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2030686 tn?1351688548

seizure preventative for tx?

I started having seizures last february (2011).  I don't have epilepsy, as far as they can tell I have toxic encephalopathy.  Which means toxins were building up in my brain from the combo of meds I was on.  My reg dr said "serotonin syndrome" is another possible dx.  The definition of a "controlled" seizure disorder is no seizures for 6 months.  I've been going more than 6 mos between seizures.  I asked my gastro if I should be on an anti-convulsant for tx and he said it was up to the neuro.  I asked the neuro and he asked what I wanted to do.  I told him if I had a seizure I would have to discontinue tx and that would lower my chances of success.  I also told him I was nervous about being on more meds if they are building up in my brain.  Again he asked me what I wanted to do and told me to call the gastro again.  He ended up putting me on a baby dose of trileptal.  I see the neuro next week and he told to figure out what I want to do.  What do you all think?  I'm weighing the risks of having a seizure during tx or taking a chance on this med building up to toxic levels.  Any body have any advice on how to figure this one out?
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1815939 tn?1377991799
I do think something has probably changed, but exactly what changed, is the question.

Personally, I would not paint the garage. I know paint fumes as well as cleaners, solvents, etc. are readily absorbed into the body via the respiratory system.

If I were you, I would ask the neuro and the Hep doc what they think about painting the garage.
Helpful - 0
2030686 tn?1351688548
I didn't mean they just ask me if I want a drug, it's usually a discussion.  I don't think the neuro had planned on putting me on anti-seizure meds since we think it's a serotonin thing.  So when I asked if I should be on one, I think he really just didn't know. Which is why he told me to ask the gastro.  I've never done tx and I know my chances are better the first time around, so I'm worried about having a seizure and having to stop.  

I just don't understand how I can be fine on these meds for more than 5 years and all of a sudden I'm not anymore.  Wouldn't something have to change in my body or brain for this to happen?

Do you think I need to worry about other chemicals building up?  Would it be ok to help paint the garage and stuff like that?
Helpful - 0
1815939 tn?1377991799
"So if there's no liver damage there's no real worry about toxicity?"
---------------------------------------------------
No, I do not mean that. There can still be toxicity even if it is not from liver damage or liver dysfunction.

By definition, hepatic encephalopathy refers to encephalopathy caused by liver dysfunction.

A.D.A.M. Medical Encyclopedia.
"Hepatic encephalopathy is a worsening of brain function that occurs when the liver is no longer able to remove toxic substances in the blood.
Hepatic encephalopathy is caused by disorders that affect the liver. These include disorders that reduce liver function (such as cirrhosis or hepatitis) and conditions in which blood circulation does not enter the liver. The exact cause of hepatic encephalopathy is unknown. An important job of the liver is to change toxic substances that are either made by the body or taken into the body (such as medicines) and make them harmless. However, when the liver is damaged, these "poisons" may build up in the bloodstream. Ammonia, which is produced by the body when proteins are digested, is one of the harmful substances that is normally made harmless by the liver. Many other substances may also build up in the body if the liver is not working well. They can cause damage to the nervous system."

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001347/

However, even if the liver is working fine, a person can still become toxic from drugs, alcohol, or other substances (and develop toxic encephalopathy). If the normal dose of a medication is 100 mg and a person takes 1000 mg, that person may get toxic due to too much of the drug in the system. Or, a person may be taking the correct dose, but their bodies may metabolize the drug in such a way so that they become toxic. Or, a person may be taking a combination of similar drugs which, when taken alone, are fine but, when taken together, have a toxic effect due to too much of the same type of drug. So a person can still become toxic even if the person's liver is functioning fine. It sounds like this is what your doctors are talking about.  

If you get a seizure every time you add back a drug that affects serotonin, then it appears that the serotonin has something to do with it.

If you trust your neuro and gastro, then there may be no reason to switch docs. However, it is my opinion that, just because you will go home and look it up on the internet, does not mean the docs do not have a responsibility to go over it with you and explain everything to you. Even if the patient knows a lot about the disease and procedures and treatments, I personally feel the doctor should sit down and discuss all possibilities and options. That is their job. By not discussing it with you the doc is making a big assumption that you are both on the same page, that you both know exactly the same information,  and that you know exactly what he knows and exactly what he is thinking (even though he has not told you). To me, those are way too many assumptions. (Incidentally, I also know a lot about diseases and medical problems, but I still expect my doctor to sit down and thoroughly discuss it  with me.)

As you said, you react to many drugs so, of course, the docs want to ask you what you think. But, still, that question should come after a thorough discussion concerning the disease, medical condition, options, treatments, med., pros, cons, etc.

There should be a hepatoologist who will treat you but, if you feel comfortable with these docs, then by all means stick with them. Perhaps you could ask them to give you more info and their professional opinions.

I sincerely hope you can get this all solved so that you can treat and get rid of the Hep C.
Helpful - 0
Avatar universal
"With my complicated history I don't think a hepatologist would treat me.  I need to get treated because I have to be on meds my whole life that go through my liver."

       ************************************************************************

     You have Hep C.....of course a Hepatologist would treat you.  
Helpful - 0
2030686 tn?1351688548
So if there's no known liver damage, there's no real worry about toxicity?

The dr's DON'T think it's because of liver damage.  We did not know about the hep c when they were doing the testing (Feb 2011) but a liver panel was done with the hcv test a couple  weeks later.  I was on a few meds that together can cause serotonin syndrome and asked if it was a possibility. I was also basically unconscious the whole time I was in the hospital (2 days) so he wouldn't have been able to dx it.   I was taken off most of my meds (the ones that affect my serotonin) and when one is added back I usually have a seizure.  None have been as severe as the first one, but they have all been nocturnal grand mal seizures. The neuro says the first one was more of a "drug interaction" that built up over time (few years) and the others because my seizure threshold has been lowered.

I supposedly had one of the best neuros in the state do the testing after my first seizure.  He came up with toxic encephalopathy through process of elimination, the only other thing he could find was low potassium.  

As far as the others putting the ball in my court, I usually don't need much of anything explained, so when we come across something unfamiliar they figure I will learn about it as soon as I get home.  I have bad reactions to meds alot, too.  So when they put me on something new, it's usually more of a question than "here take this".  I'm nervous about changing dr's because it's hard to find ones who don't treat me like a internet hypochondriac.  These guys know that I know myself and trust I will make informed decisions.  They also won't prescribe just anything I ask about.

With my complicated history I don't think a hepatologist would treat me.  I need to get treated because I have to be on meds my whole life that go through my liver.  All of my possible exposures were more than ten years ago and I have a 10 year old.  I feel like my clock is ticking.  I also think I will feel alot better if I'm able to clear this virus.  I've felt sick every day of my life since I was 17 and I'm only feeling worse as time goes on.  
Helpful - 0
Avatar universal
   I am all for baby doses, and I do know several people on Trileptal.
I have read about people getting seizures during Triple Tx, but I am not sure if it is listed as an actual side effect.
   As others have suggested, perhaps a Heaptologist would know more then a Gastro.  And you should find out if it will be possible for you to have weekly labs, to check to make sure you are not getting toxic.
   Proceed with caution, and good luck with your Tx~
Helpful - 0
1815939 tn?1377991799
It does not sound like the doctors think you have encephalopathy from liver failure (or maybe I misinterpreted your post). It sounds like the docs think it is from medications you are taking.

I am not sure why the docs are tossing the ball into your court all of the time or into each others' court. That is like a kid who goes to one parent and asks a question and that parent says go ask the other parent. Then the other parent says go ask the first parent. The docs should be conferring and should be making a decision but they are avoiding it by tossing it into someone elses' court (either yours or the other doctor's). It sounds like they don't know what is causing the seizures or what to do about them so they toss it to you. Seems a bit irresponsible to keep asking you what you want to do when it is up to them to explain all of the possibilities, all of the options, all of the pros and cons so you can make an informed decision.

If the doctors think it is a toxic buildup of the medications you are on, maybe they should think about changing the medications or changing the dosages or some other such tweaking of the medications. They also should do some blood levels to see how much medication is in your blood.

Also, if the doctors think you have serotonin syndrome, they should do some more in depth investigation into what is really going on. Serotonin syndrome is not a diagnosis one casually tosses about.

I agree with OH, get a competent hepatologist and also probably a new neurologist.

Here is something I found on Serotonin Syndrome:

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0004531/

I hope you can get this solved so you can begin treatment.

Helpful - 0
163305 tn?1333668571
If possibly I'd drop the GI and find a hepatologist experienced with hep C.
GI's simply don't have the training that a liver specialist does.

What is the condition of your liver ?
I had encephalopathy from cirrhosis due to my hep C.

Although the decision is indeed yours, the job of your doctors are to inform you.They are the ones with the education to help guide us in our decisions.
If it were me, I'd seriously look for a hepatologist before making any serious decisions.

During my first tx, my GI recommended a hepatologist when he was stumped about how to proceed with my treatment.
Switching docs was one of the best things I did.

Good luck.
Helpful - 0
317787 tn?1473358451
Hi I am not a doctor and only have anecdotal information.  Does the doctor think that the seizures are due to the damage of your liver?  I have not looked into your history, I just saw your question and wanted to be supportive.
Are you on lactulose for the encephalopathy?...there is also an antibiotic that is supposed to help with the buildup of ammonia.  I guess what I should ask is, have you had your ammonia levels checked?

I have a friend who does have epilepsy and did treatment and treated her epilepsy at the same time.  If I were you I would try to do some searches on this subject.  Have you treated before?  I will try to find more information
Best of luck to you
Helpful - 0
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