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Old 04-02-2012, 02:12 PM
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What tests for Brain Shrinkage from drugs?


Hey all,

I am thinking of going back to Dilantin from Keppra, and as I consider doing this, I come up against all my fears about long term Dilantin usage. Namely, things like brain stem damage or cerebellar atrophy, etc.

When I bring these things up to my neurologist, he acts like I'm a nervous hypochondriac, but I just really want some reassurance that damage hasn't already taken place and to know what tests I need to do periodically to be sure I catch anything in the future before it gets too bad.

Does anyone know what type of tests are used to detect if any of this type of damage has taken place or to monitor those aspects of the brain going forward? Also, am I being unreasonable in wanting these preventative tests, as my neurologist implies, or should I expect a neurologist to do these type of things?

Thanks
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Old 04-02-2012, 02:37 PM
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The tests they would use are imaging ones -- MRI in particular. But it's not as if there is a hard and fast scale -- i.e. this amount of atrophy = this amount of damage. Often what doctors will look for first are the physical signs/symptoms. Because the cerebellum primarily coordinates movement, degeneration often shows up as difficulties with motor function and control, muscle tone, coordination and balance. The most characteristic symptom of cerebellar degeneration is a wide, unsteady, lurching walk, often with a back and forth tremor in the trunk of the body. Other symptoms can include slow, unsteady and jerky movement of the arms or legs, slowed and slurred speech, and nystagmus -- rapid, small movements of the eyes.

There are also other factors that can be factors in cerebellar atrophy: It can be hereditary, or the result of disease or toxins. Potential causes: celiac disease, auto-immune disorders, lesions, alcohol abuse. And long-term Dilantin use (as you are well aware).

Aside from having an MRI done, and watching for any issues with coordination, you can ask your doctor to test for sensitivity of the nerves of the toes. This is just done with a tuning fork -- the doc holds the vibrating tuning fork to your toe, and (without looking) you tell him when you feel the vibrations stop. Loss of sensitivity (called peripheral neuropathy) can be a sign of too much Dilantin (along with gum overgrowth and bone density issues).
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Old 04-02-2012, 03:01 PM
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Originally Posted by Nakamova View Post:
Because the cerebellum primarily coordinates movement, degeneration often shows up as difficulties with motor function and control, muscle tone, coordination and balance. The most characteristic symptom of cerebellar degeneration is a wide, unsteady, lurching walk, often with a back and forth tremor in the trunk of the body. Other symptoms can include slow, unsteady and jerky movement of the arms or legs, slowed and slurred speech, and nystagmus -- rapid, small movements of the eyes.

There are also other factors that can be factors in cerebellar atrophy: It can be hereditary, or the result of disease or toxins. Potential causes: celiac disease, auto-immune disorders, lesions, alcohol abuse. And long-term Dilantin use (as you are well aware).

Aside from having an MRI done, and watching for any issues with coordination, you can ask your doctor to test for sensitivity of the nerves of the toes. This is just done with a tuning fork -- the doc holds the vibrating tuning fork to your toe, and (without looking) you tell him when you feel the vibrations stop. Loss of sensitivity (called peripheral neuropathy) can be a sign of too much Dilantin (along with gum overgrowth and bone density issues).
After reading this post, I'm wondering what to ask my Dr. Wednesday (my next appt.)

I have been on dilantin for about 43 years. Several neur. have tried all other medic. that 1st. they did not control my seizures and 2nd I had NO life the all the side effects.

I do have the peripheral neuropathy in my toes.
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Old 04-02-2012, 03:12 PM
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It's a tough call. Have you noticed any motor side effects? Any chance you can back off your Dilantin dose just a bit?
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Old 04-02-2012, 03:21 PM
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I can recall any motor side effects. Sometimes my legs feel weak.

I sorry butt in on this post.
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Old 04-02-2012, 03:47 PM
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You're not butting in at all. That's what this place if for.. throwing things out there that may be of use to others as well.

Naka.. I figured the MRI would be one of the tests used, but my doc acts like other things I bring up, such as tuning fork, to be unnecessary. Do you feel that a test like that is unnecessary unless you are definitely showing signs (poor gait, etc.)? I always push for things up front because I want to catch a potential problem before it really begins if at all possible, and if need be I'll switch docs.

I do feel that my concentration and memory aren't as good as they used to be, but I've thought that could just be my current Keppra usage and not the long term Dilantin. (this is one of the reasons I am thinking of going back to Dilantin)

It just feels like there are no good options and the doc won't do, or doesn't know how to do, anything that will make me feel better about going back to Dilantin.

I just don't want to make a mistake that will make something worse, but I want to feel like myself again and live life more fully...

Last edited by Dignan; 04-02-2012 at 03:50 PM.
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Old 04-02-2012, 04:03 PM
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It's tough to know for sure whether a MRI would reveal enough to give you a definitive answer about the Dilantin. Without any apparent motor side effects, any cerebellar atrophy may be too slight to register. It might be helpful to undergo a neuropsych evaluation, (or if you have done so already, have a follow-up). The eval can set a cognitive baseline, and a follow-up eval can note whether there have been significant changes in cognitive and memory skills.
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Old 04-02-2012, 05:33 PM
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Does your neurologist willingly do things like neuropsych evaluations or tuning fork tests?

My guy looks at me like I'm a moron for mentioning anything like that. He wonders why I would want one, and says things like he doubts anything would reassure me.

Anyone have an opinion on if this type of test is both warranted and a normal request of a neurologist?
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Old 04-02-2012, 05:48 PM
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2 of my neur. (one of them being my current neur.) uses a tuning fork on every visit, I really didn't understand why all these years.

I was never told about the issues with the gums, thankfully I have not had any problems there in all these years. Nor was I told of the other side effects. I'm guessing their main thing was to find a medic. I could tolerate and stop the seizures.
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Old 04-02-2012, 06:47 PM
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Maybe I need to find a new neurologist then. Mine never does anything except talk to me. He did blood work when I was on Dilantin but never anything else. And, like I said, when I mention other tests, he acts as though they are unnecessary.

Naka.. I've experienced some bone loss already from Dilantin (although my levels were never high, but I did take it for 17 years, felt fine on it otherwise), but I am thinking of going back to it anyway.

I've never felt right since I got off of it. First I was on Neurontin exclusively, and I was dizzy and foggy much of the time, and also had loss of libido. I took that for a year. I had a seizure and was put on Keppra.

I don't feel as dizzy on the Keppra, but I don't feel mentally sharp, and still have the libido issues and sometimes I feel emotionless (less humor, not excited about much). I also feel physically weak and tired alot. So, we talked about going back to Dilantin. I've now been on Keppra for a year.

Before I did go back to Dilantin I just wanted something done to reassure me that the way I have felt for the past 2 years wasn't from some damage done to me by my previous Dilantin use, but the docs act like I'm crazy for saying that since I dont take it anymore.

I've heard some people online say things like if you take Dilantin for a long time and then are taken off of it, that it can leave you with lower brain stem damage (as though the coming off of it after so long causes the problem).

Have you ever heard anything like that, or does it seem more likely that it is the drug I take now causing my issues and I shouldnt fear a switch back to Dilantin so much?

thanks.
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Old 04-02-2012, 09:45 PM
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My neurologist did the tuning fork thing while I was on Dilantin. She recommended the neuropsych eval when I switched to Lamictal -- not because I was suffering any cognitive effects, but because she wanted to set a baseline against which I could measure any future changes. So it was her initiative, not mine. That said, the eval isn't strictly necessary (in insurance terms), so your neurologist could be reluctant to request it if your insurance is at all problematic. Or maybe he doesn't regularly refer folks to neuropsychologists. You might as well just ask him to see what he says. And if he isn't helpful, a new neurologist may be in order, perhaps one who will order an MRI to check for cerebellar shrinkage.

Coming off of Dilantin won't cause lower brainstem damage. I think the confusion about this may have to do with how Dilantin works. It acts in the motor cortex in the brainstem (inhibiting the "tonic" part of a toni-clonic), so coming off of it abruptly can cause seizures that are physically violent. But that risk exists only if you stop cold turkey, a risk that is similar with other anti-epileptic drugs.
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Old 04-03-2012, 07:01 AM
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B vitamins


Hi Dignan,

Talk to your doctor about using B vitamins with your medication.

These sites may be of interest to you:

http://www.examiner.com/nutrition-in-sacramento/can-certain-b-vitamins-slow-brain-shrinkage-lower-homocystenine-levels

http://www.bbc.co.uk/news/health-11239437

http://www.telegraph.co.uk/health/healthnews/8760703/Daily-Vitamin-B-pill-can-help-stave-off-Alzheimers-disease.html

Also Keppra:

"Levetiracetam is marketed under the trade name Keppra."

"A study published in 2005 suggests that the addition of pyridoxine (vitamin B6) may curtail some of the psychiatric symptoms.[6]"

http://en.wikipedia.org/wiki/Levetiracetam

**DO NOT ALTER ANY MEDICATION WITHOUT YOUR DOCTOR'S CONSENT**
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Old 04-03-2012, 11:12 AM
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Naka, I wish my doc had done the neuropsych eval before I came off Dilantin. That was the last time I felt mentally at my best. He never even mentioned it, and I was to dumb to ask.

Thanks for the brainstem info, that puts me at ease somewhat. I try to filter what I research online through reputable sites, but you still hear things that are frightening (often from docs who don't know what they are talking about) without knowing what is really true. (is there a reputable site that refutes this brainstem damage notion from coming off D that I could look at?)

Andrew, thanks for the info, but I already take a B Complex everyday (since I take Keppra).

Naka.. I did some research through my old bloodwork that I had done yearly when I was on Dilantin and, looking at the actual numbers, I noticed that often times my Dilantin level was above normal a little bit (normal being 10 - 20). Sometimes it would be 26, or 22, something like that. (i may start another thread about this subject I suppose) Also, there was a Free Dilantin number that could still be normal range when the total was a little high.

Should my Dilantin levels always be in normal range for total and free, and if they weren't should my neurologist have said something or lowered my dosage? Just want to be sure what to look for if/when I go back to it.

thanks again for everything..

Last edited by Dignan; 04-03-2012 at 11:17 AM.
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Old 04-03-2012, 11:35 AM
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When I was on Dilantin, my level was 5! Just goes to show, "normal" really is just a suggested range -- folks may achieve seizure control by falling on either side of that range. If you needed a higher Dilantin level to control your seizures, and you weren't suffering daily side effects related to too high a dose (things like balance problems and nystagmus), then your levels were *probably* okay.

However, it's also possible that you were on more than you needed. Had you tried lower doses to control your seizures?

BTW, you weren't "too dumb" to ask about the neuropsych eval. I had no idea that it was an option, and was lucky my neurologist brought it up. I didn't agree with all her ideas, but I think that was one of her good ones...
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Old 04-03-2012, 12:35 PM
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I did try a somewhat lower dose, the year before we began tapering off due to the bone loss thing.

They decided to lower my dose from 300mg to 260mg per day. I accidentally started taking 230mg instead. (forgot one of the 30mg pills) I didn't have any seizure issues (never had too many to begin with though), and I felt good. I kept taking the 230mg amount for the next 6 mos until we started tapering off altogether. (also I was taking a small amount of neurontin too)

To be fair, I never really felt bad when I was taking the higher dose of Dilantin either, but I do recall thinking I had been feeling good lately after it was reduced.

It was just after I was totally off of it and taking neurontin first and then keppra that I felt like total crap.
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Old 04-04-2012, 06:30 PM
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I saw my neur. today.

I asked her about the brain shrinkage issue, being on dilantin, she said she was glad I was asking this question. --I told her about CWE. Anyway she said if I ask my husband a question and a few min. later I ask the same question and then again if I ask him the same question--This is when she will need to know that my memory has gotten that bad.

My dilantin level was 13.4, it was 24.5 back in July of last year, that is when I went toxic.

She did not use the tuning fork. She did have me walk across the room, then walk back heel to toe. She had me watch her finger without moving my head. With my right hand I had to touch my nose then her finger, she would move her finger I was to keep up with her, she then said for me to use my left hand to follow her hand and again point to my nose then her finger.

She did send me for level to check on my B-12 and my liver.

I asked her if I needed any test to check for cerebellar atrophy. She said not at this time.

I asked about being on Dilantin for over 40 years now. She said the 1st. thing was that I was serizure free as much as possible, with as little as possible side effects (quailty of Life)
NONE of all the other medic. have been able to that for except for dilantin.

She did say she was please with how well I was doing, that she didn't need to see for 6 months. It has been a long time that I could go that long between appt..
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Old 04-05-2012, 03:06 PM
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Thanks for that update. That was quick!

Just to confirm, when she said she was glad you were asking that question, was it because she felt like the memory issues and brain shrinkage issues were overblown?

Glad to hear you are doing so well, even after all those years on the drug!
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Old 04-05-2012, 03:31 PM
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I really don't know why she said that, when you put that way.

She seems interested in what I'm saying, when I 1st went to her I was a mess, my gate was really bad then I was using a walking cane, I had a hard time taking in what she was telling me.

I told her on that visit that dilantin was the only medic. that worked for me. She insisted that I try a new drug. I refused Keppra, I been down that road, got the T-shirt. She tried 3 other medic. one of them I ended up in the hosp.

I know my previous post was really detail, but I was concern how your neur. visit were going.
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Old 04-05-2012, 06:55 PM
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I appreciate the detail of your posts. They are really helpful!

My guess is your neurologist just meant that she was glad you asked because she probably thinks it is important for someone on Dilantin to be aware of the possibility. And, I think she was trying to put you at ease that unless you were asking the same question 3 times in a row, that your memory was doing okay too.

Again, I really appreciate the detail because it gives me something, finally, to judge my neurologist against. And, he has been someone I've been disappointed with lately.

So, thanks again!
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Old 04-06-2012, 07:17 AM
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I'm glad that my input helped you.

I wish you the best looking for a new neur.
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