Hi all

January last year I experienced the worst pain I have ever felt in my life, I went to my GP who mentioned cluster headache and first prescribed me with Codene, this had zero effect so I returned to him a few days later and was prescribed 50mg Indometacin 3xday, this sort of helped, when I run out of tablets I didn't go back to the GP and suffered with it, the  pain stopped about 2 month later.

I am also taking Simvastatin 20mg daily for high cholesterol, Lisinopril 20mg and Lercanidipine 10mg daily for hypertension.

Last week the pain has returned, and is incredibly intense, I went to my GP and was again prescribed Indometacin, that was Thursday last week, I don't feel that they have had any effect at all so went back to the GP.

Yesterday I visited my GP again He prescribed 2.5mg Frovatriptan (Migard) twice a day when needed, yesterday evening I took 11 at the start and its seems to have dispersed I do have  a slight headache feeling but not full blown as it has been.

Thing is he has only given me 6 and whilst yes it helped this time I cant keep going back for another prescription every 3 days, especially at £7.35 per time and looking at the info they come in boxes of 6 tablets, thats gonna get very very expensive and irritating having to keep going to the docs and chemists (had to tour 4 chemists before finding one that had this in stock)

This morning I woke with the feeling of a terrible hangover then about 11.30 the stabbing pain returned, I have taken another Migard straight away but it doesn't seem to have helped yet.

I can only assume the "hangover" was down to these new tablets as I certainly haven't had any alcohol to drink, guess I need to be returning back to the GP again, I did ask him yesterday if I could have my own parking space at the surgery as I seem to be always there lately. 

So many docs lack training & experience in treating complex headache disorders.

Suggest you make contact with your excellent support system to learn how to exercise your right, under your health care system, to get the attention of a specialist.

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These are pieces of several messages which give some clues on finding good care.

Message: "Dyno", Tenby, Wales, UK, Aug 9, '09:
[Bob-excludes Wales per Dyno]
looking at their website it looks like a better alternative  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Why not ask to see the top man in the country - Dr. Manjit Matharu at UCL. Under Patient Choice - look at the link below - you have the right to choose who you see.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or .

and this - copied from the OUCH(UK) website

Quote:

You can ask your GP to refer you to one of our hospitals for treatment
Central to the government’s healthcare policy is that patients should be given the opportunity to be more involved in making decisions about their healthcare. If you and your GP agree that you need to be referred to see a specialist, then you have a choice of at least four local hospitals or clinics. Since May 2006, that choice has been extended. You can now also choose to go to any Foundation Trust in the country, including UCLH. Whether you’re from Cornwall or Camden, as a patient you now have the right to choose UCLH. You can ask your GP to refer you to one of our hospitals for treatment.

[Source: UCL website]
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City of London Migraine Clinic [and other types]  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Don't worry about side effects. That's a concern when taking for weeks/months; the idea of 10-days and off is to give immediate relief from attacks while, at the same time, starting to use a long term preventive med (which require some time to become effective.)

I hope you have been able to line up with a headache specialist. Far too many docs, even general neurologists, lack training/experience with complex headache disorders to handle us.

Sending along two lists of standard treatments for Cluster. If you don't get treated with some of them, then time to press the doc and show him this material.

See the PDF file below. And print out the entire article of the abstact.
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Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or (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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And see,


A new (for me) site which is worth your attention: medical literature, films, plus the expected information
about CH.

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Its a University teaching hospital too, so I do have hope

My wife seems to think I am getting really confused this past wekk, I am not so sure I dont think its so bad, although I am struggling to get my words out, its as if either my brain or my mouth is running too fast, and I just cant get wrds out and start stammering, is this likely to be linked, anyone else experienced this?

Mike NZ wrote on Feb 18^th, 2011 at 8:18pm:



Thank god for that, it was worrying me a little.
Well day 1 of prednisolone took 60mg this morning and had 2 hours of pain but this went after 2 hours, whereas normally the pain just eases to a lower level but is there constant, I do have what i would call a mild regular headache nothing too bad, so its looking like they have produced a positive result, wonder if that will continue as the doses drop by 5mg per day, tomorrow will tell

But right now I am feeling quite good about myself

Well think they partially worked, as said usually I have really bad pain for a couple of hours then a regular moderate headache much of the rest of the day.

Got heavy hit at 10am yesterday, wife went to the pharmacy for the pills and took the Prednisolone at 1030, it stopped at around 12ish, and I only had a mild headache for a few hours, then got another big hit at 3ish lasting about an hour and a half then went to moderate pain again and a heavy hit at around 10pm which lasted an hour.

So in summary yesterday I would say they helped out a bit as the period in between the major hits was improved to when I didn't have these pills, but I don't think they have produced a fantastic result.

I am only on these for a week and the neuro appt is on 7th April, once these taper off dont know if my GP will try anthing else, he wouldnt have given me these had the consultant not wrote and said that he wanted me on a short dose of steroids after receiving the referral, I have to see the GP again in just over a week to get a new sick note for work so will ask him what his plan is to treat me before seeing the neuro.

thanks 

things looking good , not hit yet today but feel its coming, its normally hit an hour ago

OMG

what an awful day, started at 5.30am and has hardly stopped since, without doubt the worse day since starting the pred, I am  down to 25mg now and today I feel as bad as I did before the course started.

Been bouts of 3ish hours with constant mild-moderate regular headache in between. The odd thing is that  it is on the right side today it has almost always been on the left up until now.

Got an appt with GP for when the Pred runs out, but he has said already that need to wait until see the neuro or go to A&E, he wasnt keen on writing me up for O2, my wife has said she will get the GP to contact the neuro to sort some pain relief in the meantime, lets home tuesdays appointment bring some good news and my GP has read up on it, he has been a fantastic GP this aside, it seems more a lack of understanding of this "£$^"% condition

Quick update

Well the first neuro appointment FINALLY came around today, she did all sorts of stuff checking my reactions and reflexes, she didnt seems to show any concern so everything there must be fine

Sending me for a brain scan just waiting for letter to come through, she has also said she is writing to my GP to tell him to prescribe Verapamil sumatriptan injections.

I have been on Prednisolone for 6 weeks now dosage reducing 5mg per day, I didnt think they were working until i forgot to take them 1 day last week, jeez that day hit me
I am currently on 10mg which will prob end when get next lot of meds.

Havent got anywhere with O2 yet, she seemed to be hinting that to get oxygen therapy I should go to the hospital despite saying that O2 is the best thing? that aint gonna work as it takes half hour to get to the hospital, and I very much doubt that the second you walk into A&E they will say oh yes sir, come and have some oxygen now, I have experienced A&E depts here its usualy about an hour wait to see triange then up to 4 hours for treatment, my fatherinlaw had a stroke a few years ago and it was 4 hours before he was seen, so its not very likely that I will be seen plus I am getting them every 5 or so hours, I canty spend the rest of my days sat in A&E waiting for oxygen, I will wait to see how these new meds work, and if they dont then I am gonna start shouting and screaming until I get what I want, and if I need to stamp my feet while doing it then sobeit 

I can pick up the prescription tomorrow, its for 40mg Verapamil 3 times day when I asked about the sumatripan injections apparently it isnt on the prescription, so I need to see the Doc on Wednesday to sort it out :/

Ok thanks, he may be deliberatly starting me on low dose and raising it slowly, i dont honestly know until i see him on wednesday

Not as bad as it sounds. Check out the instructions from the OUCH site.

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Also, if you google Sub-Q injections, you should find some videos.

Don