Hello My name is Teresa Stoke, I am 36 currently living in Huntsville Al Area. I am married over 18 years to my one and only and the mother of two teenagers.

My history: Location MO in 2008 I discovered I had Graves disease and started the treatment to have the iodine radiation pill done in February of 2009 but in the end of March when we were moving into our new house I was up all night with what I assumed was a sinus headache in my right eyeball but the pain was bad but not unlivable. So that morning we have loaded our stuff up arrived at our new house I was showing it off to my mom and dad when BAM I hit the ground and started screaming, rocking, grabbing my head wishing someone would knock me out. I didn't want to be touched, I could walk around, rock etc no light sensitivity etc just this feeling my head was going to explode and I couldn't begin to understand how I could still be conscience. Went to military ER because hubby was active duty and they though I was having an aneurysm after a traumatic LP. Had an MRI and was told oh I wasn't having a cluster headache because I was a girl and sent home by the on-call neurologist at the hospital I was sent by ambulance to. I felt hung over for about week, slight pain lingering and exhausted but then I was fine.

Two years go by and no major headache attacks until the end of March of 2011 when my husband was in Afghanistan I was just doing normal stuff around the house when again my right eye started hurting and I was like crap! this is how I felt two years ago and within minutes I again felt like a freight train over me and backed-up to do it again just for the heck of it. I again was taken to an ER and was treated for migraines and not Cluster headaches but my pain ended within an hour of attack with that lingering hung over feeling but they gave me some cocktail and benadryl no wonder I was loopy.

Current: Wednesday evening I felt this funny pain on the right side of my head not a full headache but man I don't feel right headache so I go take a bath and no good, and BAM again screaming, rocking, pacing, pull my hair begging God to just take me until my daughter called my DH at work and he called 911. I was taken in and this time I was treated with respect care etc it was so nice. They treated with morphine and some T word (I wish I knew the T word was cause it was WONDERFUL!!!!) and also nausea meds cause I did not like the morphine it made me feel funny and SICK!!!! they released me with two new meds one to stop the headache from starting when I feel it and the nausea meds to help with the side effect of the pain relief.. its florinal (does nothing for me anyway) the next day I was so nauseated from the morphine I wanted to die but Pain free on the head front YEAH!!! so I passed out hard that night and woke up yesterday morning feeling refreshed but confused cause it seemed like the day before was behind a fog and then BAM I was knocked off my butt again. This time the ER was horrible I was admitted and they gave nothing but 0'2 at 4, didn't check vitals, did no tests, did give me pain meds etc and no one checked in on or came in for the next 2 1/2 hours I was there. Finally a NP came in and at least agreed I was having a cluster cycle but I had never had one of those before like this right in a row. and he gave me a steroid shot in the buttocks and sent me home with steroid pak, flexeril, and more nausa meds. I have had a headache since getting home and this morning like I can feel the monster lingering waiting to attack.
To be honest I am very scared, I thought once a year was more than enough but I really don't want them more often.
officially diagnosed: no because the neurologist I have seen keep telling I am a girl and was told I couldn't have them so bye bye but the ER doctors tell me I am

my normal side effects during one are NOSE Faucet as I like to call it. omg gross I so hate SNOT!!!!

My eyes are watering because I am crying so I don't  know if they would water anyways or not. PAIN PAIN PAIN PAIN and more PAIN!!!

Pain calling is another side-effect its almost worse than drunk calling cause it really upsets your mommy when you do it even though they want to help; if they live several states away it really makes them feel bad they can't be with you so I don't recommend Pain-calling your parents during one.....

So I hope to learn alot from everyone and maybe find some treatments to try on myself to stop the cycle or keep them away forever and ever and ever.

Huggies

Teresa

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Footnote: ratio of male/female having Cluster has been changing, i.e., many more women now recognized.

Treatment: NO! If you want good treatment/control give up the idea of self-treatment. There are some secondary things you can do to aid, but mainline, core treatments, need both supervision and Rx. And, Cluster is not a simply disorder: there are a number of conditions which mimic Cluster, some of which are rather serious. We need a skilled doc to work thru this dilemma.

Related problem: it's troubling how little education/training docs have, even neurologists. So, if you have the option, find a headache specialist.
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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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So, we find ourselves living another paradox: having to know enough about Cluster so that we can evaluate the doc we see and, even, as a number of us have done, educate a poorly trained doc (if that's our only choice) so that we have receive effective treatment.

Self-education: read this site regularly; explore the buttons, left, starting with the OUCH site; ask specific questions, as they emerge for you, so that we can pass on medical literature.

For example: print out the PDF file, below. List of current treatments, dosing, and evaluations of effectiveness. Use as a discussion tool with the doc, even as you get some idea about his knowledge.
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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--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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Look over and consider printing:

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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But, first step, if at all possible: find a headache specialist.

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Hi Teresa

Sorry you had to come here looking for answers as it seems that so far you've been getting very few from doctors so far. Your experience to date is far too common as lots of people go through something very similar, especially women, as so many doctors think that women don't get CHs.

What you need to do is to work with a neurologist who specializes in headaches to get a definitive diagnosis. Whilst a lot of what you've described sounds like CH, there are multiple other causes of the same symptoms, so it is vital that you get someone who knows what they are doing to make this diagnosis and then to begin effective treatment.

So far you've been given a lot of pain killers, especially narcotics, which is not the best treatment by far, showing how little your current doctors know. But this is so familiar to most of us, including myself.

Whilst you're waiting, keep reading here and understand more about CH so that if it is CH you'll understand it better.

Also start to keep a headache diary. Everytime you get a headache write down details about it, like the time, duration, pain on a scale of 1-10, where it hurts, what it feels like and anything else that you think might be connected. This will help with the diagnosis.

When you see the headache specialist, have some notes with you with all the questions you want to ask, so that you don't forget anything, which is all too easy without notes.

Hello Teresa

There are a number of things you can try, whilst your docs are getting their act together, that might just help you with the pain.

Red Bull
or other energy drink with caffeine and taurine , if you down one of these right at the start(when you get that funny pain on the right side,we call "Shadows") It may stop the attack or at least reduce the pain level you experience during a hit

Air con
Not tried this one my self yet but I've read here that if you stick your face right in front of an air con vent set to arctic blast and breath deep it can help stop an attack.

There are some other things about on this site that may of may not help so read a lot and try some , some may work some may not but anything is worth a try.

Good luck and God bless

Nigel

Welcome to the board, is that a fireman you're married to? I ask because oxygen is the quickest, safest, most effective abortive out there. I kill my attacks in about 6-8 minutes, rarely having them ratchet over a level 3-4. Read this link as it must be used correctly or it won't work:

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

I use an old paramedic, push button demand valve so I'm not limited to how hard and fast I can breathe by a regulator. The faster you can hyper ventilate with pure oxygen, the faster you can abort the attack. The 3 keys, pure 02 to the lungs, at a rate to support hyper-ventilation, started at the first sign of an attack. Have hubby bring home an E-Tank and a demand valve and give it a shot.

Joe