Guess its early days but glad I found this site to arm me with more info!

Have suffered with headaches for a while, my own GP thought was because of blood pressure changing and reduced my meds. Boyfriend getting fed up with me being moody - "you've always got headaches". 10 further days of headaches on and off all day and night-night time was worse, ended up with me being taken to A&E as could no longer stand the pain and was now vomiting when pain too much.  I knew this was no migraine.

Saw a wonderful GP there, who did a full check agreed was not a migraine and diagnosed cluster headaches. He disagrees that there is any link between BP and headaches. He gave me a diclofenac injection and prescribed the same in tablet form plus tramadol. The injection helped, within the hour it no longer felt as tho someone was trying to extract my eye with a huge pole. Boyfriend now ok and sorry!

Had a few "mini" attacks since but generally feel better today, just so very tired still. I'm wary of tramadol and think that made me worse yesterday. I'm also on anti-d's so maybe not a good mix.

I can tell when starting as I get a pressure feel in head, also a feeling of panic, even tho I'm not, probably doesn't make sense....ok that unsure feeling something not right may be sounds better!

Will go back to my own GP this week as guess will need some long term medication?

Anyway thanks for reading and for all info already found. Guess I'll be back with more questions at some point.

While I'm glad you have a GP who recognized your problem, his treatment, so far, is not useful for Cluster. Pain meds (tramadol) have almost no place with Cluster and I don't grasp his intention of giving the second one.

First, let me direct you to your excellent support group.
They will be able to help you with local sources of help.

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Here are two lists of commonly used meds for Cluster.
Any doc who is not working with there meds may not be very nicely experienced with Cluster.

HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
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Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002. Rozen)
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Treatment guidelines from Europe

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A. May, M. Leone, J. Áfra, M. Linde, P. S. Sándor, S. Evers, P. J. Goadsby:
EFNS guidelines on the treatment of cluster headache and other
trigeminalautonomic cephalalgias.
European Journal of Neurology. 2006; 13: 1066–1077.

Download free full text:
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Also useful to start learning both about the nature of Cluster and a fuller discussion of treatment.




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 core lesson which many of us have learned the hard say--we need to know more than our docs! Most physicians receive little training and have little experience in dealing with complex headache disorders. It's not uncommon for people to require several years and multple doctors before they find the skills which they need. Hence, the more you know, the better position you are in to evaluate the quality of care any particular doc is offering.

Hope you will stay here, exploring the buttons (left) and reading other folks' messages: a good way to learn.

Hi Madbird,

I'd also say work on getting an appointment with an actual headache specialist, since most other doctors are clueless abut CH and will do you wrong.

There are legions of high LPM/non rebreather O2 enthusiasts here for good reason - it's an effective,  non toxic way to abort CH hits, and you can read all about it at the oxygen info link to the left of this page.

For non toxic preventatives, there is the clusterbusters approach found at clusterbusters.com and discussed in this video talk by a fellow CH'er: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Painkillers: not good for CH.

A couple more bits o' advice:

If a doc prescribes imigran, make sure it's the injectible, or at least inhaler form - the pill form is for migraine, not CH, and generally doesn't work well.

Don't drink any alcohol while you're in the midst of this CH episode!! It is an extreme trigger for most of us and could hand you a crushing hit.

Welcome to the board, Bob's advice is spot on and golden, as is bejeebers. Only thing I will add is to suggest you try energy drinks when you feel an attack coming on. I use Red Bull but any containing the combo of caffeine and taurine will do the trick. Chugged at the first sign of an attack, many find they can abort or at least really reduce an attack.

Joe

hay Madbird

All of the above , do try the energy drinks as it can really help and is very straight away .

If the doc has you trying lots of different meds it would be worth considering getting a prepay prescription card , I think they are £28 for 3 months or some thing like that ask at your local pharmacy , it saved me at least a hundred quid in prescription charges in my first cycle, well worth it .

any how good luck and God bless

Nigel

Thanks everyone for the replies, I'll print some of the info off if I make it in to work tomorrow.

I already have a prepayment card, thanks Nigel.

Will get the Red Bull in. does anything like ProPlus help out of interest.

The diclofenac is a NSAID (Non-Steroidal Anti-Inflamatory Drug) (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE). This will act as a pain killer (it won't touch the pain from a CH) and I'm not sure what it will do from it's anti-inflamatory action.

This was one of the drugs they tried with me before they worked out that I'd got CHs. All it did to me was to really anatagonize my stomach and almost gave me ulcers.

Quote:

Will get the Red Bull in. does anything like ProPlus help out of interest.

Some people here find that caffeine is enough to help with a hit , but most find the combo of caffeine (0.03% min ) and taurine (0.4% min) in energy drinks work better , and I doubt if pro plus will work fast enough being as it is in pill form and will take at least 20 minuets to start working .

God bless

Nigel

Hi everyone, thanks again.

Well trip to my own GP got me nowhere >:(, all she did was print of an information sheet, even though I said I had researched. Said I have to monitor for a month and see how I go before they give me anything >:(.  I'm pretty annoyed and don't like living in limbo. She said if it gets really bad within month then go to hospital again for injection!!!

For last week been feeling like living on edge. Had a short attack 2 nights ago, plus one in day at work, sat on toilet pressing head into cubicle wall. I'm going to go back and see the main partner at the surgery this week.

madbird wrote on Aug 15^th, 2010 at 2:09pm:

Said I have to monitor for a month and see how I go before they give me anything

Keeping a headache diary for a time is not uncommon as a useful assessment tool.  Ask what specifics to monitor.

Some usual ones:

date
time, start/finish
intensity, rate 1-10
any possible preceding symptoms
possible triggers
medication, and dosage
relief, complete/moderate/none


I've read of good ones around here, but don't have a copy.