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        Cluster Headache Help and Support >> Cluster Headache Specific >> Maybe this note can help someone
        
(Message started by: eyes_afire on Apr 25^th, 2007, 1:30pm)

Title: Maybe this note can help someone
Post by eyes_afire on Apr 25^th, 2007, 1:30pm

I find myself in the position of needing to make my relatively new work superviser aware of my relatively new cluster headache cycle. So, I wrote an email... it's an adaptation of the 'letter to employer' theme. Sometimes words are hard to find so I'm going to post here what I wrote in case someone else may find it useful. This approach won't work for everyone and I don't recommend it for everyone but I have a good scientific work environment and can 'hide' if necessary. Feel free to steal it.

Here it is:

Unfortunately, I have a neurological problem that I feel I need to make you aware of. I suffer from cluster headaches. I don't publicize it because I'm embarrassed. A few people here know of my problem, but have never seen it. I'm not asking for any sympathy, I'm just mentioning this to you in case I have to exscuse myself for a short time to medicate or deal with it. I bring this up now because my glorious 2 years of remission have officially ended as of the last week of March and the flare-up is now rapidly escalating.

The term 'cluster headache' is somewhat of a misnomer as it's not like any type of normal headache. The current theory is that it's caused by abnormal hypothalmic activation of one of the three main branches of the trigeminal nerve (for me it's the most common eye branch). The result is attacks of extreme facial pain (this is an understatement) lasting for 30 to 90 minutes (unmedicated), typically at regular intervals during flare-up (i.e. once every 24 hours, once every 6 hours, or at specific times of the day or night). A flare-up or cycle typically lasts anywhere from several weeks to many months (or in extreme cases a year or more). Since it involves the facial nerves, other symptoms may include burning eye, watery eye or nose, droopy eye, or ganglion lump on the back of the neck.

There are no officially FDA approved treatments so I have an unsavory choice of unusual treatments such as 100% oxygen, imitrex, cardiac meds, corticosteroids, lithium, or anticonvulsants. Painkillers don’t work since they’re neither strong enough or fast enough. Right now my typical routine is to wake up at 2am, take some imitrex, thrash about on the floor in extreme pain for 45 to 60 minutes, then go back to bed. Since this flare-up is escalating, I’m likely to experience daytime attacks. New for this flare-up is that I’ve also experienced an occasional panic-attack.

I’ve been living this for over 10 years, so I expect that I can minimize or eliminate any work-time attacks. But I may have to occasionally exscuse myself for a time. Of course, I’ll make up any missed time and you may notice an extra clock-out on my timeslip if things get bad.

Thanks for listening.

Title: Re: Maybe this note can help someone
Post by TxBasslady on Apr 26^th, 2007, 12:26am

Bless your heart, Steve.

Sorry the CH has returned, babe.

Maybe you'll get a 5 year remission after this nasty cycle, eh?

Vibes and much love,

Jean

Title: Re: Maybe this note can help someone
Post by pieface_49 on Apr 26^th, 2007, 11:16pm

Hello?

The "Ganglion lump in the back of the neck" should have dismayed them :). How do you tell your employer and employees what is wrong with you? Heck, I just tell em I am nuts, go head mess wif me :). I sent my co-workers the "Letter to co-workers". They have seen me enduring up to a half hour or so. Otherwise, I will leave and go to my car. My co-workers now know it is not nice to say the least. I am lucky to have worked with them for 11+ years. Still have not been brazen enough to tell my employer. They have my medical records, so who is fooling who?
Quote:

misnomer as it's not like any type of normal headache.

. Who are the idiots who named it that? Please, let me sit in their office during a bad episode :o
Really all of the above does not matter much. The question is, what can I do about the illness I have?

Donnie