Hi,

I'm about 5 weeks into an episode right now and am having a lot of time off work.  Days here and there when needed are mounting up.  My boss is generally pretty good but he works at a different site.  I have one co-worker in my dept. and someone hinted that I should go off sick for several weeks if necessary as having days off here and there were 'messing him around' not knowing if he would have to cope with working alone.

I dont know what to do for the best.  My family (mother in particular) puts a lot of emphasis on 'being at work' and 'carrying on as best as possible'.  This translates into pressure on me.

I'm off work again today having a Kip6 at 3am and a Kip9 at 6am.  I dont know what to do.  I think I'll give a copy of 'Simons Letter to colleagues' to my line manager and co-worker although I feel somehow as though they will read anything to do with cluster headaches as being over-the-top.  After all, they simply can't be that bad, can they?  

Is there an equivilent letter for family?  Or what resource e.g. document, video clip etc would be best for showing family what I am actually having to deal with?

Thanks guys.

Rob.

Simon's letter isn't hysterical in tone and any reader who can't respond to the parallel to the pain of child birth is going to be a hard sell, in any case.

I don't grasp your point about it being "over the top" when, in fact, what you want to achieve is a realistic awareness of what is happening to you.

I'd give the letter to anyone, offering to discuss any questions which it arouses. When what you wish to convey to the reader is new and strange to their experience, it would be helpful  to have as many talks with them as is needed.
----
Your message doesn't hint at whether your meds are working or not. Can we be of any help in this area?

I just found your intro message and am concerned that you are not using any of the mainline meds. The Prop. you have tried is an old migraine med which has not value for CH.
Let me throw some current literature at you for your consideration and discussion with the doc.
======

 
Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
=========
HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
_________________________________________
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Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002. Rozen)
================
Treatment guidelines from Europe

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A. May, M. Leone, J. Áfra, M. Linde, P. S. Sándor, S. Evers, P. J. Goadsby:
EFNS guidelines on the treatment of cluster headache and other
trigeminalautonomic cephalalgias.
European Journal of Neurology. 2006; 13: 1066–1077.

Download free full text:
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(Thanks to "cluster" for link.)

Bob Johnson wrote on Jun 8^th, 2009 at 10:48am:

Simon's letter isn't hysterical in tone and any reader who can't respond to the parallel to the pain of child birth is going to be a hard sell, in any case. I don't grasp your point about it being "over the top" when, in fact, what you want to achieve is a realistic awareness of what is happening to you. I'd give the letter to anyone, offering to discuss any questions which it arouses. When what you wish to convey to the reader is new and strange to their experience, it would be helpful  to have as many talks with them as is needed. ---- Your message doesn't hint at whether your meds are working or not. Can we be of any help in this area?

Hi Bob, as you possibly know it can be difficult to really get people to grasp how painful and debilitating CH can be.  That's my experience anyway.  I guess I worry that when presented with any information on CH - some people would be unwilling to beleive it.  That they can't get away from the "it cant possibly be that bad" syndrome.

Anyway, I'll just have to try it and see what response I get I guess.

As for my meds, the Imigran seems to work very well.  However, I'm in between GP's at the moment and my supply is limited.  I'm keeping my current 4 injections for use during the day when I might be out in public as it were.  Once I see my new doctor this week I'll have a better idea of how generous they will be prepared to be.  I only used the propanolol back in 1994.

Thanks.

Don't expect it all to sink in immediately.

After nearly 40-years as a mental health counselor I learned that all we can do is offer our best and hope that it will be accepted.

You are NOT responsible for another's willingness or capacity to understand. We simply can't control them.

Hi Rob,

Trying to balance work commitments and CH's is Defo a very challenging aspect of this affliction we all share. Exhaustion is definitely a side affect of Ch's that the docs and general public will never understand.  Have you tried Melatonin to deal with the night time hits. I know many on the site take the little E tanks of 02 to combat hits at work and when mobile.

Show work colleagues, family and friends the video of Chuck and Artonio taking big hits on youtube. Trust me actions speak way louder than words....!


lefty...!

Hi Lefty,

I agree actions speak louder than words.  I thought about sending them the links to:

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and

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Has anyone seen these video clips?  I thought they were quite good.  I think it might be better hearing an expert and people speaking about Ch rather than reading words from a page (no matter how well written the document I might add)

and then asking them to spend 20 seconds or so looking at Chuck and Artorio having their attacks.

I'm grumpy as hell having a shadow all day.  Just sat at home alone.

Wow, saw that second video just now for the first time...
I think we need to get some cards printed with that link on them and then just start handing them out !

Hi Rob,
Have you asked your doctor for a prescription for O2? If you get on it right away as soon as you feel an attack coming on, a Kip 6 at 3am or a Kip 9 at 6am may not make it past Kip 3 or 4.

I have several tanks of O2 at home and one at work. I discussed with my boss so he knows what's up if I disappear for 15 minutes, and he's cool with that. I don't think he would be so understanding if I missed several days though.