My Nonprofit Reviews
Rkkk
Review for The Cluster Headache Support Group, Inc., Tucson, AZ, USA
This support group is suppose to be for people with cluster headaches but has turned into a forum for migraines. The majority of the group appears to have cluster migraines and most of the posts have references for people with migraines and not clusters. The admin is even posting links to her blogs which is migraine based which she gains financially by how many people she gets to view her blogs. If someone is obviously referring to their migraines such as 17 hours or 9 days of headaches no one corrects them that cluster headaches don't last that long. They also talk about triggers that are migraine related and not cluster headache. The admin even said in one post that cluster headaches have very few triggers yet no one says anything when a long dragged out post on triggers is made. They really need to change their name to cluster migraines as that is the information that is being supported in this group. As a person with only cluster headaches this information is very confusing to say the least but also I honestly don't feel like I fit into this group at all. I hate to see new members getting the wrong info regarding their condition but that is exactly what is now happening in this group ever since the former admin stepped down. They need to keep migraine information out of this forum or change the name.
We are so sorry that you found the information confusing. That is good feedback for the moderators and staff. In fact, many cluster headache sufferers also have migraine headaches so it is inevitable that the topic will come up from time to time. There is actually no such thing as cluster migraine. We do also support all Trigeminal Autonomic Cephalgias, to include SUNCT, SUNA, Hemicrania, etc. Triggers are relevant to both headache types and are important to recognize in order to reduce your number of attacks. They are similar to those of migraine sufferers although migraineurs do react more frequently to bright light (photophobia). As you become more knowledgeable about CH, you are welcome to come back. We tend to have many very knowlegeable members and moderators.
