Please Help..

Dignan

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I have been on Dilantin for 17 years and Neurontin for probably 10 years. I haven't had a generalized seizure in 7 years or an aura in over 3 years.

9 months ago, I got off Dilantin due to bone loss. After finishing the tapering off process, I noticed I was swimmy headed from time to time, at times don't feel mentally sharp, and noticed libido loss. These are effects I did not feel when I was on the Dilantin only after I stopped the Dilantin.

I am beginning to feel like my life is slowly being taken away from me. As I said, not feeling mentally sharp, and swimmy headed feelings make me not want to be around others because I just dont feel right.

I am not married and have no girlfriend, and the lack of libido makes me not want to try. I have been told by one doctor that the swimmy headed feeling and lack of mental sharpness could be sub - epileptic activity and maybe I should go back on more meds. Even though it doesnt feel or act like any aura or seizure I have ever had before.

I have been told by another doctor that I am doing great by not being on the meds (since no seizures) and these effects could be from the neurontin, and he wants to start removing the neurontin.

I have also heard that these effects could be long term effects of Dilantin.

Can anyone help me? I am desperately seeking advice on what to do , and I am scared this all is some permanent side effect on my brain from years of Dilantin. Has anyone experienced this coming off of Dilantin? As an effect from Neurontin (I am only taking 600mgs per day)? Will it go away?

I am almost ready to give up..

Thank you.
 

zbird

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Welcome Dignan.

Sorry I can't help with your questions, but did at least want to welcome you to CWE. There are a lot of great people here with tons of knowledge and first-hand experience that will hopefully be able to help. Hang in there.
 

RobinN

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Dignan - chemicals are very powerful. It would seem to me that eliminating them, on the traditional taper that is suggested makes a huge difference to brain function. The brain I would think, needs a long time to find its normal zone again.

Giving the brain and nervous system, the nutrition it needs, most likely via supplementation would be important, or what I would try before going back on more meds. Also clearing the liver, as a congested liver can cause a hormonal imbalance.

I may be a broken record, but nutrition is the #1 therapy with the least side effects. However, it is the least studied.
 

Nakamova

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Hi Dignan,

There is a rare side effect from long-term use of Dilantin called "cerebellar wasting" -- it can show up as eye movement problems, imbalance and dizziness. But it doesn't make sense that you would develop those side effects AFTER going off the Dilantin.

I think it's more likely that the Neurontin is the culprit, and agree with the doc who suggests trying a slow taper off the Neurontin. The side effects you describe, including loss of libido are more consistent with Neurontin use than with Dilantin. Below is a useful site to check out what other folks have experienced on Neurontin:
http://www.askapatient.com/viewrating.asp?drug=20235
 

Dignan

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Thank you to everyone who has replied.

to Nakamova: the cerebellum issue you mentioned scares me to death, but like I mentioned before I noticed these effects after I began my Dilantin taper and finally ended its use. So hopefully, my cerebellum hasn't been damaged. Is it possible for cerebellum damage to show its effects after the Dilantin has stopped? Or is it strictly while on the drug as you hinted at? Also, I was on Neurontin while I was on Dilantin, so if Neurontin is the culprit it would mean that its effects became more apparent on me after Dilantin was removed. Is that possible as well, that the Neurontin side effects become more prevalent when taken alone instead of with Dilantin?

to RobinN: You mentioned supplements and nutrition. Do you have any recommendations or info on what supplements would be of good use in my case?

Thanks again.
 

Nakamova

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Hi Dignan --

The cerebellar wasting really is quite rare, and I don't think it's the culprit in this case. The Neurontin is a much more likely candidate, based on the timing of your new side effects, as well as known connections of Neurontin to similar side effects.
See: http://epilepsy.emedtv.com/neurontin/neurontin-sexual-side-effects.html

While there's no way to know for sure that the presence of the Dilantin had been masking the Neurontin side effects, it seems likely, again based on the length of time you've been on both drugs, as well as the timing of the new side effects. (There haven't been enough studies of long-term co-administration of Dilantin and Neurontin. Other drugs, such as antibiotics, are known to depress the levels of Neurontin). I agree with the doctor who suggests tapering off the Neurontin -- it's win-win if you can remain seizure-free and see a reduction in the unpleasant side effects. If you do taper, go very slowly and in small increments in order to allow the body to adjust at each level. Keep a journal to note any changes in side effects or symptoms.

There are a number of vitamins/nutrients that contribute to good brain health. Here's a partial list:

Fish oil or flax oil (and other sources of Omega-3s).
B-complex vitamin, especially with B6 and B12
Magnesium
Zinc

In addition, some people have found that a gluten-free diet helps with seizure control. If you have any known food sensitivities (such as MSG or aspartame) best to avoid those as well. Make sure to check with your doctor before taking any supplements or making significant changes in your diet.

You might also want to ask your doc about having a neurospych evaluation -- it's essentially a comprehensive test of cognitive and memory function. It sets a baseline against which you can measure any future changes.
 

ColmanMac

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Hi Dignan; There is a wonderful, but fairly weighty, reference book entitled 'The Illustrated Encyclopedia of Healing Remedies' by C. Norman Shealy.

See if you can find a copy via. your library rather than splash out to buy it, as it's pretty expensive. However, if you do want to go down that route, let me know & I'll dig out details of publisher; ISBN No; etc.

Col.
 

Dignan

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Thanks to everyone for their suggestions. It does make me feel some better. My biggest fear is that some sort of permanent damage has been done, but I guess I'll have to hang in there longer and see what happens after we remove Neurontin.

It's bad enough to deal with the seizures and all that entails, but to have the treatment add to your problems can really be depressing.

It sounds like Dilantin may have started a process of lowering my bioavailable testosterone which could account for the libido issue. I'm not sure why the swimmy headedness and times where I lack mental sharpness continue.

I've been off Dilantin for 9 months now, does anyone have any idea how long before normalization could occur? If you're on the drug for 17 years, how long is reasonable to expect before your body is back to normal?

Also, any experience on if there is any after effects once someone tapers off Neurontin? I don't want another year like this one!

Thanks again
 

Meetz1064

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I was

on Dilantin for 35 years, and have had a number of other meds in my systems over the years, including Neurontin.

I didn't end up with that swimmy headed feeling from the Dilantin at all when I came off of it, so I have to agree with Nak--the culprit is probably the Neurontin. Nor did I have a problem with libido either.

All of the nutrients that Nak mentioned are great for brain health--I use them myself. Magnesium is great for helping with migraines as well, so if you have that problem, you may well make them disappear.

Welcome to CWE!
 

Dignan

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Thanks everyone. I read the links on what Neurontin can do to you sexually, but I wish they would give specific examples so I'd know if my symptoms really match that of problems in that area caused by Neurontin.

To Nak: As far as a Neuropsych evaluation will those just establish a baseline based on how I am right now, or are there some tests that can tell me if I am experiencing any cognitive difficulties compared to what would be "normal"? I'd hate to be experiencing cognitive problems now as a result of getting of Dilantin or continued Neurontin use and establish a baseline that is lower than it should be.

Also, before I get off Neurontin my doc wants me to have a 3 day EEG just to be sure. Question for everyone: Wouldn't we get a better picture of what my brain is actually doing by waiting till AFTER I am off Neurontin before doing the EEG? Couldn't the EEG results by skewed by the fact that I am still taking Neurontin?

Thanks.
 

Endless

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Dignan,

The neuropsych tests will measure how you are doing compared to a "normal" person or brain. That's how they figure out what part of your brain is affected. They can't test compared to your non-injured or non-seizure brain. That would be impossible.

The tests don't distinguish between problems caused by medications and problems caused by seizures or brain injury, etc. In that way they are not as helpful as they can be.
 

RobinN

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Dignan - it was the second med that my daughter tried. She had terrible suicidal thoughts while taking this med and the seizures did not slow down.. increased in fact.

you might look at:
http://www.askapatient.com
 

Dignan

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Robin,

You had mentioned before something about clearing the liver because a congested liver can cause hormone imbalance. That rang a bell for me because of libido issues and some test results I've had in that area.

Are there some supplements that contribute to cleaning out one's liver after years on drugs like Dilantin and Neurontin, or is that something that just comes with time once all drugs are removed?

Thanks for all your help, and I hope your daughter is doing better since she is off Neurontin..

Dignan
 

Dignan

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Hi all,

As you may have guessed from some of my other threads, I didn't even get the chance to taper off of Neurontin. I had a seizure on Feb 7th, so now the Dr. has added Keppra generic.

We are still going to try and remove the Neurontin though, and I have dropped my morning Neurontin already (still take 1 300 mg at night).

I have noticed a type of dizziness and instability after the addition of Keppra and sleepiness in general. The Dr. thinks (hopes) that it is because of the Neurontin and that once we are done with that the other stuff will go away.

My question for everyone is this: Based on my previous posts about libido and swimmy headedness and the thought from all the replies that it could be Neurontin, how long after discontinuing Neurontin should I expect to see a difference, if it indeed was the culprit? Should it be immediate? Wait a few weeks?

I want to know because if nothing changes, I may try to go to an endocrinologist to see if Dilantin screwed up my hormones in some way..

Thanks again,
 

Nakamova

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The average time for Neurontin to clear out of your system is 2 days. But given that you are also adjusting to the Keppra right now, I would wait a few weeks to a month for your brain and body to figure out what's what. And keep a journal to track any changes.
 

Dignan

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Thanks for the info! I'm really hoping that ending Neurontin will be the answer to the libido issue.

I've read that Dilantin speeds up the liver process of catabolizing hormones, which can leave men with lower Free Testosterone and higher estrogen levels even if their total testosterone numbers look normal.

If the libido doesn't come back after ending Neurontin (i'll stop it totally this weekend), then I guess I'll get the hormones checked out. Although it's been a year since I ended Dilantin, so I'd hoped that if that was the culprit that things would have normalized by now, but who knows anymore!!

You guys are really helpful, and I appreciate it!

Rock On! :rock:
 

RobinN

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The one product I use in my home is called LiverLife made by BioRay

If the cost of supplements is overwhelming your pocketbook, a squeeze of fresh lemon juice in your first glass of water is also helpful each day.

HTH

Robin,

You had mentioned before something about clearing the liver because a congested liver can cause hormone imbalance. That rang a bell for me because of libido issues and some test results I've had in that area.

Are there some supplements that contribute to cleaning out one's liver after years on drugs like Dilantin and Neurontin, or is that something that just comes with time once all drugs are removed?

Thanks for all your help, and I hope your daughter is doing better since she is off Neurontin..

Dignan
 
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Also, any experience on if there is any after effects once someone tapers off Neurontin? I don't want another year like this one!
I don't know about tapering off, but I had really bad withdrawals from going off Neurontin--Severe fluctuations in body temperature, headaches, dizziness... It was very uncomfortable.

Also, yeah, neurontin is most likely responsible for the lack of libido because of what it does to the brain. It's job is to stop your neurons from getting over-excited and... well, the rest follows.
 

Dignan

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Just an update, I've been off Neurontin now for over a month, and I can say that my libido did improve after a week or two. However, it is still does not seem to be where it was before I came off Dilantin over a year ago now.

I am now taking brand name Keppra 1000mgs a day. I'm wondering if that could be keeping me from feeling all the way back in the libido dept. again? Or, if it just takes awhile for the body to adjust once the Neurontin was discontinued? Or, if some permanent change could have occured because of the Neurontin? I've heard of that happening with other drugs and wanted to know if anyone had an opinion?

Thanks.
 
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