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Does Epilepsy Get Worse With Aging?

Fri, 03/19/2010 - 01:29
Hi All, First, I should explain that I have been diagnosed nearly twenty years ago with JME, and that it originates in my Occipital Lobe. I experience tonic-clonic, myoclonic jerks, as well as absence seizures. I stopped taking my medications regularly in October last year - and about a month ago - actually, yes - exactly a month ago, had a tonic-clonic. I will not be skipping out on meds because they're expensive anymore. Since I've recovered, and by now my meds are up to level - I am still having myoclonic jerks as well as some issues with my eyes (my doc, who is one of the best - thinks they are likely myoclonic jerks in my eyes due to the occipital lobe origin of my epilepsy). So we've upped the ante and I'm now taking an extra dose of the meds. I went from taking 100mg Zonisamide + .5mg Klonopin in morning and at bedtime (worked like a charm for YEARS) - to now having to add a midday dose of 100mg Zonisamide. It's only been two days of the extra dose. Today, I experienced my first myoclonic jerk in my right hand ever (and they've been happening there the better part of the day) - they always happen on the left. Then in the afternoon, I had a weird visualization (like when you rub your eyes and see bright floaters) of bright lines and shapes - all the while smelling something yucky. I couldn't shake the vision and at the same time I was aware of my surroundings - but having my eyes open was "painful". I'm just wondering if this was a seizure? And why the hell am I having more now than ever? I used to be a serious party girl - you would think I would have had them then?! Does anyone know - as we age can/should we expect our epilepsy to get worse/decline - seizures to escalate or move to other parts of the brain? Thanks for any stories/info you can share! Tara

Comments

Re: Does Epilepsy Get Worse With Aging?

Submitted by tara michelucci on Mon, 2010-03-22 - 10:48
Tadzio, You seem very knowledgeable, and I'd like to hear more from you. I have JME that originates in my occipital lobe. I think it's worse around my period, but not catamenial epilepsy as my neurologist has never called it that. He calls it JME with Primary Generalized Epilepsy. I think that's right. I also experience depression/anxiety - both of which I can typically control myself; but which are highly intensified in the weeks immediately following a tonic-clonic seizure, and require medication for. Can you elaborate on your first paragraph, as well as kindling and the depression you speak about in the third paragraph, without worrying about the controversies. I'll do my own research into that - but like I said, you seem knowledgeable and a great starting point for assessing this. *Still waiting to hear back from my doc as well. Thanks much for any more time you have to offer, Best, Tara

Re: Does Epilepsy Get Worse With Aging?

Submitted by 3Hours2Live on Wed, 2010-03-24 - 01:50
Hi Tara, I re-read the Juvenile Myoclonic Epilepsy (JME), (aka Janz Syndrome), section in "The Epilepsies" by C. P. Panayiotopoulos (2005), pp. 308-320, and much of the information appears incompatible to 20% exceptional. Firstly, JME is an Idiopathic Generalised Epilepsy (IGE), p. 271, and not a focal epilepsy. "In occipital epilepsy, the deviation of the eyes is usually pursuit-like or tonic, rarely clonic.......Conversely, ictal eye movements of extra-occipital origin are more violent and look unnatural....symptomatic visual seizures more frequently progress to other exta-occipital seizure manifestations and mainly temporal lobe seizures" p. 429. Secondly, "One-fifth of patients describe their jerks as unilateral, but video EEG shows that the jerks affect both sides." p. 309. "All seizures are probably lifelong, though improve after the fourth decade of life." But, "Patients with all three types of seizures (JME, GTCS, absences) are more likely to be resistant to treatment." p. 315. Thirdly, "Zonisamide is also a broad-spectrum AED, but its role in JME is largely unknown and probably weak." p. 320. Klonopin (clonazepam) "is one of the most effective anti-myoclonic drugs, but clonazepam alone may not suppress and may even precipitate GTCS." "Clonazepam should be given in small add-on doses.....when myoclonic jerks persist and are troublesome despite adequate monotherapy with another broad-spectrum AED." "Levetiracetum fulfils all expectations as probably the best new AED in the treatment of JME...." p. 317. Fourthly, "Accepted practice for the management of 'epilepsy' is often inappropriate in JME" (IN BOLD RED) p. 315. "Withdrawing treatment in JME is often an erroneous medical decision. More than 80% of patients will relapse." Migraine, with or without headache, aura of bright floaters, lines, various shapes, are common, while sensory "cross-over" with migrainous olfactory hallucinations are infrequent (about 1% to 13% of clinic patients). "Migraines" by Robert A. Davidoff (2002), p. 53, pp. 68-70. (limited preview on books.google). The general rule-of-thumb is, if it lasts longer than 5 minutes, blame a migraine, if it lasts less than 5 minutes, suspect a seizure. Panayiotopoulos weighs most toward seizures: "The concept of migralepsy and its synonymous intercalated sezures or of an epilepsy-migraine sequence needs re-evaluation based on accurate diagnosis. In most instances, it is seizures imitating migraine." (In red) p. 428, Panayiotopoulos. The Limbic System is the most prone to kindling, and things from high fevers, injuries, GTCS, TLE, etc. can damage and/or further kindle damage in the Limbic System, resulting in larger and larger ranges of neurological impairments (the Limbic System and the Temporal Lobes somewhat over-lap, depending on which schools of neurology are involved). Limbic based depression has the characteristic of being "one-sided," with some seizures resulting in episodes of Limbic based depression, and other seizures eliminating episodes of Limbic based depression (which somewhat mirrors the basis of "old-school" electro-shock therapy to treat severe depression). The book "Behavioral Aspects of Epilepsy" by Schachter, Holmes, and Trenite (2008) has a moderate section on kindling, and one chapter focused on the notion of "Forced Normalization," but the book leans toward psychiatry more than neurology. books.google gives 32 results in the book for "kindling," and it gives 21 results for "Forced Normalization." The book Trimble, M.R. and Schmitz, B. (1998) Forced Normalisation and Alternative Psychoses of Epilepsy, Wrightson Biomedical Publishing: Petersfield is available with limited preview at amazon.com, with the chapter by Robertson, M.M. (1998) Forced normalisation and the aetiology of depression in epilepsy, In: Trimble, M.R. and Schmitz, B. (eds), Forced Normalisation and Alternative Psychoses of Epilepsy, Wrightson Biomedical Publishing: Petersfield, pp. 143167. An "old school" article about "Forced Normalization" is at: http://www.asnp.ch/pdf/1998/1998-06/1998-06-064.PDF A more "new school" article about depression and epilepsy that cites Robertson and Trimble/Schmitz is at: http://tan.sagepub.com/cgi/content/abstract/2/5/337 By exploiting the "handedness" of the Limbic System I can usually eliminate post-seizure depression by "stoking" sensations of intense hatred, which is on the opposite side in the Limbic System than Limbic based depression. Most aspects of Pavlovian Conditioning and Aversive Conditioning is also based in the Limbic System, so there should be a way to exploit them in controlling more aspects of epilepsy too!!! The novel/film "A Clockwork Orange" based "The Ludovico Technique" on a satire version of Aversive Conditioning, but much like a strong PTSD, such conditioning is strong and long lasting (maybe too much so, as I wonder if seizures don't often inadvertantly result in such conditioning, giving the problems of one branch of PNEAs once seizures are in fact otherwise controlled). Tadzio

Re: Does Epilepsy Get Worse With Aging?

Submitted by abcfruman on Tue, 2012-02-28 - 21:24
Hi Tadzio, You know when ones Epilepsy is getting worse when I had to read your post 6 times.lol.Some great info. Im going to get some books..I had the strangest thing happen last night. First my info..42yr old woman. Diagnosed with absence seizures at 8yrs old. Now 42..I started moving on to bigger not better seizures at 15yrs old. I have absence, tonic-clonic, ( gran-mal), myoclonic, complex partial, physcomotor and 1 other I forgot.. Im on 3300mg Felbatol - 600mg Lamictal - 3600mg keppra and 1. mg of clonazapam. Generalized idiopathic epilepsy. Had VNS put in..Messed up my heart so I had it taken out.. So the odd thing that happened was I woke up during the night..( I do get double vision, usually at night )..I had double vision, fell onto the floor and my entire body was jerking, ( violently ).I was aware, awake,couldnt walk obviously. And it lasted 10-15 minutes. I had no pain , migraine after..What on earth was this. I had made an appointment with my neuro. awhile ago and see him tomorrow but afraid to tell him..I dont like him at all. Havent seen him in 3 years, he brushes all I tell him off..Although I will tell him, HAS anyone experienced this.. It scared me as I was out of control. At least with the tonic-clonic Im not aware..Kind of freaked me out, has anyone experienced this???

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