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Posted by shannon ( on February 07, 2002 at 17:07:34:

I am a newcommer tht just found your site. I hope you will accept me, because I have been told by several neurologist that I do not have cluster headaches. They said that my pain can't be cluster headaches because I get them all day and all night with 10 minutes pain free and 15-20 minutes in pain and back and forth for about 2 weeks at a time. Oh and also because I am a woman. I started having these mystery headaches about6 years ago. My husband took me to the emergency room after the first 36 hours of my non-stop screaming and crying only to return home with me so wasted on drugs that I couldn't walk and my screams down to a moan. The pain wasn't gone, I just had less energy to react with. The first emergency room trip, I was told that I had a severe sinus infection and went through sinus xrays to disprove that one. The next emergency room visit, I was told I had a brain tumor and sent to a neurologist. The neurologist said I did not have a brain tumor, but instead had scar tissue wrapping around the nerve ganglion in my face whenever my allergies acted up. He put me on allergy medicine and a medicine that deadens your nerves so you just don't feel them. This didn't stop the headaches, but I did get some pretty bad cuts on my hands because I didn't feel pain there. Then I was put on everything from antinflamatories to anti-convulsive medication with a steady stream of narcotics to "ease the pain". One morning, I got a headache as soon as I got to work and it made me light headed as usual. My boss insisted that a co-worker take me to the emergency room. I didn't want to go because I no longer had any faith in emergency rooms. The doctor listened to my long story and then grabben a spray hose that was attached to the wall and sprayed a liquid up my nose. Within seconds my pain was gone. I wouldn't leave his side until he called my neurologist and got him to call in a prescription for it for me. It turns out that it was Lidocain. For the next 2 yrs I kept Lidocain with me or close to me at all times. Then I went a year without a headach. Not knowing anything about cluster and related headaches yet, I thought whatever problem I had resolved itself and didn't think anything else of it. My husband and I then moved from Austin to Houston and my headaches returned. Now, I have been having them again for 4 months and have been though another series of medications and nacotics that don't work and a series of doctors who refuse to prescribe Lidocain even though I have told them that it definately works for me. I don't understand why they refuse to give me what works and insist on giving me addictive drugs that I can't work on. I am now having to drive 3 hours from Houston to Austin to my neurologists office for visits just so that I can get the medication that works for me. I do feel better knowing that even though I may not have actual cluster headaches, there are people going through similar things and I am not alone. I am lucky that my husband and son have learned to live with my kicking, screaming and staying active all night during my cycles. Just like clusters, I can't stay still or they get worse. The only sleep I get is during the 10 minute repreaves. I am lucky enough that I work from home and only go out for work when I want to, so I can keep working through it. I don't know how ya'll make a living with this. I did loose 2 jobs over it.

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