Good morning to all. I say good morning because right now I'm fine. (get back to me in a few hour and i wont be as pleasant). I was officially diagnosed by a neurologist this past Tuesday. And he seemed surprised. Apparently, most of his patients are older males, he said he had one other female in her 60s. I am a 21 year old female, and he said he hated to give me this diagnosis.

I had this "cycle" 2 times before, the first time, about 4 years ago, the doctor thought i was allergic to either paint or mold in my school building. Then the more recent one, i was told it was just severe dehydration. Last week i recognized the specific pain again and new it was back. How could i not remember it so vividly?

I went to the ER on Thursday, left work early and had someone else drive (for obvious reasons). i was in the waiting room about an hour when it just went away. I was not going to stay there when i didn't have the pain anymore.. So i left and made it to my Primary care doctor in time for the next one the next morning. He gave my migraine pills and sent me to the neurologist.

Here I am. He said he was very surprised that i had not tried 12 different surgeries first. he said so many people take so long to figure it out. He told me there are basically three steps to dealing with it.
1- break the current cycle (steroids)
2- prevent the next one (some preventative pill)
3- immediate pain relief (shot in the leg, pills are not fast enough)

As for now, i have to go into work early because i know later i will be leaving, then going back and working through the night. y boss is being very helpful, letting me come and go as i need. I can not drive however, for fear that i will get this horrible thing behind the wheel.

I was just wondering if the three step process the neurologist is trying seems right to you guys?

Well, I'm both sad and glad you made it here, Kat.  Sad because CH are certainly no picnic, but glad that you found the great source of info that this site offers.  Your doctor's plan sounds spot-on in terms of approach.  (On the upper left side of this site, you should see a section called "medical info"--check it out.) And I would add that you have several other abortive options than just a "shot in the leg", although that's certainly an effective one for most CHers (myself included).  Please check out the oxygen link on the left side of this site.

Others will likely be along soon with links and documents to read, but good luck and keep us posted.  And read, read, read.   :)

Hi Kat

Welcome, but sorry you needed to come here. You've found one amazing place to find out so much about CH and how it can be treated.

Getting the diagnosis is one huge step that take some people years and years, so although 4 years isn't short, many people take a lot longer.

It sounds like you've a clued up neurologist, unlike too many that people get to see.

Prednisione is a steroid that is a great short term preventive which people take in a tapering dose over about 10 days which is time for a longer term preventive to build up to an effective level. The idea is to prevent CHs from happening. Verapamil is the most common preventive but there are others like lithium and topomax.

Then for CHs that you do get, the idea is to kill them off quickly. Oxygen is pretty good for this (read up about it on the oxygen link on the left). Using a flow rate of 25lpm and a non-rebreather mask I can kill mine off in about 5 minutes, which is a great way to get pain free with no side effects.

The shot in the leg you refer to is to use imitrex injections. These work pretty quick too, but are expensive and you can't use them too often. Most people have both available.

Also try energy drinks, like Red Bull. Skull one down when a CH starts and it can help reduce the duration and intensity of the CH.

People are also having a lot of success using vitamin D - read up about it - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. This seems to work very well as a preventive too.

Also read like mad, ask questions and you'll soon be an expert!

You doc is mainline, on target, in outlining the treatment approach. Now, it may take some time to work out the combination of meds/dosing which works for you--so be patient.

Learning is a major line of coping. In addition to reading here daily start reading:

1. OUCH site, buttons, left side of this page.
2.
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]

3. Print out the PDF file, below, for lising and evaluation of the major meds used for Cluster.

4.
A couple of sites which are worth your attention: medical literature, films, plus the expected information
about CH.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Search under "cluster headache"

Finally, please avoid the temptation to try other treatments which you will find here. Your doc needs to try his approach and see the results. Introducing other treatments prevents him from knowing which of the meds, etc. is, in fact, working best for you. Being direct & honest with him about his approach is your best  contribution at this stage.

---

Hi Kat.  Yes, you are young.  I am 50, but so many of us have been suffering since our early 20s.  We were either misdiagnosed or not diagnosed at all until much, much later in our lives.  Having the actual "diagnosis" at age 21 is a huge deal.  And, now we have wonderful sites like this to help us, and just to be there for each other.  There are people like Bob and others with so much knowledge, more than most docs.  Oxygen is a MUST HAVE.  I would like to suggest checking out the Clusterbusters web site.  It is sad that you had to find us this way, but you will never believe the support you will have.  The best of luck to you.

Hi Kat, welcome to the board. With the exception of being suprised a girl has them...you got lucky and caught a doc who is spot on for treating CH. Discuss this option with him, it's cheaper then the imitrex shots, just as fast, and no side effects. My aborts run 6-8 minutes, it's all but eliminated my use of trex:

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

Joe

your not alone Kat I'm a 23 year old female I'm chronic tho. The first neurologist i went to actually told me "well you have all the symptoms of a cluster headache but your a girl and girl and girls don't get cluster headaches." She gave me neurontin, 3 yes only 3 maxalt and a bill for $300 spent 15 mins with me did not even check my BP, These medicines did nothing for me. I have had CH since i was 11 and have been misdiagnosed had a $17,000.00 balloon sinuplasty, told i had migraines tried all the migraine diets and mediation's had MRI, CAT scans, the whole nine. Finally i got diagnosed at the hospital got a new Wonderful Neurologist Now for Preventatives i take Topamax, Steroid i take Prednisone, and abortive i take Relpax pills, Zomig (pills and Nasal spray form), and Sumavel Dosepro (injectable)<-- which i only use if i am at a KIP 8 or above because they are expensive. Dont be suprised if you have to try several differant meds till you find the ones that work for you. i went from haveing 15-20 CH a month to 5-8 a month. Good luck.

Hi Kat! My doctor gave me a very similar reaction. I was only 13 when I was diagnosed. And since this is more common in older men you could tell he pittied me.