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WHAT YOU SHOULD KNOW:
- Cluster headaches are a chronic (long-term) condition that causes very bad, sometimes unbearable head pain. The headaches often happen in "clusters" or groups. The headaches may happen one or more times a day over a period of weeks or months. Each headache can last from 30 minutes to several hours. During an active headache period the headaches happen daily, often at the same time every day. At the end of the cluster cycle, the headaches suddenly stop. They usually do not come back for six months to a year, or even longer. The periods of time where you do not have cluster headaches are called remissions (ree-MISH-uns).
- It is not known for sure what causes cluster headaches. They happen more often during the spring or fall, when the amount of daily sunlight changes. Glare from sunshine or lights, drinking alcohol, smoking, and certain foods may trigger a headache to start. Napping in the daytime may cause a cluster headache also. Some medicines, such as nitroglycerin ("nitro"), may cause a cluster headache. Medicines may be taken during an active period of cluster headaches to decrease the number of headaches you have. There are also medicines to help stop a cluster headache once one starts.
AFTER YOU LEAVE:
- Keep a written list of the medicines you take, the amounts, and when and why you take them. Bring the list of your medicines or the pill bottles when you see your caregivers. Learn why you take each medicine. Ask your caregiver for information about your medicine. Do not take any medicines, over-the-counter drugs, vitamins, herbs, or food supplements without first talking to caregivers.
- Always take your medicine as directed by caregivers. Call your caregiver if you think your medicines are not helping or if you feel you are having side effects. Your caregiver will tell you how long to take any daily medicines you may need during a flare-up. Remember that you may need to taper (slowly decrease and then stop) some medicines. Your caregiver will tell you how to do this if you need to.
- Take your fast-acting medicines as early as possible during the start of a cluster headache. Some medicine may not work as well at controlling your pain if you wait too long to take it. If you are taking medicine that makes you drowsy, do not drive or use heavy equipment.
When is my next doctor's appointment?
Ask for information about where and when to go for follow-up visits:
For continuing care, treatments, or home services, ask for more information.Bring your headache diary with you when you see your caregiver.
What are some other ways to control my cluster headaches?
There is no cure for cluster headaches, but with medicines and treatment they may be controlled. Ask your caregiver for the most up-to-date treatments for cluster headaches. The following are some things that may help your cluster headaches.
- Avoid smoke, and avoid drinks with alcohol: It is never too late to quit smoking. Besides causing cluster headaches, smoking increases your chance of having a heart attack, lung disease, and cancer. Alcohol also can trigger (start) your cluster headaches. Alcohol reacts badly with many of the medicines used to treat cluster headaches. Avoid alcohol, especially during a flare-up of cluster headaches.
- Find and avoid other triggers: Use a diary or calendar to keep track of your cluster headaches. Write down when your headaches start and stop, what you were doing when they started, and your symptoms. Record anything you ate or drank during the 24 hours before the headaches started. Describe how the pain feels, where it is, and how bad it is. Keep track of the things you did to help your headaches and when you did them. Record whether these things helped your symptoms or not. This record will help you learn what may trigger your headaches and what helps them the most.
- Oxygen: Some people are helped by breathing extra oxygen during a cluster headache. You get the extra oxygen by breathing through a special plastic mask that is attached to an oxygen tank. It is only used for a few minutes, and only during a cluster headache. Your caregiver will tell you how you should use oxygen if you need it to treat your headaches.
- Special care: If you are having trouble controlling your cluster headaches, you may need to see a special caregiver. Some caregivers, such as neurologists (nu-ROL-oh-jists) or those at pain clinics, specialize in treating cluster headaches. Rarely, a person with severe (very bad) symptoms that are not helped by medicine may need surgery.
For support or more information:
Some people find it helpful to talk with others who are also living with cluster headaches. Support groups and national organizations can help you learn more about cluster headaches. Ask your caregiver for a support group in your area, or contact the following organizations:
- National Headache Foundation
820 N. Orleans, Suite 217
Chicago , IL 60610
Phone: 1- 888 - NHF-5552
Web Address: http://www.headaches.org
- National Institute of Neurological Disorders and Stroke
P.O. Box 5801
Bethesda , MD 20824
Phone: 1- 301 - 496-5751
Phone: 1- 800 - 352-9424
Web Address: http://www.ninds.nih.gov
CONTACT A CAREGIVER IF:
- You have a severe headache that happens with a stiff neck and a fever.
- You start feeling anxious or depressed (sad) because of your cluster headaches.
- Your headaches get steadily worse over a period of weeks or months.
- Your headaches happen so often that they affect your ability to do your work or normal activities.
- A treatment that used to help or prevent your cluster headaches no longer works.
SEEK CARE IMMEDIATELY IF:
- You become less alert, drowsy, or do not recognize familiar people or places during a headache.
- You faint (pass out), become confused, or have a seizure (convulsion).
- You have new problems with speech, vision, balance, or movement.
- You have thoughts of hurting yourself.
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