Hi all
I just found this site and am happy to take any advice offered.  I was diagnosed with Cluster Headaches in June this year after being admitted to hospital with a suspected stroke.  I am not sure if it is relevent or not but I will give all the information I can.  A week before this hospital visit I woke in the night with what it seems was a anaphalactic reaction (at the time I thought I was dying).  I was kept in for two days and then released, the hospital could not work out what I was alergic to but gave me an Epipen in case it happened again.  A week later I woke in the night with excruciating pains in the left side of my head and neck - it felt like someone was trying to push my eyeball out from the inside), after a sleepless night and several hot baths I managed to go to work the next day but noticed that although the pain had eased the left side of my face was drooping so I went to my GP who had me admitted with the suspected stroke.  After 2 weeks in hospital loads of tests and a lot of disagreement amongst the doctors a neorologist told me I had cluster headaches, he tried me on steroids, oxygen and a few other pills (sorry cant remember the names) none of which seemed to help.  The only thing that seemed to offer any relief was the oral morphine - at least this knocked me out for a few hours so I could sleep. Eventually the neurologist allowed me to go home, his words were "you might as well feel crappy at home as in the hospital". I was sent home with Tramadol, Codeine and prednisolene,  I was off work for a few more weeks and back and to to my gp with no joy before the headaches started to ease off  and I thought great.  I actually felt so well I realised just how bad I had felt before if you know what I mean.  Imagine my dismay when I started having headaches again this week, I hoped it was just common or garden hedaches but last night I realised that this was not the case, I am not being treated with anything at the moment, the only thing that offers me any relief is hot baths and this doesnt last long, my eye and face have drooped again and I really dont know what to do, my gp is shut because it is Saturday, I really dont want to go back to hospital if I can help it, I was made to feel like a real timewaster last time.  Until I found this site today I thought Cluster headachaches were just a way of the doctors saying get lost.  I am so grateful to have found you, just reading some of your stories has made me feel that this is something real and pardon the pun - not all in my head.
Hope to hear from you soon
Julie

There are so few docs outside of major medical centers who have knowledge/skill in treating complex headache disorders that I'd suggest making a move to a headache clinic. Your present treatment plan is inadequate.

Since, I take your intro to say, you are in GB, would suggest you make contact with your excellent support group:   START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

I understand that you have the right to move directly to a headache clinic for care. OUCHUK can guide you with your healthcare system.

I'd encourage you to avoid any effort at self-help treatment--this will only sustain your pain. A solid treatment program is necessary.

See the PDF file, below. It will give you an outline of current therapies for Cluster.

Do some basic learning as you proceed to locate a good source of treatment.
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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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Explore:

A couple of sites which are worth your attention: medical literature, films, plus the expected information
about CH.

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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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Bob's given you some great advice. I'll add this link, used correctly Oxygen is one of our best weapons against CH. Tough to beat for speed, effectiveness, cost per dose and lack of side effects.

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

For now, go pick up some energy drinks. Monster, Red Bull, any containing the combination of caffiene and taurine. Chug one down at the first sign of an attack, many can abort or reduce the level of an attack with these.

Be patient in the early stages while you try and establish an effective treatment regimen. There is no "cure" for CH. No magic pill you can take to eliminate them. They can be managed with an effective prevent medication and an effective abortive routine. Careful with the narcotics, they have no place in the routine treatment of CH. Their potential side effects, including rebound attacks, far outweigh any relief they may provide.

Read my response in the post just above this, from Carol, for a detailed response on some of the more common treatment routines.

Glad you found us, hope we can help you.

Joe

Thank you for your replies, I managed to get an appointment with an out of hours doctor today who seemed to understand CH more than my own GP he has given me 2 single dose imigran nasal sprays and Co-dydramol.  I have been out and bought some energy drinks as advised but
I have to say I am sitting here now at 10pm and am exhausted but too scared to go to bed.  I hope this stuff works but dont think I can cope with another night like last night.  I am going to see my GP on monday and will ask about a headache clinic (I never knew they existed). 

Hi Julie

You've got some good advice so far and I'd suggest you read like mad through the various posts on the forums here. You'll soon learn a lot more about CHs and their treatment than any of the doctors you've seen so far.

The imigran nasal spray will help (imitrex) although the injectable form works even better to kill off a CH.

The Co-dydramol is a combination of paracetamol and codeine (narcotic). This will not touch the pain of a CH, it'll take 20+ minutes to take effect (too slow for CH) and it's unlikely to do you any good based on experience both personal and from others.

What you do need is a preventive, something like verapamil or lithium, with a taper dose of prednisione which will work as a short term preventive whilst the other one builds up.

To kill off a CH look at oxygen (a life changer for me) with info on the left and imigran injections (known as imitrex).

Keep reading and asking questions. Everyone here knows just what CHs are like.

Hi Julie

This place is a massive library of info on CH , the perfect place to ask questions (even if you think they sound like stupid ones) and even a place to have a rant about useless doctors etc.

Wishing you the very best of luck with the wonderful ,speedy and efficient NHS  >:(  ;D

Seriously I hope you find the magic formula soon. The imigran nasal spray is a step in the right direction , I'm using the indictable form which I find nail the beast every time.

Energy drinks are good for taming shadows ,I get through an awful lot of Red Bull at the moment since I have been getting shadows several times a day for the past two years since my last cycle ended.

Any how good luck and God bless

Nigel
 

Hey there, Julie, and welcome! Here's another vote for imitrex injectables, O2 and energy drinks just in case you needed another opinion. And as to it all being in your head, well of course it is, and it is real pain, too! Don't waste another second thinking you thought this into existence. You did not. Best as we can tell we hit the lottery on some kind of physical deformation of the hypothalmus, or something. So while we don't know why this happens, or how to cure it, we are learning a great deal about how to tame the beast. Hang in there and keep posting. We want to hear how you progress. God bless. lance

Hi again
Well I went to see my own GP today and am now torn between upset and angry (get ready for a rant).  I have had several really bad nights, hubby has been kept awake too.  When I saw the out of hours doctor on Saturday he only gave me 2 doses of the imigram nasal spray, which I am still unsure about but have run out of now anyway(don't really know what to expect from it).
Anyway I walked into my GP armed with loads of information (for the first time since I was diagnosed)  unfortunately the beast kicked in in the car on the way to the docs, hubby was driving while I was crying and thinking at least the doctor will have to believe me this time. :(
The result an appointment that lasted less than 5 minutes another course of prednisilone, 2 more imigran nasal sprays and nortriptolene (spelling) tablets.  I asked for a referral to a headache clinic or a neurologist and was told it wasnt necessary it would just take trial and patience to get my MIGRAINES under control.  I reminded the doctor that a neorologist has already diagnosed Cluster Headaches and that there is a difference and mentioned that the prescription was for just 2 imigran again and that I am having a few headaches a day and definately one really bad one at night, he said just use the imigran when i really need it and hopefully with the steriods i will be ok in a couple of days. 
Now I may be moaning about nothing here but remember than throughout this conversation i was gripping my head and struggling to focus on a conversation as well as stay in a seat with tears streaming down my face.  I feel that I have just been brushed off again.  Before I left hubby booked me an appointment with another doctor for the day after tomorrow :'(
Am I over reacting here, is it right just to be getting 2 nasal sprays at a time and is the other stuff going to do me any good. 

Sadly, you were seen by one of the doctors who doesn't think he has a God Complex, but sincerely believes God has a doctor complex. A stiff necked, pompous, ass-wipe know it all who doesn't listen to his patient becuase how the hell could you possibly know more then an all knowing, all wise omnipotent God like him? Besides, you're a woman so ANY head pain has to be a migrain >:(

Shake the dust of that pompous ass off your sandals and move on to another doctor. This one will never help you.

The Nortriptyline has been used by a few people on this board, with mixed results. From Wikipedia:

Nortriptyline is a second-generation tricyclic antidepressant (TCA) marketed as the hydrochloride salt under the trade names Sensoval, Aventyl, Pamelor, Norpress, Allegron, Noritren and Nortrilen. It is used in the treatment of major depression and childhood nocturnal enuresis (bedwetting). In addition, it is sometimes used for chronic illnesses such as chronic fatigue syndrome, chronic pain and migraine, and labile affect in some neurological conditions

I just can't see this as a first line prevent with so many other treatments available with a MUCH higher success rate. Hang in there, it can take some work to find a good doc but the long term benefits make the journey well worth it.

Consider contacting your insurance company directly for a referral to a headache specialist neurologist, based on this doctors unwillingness to refer you. Might be able to bypass another GP visit.

Joe

ok I feel a bit better now, thought maybe I was over reacting.  Unfortuntely I live in the UK which means that unless I go private (not an option financially) I need to be referred to a neurologist by a gp or be admitted to hosp to see one (which if the last few nights are anything to go by is actually becomming an option, if only for a bit of relief)
Thanks for the words of encouragement.
Julie

Hi Julie

Are there other GPs at the practice you go to? If so, I'd go see one of them, otherwise change GPs.

The only way to deal with CH is to take charge of your own destiny, not take no for an answer and get the treatment you need and deserve.

Hope you get some improvement soon.

Yes there are other doctors and hubby has booked me an appointment with one of the others for day after tomorrow (knowing I will have run out of imigran by then).  Can I also check dosage with you guys I have just done a bit of reading and my nortripyline at 10mg per day seems very low.  My Imigran spray is a 10 mg dose and i am allowed one per 24 hours

Julie,

When you see the new doctor, take along the following chart.  It contains the European Federation of Neurological Societies (EFNS) guidelines on the standard of care in the treatment of cluster headache and other trigeminal-autonomic cephalalgias.

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You'll note that oxygen therapy at a flow rate of 15 liters/minute is the first abortive of choice topping the list of acute treatments followed by the triptans to be used if or when oxygen therapy cannot stop a CH...

You'll also notice that verapamil and steroids are at the top of the preventative list of treatments. They are the most effective as indicated by the "(A)".  In practice, a prednisone taper, (an incremental decrease in dose), is prescribed along with verapamil on a titration schedule (incremental increase in dose) so that verapamil reaches a therapeutic response level about the time the prednisone taper completes.

If your doctor subscribes to this standard of care in treating patients with cluster headaches, you should walk away from your appointment with four prescriptions:  One Rx for home oxygen therapy, a second Rx for one of the triptans, (you can ask for a sumatriptan nasal spray at 10 mg.  That way you can have up to two a day), an Rx for a prednisone taper and one for verapamil.

Take along the following link as explains this standard of care:

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These recommended treatments for cluster headache were prepared by a task force of neurologists who number among the foremost experts in the treatment of patients with cluster headaches in the world. 

I've met with three of the seven neurologists on this task force, Dr. Arne May, MD, Dr. Peter Sandor, MD, and Dr. Peter Goadsby, MD on the topic of most effective treatments for cluster headache and they all pointed out the EFNS standard of care... 

Each of these three neurologists sees and treats more cluster headache patients in a week than most general neurologists see in a lifetime.  Dr.  Goadsby, MD, was also a Professor at the Institute of Neurology, Queen Square, London, so his name should be recognized by any physician even remotely experienced in treating cluster headache patients in the UK.

I've also attached the Home Oxygen Order Form (HOOF) filled out for cluster headache sufferers.  Print this HOOF an take it to your appointment to have the doctor sign.  This is an NHS requirement and without the HOOF, you won't be able to get home oxygen therapy in the UK.

Hope this helps.

Take care,

V/R, Batch

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IF you are in the UK, contact the support group I first metioned. They can guide you to a headache clinic and not get caught in a cycle of referrals, etc.