It's not fatal.

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Posted by Mack Finley ( on November 14, 2000 at 00:44:51:

In Reply to: cluster buster posted by Alastair on November 13, 2000 at 13:35:55:

I am sorry to hear about your diagnosis. I have had clusters for 20 years. They are bad, but always remember, THEY CAN NOT KILL YOU and do end after an hour or two. I know it feels like dying however. I am not a doctor, and this advice is from a sufferer, not a medical professional.

Make sure to explain clusters to those who you live with and love. Have them speak with your Doc if needed. Remember that those who love you will suffer terribly when they see you suffer, so let them know what you need and how you have to be treated. Good people can feel guilty because they can't really help you but want to. Teach your loved ones about your meds.

I would not use the term "cluster headaches" with your co-workers nor employers. Use the term "migrane" instead if you have to, people are familiar with it. It is best not to tell anyone anything if you can, but hey, I have been forced to call in late and even sick because of attacks.I told a boss once I had clusters and he looked at me like an alien for the next couple of years. From then one, if they had to know, it was migranes.

You will enjoy your pain free times and gain an appreciation of life that you may not have had before. Having your physiology pushed to its limits can give you a sympathy for others in pain
and perhaps, even a certain wisdom.

As for surviving a cycle, try and reduce stress as much as possible. Learn the feelings and sensations that procede an attack so you can get to a safe place and take your meds. There are a few things in your corner. The attacks ussually happen during sleep, or afer coming home from work when you rest. At any rate, you will notice some pattern so you can predict them. If you have nocturnal attacks (11 pm to 4am) try this, it has worked for me and allowed me to work and live. During my cycle I come home from work, eat like a pig and go to sleep at 7 or 8. When my clusters wake me up in the middle of the night, I suffer the horrors, but at least I had enough sleep so I could function at work the next day. I am not a millionaire, but I have a solid work record, even living with clusters for 20 years. It is possible.

Lastly, be patient with your meds and your doctor. There are many diferrent treatments and nothing is perfect, BUT MEDICINE WILL HELP! Keep a diary of what you take and when you take it along with notes of what happens. Dont be afraid to tell you Doc what works and does not. There are no silver bullets, but lots of stuff that will make your attacks much easier. Imitrex works for me. It has side effects and often the attacks will come back, but it is better tha banging my head on the floor.

I am not sugar coating clusters. They are Rough with a capital R. Email back if you like

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