Hi

At age 16 I developed epilepsy due to some brain damage. The doctor told me it was petit mal. But it was more than vacancies. I had tonic clonic seizures in sleep and wake. I think he was trying to soften the blow!

Anyway he prescribed phenobarbitone which made me so sleepy I refused to take the increased doses he prescribed every time I had a seizure.

At one time I was taking four different medications each three times a day.

I left school but after a year out (mostly in hospitals) secured a place at an Art College and attended a year long course, followed by a three year course at another art college. I met my husband there and we married just about the end of the course. I had our son in the December before the course completed so we took him into college a couple of days a week and left him with my parents other times.

Nobody told me back then (1970) about the potential dangers of all these medications to the unborn baby. So I took them all as usual and thankfully our son is OK.
Anyway when he was about 7 years old I took him to the doctor with a rash or something minor and the doctor, who had just lost a daughter to illegal drugs, took my slurred speech and sleepiness as a sign that I was abusing substances too. He was more interested in my health as he said my son's rash was nothing to worry about.

When I told him all I took was what was prescribed, he checked my records and drew lines through two of the medications, sayong, 'You don't need that one or that one. Try a couple of weeks with just these two'.
The two remaining medications were epanitin (phenytoin) and mysoline (primidon).

Aside from the withdrawal symptoms caused by such a rapid cut off, I did feel better.

That was thirty years ago. Gradually as my body got used to the lower dose I felt sleepy again.

Also the long term phenytoin had effects on my general health (liver etc) that I didn't really notice until I stopped it and got it out of my system.

These effects are extra hairs on my arms and on my fingers and thinning hair on my head. I sopped the epanutins last year and Now my hair is healthier and the unwanted hairs no longer grow.

My complexion has improved since stopping the phenytoin too and
I have more energy, am not so sleepy and have better blood circulation.

The primadon I am trying to withdraw from too now as I had had no seizures at all since 1987 (the time of our UK hurricane!)

But this one is proving more difficult. I read a lot about it on the web and found it is very tricky to withdraw from, as if you do it too fast it can cause status epilepticus (a continuous and sometimes fatal seizure).

So I have see a specialist in a London epilepsy clinic, who has been monitoring my withdrawal.

I had an EEG at the beginning of the year and the result was they found no epileptic activity. This seemed to indicate I could continue to reduce the primidon with no fear.

I am now on a very small dose of only 5 mg twice a day, but believing I had no epileptic activity I reduced that to 5 mg once a day and after three days suffered a 15 minute seizure. This happened in my sleep. It was very sever and the only time in 40 years of epilepsy that i bit my tongue.

I have been taking the 5mg twice a day now since and will try to reduce gradually again after about three months.

The side effects of primadon that I noticed are sleepiness, but once your body is used to the dose it can also cause insomnia (on a low dose). And generally I feel more able to concentrate and to multi-task now I am on a minute dose and have rid my system of phenytoin.

I also feel generally healthier (digestion and so on) with fewer medications and low doses.

Other side effects I wanted to avoid were the fact that phenytoin can affect the thyroid and can interfere with drugs such as thyroxin if you do have a problem with thyroid. I believe it suppresses the manufacture of some enzymes so that even with a healthy thyroid your body does not properly benefit from all the enzymes the gland makes. This led to split hairs and thickening skin. Now my heels are not cracked. my hair healthier. Also had a few problems with creaky bones ( knees mainly). This is age related I know, but exacerbated by epanutin I believe. Since withdrawing from them my knees are better.

And I have been able to lose weight on a healthy diet. On the same diet previously I was gaining weight. (not a slimming diet, just being a bit fussy about certain foods). Of course weight gains affect other things like hair condition and joints etc. So it is hard to put one effect down to one cause. But in general I am healthier not taking so much medication.

For me as i got older I wanted to reduce medications to open up options for other types if I started to suffer from High blood pressure or something like that.

Happily I don't but reducing my intake of anti-epileptic pills has helped my overall health and my energy levels.

the worst thing about Primadon in my opinion is the fact it is so hard to withdraw from. This is usually easier if taking the medication for a shorter time (I have been taking it for nearly forty years.)

But the manufacturers recommend reducing by no more than 10 percent per month. And I have been very patient and have taken over eighteen months to reduce to my current dose.

And even at 5 mg twice a day and with an EEG all clear I had a seizure!


The manufacturers ( in UK anyway) only make Primidon in 250mg pills so if you need to reduce you have to ask your doctor to prescribe it in liquid form. This an be supplied in any strength. 250 mg per 5 ml is usual. But now I am down to this level of 5mg that is only 0.1 ml... Hard to measure. So I have just got a prescription for the liquid at 50 mg per 5 ml. This with a syringe to measure it is proving a good way to be accurate about reducing by ten percent per month to tiny amounts.

I hope your daughter grows out of her epilepsy and that you are able to keep medication to a minimum. It can be very frustrating to have a young body and a sleepy mind. And to be taken by strangers as somewhat dopey despite having a perfectly sharp intellect.

I suppose from the outside it is hard to remember that someone's brain is probably working well beneath the outward appearance of sleepiness, slurred speech and bad short term memory.

But from the inside that can be so frustrating!

Hope some of this helps and it is just my personal experience and not medical opinion or anything.

Here's some info from the web re mysoline (primidon) and side effects:


Mysoline review by Medicalook.com


buy Mysoline Buy Mysoline

Mysoline is generically prescribed as primidone and is commonly used to treat seizures. Mysoline has been used to control tremors although the American Food and Drug Administration has yet to approve Mysoline for this purpose. While it is not completely clear why Mysoline is effective at controlling seizures and tremors although it seems to alter the chemical impulses in the brain which cause seizures and tremors.

Mysoline is not appropriate for everyone. A thorough medical history should be assessed prior to prescribing Mysoline, including a list of current medications. Patients with a medical history which includes porphyria can not take Mysoline. At this time, there are no other conditions that are known to be negatively affected by Mysoline.

The American Food and Drug Administration rated Mysoline as a pregnancy risk category C. It has yet to be determined whether or not this medication will cause harm or birth defects in an unborn fetus. Mysoline has been shown to pass through the mother’s breast milk and might affect a nursing baby. The prescribing physician should not prescribe this medication to women who are pregnant or nursing, or who have a high likelihood of becoming pregnant.

There is a risk of side effects associated with Mysoline. Some side effects may be severe and require immediate emergency medical attention. An allergic reaction is the most severe side effect and may present with symptoms which include facial swelling, such as swelling of the lips, mouth, tongue, or throat, hives, and difficulty breathing. Other serious side effects may include fevers, worsening seizures, or a rash. These symptoms should be taken seriously.

Less serious side effects typically do not require emergency medical attention, but patients should be encouraged to report all side effects. Side effects can often be reduced by reducing the dosage of Mysoline to a more tolerable level. Less serious side effects may include symptoms such as poor coordination or a periodic loss of coordination, dizziness, drowsiness, irregular back and forth movements of the eyes, nausea, and vomiting. Physicians should be sensitive to side effects and attempt to find a dosage that offers the least amount of tolerable side effects, as most patients take Mysoline long term.

Mysoline should be taken exactly as it has been prescribed. Any time a dose is missed, it should be taken as soon as possible. If it is almost time for the next scheduled dose, the missed dose should be skipped to avoid the potential for an overdose. If an overdose is suspected the patient should acquire immediate emergency medical attention. An overdose may present with symptoms which include a loss of coordination, drowsiness, dizziness, nausea, vomiting, blurry vision, irregular eye movements, and rapid eye movements.

Some medications may interact with Mysoline. A thorough medical history which includes the understanding of current medications should be evaluated prior to prescribing this medication. Patients should be instructed to inquire with the prescribing physician before taking any new medications, even over the counter medications, vitamins, and herbal remedies. Medications with a known interaction with Mysoline include antiepileptic medications, acetazolamide, carbamazapine, ethosuximide, methsuximide, phenytoin, ethotoin, mephenytoin, and isoniazid.

Patients should be urged to carry or wear a medical alert bracelet to display the fact that they are taking Mysoline in the event they are unable to speak. A medical identification tag may prevent a lethal combination of emergency antisiezure medications from being given in an emergency.