Posted by drummer (209.105.134.120) on July 18, 1999 at 13:07:46:
I can’t sit still. I’m angry again. I have tried to calm myself but am finding it very difficult. I am feeling suicidal. Just below is a post from Annie. She speaks of the fact that people with Clusters are different. I agree. Different color eyes, hair, skin and different sex organs. Again, I agree. Annie also understands that some medicines that work for me may not work for her. Again, I agree. She also mentions discrimination in terms of people’s symptoms. She says and I quote, “Please, let's not try to discriminate against each other on the basis of symptoms...”.
Here is where I start to disagree. But, I am not angry yet. I believe it is extremely important to discriminate based on symptoms. Doctors do this every day. Let me explain. I went to my doctor and told him that I suffered from one sided pain to my eye, nose and jaw. I told him that my affected eye and nose got teary and runny during the pain. He said that I may have Cluster Headaches. I asked my doctor if the patient before me had Clusters. He said no. He said that the patient before me had pain behind both eyes and was able to sleep during the pain. He said that patient had what was called Migraines. Obviously he was able to discriminate between me and the other patient based on our symptons. Again, I disagree with Annie on this point.
Ok, now the angry part. Annie’s follow up post said this, and I quote, “The things we do to experience relief vary too, from drinking water to chewing ice to whacking ourselves on the head to hands soaking in hot water...etc... and for this reason I recommend this site to everyone I know who has migraine pain. Even if they aren't clusterheads, their pain isn't in their foot, or their back... it's right inside their head with their psyche, just like ours is.
This site is called clusterheadaches.com. WE have info here about Clusters. WE have a survey here to try to help US Cluster sufferers. There is a place to enter your name and E-mail address to attend a Cluster convention next year in Las Vegas. And also, obviously, there is a message board to discuss Cluster Headaches.
Having suffered Clusters for 15 years and feeling alone and never finding a site devoted to Cluster Headaches frustrated me. I will never forget the day I found this wonderful site. I have met many people with Migraines and tension headaches and sinus headaches and stress headaches in the past 15 years. I have NEVER met anyone with Cluster Headaches. I WAS looking forward to meeting people that suffer Clusters like me next year. Now I awake to find that Annie is inviting people with Migraines to a Cluster Headache web-site. Will she invite people with sinus, tension and stress headaches too? Will I awake someday to find a post on the Cluster Headache message board that says……..”Hi, I have sinus headaches and I have just discovered that at my local grocery store there are many over the counter medicines to help me with my pain. Thank You for this site. I had no idea that there was a cure for my unbearable sinus headache pain”.………....This is when I will feel really, really suicidal.
Annie please reconsider directing your friends with Migraines to the many, many, many web-sites devoted to Migraines. Please. This site is about Cluster Headaches. I don’t want to go back to feeling alone again. I don’t want to meet people with Migraines at the Cluster Convention. I don’t want people with Migraines taking the Cluster Survey. I don’t want to read posts from a Migraine sufferer. Please, please, please. I have searched too long and too hard to find a web-site devoted to Cluster Headaches.
Please read the home page to this site. It says, “THIS SITE IS DEVOTED COMPLETELY AND EXCLUSIVELY TO THOSE THAT SUFFER FROM THE DEMON COMMONLY REFERRED TO AS CLUSTER HEADACHES". Please don’t misunderstand me. I don’t KNOW the pain involved with a Migraine. I do KNOW the pain involved with Clusters. If I want to try and UNDERSTAND the pain of Migraines, I will go to migraineheadaches.com.
Am I alone in this feeling? Am I being an idiot again? Should I get the fuck off this web-site? Just Curious. Thanks in advance for EVERYONE'S, (well except Migraine people) advice. Tootaloo. (Bye)