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Cluster Headache

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Preventative Drug Treatment for Cluster Headache

 I have been told that I have episodic cluster headache. What is the best way to stop the cluster episode?

The cluster can be stopped, for some people, by taking a short course of high-dose oral steroids. ‘High’ means about 60 mg, ideally as an enteric-coated tablet, taken for two weeks. An ‘enteric coated’ tablet is one that has a coating that allows the drug to pass

through the stomach and arrive in the small intestine where it is released and absorbed into the bloodstream. Preventing the drug from being released in the stomach prevents any side effects such as heartburn, indigestion and possibly stomach ulcers.

My specialist says that I should take a high-dose course of steroids but I am concerned about side effects. Should I be?

Any drug can cause side effects, and the side effects will vary according to the drug you use. You and your doctor choose a drug because of the potential it has to fix or cure your symptoms. The challenge with drugs that might cause significant side effects is how good they are at curing your problem . . . and how bad your problem is in the first place.

Steroids can cause symptoms of heartburn and indigestion and even an ulcer.

They can also lead to aches in the muscles and thinning of the bones such as osteoporosis and possibly even fractures of some bones.

They can cause bone death (necrosis) of parts of bones such as the head of the femur, or hip bone. Who gets these side effects, how often they occur and whether they occur at all is impossible to predict.

The decision to take a drug can be a difficult one that you should make in discussion with your doctor.

If I decide to take steroids for my cluster headache, can I just stop them when they’ve had their effect?

The only way to find out whether you can just stop them, or should gradually reduce them, is to try it out and see what happens. Some people find that they can simply stop their steroids once they have completed their course and they do not get a flare-up of their cluster headache. Others find that they have to reduce the dose slowly over a week or two in order to be sure they have completely suppressed the attack. A slow reduction of steroids is best with the higher doses of steroids.

I have taken steroids and they stopped my cluster headache within a few days but every time I stop taking them the headache comes back within a few weeks. What can I do?

I the steroids work but the headache come back again, it may be that you need a slightly higher dose, or you need to take it for a little longer or you need to think about using a second drug to prevent the headache from coming back when you stop the steroids. Contact your doctor about this to discuss the options that are available to you.

The steroids work really well in stopping my cluster headache but I get quite bad indigestion with them. Is there anything I can do?

Yes, there is. If steroids really are that effective, taking a drug to protect your stomach will prevent the indigestion from developing. The drug usually used to achieve this is in a class called proton pump inhibitors; the most commonly used one is omeprazole. Talk to your doctor about the problem to find the best solution for you.

I have cluster headache and the specialist has suggested that I need to take a preventative drug as he feels it is the chronic form. What are my options?

There are a variety of drugs that can be used but the research evidence suggests the best one is the drug called verapamil. Verapamil is a calcium channel blocker that is usually used to treat certain heart arrhythmias, angina, and hypertension. Other drugs have been tried, such as Epilim (sodium valproate), topiramate and lithium. Studies that looked at their effectiveness have met with varying degrees of success.

The specialist has told me that I need to increase the dose of verapamil but will have to have an ECG every time I increase the dose. Why?

Verapamil can be very effective in managing cluster headache. The drug has an effect on how the electrical impulses pass through the heart: when used in a dose appropriate to treat cluster headache, this effect can be significant. Doing a heart tracing - he ECG -allows the nurse or specialist to make sure that no abnormal change is happening to how the heart is working.

My doctor that the dose of verapamil suggested by the specialist is too high. If that is the case, why has the specialist suggested it?

Drugs are licensed for use in specific conditions and the doses used have been confirmed in a variety of drug trials. It is uncommon for those drugs to be used at maximum doses.

When you use these drugs in specialist settings and the normal, more standard, doses do not seem to have the desired effect; the boundaries can be stretched a little. If your ECG is normal, your specialist will suggest pushing the dose up a bit in the hope that this will stop your cluster headache; then the dose can be reduced to more normal levels as soon as possible.

Verapamil doesn’t work for my cluster headache, so what else can I try?

You say that verapamil does not work for your cluster headache but you do not say what sort of dose you have used and how long you took it. You need to increase the dose of verapamil to your maximum tolerated dose, one that does not cause side effects, or the maximum recommended dose for the drug itself. You also need to take the verapamil for long enough to work. It usually takes verapamil two weeks at any one dose to produce its effect, and if it is effective then it should be continued for long enough.

How long that is depends on how long your episode of cluster headache usually lasts. I usually suggest two weeks after you would have expected the bout to end normally. If verapamil still does not work, another possibility for you to try could be an anti-epilepsy drug, such as sodium valproate or topiramate or lithium.

I know that anti-epilepsy drugs help in migraine, but can they help my cluster headache?

Yes, they can. Some scientific studies have looked at different antiepilepsy drugs and how effective they might be in preventing cluster headache. The degree of effectiveness is variable but, if all else fails, nothing ventured nothing gained.

If I go ahead and try an anti-epilepsy drug, how do I decide which one to take?

Choosing a drug is about trying to decide how effective it will be and what sort of side ffects it can have. If one anti-epilepsy drug (AED) doesn’t work, trying an alternative is worth considering. Epilim (sodium valproate) and topiramate are likely to be the first choices that your doctor will suggest, on the basis of current evidence.

I currently take lithium for my cluster headache. Why do I have to have a blood test every three months?

It is important to make sure that you are not taking too much lithium, and this can be checked with a blood test. Lithium has been known to lead to an underactive thyroid gland and thyroid function should be checked regularly, initially every three months and then, once the dose is stable, every six to twelve months. The blood test will check how much lithium you have in your blood, and check how your thyroid gland is working.

I’m going to be taking lithium. How long do I need to take it?

Using a preventative drug for cluster headache is about suppressing the bout of episodic cluster headache. The length of each bout tends to vary from person to person, so how long you take the lithium will vary accordingly. If your bout lasts three months, take it for four months; if it lasts for six months, take it for seven or eight months.

Some people develop a more chronic (long-lasting) form of cluster headache and they have to take preventative treatment on a more permanent basis, possibly forever.

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