Hi
Tony in corwall, uk
3 hours sleep last night, episodal, but now getting 2 or 3 shadows, KIP 2 ish me thinks, enough to ke me and need to get up.
Doc won't prescribe O2, I smoke, it helps in an attack sometimes, tried most UK meds, will post later.
Cold water, a set of dumbbells in the garden, rocking, cold shower, the normal I assume.
Had a few KIP 9 in the past, supportive wife and work, thank God, I will need to come home later to sleep.
Triggers? Heat, stress and just because they want to hurt me for no reason.
Only had a few daytime and sometimes early evening, hide from the kids time, mainly night terrors.
Dealing with it at the moment, sorry about the grammar, I am shattered.

Welcome, and sorry you are here; or rather, sorry you are in so much pain. Episodic or not, tell your doc you don't plan on smoking in the house or while you're breathing O2. Or get a new doc. Just plain dumb is what that is. Energy drinks like Red Bull, Monster or anything that has a combo of caffeine (85mg+) and taurine (1000mg+) can help abort an attack. Batch has a great regimen of Vitamin D3, fish oil and magnesium/calcium tabs in the medications section that has helped so many. You haven't mentioned any preventatives like verapamil, lithium, topamirate? Just because you are episodic doesn't mean these can't help, and you can always go off them when the episode cycles down. Looking forward to hearing more. God bless. lance

What Lance said, you are working with a STUPID doctor. A man unwilling to prescribe you oxygen, the most effective, safe, abortive for CH, because he isn't comfortable with prescribing 02 to a smoker. Since a large percentage of CH'ers smoke, he is in a minority refusing to prescribe oxygen.

Dump him, find a real doctor. Staying with this doc will guarantee you hours of needless suffering. Feel free to show him/her this post. That doctor desperatly needs an education on treating CH. Glad you found us, this board will do far more to help you then your closed minded doctor.

Rant over. ;) Welcome home.

Joe

You have an excellent support group--explore:

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I understand that, by law, you have the right to get to any headache clinic of your choice. One way to by-pass your local doc. Explore with your support group.

If your local doc is open to suggestions, might print out the PDF file, below, and give him a copy. Good basic information  for you, in any case.

May also print out and study:




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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Hey Indi,

Sorry to hear about the all to familiar night terrors/shattered factor.  :(

I'm in full agreement with what the others have posted so far.

Thank God there are really effective ways to combat this beast beside what the docs will prescribe.

In addition to the O2 and D3 regimen already mentioned above, melatonin taken before bed will help some CH'ers find relief from the night hits. Starting dose is 9 mg, all the way up to 21 mg. This is considered the best form:

n-Acetyl-5-Methoxytryptamine

I hope it's available in the UK...I'm starting to think I may have heard others here say it isn't.  :o

Here are some details about the D3 regimen that lance brought up:
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Hi
It can't get worse than this
Was episodal but havin 2 or 3 a night now
Been doc's
Rizatriptan, apparently all meds are the same
Codeine and paracetamol 4 times daily, as if I wasn't tired and drowsy enough!
Still muted a visit to the neuro guy
Still no O2
Gonna have to give up smoking and pass the test
Trying the omega3 etc method, won't give me much D3 though, vitamin supplements was all I got
Time to switch docs me thinks

Codeine is useless for most people for CH. It was what I was given before I was diagnosed with CH. It didn't touch the pain, just knocking me out and left me with the fun of opiate withdrawals.

It is time for a new doc, make sure you get a headache specialist neuro who has CH experience.

Quote:

Doc won't prescribe O2, I smoke, it helps in an attack sometimes, tried most UK meds, will post later.

Why? There should be no reason why he can't prescribe O2. Look at this link on the OUCH(UK) website)

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You say you've tried most UK med's but you don't say what - they could be Smarties.

Bob has suggested you explore OUCH(UK)  - Have you?  You make no mention of it in your last post or even acknowledge the fact that he's trying to help you.

If you're looking for help then I suggest you ring the Helpline - Number below - leave your number and somebody will call you back. 

Rod

Thanks for all the replies and support,

Although the smarties response was a bit severe

I will list my meds when I get my head straight, I'm a teacher and work is full on at the moment, and being exhausted don't help.

I will ring OUCH for advice

Take care all