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HeadWay, Issue #001 -- Topamax and the "Off labels"
August 21, 2003

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In this month's issue:

Topamax and the “Off-Labels” - Deliverance or Danger?

Cool off your brain!

Say what?! That pesky nerve . . .

Topamax and the “Off-labels” - Deliverance or Danger?

Everyone's talking about Topamax. The drug's real name is topiramate, and it's being sold around the world as a antiepileptic for adults and children dealing with seizures. But Topamax has been found to be good for other things as well . . . weight loss, and, of course migraine headaches. For years doctors have been prescribing the drug "off label" as a preventative migraine medication.

Topiramate works on the nerves, which is where a lot of migraine action takes place. Migraine sufferers have been using anticonvulsants for a long time (such as Valproate and Depakote). And many of us have also been prescribed "off label" drugs, that is, drugs that are approved but not officially "approved" for what they're being used for. In many countries, off label prescriptions are extremely common. In Canada, for example, it's been estimated that 40% of all prescriptions are off label!

Is it dangerous to use off label drugs? Well, here's how it works:

A doctor can legally prescribe medications off label, based on the knowledge of the medical community. In other words, if you're taking Botox to make you look younger, and it seems to get rid of your migraines as well, and this happens to 10,000 other people, it begins to be clear that Botox may just be a good migraine medication.

It may be years before your government agency officially approves the drug for migraines. Why should you have to suffer all those years if there's something that may help you? And so your doctor prescribes Botox.

There can be dangers – what if the drug acts differently on a person with just migraine issues? What if you take it in a slightly different way than the way it's been tested?

The most important thing is to have a good, informed doctor who clearly understands the risks to you and clearly communicates those risks to you. The use of off label drugs really has a remarkably good record, but you don't want to be one of the bad statistics!

In 2002, migraine specialist Dr. Stephen Silberstein recommended 100-200mg of topiramate per day (lower than the amounts for patients with seizures). Topiramate dosages need to be raised slowly and lowered slowly. Suddenly going off the drug can cause seizures, even if you've never had them before.

The most common side effects are nausea and tingling of the extremities, but there are other possible side effects such as dizziness, appetite loss, double vision, and others.

Topamax is a powerful drug, one that should be used only after others have been properly tried. Recently, a warning was issued that patients should be carefully watched for decreased sweating and hypothermia. Be sure your doctor is aware of this and that you are being watched for changes in body temperature, especially in hot weather. Children on this drug should be watched especially closely. You should also contact your doctor right away if you experience vision problems. Read more about preventative meds at the website...

Cool off your brain!

Here's a delicious dessert based on a recipe from Migraine Headaches and the Foods You Eat: 200 recipes for relief by Agnes Peg Hartnell EdD, RD and Dr. G Scott Taylor. Note that vanilla extract and raspberries are a trigger for some, but for most migraine sufferers this should be a trigger-free dessert delight:

Savannah Peach Melba

4 servings – must be prepared ahead

1 pkg instant vanilla pudding & pie filling, sugar free or regular
2 cups cold skim milk
1 can (8oz) peaches, drained and chopped
1 cup fresh or frozen raspberries, puréed
2 Tbsp prepared whipped topping (for garnish)
Raspberries and mint leaves for garnish

In a medium bowl, prepare pudding according to package directions, using skim milk. Stir in peaches. In 4 glasses (8oz), layer pudding mixture and raspberry puree. Chill at least 1 hour. To serve, garnish with whipped topping, raspberries and mint.

Editor's note: Try using your favourite berry instead of the raspberries. You might also want to buy dried mint leaves that can be sprinkled on top (mint is a folk headache remedy). More on diet remedies here.

Say what?! That pesky nerve...

This month's medical term is "trigeminal nerve". It refers to either of what doctors call the 5th pair of cranial nerves. They are involved in giving feeling and movement to the face, teeth, mouth and nasal cavity. The trigeminal nerve relays pain messages, and may play a key role in migraine by causing inflammation.

For more information and to see a diagram of the trigeminal nerve, click here. The Headache Group from London, England has this helpful diagram.
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