About Me:
Hi, I'm Jude. I'm 26 and I currently live in Virginia, USA though it is temporary. I'm one of those "late" people who is going back to college and I plan on graduating next year with a degree in Computer Science. I'm in an incredibly loving and stable relationship with my girlfriend who is a Maths teacher. I've travelled the world and I typically spell things british because that's where I learnt grammar  ;D. I hope that's okay. I will be relocating next year to either Chicago, Illinois, or back home to Oakland, California, depending on job prospects for myself and my partner.

I've read that it's statistically very rare for a female such as myself to suffer from clusters, but I have been diagnosed, and my mother suffers from them as well.

I've just had my first cluster in 3 months and I'm exhausted. I'm sure you've all heard it before, but I just can't predict when it's going to happen, and even worse is the fact that when I'm not having them I get a false sense of security as though they'll not come back which makes it so terrifying when they do. Then I spend weeks fearful of the next one. After a month or so I start wondering if they're gone this time, and after 2 or 3 months I'm all smiles and I don't think anything about it. Then it hits again. I almost always get shadows. When they start I start panicking and then the next thing I know I'm pacing around, or sometimes curled in a ball on the floor rolling around.

To make matters worse, I also have autism. People see this as a fit and think I'm "less functioning" than I actually am. I've had several people tell my mother she's a saint for having a child like me. It makes me feel like crap.


My methods of treatment:
I have found that taking one benedryl takes minutes, or hours off the time that they last. When I take a benedryl at the first sign of shadow, or lurking, most of the time it helps when it comes to duration, but never ever when it comes to pain.

WATER. Lots of it.

History:
The first time it happened I was 16 years old and I thought I might have had a brain aneurysm bursting or something wacky like that ( hey I was 16 ). I rushed to the ER where they made me feel like I was just a pain med junkie. I had never taken a painkiller in my life, not even tylenol, not an anti-inflammatory, nothing. I'm a bit of a hippie, and I don't like taking medication. I should also mention that this is the first time I can remember it happening, though my mother said I suffered from them as a small child.

From then on, just as random as can be, they showed up. I learnt from the first ER visit that I couldn't go to the ER and that it wasn't something that was treatable. I just felt like I was a wuss because I couldn't take the pain like everyone else. I figured everyone else must have these headaches from time to time because you hear people say "oh man I had the worst headache the other day." I thought "the worst headache" was literal, not an exaggeration. I know differently now. I now know that like everything else I thought was normal growing up, it's not. It's not normal to have autism, it's not a normal headache.

Sometimes I wonder why they call them cluster headaches at all because to me they're more like brain piercing/drilling/scraping/drumming excruciating terrifying experiences. It's literally the worst pain I've ever felt and I have a high pain threshold (heck, I bet we all do).

Your help:
I'm completely new to this as a medical condition. I always thought it was just a normal thing since my mother has it as well. I thought we were just "those headache people."

Well, thank you for letting me ramble. Any advice will be gladly and appreciatively taken.

Even though I don't know you guys, I love you because we share this pain.

(Yes, a gay, female, autistic vegetarian... I know. :-X)

Since you will be learning to live with a condition which will likely continue into late middle-age it's essential that you find a headache specialist to help you, where ever you live. A coherent understanding, on your part, plus an effective treatment will carry you thru the hard times.
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LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
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Explore the buttons, left, starting with OUCH. Start to live with our group, reading as often as you can: source of support and treatment info.




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]
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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"
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
ALL NEW!! HEADACHE 2010-2011
Robbins Headache Clinic

Free, 50-page. Covers all major headache Dx and
related issues.

In a PDF file.
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Any doc who gives you a diagnosis based on sex ratio alone is a signal to head for the door!

Thank you Bob, I really appreciate the advice. I thought it was odd that he was skeptical of my condition because of my sex.

I had no idea that there were headache specialists. That is a massive plethora of resources that you have.

Thanks again!

Yes, a gay, female, autistic vegetarian... I know

Am working on a clever line for that but it's early and I'm sleepy...I'll get back to you! I will tell you women don't get CH, they just fake it for attention! ;D

Sadly we hear that a lot on this board, you're the second woman this week to come to the board having been told women don't get CH. A doctor who says that knows nothing about CH. Cruise the boards here and you'll find hundreds of women who do suffer from CH

Bob is spot on, your best bet at an effective treatment regimen is through a headache specialist neurologist We have seen the best results from doing so.  I’ve had CH for 33 years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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


Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.

Go to the medications section of this board and read the post "123 pain free days and i think I know why." It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s a long read, worth the time.

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

the only unusual thing i see is that your mother suffers from cluster headaches.  it isnt unheard of, but it is very rare for cluster headaches to be present anywhere in the family history.  nobody in my family besides me was ever diagnosed with cluster headaches, but i have heard my grandmother talk about how she used to have headaches that would make her scream and roll around on the floor.  makes me wonder...
anyway, welcome to our crazy little corner of cyber world.  enjoy your stay and be sure to visit often!

Dittos everything above, plus a word of caution. You say you are autistic but you don't say if you take any meds for that. If you do, be sure to give your doc a complete list since some of what we take may in fact be contraindicated. It could also be some of the meds are compatible with both diseases. I have an autistic child, and I know from experience she gets tired of pursuing her interventions and prevents (she'll refuse her meds) and if there is any of that in you, whether it is for CHs or autism, try and persevere. It is not good as you discovered to assume these guys won't come back. God bless. lance