last saturday evening i suddenly got this excruciating headache on the left hand side with alot of pressure and pain in my left eye as if someone was sticking hot pokers in it and pain and pressure in left nostil, which when explained to my partner he tought i was going mad!! and believe me the pain was so bad i thought i was going mad after 5 mins or so i then got toothache in my back teeth also left hand side. This went on for about 3 hrs then just stopped! since then i been getting the same thing a few times a day but really bad around 9 pm and also waking me up about 3am. I went to the doctors yesterday as i couldnt stand the pain any longer and told me it was cluster headaches, gave me some pain killers and sent me on my way.
  After trying to do some research myself i came across this site and wondered if someone could help me, i am normally fit and well and just dont understand at all where these have come from, in my 30 yrs of life and 2 children i have never felt pain like this!!!
  Sorry if this is long winded but i just feel so alone and lost because of this no one seems to understand just how bad the pain actually is  :'(
Thanks so9 much for reading this and any sort of help/explanation/reasurrence will help anna  :-?

No diagnosis here.  Go see a Doctor.

            Potter

I am glad you found this site, there are a lot of good ppl with good advice here.  Unfortunately, I am new to this myself.  I have suffered for three years and just recently been diagnosed with ch's.  I hope you have found a good neurologist to see you through this ordeal. I will keep you in my prayers.

Hi Rhianna
Many of us sufferers self diagnose because General Medical Practitioners have little experience of CH and do not know as intimately as we do, the signs, symptoms and the PAIN!  This site has great info on cluster traits - see if your symptoms match up and then go, armed with as much info from here, printed out, for your doctor to see. 

DEMAND to see a neurologist/headache specialist and get properly diagnosed. The quicker you do that, the quicker you can get on with properly treating whatever condition it turns out that you might have.  You might be lucky and find out that you don't have CH but something temporary and easily treatable.

If you are diagnosed, then you have come to the right place. There are good people here who have immense knowledge of this affliction and if nothing else, you get to compete with each other about whose head hurts the most :-)

Potter wrote on Jun 10^th, 2010 at 12:46pm:

No diagnosis here.  Go see a Doctor.             Potter

im not looking for diagnosis iv seen a doctor and been told this is what i have!!
i was just looking for some friendly advice and maybe wondered if anyone had any thoughts as to how this could have just came on when iv never had anything like this b4 not even a tension headache :(

Your doc may have recognized Cluster but, clearly, didn't know how to treat it. But, because there are so many, many dozens of headache types, etc., would strongly suggest you find a headache specialist--NOT any general neurologist.
---
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.
========
To give you some introductory material on Cluster, see the PDF file, below and print out the full article which follows.
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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]
=======
Much good information to the left (buttons). Start with the OUCH site and the many articles you will find.

Hope you stay in touch with us as your treatment developes.

---

Buzz wrote on Jun 10^th, 2010 at 12:54pm:

Hi Rhianna Many of us sufferers self diagnose because General Medical Practitioners have little experience of CH and do not know as intimately as we do, the signs, symptoms and the PAIN!  This site has great info on cluster traits - see if your symptoms match up and then go, armed with as much info from here, printed out, for your doctor to see.  DEMAND to see a neurologist/headache specialist and get properly diagnosed. The quicker you do that, the quicker you can get on with properly treating whatever condition it turns out that you might have.  You might be lucky and find out that you don't have CH but something temporary and easily treatable. If you are diagnosed, then you have come to the right place. There are good people here who have immense knowledge of this affliction and if nothing else, you get to compete with each other about whose head hurts the most :-)

Thanks
the doctor just gave me pain killers and sent me on my way i might as well of took a hand full of jelly beans all te good the pain killers did. Can u DEMAND things to doctor im not a very forceful person but this is getting me so down. :(

The fact the doctor recognized cluster head ache is a good thing. The fact he prescribed pain meds as a treatment shows a complete lack of knowledge on his part. Short of sedating you to the point of blacking out, pain meds won't work for CH. You need to find either a neuro, who specializes in headaches, a general practitioner who is knowledgeable about CH, or a doctor who will listen to what you suggest and work with you on a treatment program. Most find good results using a 2 pronged approach.

1: A good prevent med. A med you take daily while in cycle..(getting headaches)...the goal being to reduce the frequency and the intensity of your attacks. I use lithium. Verapamil is a popular first line treatment, topomax also has a loyal following.

2: A good abortive. The attack is starting, now what? Your first line abort should be oxygen. Read the oxygen info link on the left. I can abort an attack in less then 10 minutes. (Done it twice already this morning...damnit! ;))

Imitrex injectables are effective but very expensive. Imitrex nasal spray is  cheaper and works for many. The pill form generally takes too long to get into your system to be of any help.

For now, grab a 4 pack of energy drinks. Rock Star, Red Bull, any containing the combo of caffeine and taurine. Chug one down at the first sign of an attack. many can abort or really reduce an attack that way. Stay away from alcohol, a trigger for many CH'ers.

Read everything on this board. In a very short time you will know far more about CH then your doc. This condition requires you educate yourself and learn to be your own advocate. We will help you every step.

Joe

rhianna wrote on Jun 10^th, 2010 at 1:02pm:

[quote author=06313E3E440 link=1276187928/3#3 date=1276188898] Thanks the doctor just gave me pain killers and sent me on my way i might as well of took a hand full of jelly beans all te good the pain killers did. Can u DEMAND things to doctor im not a very forceful person but this is getting me so down. :(

Of course you can DEMAND things from your doctor. Your duty is to acccurately present your symptoms and to show him the info you have researched form here. It then becomes his DUTY to familiarise himself with any information you have presented - my advice is to try and create a summary on one sheet of paper of your symptoms as evidence to support your suspicion that you have CH and then on the same piece of paper, bullet point what you want to have happen next, e.g. Visit neurologist, to get a proper diagnosis.  Make sure that he/she understands the urgency of this - that a CH attack should be treated as a medical emergency; that proper treatment needs to be available within days, not weeks.

Rhianna,

All I can say is INSIST on a high flow oxygen script, 15 to 25lpm, if your Doctor says no get another Doctor (easy for me to say) and read everything you can on this site on how to use it and what kind of mask to get (non rebreathers are recommended by most if not all). Preventatives have never worked for me though I am in the minority as far as that goes but I thank god and this site everyday for oxygen, I don't know where I would be today without it. Good luck and keep reading there are great people and great advice available here.

David

What Buzz just said! Obviously, to avoid an antagonostic relationship, start with the soft shoe. Explain to your doctor the intensity of your pain, the lack of effect the pain meds have on it, the research you have done on the effectiveness of various treatments  (OXYGEN< OXYGEN<OXYGEN)...and request he prescribe it immediately.

Hopefully an organized, intelligent, well researched argument like that, with documents to back it, will result in a precription for oxygen. If not you go Def-Con 3, demand to speak to a patient advocate and go over his/her head.

Wishing you luck, let us know what we can do to help you.

Joe

Hi Rhianna.  A general doctor usually will have limited knowledge of intricate headache conditions.  That is why people are suggesting going to a headache specialist.  People here have wasted thousands of hours and probably millions of dollars on stuff that doesn't work.  Pain killers don't typically work for people.

Clusters (CH) are somewhat hard to figure out your first cycle or first experiences with them.  Part of the charm of the CH is the predictable timing and sometimes the seasonality of the attacks.  One headache does not make a CH, but when you have one the same time each day and then they disappear 2 months later only to reappear 1 year later, then we have better information. 

So keep reading and keep observing your pain, triggers, timing etc.

Most people here have had to educate their doctors to get the treatments that work for most of us.  Many doctors won't prescribe oxygen but most people get relief.  Flow rates are higher than doctors understand will help. 

Many doctors give imitrex pills which tend to be too slow to work for a single attack.  People have better luck with the injectors. 

Caffeine and taurine, red bull etc, work if drunk right at the onset of an attack.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE is dedicated to the treatment of CH through natural substances and in my opinion shows the most promise.  You are not required to take prescription meds that your doctor recommends.  Check the side effects and ask people here what their experiences have been with specific drugs.  Always freaks me out and I would much rather use the Busters protocal.

Some people do hot showers or cold showers, ice, intense excercise etc.  Melatonin protocol for the nighttime hits. 

If I were you and I thought I had CH but maybe something else?? I would experiment with the easy stuff.  I would find the melatonin suggestions here, over the counter, probably safe and easy to get, and see if it helps.  If you are getting shadows or pressure during the day drink some caffeine and see if it helps.  And if I were new to this I would find a specialist as mentioned above and bring in printed articles from this site in case they are not so good with the CH you can push for your oxygen prescription.

Good luck! :)

--Shaggy

ps, don't get scared away by some of our, shall we say, "gruff'er" members.  We all care and want to see people have as many pain free days as possible >:(

Thankyou all so much for the info you's have given me, i will defo be see'n my GP again 2moro and asking to see someone who specialises in headaches and getting a propa diagnosis.
I am actually sitting here worrying cos i know i have a headache due to comwe on in a while and im so scared as the pain is so bad!!!
Thanks again and i will let u guys know how i get on  :) :-*

Hey Rhianna,

Ask for a prescription for oxygen therapy when you see your doc tomorrow.  The following link has all the info you'll need including links to downloads to print and take along to give the doc to make sure the Rx is written correctly.  Make sure the flow rate is 15 to 25 liters/minute.  You'll need the higher flow rate.

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

Take care and don't accept "No" for an answer when you ask you doc for the home oxygen therapy prescription.

V/R, Batch

What Batch said!  He has given you the info your Dr will need since he is not up to speed on dealing with CH. (That is understandable considering the rarity, but staying ignorent is inexcusible.)

Jerry

Holy Helpful Batman!!!!!! Awesome replies people.

I think this is worthy of a Sticky (Important Topics)

Rhianna,
  I'm afraid CH's are a condition you will have to fight, mostly on your own. bring some info to your Dr's office, and drop it off for him or her to review. I'm certian your next visit will be much more productive.

I'd suggest you try Oxygen alone first, before you give the meds a shot. The meds used are effective, but are serious medication and have serious effects, good and bad.

With O2 alone, 97% of my CH's are reduced to a mild-bad "normal" headache for 10-30 mins, then gone. After years of raw CH pain, its a walk in the park. Plus with all I've recently learned about CH, thanks to this awesome site/forum and the incredibly helpful people here, I know I'm not alone.

Remember that the pain is temporary, as excruciating as it gets, it will go away. It may help you from getting too discouraged.

I would find the doctor who mentioned CH to you, and give him/her a big hug. He or She has, most likely by the sounds of your symptoms, has brought you a world of relief.

Remember that Dr.s are just people, not walking encyclopedias. For the same reason there are "specialists" there are GP's. You wouldn't ask a podiatrist to give your eye's a look, despite his/her Ph.D.

Contrary to common assumption, a Podiatrist who, while examining your foot, notices you have glaucoma, is a good doctor. lol. sorry for the analogies.

Potter wrote on Jun 10^th, 2010 at 12:46pm:

No diagnosis here.  Go see a Doctor.             Potter

Quote:

I went to the doctors yesterday as i couldnt stand the pain any longer and told me it was cluster headaches

Hey Rhianna, try using advice of people that posted before me, oxygen helps to stop the pain, also there are medications like Verapamil, Lithium, Triptans in injections/nasal sprays that will do help, prednisolone and so on :) There are also alternative treatments you can ask around.

Rhianna,
   Until you get a chance to get to the docs and get your O2,  try using ice or heat(I use a frozen bag of corn, or peas).  And try to use a controlled breathing technique, so that you dont freak out and make the pain worse.  Try and stay calm, as hard as that sounds, but getting very upset during a hit will usually make it worse.  Try to focus on your breathing, and breath slowly all the way in and all the way out,  then speed up your breathing and try to think of something else than the pain.  I used to count my steps as I walked and walked and walked and walked..............

These are just a few suggestions along with the melatonin, Red Bull, caffiene etc that you already received from everyone else.  They are to help you until you can get to another doctor visit and get some real bullets in your arsenal.

Good Luck,
christine [smiley=heart.gif]