Hi all..!
   This is the first time I am here speaking although I have visited the home page quite a few times (found by a VERY loving & understanding GF).
   I have had the demon in me since 2001. I awoke at about 2 a.m. one night and thought I had something going on in my head due to "black mold" exposure (possible reason we have CH's??). The first one was a 5 on the Kip scale. It subsided after 20 minutes and I fell asleep again. 1-1/2 hours later it was back and with a vengeance!! This time, an 8. By the third bout it was a full blown 10 and I had wondered if I had a brain tumor so I called my mother to drive me to the ER since there was NO way that I could drive myself.
   After tests and scans the doctor came to me and said, "I think you are having cluster headaches." to which I had asked, "Cluster headaches?? What the hell are those?" and he replied, "I don't know." WTH?
   I have since found meds and remedies that lessen the severity but they still come around almost every fall and they last a couple of months.
   I am an EMT in Chicago and currently going through a Paramedic school that places me at various hospitals and on ambulances throughout the city for trauma clinicals and ride time experience. I was surprised at the amount of health care professionals (Dr.'s, nurses, Medics on the job...) who have no idea what clusters are. I tell them about this site and to watch the videos posted on YouTube. The usual response is, "I thought those vids were fake until I went to the website. Holy s#*t! How do you deal with them?"
   Enough babbling (LOL). My questions are, what the hell do we do about work missed? What do we tell a boss that doesn't know about CH's or doesn't care? It has been ten years of on and off pain and frustration but I have no answers for unknowing or unsympathetic bosses.
   Thanks all and Merry Christmas!
Billy

Hello Billy, and welcome. My first suggestion to you is to read this site as you would a textbook: carefully, thoroughly and taking notes. There's so much to learn about this condition. It is not surprising to hear your doc has little knowledge of CHs. Don't blame him/her, but educate yourself and try to educate your doc. You may be the only CH patient this doc will ever see. But you want a high quality of treatment. That includes a good abortive (imitrex injections, imitrex or migranal nasal sprays, high flow O2 with a nonrebreather mask, energy drinks, etc) as well as a longer term preventative. Many have found verapamil in high dose levels (range seems to be 240mg/day to 960mg/day), lithium, a combo of the two, clusterbusting and for some, topamax.

Please know the black mold is doing you no good, but it isn't the cause. You, and we, have some malformation or malfunction of the hypothalmus and that is the culprit. No known cure, but managing these are what this site is all about.

As for work, we all have had to find ways to work with and around our attacks. That's where the use of effective abortives comes in. You will find a "Letter to Employers" that may be useful at the top of this board section.

Please hang around, ask questions, and jump into conversations. Good luck, and God bless. lance

Since you are working in health care, I assume your bosses share your training/orientation. So, you could print out this abstract and give to them:




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]
=====
Educating them is an issue of giving them good info which they can appreciate and not hitting them with a book!

If you don't get a good response from this abstract, get back and we can try another approach.

You are carrying the best abortive in your EMT Rig! I'm a 33 year CH'er, and nohting beast oxygen as an abortive. I pulled off a 31 year law enforcement career by always having oxygen with me. On cycle I'd have an E-Tank in the trunk of my cruiser. An attack would start, 6-8 minutes of huffing 02, I'm 10-8 again. Glad you found us, good luck in your training, having been transported several times by ambulance as a result of work injuries I have a soft spot in my heart for EMT's! ;)

Joe

PS...the sight of a back board still sends chills down my spine..I HATE those things! ;D

Thank you Lance, Bob and Guiseppe (the O2 on the rig was a BIG help!) for all the info! Sorry so late in the reply.

I think I have now turned chronic. My last episodic term was July (normal episodic term for me lasting 3-4 months) of 2012 and they never really went away. From shadows to a Kip of 2-4 lasting only 5-15 minutes during the year and now they are back to full blown since about two months ago. I have gone back on the full regimen of 40-60mg of Prednisone, 120mg of Verapamil and O2 daily. I have also started 10,000 IU of D3 supps daily to see if it will help.

I didn't finish Medic school because of this rotten ba$t#&d and now fear that I will not be able to work ANYWHERE anymore. When I have to drop what I'm doing every 2-3 hours for a half hour to an hour (no O2 available but on the meds) the employers tend to get a little irked. I have been asked to leave three jobs because of CH's.

My question is...Is there anyone who has gotten disability, S.S.I., etc. due to this affliction and not being able to get through a workday? Is it a "recognized" disease?

Thanks for the help! 
Billy

Disability is possible but requires a long, extensive history to justify.

I have a vague memory of 1 or 2 folks who have passed the test but no real guidance to offer.

See:  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE