Hi Folks,

My neurologist thinks I may suffer from clusterheadaches, but has not provided that diagnosis yet. I am a 45 year old male that has had left sided headaches more or less constantly for the past 5 years. MRIs show nothing. I also have weakness and mild numbness down the left side of my body. In addition to moderate drinking/smoking, I think I have moderate to severe sleep apnea and have been referred for a sleep study.

Anyway, I just wanted to introduce myself and hear from others that have similar symptoms.

Welcome to the board. Several on the board suffer from sleep apnea. They went the CPAP route, cured their sleep apnea, not their headaches. Hate to see you get hopes dashed there. Wishing you speed on the diagnostic journey, it can be the most frutrating part!

Joe

I don't have sleep apnea, although my other half does. The CPAP has been a transformation for her, so I'd strongly suggest that you follow that route too.

Weakness down one side of the body isn't something people tend to mention here.

Please tell us where you live. Follow the next line to a message which explains why knowing your location and your medical history will help us to help you.

Cluster Headache Help and Support › Getting to Know Ya › Newbies, Help us...help you

You can add your location by editing your profile. CP Member --> profile
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Given the complexity of headache disorders, I'd prefer that you were working with a headache specialist. (Both medical literature and our collective experience indicate that a large % of docs lack training an effective experience in this area.)

This is the critical stage: a good diagnostic work-up. Please keep us up to date.
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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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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]

All three symptoms (headache, numbness and apnea) may be totally unrelated to one another. It can be very frustrating dealing with CHs AND other stuff at the same time. I once got to a point where I was seeing one dr or another more than I was seeing my family. The up-side was...the docs were on more familiar ground with the other symptoms and jumped at the chance to play around with those, and just nodded past that I was now CH chronic. Joy. Anyway, it will be up to you to keep your medicos focused on each symptom, and not let them slip CHs into a bag just because they aren't curing you right away. Blessings. lance

I'm a 23 year old female, currently living with my mum.  I've had headaches since I was a teen, but they've grown a lot worse over the years.  They'd start off like migraines, but gradually get much worse.  I would go to my room, curtains closed, lights off and try to distract myself from the pain.  Always in my left temple and behind my left eye.  For as long as I can remember.  As the pain increases, I grit my teeth and clutch the left side of my head, hoping the pain will fade.  But it never does.  I'd take pizotifen, solpadol, tramadol ... it's like taking nothing but a glass of water.  It doesn't even ease it the tiniest bit.  And it gets worse and worse.  By this time, I'd be fighting hard not to cry out loud or scream, but I can never stop the tears from flowing.  Meanwhile, I'd feel pressure behind my left eye and I want to push it back inwards with my right hand, while pressing against my left temple with my left hand.  Eventually, my mum would take me to the hospital A&E, hoping they'll give me something.  But, they're not as helpful as they could be.  I'd have to wait for 2 hours in the waiting area, while they'd only offer me Tramadol, even though they already know (from my history) that it doesn't work for me.  When they bring me to one of the trolleys, they tell me to calm down and they'll bring me some tablets for the pain (while I'm getting more and more frustrated).  At some point, after hours of panting and sweating with the pain as silently as I can, I'll suddenly voice my pain, unable to take any more, begging the nurses to take it away, "please, it's so bad I want to die, please just make it stop".  At this point, my mum will go looking for a doctor, telling them that it's ridiculous letting me go through this pain, just give me an injection.  So, they finally come around and give me an injection.  After about 15 minutes, the pain will slowly begin to ease off, and the pressure behind my eye will fade, and I'll feel relief.  Then, they'll discharge me and my mum would take me home to rest.  This sometimes comes as a pattern, every few months I'd have these "attacks", either gradually or suddenly (when triggered by something like a lot of stress).  Though it's not always in the same pattern.  Sometimes, I have to be kept in hospital for up to a week, because blood tests would show that my white blood cells are abnormal and it's usually accompanied with a urinary tract infection.  I've had scans done, but they've come up normal, but my white blood cells always show that there's something going on.  I've also had a lumbar puncture done (and never again, I hope), but it came up inconclusive.  I was once referred to a so-called neurologist, who told me that "women don't get cluster headaches", which we were later told that they were very incorrect.  I've been examined by quite a few doctors, and "cluster headaches" has been suggested as the cause a few times, though I've yet to get a firm diagnosis.  I don't know why, but we've tried all sorts of painkilling tablets and none of them help with the pain during these "attacks".  So far, only injected pain relief has made any difference.  It could be because I'm hypersensitive, because (for some reason we don't know), I'm immune to local anaesthetic and sedation drugs, to the point where all my dental work has to be done under general anaesthetic.  Because of this, going through these headache attacks are very distressing, especially because only injected painkillers seem to help.  No other treatment has been offered to me, so we're at a loss what to do, other than go through A&E every time the headache attacks strike.  Meanwhile, I try my very best to distract myself from every kind of pain I get (because these headaches aren't my only problem), and try not to get too depressed about it (another thing I'm on medication for).  I have spoken with some people about this in the past, many of them simply couldn't believe that I could be so unlucky or that anyone one could suffer pain so badly.  So, I try to look elsewhere for help and advice.  Hopefully someday, I'll find a solution to my problems, especially the pain side of it.  Ps.  Sorry if this is kinda long-winded.  I thought I'd feel better getting it off my chest.   :)

My goodness, Rachel. What a story you tell, but the sad truth is, it is not particularly unique among us. And that's the good news, too! We do understand, have been there, and we're here to tell you you are not alone. There is reason to hope. It sounds like the ER staff had no idea what to do so it will be up to you to become an expert in CH. You can do that by reading every post you can on this site, especially the "stickies" that have proved useful to many, time and again. Take notes, ask questions. We'll help.

You are looking primarily for three things: an effective preventative (like topamax, verapamil, lithium, clusterbusting, etc) in the proper doses; a D3/fish oil/calcium supplement daily. Second, an effective abortive combination like high flow O2/energy drink at the first sign of a hit, melatonin at night, imitrex injections; and third, perhaps an intermediary like a prednisone taper.

Don't suffer longer than you must. Make this your newest hobby and goal in life. Keep in touch and God bless. lance