I am being treated for  cluster headaches with Verapamil 240mg and Imitrex shots as needed.  Does anyone else get severe neck pain in the morning that changes into a cluster type migraine on one side? thanks

Possibly a Cluster developing during the last phase of sleep.

In any case, the Verap dose is too low for Cluster.
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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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Increasing the dose may prevent you wakening headache.

Since cluster is not a type of migraine, I suggest dropping the m word.

Quote:

Does anyone else get severe neck pain in the morning that changes into a cluster type migraine on one side? thanks

My first sign of impending doom however it is a straight up cluster.

I never had this in the morning, but during cycles I sometimes get this in the evening - my neck hurts for some time and than I get an attack. Also, massaging the neck does seem to help and sometimes the attack is postponed.

BTW, neck pain could sometimes be the onset of the attack, which is felt in the neck or even shoulder and then travels to the jaw and head.

Thanks to Bob Johnson et al.
      Interesting study by Blau and Engel.   I was diagnosed with cluster headaches over 10 years ago and  Verapamil has been my main med with Imitrex the ultimate reliever.   I arrived at the 240 mg Verapamil extended release as a limit because higher doses caused severe constipation. I am definitely a chronic sufferer, with attacks 2-3 times a month.  This may be consistent with the study results since 69% of male chronic sufferers get partial relief.
      If the neck pain is the sign of "impending doom"  I don't find much mention in the literature, and I do not understand how it works.  Recently I got checked out by an orthopedic surgeon and he says it is "wear and tear".  MRI of cervical spine does not show any problem.  Physical therapist things it is arthritis because it shows up in the morning.
      I will ask my neurologist about the smaller short acting doses, but extended release is much more convenient.    I didn't know about the short acting type. 
      Shooky mentions neck pain as "onset of attack".  Have you seen any other bloggers with this symptom?

Neck pain is common in clusterheads on the same sida as the attacks.  Some develope a lump/bump in the neck (cluster bump) which Dr. Robinson told us at the Vancouver OUCH convention was a nerve ganlion which was inflamed.  Lots sleep without a pillow because of the neck.

Bob P wrote on Mar 22^nd, 2013 at 6:55am:

Since cluster is not a type of migraine, I suggest dropping the m word.

Amen Brother - 25 years of my life lost to this very lack of distinction between the 2 very separate conditions.
A Migraine is NOT a cluster attack.
I will call anyone out on this distinction if it saves any reader from confusing the two and living through the HELL I experienced with CH misdiagnosis.

Cheers, Ben.

this is where i am a little confused on the neck pain!
september the 1st last year i had severe whiplash and only recently started physiotherapy for it but a week after i got cluster cycle!
now major neck pain before during and after getting hit, never had neck pain with previous cycles.

cervicogenic headache?

To Cathlane...this is another area you have to be really careful! We tend to blame everything that ails our head. neck and shoulders on the beast. It's certainly possible that your current neck issues are a by product of the beast, or it could be all the tensing and shrugging we do during an attack is aggravating your previous whiplash injury! The body is one complicated organism! :D

Joe

several years ago I got pushed really hard by a really big man and got what I assume "wiplash". I could barely move my head for a month , and every night have to tuck my pillow under my neck for support or pain returns I to have noticed as the years go by my clusters are in the back of my head and neck more then it ever was before that injury.specialy this time.

Thanks, to everyone for the input.   Neck pain is still showing up with the cluster symptoms.  My Neurologist suggested taking 400mg of Riboflavin (vitamin B2) and up to 500 mg of Magnesium, but I can't say they have much effect on the frequency, or intensity of attacks..  Now if I get the neck pain with some one-sided headache w/nasal congestion, I call this a CH and the symptoms disappear when I give myself a 4mg Sumitriptan injection. 
  I will ask my neurologist about the smaller, more frequent doses of Verapamil suggested by Bob Johnson.  The 240mg slow release worked very well for years, but it seems to be less effective now, but still constipating.   

To Adam the PA,  Deeper than the trapezius.  A physical therapist showed me all the layers of muscles supporting the neck, and the pain seems to be coming from those.  When I get it there, pain meds like aspirin, tylenol, tramadol don't reduce the pain much.  But if I use the Imitrex, it is gone in 20 minutes, along with anything in my head.

I have always had neck issues,  years of playing rugby !
  sometimes small twinges which hang around for a few days then go,  but when it feels deeper and lingers for more than a few days, ch attacks are just around the corner.   once the ch comes, the neck pain dissappears.
  could be total co incidence,  but have I have noticed the trend over the last couple of years.
happened only a month ago,  a week of aching neck, then the clusters returned.......
colin

Bob P wrote on Mar 22^nd, 2013 at 6:55am:

Since cluster is not a type of migraine, I suggest dropping the m word.

I agree..my old dr used to say that...hence being my old dr.
I suffer from Tension headaches, Chronic Migraines and Chronic Cluster Headaches. All 100% different. There no comparrison.

As for the pain in the neck...I have none that relate to cluster headaches. I do have neck pain ut that is only recently and was chalked up as extreme muscle tension which has been triggering my migraines.

I have never ever had pain in my neck from a cluster. EVER
My personal expereince is that I feel an aura in my right cheek, then tingle sensation in trigeminal nerve in my face and then it shoots to my eye and if really bad to my ear. All right side.

Everyones experience having a cluster headaches can be a tad different but essentially a cluster headaches feels like being shot in the eye at point blank range and never dying....any other pain is not considered pain to me....just a sensation of stages befor ethe bullet reaches my eye.

I have pain in the intermediate trapezius associated with CH's I had weeks ago.  Almost a small knot.   

Years ago when getting hit frequently I had a constant knot(a big gross knot) in the inferior region of trapezius.  This knot took months to work itself out after being pain free.

While getting hit, sometimes having someone rub the superior region can bring relief.   

Does the the muscle tension bring on the headaches, or the headaches bring on the tension ???    I speculate the headaches bring on the tension, then the tension exacerbate the headaches !!! A vicious circle..............(in my case)   

Back again, and thanks to Bob Johnson, Bob P, JHK07, CH Survivor, blacklab, Cathlane.  To ClusterHeadSurvivor: your description:"feels like being shot in the eye at point blank range and never dying....any other pain is not considered pain to me....just a sensation of stages     before the bullet reaches my eye." reminds me of the attacks I had when first diagnosed.   Every night at the same time.  When I got my Imitrex shots it saved me, and the Verapamil 240mg has reduced the intensity fortunately.                                                                       So I still have to use the Imitrex several times a month if the pain becomes unbearable.  It is usually a combination of sharp pain thru the eye and temple (not as bad as CHSsurvivor) with deep pain in the neck area.  I have tried tapering off the Verapamil to get away from the constipation, but the frequency and intensity will pick up.   Glad I have the Imitrex to fall back on and I feel great today!  :)   

Neck pain is quite common in CH sufferers.

Hoppy.

The past few cycles I have logged my headaches.  Times, durations, where the pain is, etc..  The log of my last cycle has numerous references to neck pain.  Not severe but present.  Not as much this cycle.  Different cycle, little bit different twist.  Hope you are doing better now.

Since the trgemial nerve exits the skull at the neck and travels up behind and over the ear it kinda makes sense that the nerve could be irritated.

I pretty know when I'm going to get a CH because I will wake up with a tense right shoulder and a knot on the back of my neck.  My right eye then starts feeling like it wants to pop out of my head and the pressure in my right ear becomes painful.  So yes, I know that "pain in the neck" feeling with the CH.  I've been on the vitamin D regimen for a few months now and have had a decreased frequency and intensity of CH.  I've only had one really bad one this cycle, so I am grateful to the vitamins and o2 tips!