Hi, New and phenytoin/dilantin question.

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Smokey

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Hi, New to the forum. I was diagnosed with absence seizures at age 5. Tonic Clonic came along at age 11! I am now 46!
I am on 400mg phenytoin per day and 1800mg sodium valproate prolonged release per day. This has been controlling my epilepsy.
I also take persantin 400mg per day, simvastatin 40mg per day and 75mg aspirin a day which I started taking after a mild stroke 2 years ago.
My question is this, my phenytoin levels are rising and i am having signs of toxicity, is this normal at my time of life? Thanks for any answers.
 
Hi Smokey, welcome to CWE!

While metabolism can slow with age, in turn affecting the clearance rates of meds, I think the phenytoin toxicity is due to anticoagulant (persantine) that you are on.

Anticoagulants (like persantine) can affect phenytoin and vice versa:
1. When phenytoin and anticoagulants are used at the same time, your blood may be much less likely to clot and this may increase the risk of excessive bleeding.
2. On the other hand, anticoagulants can increase blood levels of phenytoin. This could increase the risk of toxic side effects (such as drowsiness, dizziness, headaches, and blurred vision, or more serious effects such as anemia liver damage).

Since you are experiencing problems, it may be necessary to adjust the dose of either drug.

One other thing:
Phenytoin can also speed clearance of simvastatin from your body (making simvastatin less effective). So all your meds should be closely monitored for blood serum levels and your cholesterol levels should be checked as well.
 
Thanks for the quick reply. I,ll pass this on to my doc. He has said if next blood test comes back high he wants to start lowering dose of phenytoin. I though, am very wary of playing about with my epilepsy medication. I just think that if its worked this long, good. Plus no offence to my docs, but I dont know how much they know epilepsy as they are a general family practice. Last time I saw a specialist about my epilepsy was 30 years ago!
 
Hi Smokey and welcome aboard! Sorry to hear about your issues, but as we age (52) things start to change. Drastically! My knees have started to head toward the floor, my boobs have a mind of their own and it is not pretty, plus for some reason, the color is leaving my hair!!
 
The color left my hair years ago!
This is it, no one really gives you any up to date info, you have to hunt for it, then refer it back to your doctors.
I accept my epilepsy and always have, I have 3 kids and have always had a job. I have worked with kids for the last 15 years. (and school knows i have epilepsy).
I was never told that phenytoin and sodium valproate were drugs that could affect my children. I was never told about SUDEP or that both of these drugs can affect my bones.
I have never moaned about the side effects of the drugs to my doctor over the years. It was myself that went to him now though because of the severity of the side effects. I just feel a bit fed up and sounding off I guess. Sorry.
 
No need to apologize. We all have found our docs to be wanting from time to time. Some of them are downright incompetent. I'm sorry that you've suffered as a result of one or more of your doctors dropping the ball.
 
Smoky, Hi.
Sorry to intervene
I was on phenytoin for over 30 yrs. initially it worked with one capsule then over time it was increased up to four capsules, since the absence sz returned and later Mysoline was added. I am no longer on phenytoin since my sz increased from absence to complex partials and then to Secondary Generalized Tonic Clonic Sz. I sometimes wonder if the phenytoin stopped being effective after Park Davis stopped production the medication as you know now it is manufactured by Pfizer. I have read many posts were people that take or took it did not have the same effect as before they were having break through sz.
When the SGTC started I decided that I had had enough as Nakamova said some Neurologists are downright incompetent, how they get the degree of MD/Neurologist is beyond me!
I found out that a specialist in the field of epilepsy existed and this epileptologist talked to me I gave him the symptoms of what my absence was and he suggested that I have EMU and sure enough after 5 days without medications the seizures surfaced. Once it was on the EEG and on tape he changed the medication since the phenytoin was an older AED so now I'm on Keppra and Vimpat, yes it does have side effects but my sz are under control no sz whatsoever. for six months.
What really surprised me was that with the epileptologist I did not have to have an MRI, blood test or X-ray and was finally diagnose with epilepsy. I say finally since I presumed I had epilepsy but they had never ventured to give it a name.
See if you can find an epileptologist they are usually at the University Medical Center, you won't regret it.
 
I was on phenytoin about 2yrs ago for 5yrs and it worked great at controlling my seizures, but I was having 5-10 gran mal seizures a day also dilantan worked well only time I every had any trouble with phenytoin was when my levels were to high once it was like being drunk with blurred vision.
 
Thanks everyone for your replies. I have my appt to go back go docs.
I have also been to my dispensing chemist and asked that they give me the same sodium valproate all the time.
Has anyone had experience of coming off of phenytoin or lowering it and how did it affect them?
 
Smokey
On the day when I was being hospitalized for the EMU I was taken of the phenytoin and the primidone. I did not have any kickbacks because I was off it. They had always told me that I had to been weaned off but in this case since I was with people that deal with it every day and that is precisely what they wanted to see intensity # of sz and how strong they were.
I short I did not have any instant effects until I had my sz once the meds were changed after the sz I did not have any problems. Possibly because the combination of both drugs besides being newer AED they were stronger and also my mind was clearer that with the other meds. That is my experiance but best of luck.
 
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