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tara michelucci

Does Epilepsy Get Worse With Aging?

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?

Hi Tara,

I admit I really don't know the answer, and I'm pretty sure doctors don't either, there's just no rules with ep.Given how sensitive brains are, there's always the possibility that your time of meds may have changed things.

The one thing I do know about is the hormone issue with females- again no set rules, but the impression I get from a lot of reading and forum boards is menopause can make seizures better, worse, or stay the same because of changes in hormone levels.

I asked my neuro this a few weeks ago, "can seizures cause more szs", ie are they going to get worse since they've been uncontrolled for so many years. He's pretty adament that isn't the case, but I'm not completely sure I believe him. Mine have definately got worse overall in the last few years but there may be other factors at play there.

So sadly it really is a waiting game for us.

kay

Re: Does Epilepsy Get Worse With Aging?

I am often wondering about this too. I never had epilepsy when I was younger and it did not start until late 20's. I am now getting more of them and the intensity is worse.

I have an old brain injury that is causing issues too.

I don't know myself and often wonder if it can get more intense or worse with age. It seems here a lot are saying yes.

Re: Does Epilepsy Get Worse With Aging?

I also have JME. I started having myoclonic jerks at about 15 but I didnt know thats what they were. My older sister was diagnosed with JME at the age of seventeen. I had my first and only tonic clonic seizure three years ago at the age of 37. I dislocated both of my shoulders and fractured my left scapula. I was put on dilantin and then switched to depakote. The myoclonic jerks that I had previous to my tonic clonic seizure were pretty severe but I did not have them that often. Since I had my breakthrough seizure as my neuro calls it my myoclonic jerks are daily but less severe. I have them many times a day and in different extremities. For me my epilepsy has gotten worse with age.

Re: Does Epilepsy Get Worse With Aging?

Tara, what you're currently experiencing is most likely your body trying to adjust to that added midday dose of Zonisamide.

And Kay, some of those "other factors" can be the amount of medication in the body staying in the body for a longer period of time as we grow older. So an increase of seizure frequency or epilepsy appearing to be getting worse, might be side effects from the medication staying in the body for a longer of time.

Bruce. *I'm not a doctor, but the information I share is what I've learned and experienced due to having epilepsy myself.

Re: Does Epilepsy Get Worse With Aging?

Thanks to you both. I appreciate your input and hope there are others who can share further insights. I'm fairly well-versed in med side effects; but the meds (even with the new dose) aren't completely working as well as they used to (100% effective before) - and now, I'm having other kinds of seizures (the smelling things, the visual hallucinations, etc.)

Thanks again - I also wrote my Neuro because I always err on the side of caution and trust his opinion. One of the best epileptologists in the field...unfortunately, i now live in another state - so...

Re: Does Epilepsy Get Worse With Aging?

Tara, I can speak from experience that menopause improved my seizures. I went through medications after medications and all of them were just like drinking water. They never improved my seizures. I was always the type that hormones played a part in how many and how severe my seizures were. I couldn't take any type of hormone or any pills with hormones in them. I could always tell when it was "that time of the month" because my seizures would become more frequent and more severe. Once I started into menopuase, my seizures started improving without any medications. Now that I am through it, they have improved so much. Menopuase did for me what medications never did. I told my husband if I had known this, I would have had my "plumbing jerked out" years ago. I never thought that I would enjoy "getting old" but I sure have. Hope you have this good Luck also!

Re: Does Epilepsy Get Worse With Aging?

Well, I guess there's an upside to that phase of life then! Thanks for getting back to me. I appreciate everyone's insights and sharing of their experiences.

Re: Does Epilepsy Get Worse With Aging?

WOW...Im looking forward to menopause now.lol

Re: Does Epilepsy Get Worse With Aging?

Hi Tara,

Generally, seizures that continue regularly through adolescence into adulthood, become worse with age. Migraine headaches also become much more likely with epilepsy in early adulthood, and it is often difficult to differentiate between the aura with migraines versus the aura with seizures, except the effects with migraines typically last longer than a few minutes, while the aura of seizures are shorter.

One class of seizures that is sometimes regarded as "going away" is catamenial epilepsy, but this has lately been associated with a return to the archaic/barbaric notion of genital mutilation as a "cure" for epilepsy for both females and males. (google "epilepsy genital mutilation" for the "modern" medical practice that is "forbidden knowledge," but still widely practiced, and gaining in frequency in the Western World).

One explanation for seizures getting worse is the controversial notion of "kindling," in that seizures damage neighbouring areas in the brain, which has been verified in animals, but rejected as applying to humans. Yet, most neurologists argue that seizures must be prevented or controlled, instead of just tolerated, to prevent this "expanding" brain damage, while they reject the notion. Add to this "Forced Normalization" (the old usage with psychosis, instead of the new limit of just "depression"), and the two sides of neuro and psychiatry both "hit the fan."

Tadzio

Re: Does Epilepsy Get Worse With Aging?

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?

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?

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???

Re: Does Epilepsy Get Worse With Aging?

Heard back from my doc - apparently, it can get worse with aging; but it's generally a long-term process. I'm not sure what that means specifically, since I'm 31, and I've had symptoms since 11yo. He did say he assumes the explanation for the new symptoms (smells and hallucinations) mean that my seizure pathway has changed course for some reason or other and entered the realm of my frontal and/or temporal lobes.

Terrific.

If that's not getting worse with aging - I'm not sure what is?

Tara (OP)

Re: Does Epilepsy Get Worse With Aging?

that sounds like it is getting worse to me??!

I dunno

Is he/she going to send you for tests?

Re: Does Epilepsy Get Worse With Aging?

It's pretty complicated. I have no insurance, and my doctor is answering my questions via phone calls/emails. I live in another state, and can't go in for a visit so that he can do a standard check.

One of his long-time resident fellows will be heading up the epilepsy dept. at the hospital close to where i live in july - i'm hoping to see that doctor and get help regardless of insurance at that point.

I just can't understand people who do not want to socialize health care.

Tara

Re: Does Epilepsy Get Worse With Aging?

Hi Tara,
Epilepsy can get worse over time, yet can get better. My seizures are the same, as well as how many I have. What seizures do is kill brain cells. And the medication ( what-ever one is on ) can slow ones brain down and also kill brain cells.. Memory problems, ect ect..Lets just say I had an I.Q of 125 and now 96.My doc. once told me having a tonic-clonic seizure kills as much brain cells as meds over time..But I do take a lot.
I dont know how long " over time means"..Is it a year or a month..And all of us are different.

It stinks but it could be worse..I try to tell myself that every day.
Good luck to you

Re: Does Epilepsy Get Worse With Aging?

 In my personal experience epilepsy got better then worse. I first had seizures when I was 12, took meds that controlled them until I was 20. I went off meds and seemed to have a little trouble only at night but that was it. When I was in my mid 40's they came back with a vengence. After waking up late one morning on the floor, with my face against the bed post-I looked like a looser in a boxing match- I knew it was time to get back on meds (duh!). I've had about every type seizure (mostly at night), but the absence type that come out of the blue during the day scared me out of even trying to keep my drivers license. At 53 I'm taking a pile of carbamazipine every day, which sortof controls things.

 It's different with everybody, I pray that it only gets better with you.

Brian.

Re: Does Epilepsy Get Worse With Aging?

Thanks for sharing your story with me Brian. I'm hoping it gets better too - maybe it just got worse for being off my meds for a few months...don't know.

All the best,
Tara

Re: Does Epilepsy Get Worse With Aging?

I am a caregiver for my cousin who is now 43 years old - His nuerologist never really showed us or explained much to us over the years - My cousin who had lived with his mother until now was given a "Cocktail of Drugs" w/o doctor supervision - they never made appt to see him and one drug we found out "Keppra" causes extreme behavori aggitation etc. The reason I am explaining this is b/c my cousins seizures increased to where he refused to go out of the house - he was stuck in an induced drug state - I took him out of  his environment and started to get our community involved - regulated his meds and we are currenly looking into better treatment - we still at this time do not have all the answers - but what i've learned is please continue to investigate new drugs - this epilepsy forum is great! I believe your siezures can get worse in time if you stay stuck and become afraid to leave your  house. My cousin has been suffering with this for over 32 years! Will fall up to ten times a day everyday.

 

 

 

Lennox-Gastaut Syndrome

Re: Does Epilepsy Get Worse With Aging?

That's great that you've taken over your cousin's condition. Keppra is the worst drug I ever tried. After a week I told my doc I was going off. I have a very very good doctor - he is in my opinion, and that of the community, one of the best.

I don't stay stuck inside for fear of seizures - but I am now limited in terms of my parenting style. I won't go out alone with my two year old daughter in case something happens.

That's just practical, though.

Thanks for your input and response.

Best,
Tara

Re: Does Epilepsy Get Worse With Aging?

I'm experiencing the same thing as you!!! Mine is getting worse NOT better!

I've also experienced the weird visial distortions when I wake up in the morning.. bright lines/bright spots. My scar tissue from a brain injury is in my occipital lobe.  Usually my auras are flashy lights on the left side but these bright lines are WEIRD!

I've had to switch drugs last nov and up doses and just mess around all together.  I was also wondering the same thing is epilepsy got worse with aging,  I used to be sooo controlled.. stay up late drink like a fish. Now I do none of that for fear it will mess with me.

i'm really glad you posted :)

Heather

Re: Does Epilepsy Get Worse With Aging?

I also have jme. I was diagnosed when I was 15. I'm now 30 and I think that mine seems to be getting worse too. I'm currently on Lamictal 300 mgs 2 x a day. Sometimes the vision in my left eye only looks like the room is moving up and down rapidly and I end up having to crawl on the floor to get around my house. But if I close my left eye I can see out of the right one just fine. I'm also having twitching and jerking in my legs and arms when I'm trying to fall asleep. It also at times feels like there is and electric shock going through my body. It wasn't this bad when I was first diagnosed and this all started within the last year. If anyone else knows why I might be going through this please let me know. I really think that my epilepsy is getting worse.