every book cites a different rate) (with everything from "faking it" to migraines). While I believe that my TLE has progressed into worse and more severe forms with secondary tonic- clonics due to a lack of timely AEDs, much of the medical literature and legal decisions do not support my belief. Medicaid, with Medicaid doctors and California budgetary concerns, has chosen the AEDs available to me; in fact, my last Medicaid doctor refused my request for renewal prescriptions of Keppra, which I believed was working best for me. Many AEDs are used to treat migraines, without the stigma and legal problems of epilepsy, and if the patient has the freedom of choice with medical providers, many hardcore philosophies of "by the book" treatments might be avoided. But, I'm no medical professional.

Re: Untreated Partial Seizures of TLE

Submitted by Stefanie505 on Sun, 2009-11-15 - 11:15

Jupeeree- I just wanted to thank you for your insights from several months ago. I had a recurrance of TLE after 20 years of remission. I was treated with Tegretol years ago and had really YUCKY side effects, so I'm hesitant to take meds again but certainly don't want the seizures to worsesen (no generalization so far, thank God).  The articles you link to were very helpful to me. I've been scouring the internet for information on risks of going untreated.

I'm having a difficult time, emotionally, accepting that I need to be treated again but it makes more sense now that I understand that it may be a progressive "syndrome". The other thing is that my current experiences are "tolerable"  and mild so if I could be certain they would never get worse I may choose to live with them. Now I understand they could get worse.

I've been prescribed Keppra but haven't been able to bring myself to take one yet (2 days since I got RX filled). LOL  I agree that all the people who do well with Keppra have no reason to complain so we more than likely hear from those who are having a bad experience. I also know that the newer medications are better tolerated.

I may wait to start the medication until after the EEG (in two weeks). I worry that the medication will mask the problem, but then I worry that I'm at risk for a generalized seizure so I keep going back and forth. 

So, thanks for helping me work this out.