Hello all, my name is aidy i've been diagnosed with cluster headaches two years ago. I didnt have one for nearly a year but they are now back. I do a very manual job, when i get a headache it grinds me to a halt. I have been prescribed with sumatriptan 50 mg tablets to be taken once a day and also injections of the same medicine to be taken when the headache occurs. I also have an oxygen tank. Some days i have ten a day, what worries me is the long term effects of putting all this medication into my body ?! My doctor knows very little on the subject, so little in fact when i go to see him he has to refer to the internet ! The only time i have spoke to anyone who knew anything about CH is when i saw the specialist at the hospital but even he admits research has been limited and the reason and cure of these horrible headaches is not known. I am just hoping maybe other suffers may have some advice ?!

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You've hit the first wall which affects so many: Docs who don't know anything about the complexity of headache.

Before you stay on the useless trip with him, do you best to find a headache specialist--not a general neurologist.
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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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Print out the PDF file, below, and give it to your present doc. We often have to educate our docs in orde to get decent care.
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You must learn about CH so that you can develop the skills needed to care for yourself. Start with the following and read the buttons, left, starting with the OUCH site.
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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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A new (for me) site which is 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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Welcome Home aidy d

  You've hit the motherlode of CH info/caring/sharing. 

  I came here pretty much a basket-case in 2/02, after 13 mos mis-diagnosis, and like you, multiple hits daily (6-8,and sometimes 3-5 at night). This place gave me the info to take to my doc and start having some control over this beast of ours.

  You only mentioned abortive meds.  Your doc hasn't prescribed a preventive?  Verapamil worked for me . . . had my first PF day in over a year about 2-3 weeks after starting same (had 3 attacks that night, but had the 02 to kill them).  There is Prednizone (I haven't used) . . . a "taper" drug which eliminates the hits while another prevent is getting into your system.

  You said you have an 02 tank.  What type mask are you using?What flow rate?  I ask because most here can abort with 02 and save the Trex for when the 02 fails or it's not possible to have a tank handy.

  Read, read, read, and ask any questions you might have.  The answers/opinions you get come from folks who truly know your pain.

  Almost forgot . . check out the "123 days pf . . ."thread on the "Meds,Therapys" board . . . I think it might be responsible for my (mostly) pf status.

  Be Safe    PFDANs

      Richard

Yes other sufferers DEFINITELY have advice!  :)

You already got a good valuable earful above I see, and I'll try'n lay a bit more on you, all related to the concern about long term effects of meds.

The imitrex tip START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE details how to get the same amount of aborts while using only 1/2 to 1/3 the amount of the drug. A critical piece of info for any imitrex user.

I'll echo that the high dose D3 regimen is worth looking into.

Some folks knock out entire cycles using the cluserbusters method discussed over at the clusterbusters.com message board. Here's a Newsweek story on these folks, and it should be mentioned that some are now finding busting results with mild, legal Rivea Corymbosa seeds: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

There's plenty of other valuable, dare I say potentially even life saving stuff to be learned here. Motherlode indeed. Glad you've arrived.  8-)

Thanks for all the advice folks going to look into it all and will let you know how i get on.
Am on 60% 02 and i think i should tell my doc to join this site lol :D ps i live in england   

  You need 100% 02 to be really effective, delivered with a non-rebreather mask (the one with the bag) & a regulator that goes to at least 15 lpm, and if you've got the "standard" 1 ltre bag mask that med stores will have available, then a 25 ltre regulator would be advantageous . . . . better yet get the Op2mask (big 3 litre bag), aircushioned mask for a good seal .  . . . designed specifically for clusterheads.

  Contact ouchuk.com.  They have a hotline with other CH'ers on the other end of the line that can help you get what you need and are familiar with the UK NHS.

  Glad you found us . . . keep reading.

      Be Safe,   PFDANs

           Richard

Well what a day it as been today,only a couple hours sleep due to the consent attacks all night.
Been talking to my gp (it,s feels like i know more about chs than him)getting a 100% 02 mask and been referred too
Thanks to this site and all you lovely people i don,t feel so alone anymore!!
ps thanks Batch i,l read all the infor you sent me now :)

Aidy,

Good on you...  Learning how to control your CH doesn't take rocket science...  It just takes knowledge of what works best and lots of persistence.  Once you get a good handle on how to use oxygen therapy effectively with short abort times and start fine tuning your diet with the right food types, vitamins and minerals, you'll have the upper hand. 

That will give you a very real sense of confidence you're actually in control of your CH and that will give you back a very good quality of life.

Take care,

V/R, Batch

Hi Aidy, I'm a newbie to this site but I have been a sufferer for 15 years. I live near Birmingham. I would echo everything everyone has already told you, but a few things that I have found that may help. The more injections I have, the more headaches I seem to get, it is sometimes like that with the Oxygen, you need to keep the oxygen going for at least five minutes after the headache has finished otherwise you can get rebounds and they can be harder to shift. I have also found that a hot water bottle jammed against your eye socket can relieve the pain to a manageable level, you do need to cover with a tea towel to avoid scalding, but sometimes the scalding is better than the pain itself. The steroids when used effectively can kill an episode stone dead, but I have found that I need to have had the episode for a while before starting a course and there is then more chance of them working. None of the preventatives have worked for me, but everyone is different so you may find one that helps. I'm with you all the way on this one, good luck!