I should have introduced my self in the beginning. Instead I was so excited I just jumped right in and forgot this part.

I am a mom of 6, age 37. I have been married to my highschool sweetheart for 18 years. I was diagnosed in my early 20's with CH. The attacks started during my first preganancy. Mine are episodic. I tried what they called Oxygen therapy back then did not seem to help. I now know from others here that it has changed much over the years. I also had trials with Verapamil and Imitrex. I seemed to have to many side effects from the drugs. Last year I resorted to prednisone, that was a mistake even though the taper stopped the episode, the steroids made me real mean and anger while I was on it.

My husband had heard a report on cayenne and how it may help with headaches. So I tried during an episode. I developed my own remedy of cayenne and caffeine and have been using that for the past several years to get through my episodes. If I catch it early enough I can stop the CH but I have not been successful in stopping a whole episode until now.

I believe the terminology has changed over the years. They used to use the term aurora in describing the beginning of a CH, maybe this has changed to shadow? I am not sure. Shadow is a new term to me and I am unsure of its meaning.

Well, I look forward to meeting others that no my pain. I am excited to learn all of the new info. I should have joined a support group many moons ago.

Another tidbit about me, my youngest daughter who is now 4 was born with congenital hydrocephalus. We moved to Northwest from my native home in Florida in 2005 for her to have brain surgery. Her  pediatric neurosurgeon is one of the best in the country. She has had 5 surgeries in all. She has a ventricular peritoneal shunt. She has now been stable for a year, and I have been able to rest a bit.

I will try to insert pic of my husband and I and my kiddos! If I do not get it right maybe someone can tell me how to get the pictures displayed.
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My Hydro baby "Kindrid"
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Delightful family & pictures!

If you are a bit out of date, let me recommend printing this whole article (link 2nd line) as reflects current thinking re. CH. Then get back to us with specific questions.
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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 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]

What a beautiful family! Bob has given you your required reading assignment. There are some great treatments available, the good news is you'll never be alone with this stuff again!

Joe

Hi Cassie........ Thanks for sharing your story AND your family. I just want to welcome you aboard and if you have any questions...just ask.

Thank you so much for the warm welcome Jimmy, Joe, and Bob.

I do have a couple of questions since reading the info from the link that Bob gave me. I will post it in the Cluster Specific catagory.

Thanks Cassandra

Just wanted to add my "welcome" to the mix, Cassie.  Hope to see you posting much more.

I'm glad to see you're a "seeker"--questioning some of the received wisdom, and pushing us to assess new approaches and thoughts about this condition.  It's how we learn, and how new insights are arrived at.  Expect that we'll hash them over, and discuss them 'round and about.  It can be a rough-edged process sometimes, but I think you'll find that nearly everyone is well-meaning, and wishes you well.

Many thanks.

You have a beautiful family.  Thanks for introducing us to them.   :)

Best wishes,

George

Hi Cassie and welcome :)

Georgous family.  Your kids are adorable.

pf wishes,

Beth

Thank so much for your warm welcome Beth!

Cassandra   ;D

Welcome to the forum Cassie from sunny England, great family, great pics, adorable hydro baby.
                                      all the best Shaun

nice pictures and a happy family. please make sure that none of your kids have the symptoms of cluster headaches. i am going to barnes and jewish hospital here in st. louis and the first thing the neurologist asked was whether i had anybody in my family with history of headaches. and unfortunately i believe i inherited it from my grandfather.