Hello
I've been suffering on and off for the past 15 years from these headaches and when they came back nearly two weeks ago I recognised them immediately. They've decided to come on 1-2 hours after I go to sleep (it used to be 10am every morning on the dot) and I was not taking this again so I went straight to my GP who agreed that they are indeed CHs and started me on 100mg Sumatriptan tablets. These worked great until last weekend so off I go back to the docs again. This time he read up on START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE and prescribed me Sumatriptan injections and told me to come back in two days for Oxygen as well. This time round I have had neck pain constantly since the start and he told me to go to A&E for a CT scan. A&E told me that this would not show anything up so have sent through an urgent MRI scan request and asked my GP to refer me to a neurologist urgently
Well today my GP re-prescribed two weeks supply of injections (which work well so far - 7 minutes to abort my first CH last night and 13 minutes for the second one at 6am this morning) and told me that the O2 will be 4 more days... He said the MRI scan appt is in progress and is sending off the urgent neurologist request today

In the past I have tried every pain killer with no affect, Chiropractors with some response and cutting out Lactose (which showed up in an allergy test years ago) that seemed to break the last two cycles. I had been written off by other GPs and Headache specialists before and I am thankful that I seem to be believed this time and the treatment is working so far

When I got a CH before the tablets or injections they would last 1-2 hours and I would pace up and down, rock on the floor, lay in the bath (the cold helps the neck pain ever so slightly) I just couldn't find a way to get my neck comfortable. I hold my head in my hands and constantly rub the top of my head. My wife notice nail marks on the back of my neck the other morning - I must had dug my nails as I think I was trying to tear the skin from my neck.
The pain follows the typical CH pattern - I also find that I get very hot on the same side as the CH. My favorite descriptions are it feels like having all my teeth pulled out with out anesthetic or having a leg amputated without the anesthetic.

I hope that the injection still works tonight (I kinda lost hope when the tablets stopped working earlier this week) and I'm looking forward to getting the O2 next week - you can only take two injections in 24 hours so would rather save these in case the CH comes back at work.
I've been told that the neurologist will be able to give me something to stop the CHs happening and that the MRI will rule out anything else

Derek,

    Please read the link to the left of here in yellow.  "Oxygen info"   print it out if need be and take it to your Dr.   

Hi Linda

Thanks for that - I'll checkwhat they supply with the O2 tank when I get it against the ino- he did say that he has requested the correct mask at time of ordering

Hey Derekeith - I wouldn't be too concerned about the injections losing effectiveness just because the tablets did.

The tablets are known to be ineffective for cluster, but the injections are known to be a powerful, reliable abortive. So powerful in fact that you really should consider stretching your doses as described in the imitrex tip! START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE This could really save you (it certainly has me) if you start getting more than 2 attacks a day while awaiting the O2.

After you get that O2 and start using it for your primary abortive, you can have the injections on hand as a backup, and you'll have yourself the most fearsome CH aborting arsenal known to mankind right there.  :)

I've got a message saying I've got two large O2 cylinders and a specialised mask being delivered in the next two working days so fingers crossed

Also starting on the vitamin D3 and Omega 3 in the hope it will break the cycle

No news on the MRI or Neurologist appointment yet but I suppose it is too soon at the moment

I have had a shadow feeling in my neck all day but I've found a glass of cola easies it a bit? Not sure if anyone else has found this?

Hi Derekieth,

Great news on the o2!!!    If you are feeling a bit of relief from your shadows drinking cola, give an energy drink a try.  Red Bull or Monster, anything with Taurine and caffeine in it, can help with shadows and even with bigger hits! 

PF wishes,

Jeannie

No mention of you being on a preventive med in addition to the Imitrex. This should be a priority move.

See PDF file, below, and print out the following in full:





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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And print this to share with your doc:

Headache. 2004 Nov;44(10):1013-8.   

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.


    Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).

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SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented.

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Thanks Bob
My GP has said the neurologist will sort out the preventative meds (waiting on the appointment) but I am seeing my GP again in two weeks so if I have not seen the Neurologist by then I will bring this up with him as I have been reading up on these and have seen that the sooner you start on these in the cycle the better.

I didn't catch "UK" at first reading. You have a excellent support group at:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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Make a point of mentioning your specific locale in you next message--make it BOLD. You have a number of countrymen here and it's always good to share info. about dealing with you medical service.