Hey,

About Me... My Name is Katie-Marie, I'm 19 years old and Female. I don't smoke, only drink on occasions and have brown eyes... I am healthy, have no family sufferers, am not suffering with stress nor depression...

My situation... It has been 4 weeks now since I first started my 'headache'. I have changed my diet, increased my water intake and started to regularly exercise. I have visited my Doctors twice and Migrains have been ruled out, my symptoms just dont match. Cluster Headaches is now considered not diagnosed, I have been sent away to research...

My Symptoms... For 3/4 weeks solid the left side of my head/face has been burning, temple & under eye/cheek mainly. I have then had an average of 3 'headaches' a day. Strangely similar times... Early evening and throughout the night, of which they wake me often teary eyed and kicking my legs out of agitation.. They averagly last 1hr15mins. I can go from the burning pain to a nearly unbearable pain within about 5-10mins. The burning will increase and spread from temple and cheek to all around my left eye which will then water and itch. I get this sudden rush to kick my legs and twist my ankles.. I have tried paracetemol, Ibrufen and Asprin. None of which make the pain any less!
However after reading imformation provided by my doctor I'm not wanting to smash my head against the walls, I am having no problems with my nose, neck or shoulders. I dont fit in any category of likely sufferers. I am not affected by light or noise.

I am looking for help, guidance and advise! (Or a decent nights sleep) I know very little at the moment!! I simply googled and this website was TOP!

Who? What? Why? When? How? Answers!!!!!!!

Anyone that can lead me in the right direction would be much appriciated.

Thank You Alot :)

See a neurologist.

         Potter

Welcome to the board Katie-Marie. While we are certainly not doctors it does sound very much like clusterheadaches to me.

I would certainly make a appointmrnt with a neuro but I know that may take a few weeks to get in.

If I were you, I would read all about oxygen therapy on the left and then go back to the regular doc and ask for a prescription of 02 with a regulator of at least 15lpm with a non-rebreather mask. For most on here, it will make that 1/12 hour pain disappear in 10-15 minutes.

We have a wealth of information here to take to your doctor after you have read up an the info on the right.

Again welcome and good luck. If you have any further questions, just ask away.

Yeah, nothing beats a solid diagnosis by a decent neuro.....but damn....you sure sound like a CH'er. I've never been a wall slammer either, I tend to wrap my arms around my head and "bicycle kick" during the worst of it.

For now, go buy a 4-pack of Red Bull, I prefer sugar free but that's just a taste choice. At the first sign of an attack, chug one down as fast as you can. It'll abort or at least substanitally reduce the intensity of an attack for many. It's the combination of the caffeine and the taurine.

Get some Melatonin, availabe over the counter at vitamin and health food stores. start at 6 mg just before going to bed, increase every couple of days and see if that gets you a good nights sleep. Will halt the night time attacks for many.

You've probably already figured out the over the counter pain killers...and even the prescription ones if you've tried those, are utterly useless for CH pain. Stay away from those as you'll cause yourself a boatload of secondary problems.

And stay away from alcohol while you're on cycle, an almost universal trigger for the majority of us while we're on cycle. Jimi's right, start with your GP and get oxygen, read the xygen info on the left as it MUST be used correcly or it's worthless.

Welcome, hope we can help you a bit.

Joe

Yes, a headache specialist, not any neurologist! Too many of them have little training or experience in the complexity of headache.

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.  Call 1-800-643-5552; 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.
==========

Take the cluster test at OUCH (left buttons) and tho you may find this article a bit much at this stage, see if it helps give some fom to your experience.

 
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]
====

Start to keep a log of your sypmtoms, attacks. They may help you & doc to see patterns which are helpful in making a diagnosis.

Hi Katie-Marie,

Just 'seeing a neurologist" could be quite the exercise in frustration - I agree with Bob that a headache specialist is the only type of neuro likely to be able to make an accurate diagnosis.

If ya got clusters, you could try this for free while awaiting meds/therapies: Breathe some really cold air deeply through the nose at onset. This can actually abort an attack for some of us including myself. If its going to abort the attack it'll work within 10 -15 min.

If you don't live somewhere with cold (as in freezing) outside air, you could put your nose up to the car air conditioner.

There are other things that could be tried without having a prescription in your possession yet, such as O2 from a welding supply place, or you could enter "RC seeds" in the new Google search for this site and research that angle.

Hang in there.  :-?

Ditto the headache specialist (FAHS) recommendation.  And a detailed diary of headaches will prove to be invaluable for diagnosis, cycle tracking, and keeping track of what works, what doesn't.

Hope you find a good doctor and relief.

Fox

Hi Katie-Marie,

There are steps you can take before you get your neuro appointment and a proper diagnosis. Definitely try Melatonin for those night time hits and take some red bull at the onset of an attack and hopefully this can reduce the severity of the hit.



Lefty..!

I am overwhelmed by the amount of response and views of my post! This website is fantastic, I am learning alot!!!Thank you all...

Monday is my next visit to the doctor I am preparing information to take and Im sure she will be impressed with my research thanks to CH.com.

I have stocked up on Red bull this morning, after probably my worst attack last night! Tommorrow morning I'm off to the shops to get some Melatonin..
I live in England, Hampshire. Not the coldest of places! However I will also try fresh air!! Update to follow --- fingers crossed!

I have recently found the KIP scale and would rate my pain 7-8. Fortunatly it is the weekend, I can hopefully catch up on my sleep.. Was really grumpy this morning, tiered and fed up! However I am now feeling more hopefull, some of you guys are really suffering and for years and years. I feel for you. I'm lucky this is only possibly the start.

I'm already in love with the website, its just like one big family and I already feel so welcome. :)

Thank you again

x

Guiseppi wrote on Jan 21^st, 2010 at 6:54pm:

For now, go buy a 4-pack of Red Bull, I prefer sugar free but that's just a taste choice.

Not necessarily. The artificial sweeteners in sugar free anything tend to be a trigger for some (myself included).

Hi Katie-Marie,

I'd like to add one more thing.  Stop taking the aspirin & other otc drugs.  They'll burn a hole in your stomache and they don't help one little bit.  It's like spit-wads against a battleship.

Linda

Please, change your opening identification to show your location.

Do look at your most excellent support group:

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

Always good to have support from folks who know your medical system.

Bob,
How do I change my opening identification to show my location?

Katie,

Click on your name. When a window opens...find "user CP"  up above.   Click on profile and  then edit profile and add whatever you want. 

hi katie, this is a great site.  being new, it sounds like you are going through the right steps.  people mentioned triggers above and in my current cycle i have been getting more in touch with mine.  yours may be different but for me, this cycle, oranges are very good, apples bad.  prunes and water are very good.  alcohol always bad, seems like for everyone.  little bit of water or little snack bad.  big drink of water and medium to bigger amounts of food has been good (can't explain that one, anyone else?).  caffeine always good, but i am a morning sufferer so the stimulant is easier to deal with then.  people have been discussing green tea lately on this site.  i usually drink a lot of it throughtout the year.  it just doesn't taste as good during this cycle and i have tended to stay away from it.  coffee good, nodoz(caffeine pills) at first hit of headache is good.  if it stops working i will add taurine.  i was using excedrin years ago but decided i didn't need anything but the caffeine in it.  coca cola at about 9 every morning is good.  i don't drink sodas any other time than in my cycle.  sugar, caffeine, fizz all feel good.

the moral of my story is that i eat and drink what feels good during my cycle.  start to figure out those foods.  there is great info here and people have been having good luck with non prescription stuff.  check clusterbusters.com for additional info. 

i have been at it for 25 years and i am finally getting a handle on this thing.  if i had found these 2 sites when i was 19 it would have been smooth(er) sailing all those years.

good luck.

shaggy