Hi all, i am Ben, 33 from south east england. I have been suffering from these damn things for nearly 7 years now and have only recently discovered what they are. I have been told repeatedly by doctors that i had migraines and have been taking completely useless medication to no affect. recently a new doctor finally diagnosed me with cluster headaches and has prescribed Tramadol for the pain. If you have had Tramadol before you will know that it is great for the pain but it stops you doing pretty much anything else. this means that if i have an attack during the day i just have to put up with it. I am writing in the hopes that someone on here has a solution for treatments that i can take during the day. Please help and i look forward to hearing from you all> :)

Welcome to the board Ben. First off, would suggest you visi the following site as it has a lot of location specific info for you.

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Are you working with a headache specialist neuro yet? We have seen the best results from doing so.  I’ve had CH for 33 years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.

Go to the medications section of this board and read the post "123 pain free days and i think I know why." It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s a long read, worth the time.

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

Hi Ben

Tramadol doesn't really touch the pain of CH, it takes 20 or so minutes to take effect and there are all the problems associated with regular narcotic use (addiction, etc).

I suspect that the doctor who diagnosed you knows enough to diagnose CH but is not remotely up to date with effective methods to prevent CHs and to abort those that you do get. You really need to work with a neurologist who specializes in headaches to get the most effective treatment.

Joe's post is an excellent summary of a good treatment regime which will be a lot more effective than taking tramadol.

Keep reading and reading everything here and ask all the questions you can think of.

Your support group (OUCH/UK) can guide you on how to get to a headache clinic, by-passing your local docs who have such limited experience/knowledge. This is a good organization to join/support.

Knowledge is your best defense with this problem. Suggest you start reading the buttons, left, starting with the OUCH site and,




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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The PDF file, below, outlines the most commonly used treatments for Cluster. You can print/use as a tool to discuss options with the doc.
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At this stage, we can offer assurance that there are some effective treatments available. Next step is getting lined with with a good clinic to gain access/knowledge.

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Guys thank you so much for your help and advice so far. I have now been to see a different doctor who seems to know what she is talking about and she has prescribed me Simatruptin nasal spray(not sure about the spelling). Also i took the advice of using energy drinks yesterday and allthough i was buzzing on all the caffeine, i did manage to have an attack free day. Not much sleep though but who cares if you have no attacks right. Once again thank you all so much.

Ben, our experience is that the spray form is less effective than the injection. In part, because developing good technique for using it is important.

In any case if spray doesn't work to your satisfaction, talk to the doc about injection. The pill is too slow acting for Cluster.