Roxie’s Rag

Long ago, my maternal grandmother could be seen at times with a rag tied around her head.  Apparently, people who knew her accepted this as Roxie’s remedy for the strange headaches she had.  My mother certainly did and told the story to me when she was having her own strange headaches, but she adapted to the progression of medicine and didn’t choose the ‘rag around your head’ method.  Roxie was never diagnosed and probably never sought medical attention of any kind for the powerfully odd headaches.  Little did she know that she would be the start of five generations of this strange, aggressive, life altering, uncommon, misunderstood, and debilitating thing called cluster headaches. 

As a child, I remember my mother standing over the Revere Ware on the stove rocking back and forth with tears in her eyes as she cooked.  We couldn’t understand why she didn’t go lie down if she was hurting that badly.  She would even go to Bridge club later and be fine.  In my mind, she sure had bad headaches that scared me but they never lasted too long.  Even with a diagnosis back then, the only remedy was pain medication and my mother was opposed to that, so she used it very sparingly for emergencies.

A few years later, my older sister began having strange and powerful headaches at age 16, but hey, she was sweet sixteen and I was only 9 so I knew I didn’t have to worry because this was surely something old people got.  But things worsened for my sister in her twenties.  These headaches, with a mind of their own and a specific agenda, became unbearable for her.  She was not particular about pain meds like my mother was, but it didn’t help because they never worked.  So for the next several years, Jennifer became a regular in the emergency room twice a year for six weeks at a time.  Until this day, I have never seen anyone in the pain my sister has experienced all of her life, that is until Imitrex.  It literally gave her life back to her.  She has been left with a permanent droopy eyelid, though.

Little did I know what was lurking around the corner for me.  I was delighted that the only kind of headache I had was a sinus problem that was always worse on one side of my head, but of course the joke was on me!  This actually continued for years without a pattern or any noticeable triggers.  Then somewhere around 30, my headaches took on a life of their own also and they were very mad and wanted me to know it!  Even though we knew what is was, my doctor said it was still necessary to rule out other concerns so we did all the tests which were negative, naturally.  I was sent to a neurologist for him to tell me what I already knew at this point…clusters.  Thank you, Roxie. 

Next in line was my younger brother.  He said no way did he have them, though he did have a lot of eye pain with sinus problems that he dealt with often.  We chose believed him and hoped for the best.  After all, he was a male and in our family it had been only females so far.  Eventually, he got the big one.  That sinus headache that suddenly starts in the night on one side of your head and increases in pain so quickly and intensely that you know something absolutely terrible is happening and 911 should be called immediately.  He also went to doctors and specialists that ran tests to get the diagnosis he dreaded.  Welcome to Clusterville!

Things get somewhat fuzzy right here as to who was next in line for this dreaded club we had joined.  My sister has three children and three grandchildren.  Two of her children have had clusters for years now, though one of them has changed to migraines, and two of her three grandchildren have them.  My brother has one child and she was the youngest to get them, though diagnosed by preschool with migraines and now clusters.  My two children still seem to have no early symptoms at ages 22 and 26.

Since we live in three different towns, we have collected a lot of doctors over the years, but few that knew anything about how to treat this rare syndrome in our heads until more recently.  Needless to say what our friends and coworkers thought about this condition when the medical field didn’t even know much about it.  We learned early to say as little as possible for various reasons.  1) It could appear you wanted drugs.  2) People always said they had them, too, one time but Tylenol helped…and that was maddening.  3) There was no way to describe to anyone how bad it was and if you tried, they thought you were a whiner or a hypochondriac.  4) When information did start to surface more readily, it was scary and the negative characteristics were certainly a deterrent for employment or a mate. 5) And now, it is associated with everything from spectrum disorders to mental illness on some level (which on a more positive note may also include creativity and intelligence).  The silver lining!
It has certainly been a horrible curse in our family to have theses headaches, but I cannot imagine being alone in this.  We have not only had the advice of many doctors, collectively, but we have each other’s complete understanding, experiences, empathy, courage, and love.   

We have all learned to be good detectives because of having clusters.  Always searching, predicting, anticipating, charting, analyzing, suspecting, acting on a tip, changing procedures, interviewing, researching, then coming to conclusions that you find out are wrong and starting all over again.  Then eventually your cycle is over and life has never been grander!  You throw out those charts, quit that reading, taper off the medication and pretend it will never happen again.  Life is good.  Then I see a hippie, motorcyclist, runner, gardener, or young kid with a rag tied around their head and I think of Roxie and know they will return…but maybe not.   ;)  

Thanks for reading our story!

The beauty of your story is how it reveals the strength of character which has been passed through the generations. Enduring, without self-pity; continuting to seek help, without yielding to what, in others, may have evolved into the various escapisms available to us--alcohol, resignation, despair.

Earlier generations had to develop such qualities of character in the absence of knowledge, medical care, and assistance which we, today, taken as a given.

Thanks much for sharing....

Thanks for sharing your story, makes me cherish all my meds that little bit more..



Lefty...!

I have never heard or read that these things were hereditary. I wouldn't wish these on an enemy, much less even think about passing these demons along to my children or grandchildren. :'( Jobette

Since I have been reading this site and the info from Bob, it seems as though the new findings indicate that they can be inherited.  Sure is in my family!  Hope you don't pass it on!  Thanks for your comments. :)

Neurology. 2001 May 8;56(9):1233-6. 


Increased familial risk of cluster headache.

Leone M, Russell MB, Rigamonti A, Attanasio A, Grazzi L, D'Amico D, Usai S, Bussone G.

Carlo Besta National Neurological Institute, Milan, Italy.

The authors studied the occurrence of cluster headache in the families of 220 Italian patients with cluster headache. A positive family history was found in 20% (44/220) of the families. Compared with the general population, first-degree relatives had a 39-fold significantly increased risk of cluster headache. Second-degree relatives had an eightfold significantly increased risk. The increased familial risk strongly supports the hypothesis that cluster headache has a genetic component in some families.

PMID: 11342697 [PubMed]

Is there also any history of Bipolar? The reason that I am asking this is because of some of the meds that are used for Bipolar are or may be used for CH. There is no pun intended, this is something that I have been thinking about. I have a brother who has been diagnosed with bipolar and some of our meds are the same. I thought that where his was coming out as a personality/emotional disorder and mine was these HEADACHES ( for a lack of a better word).:-/ :-/ Jobette

Jobette:  Meds are often developed or discovered for one disorder and found to be of benefit for other, totally unrelated, problems. For example, some of us use Zyprexa to abort CH but it was developed to treat psychotic disorders. Some anti-depressants are used with chronic pain disorders NOT because the person is depressed but because they help reduce the pain.

It's the action of the med which is important. One med can be effective for a variety of problems. So, no, there is no relationship between CH and Bipolar.

Joni    .... That is a very well written story.   If you are not a writer already,,,,you should be.

thanks for sharing that. :)        Lorac

Lorac-
Thanks for the compliment!  But no, I'm not a writer.  I am a 55 year old retired school teacher of 31 years with lots of thoughts, though.  You are sweet!   :)