Hi guys-

I believe I am a new cluster head, unfortunately. Fortunately I found you guys and this site has been extremely informative.

My headache started 24 days ago. It came on as a constant dull ache on the left side of my head, with a few severe bouts (6-7 KIP scale) lasting about 5 minutes each time. After about a week, I was bed-ridden with a constant ache, and severe bouts hitting 9-10 on the scale. That prompted me to finally go to the doctor. He sent me home with muscle relaxers, believing the pain was caused by a tension headache. They did nothing so I returned to the hospital a few days later with the same severe symptoms. They gave me an MRI and a spinal tap which both came back negative. Now I'm awaiting an appointment with a neurologist, but I'm confident in what I have based on everything I read here.

Thankfully, I am back to the dull ache (is that what you guys mean by shadowing?) with it sometimes going away completely. It'll still ramp up randomly, but only to 4-6 on the scale. Nothing like what it was like during the second week. It ramps up maybe 3-4 times a day and lasts 5-15 minutes.

As I'm waiting for the neurologist appointment with the same general symptoms, my doctor just prescribed me verapamil. I'll start taking that tomorrow and I have high hopes based on what I've read here. I've also been taking 800mg of ibuprofen as needed, which seems to be helping with the dull ache.

I'm going to pick up some Vitamin D3 as well based on what I've read here.

Moreorless just wanted to say hello and express some gratitude that this site exists. I never heard of cluster headaches before. I actually stumbled across this site after googling what verapamil was and if it could be combined with alcohol. (I enjoy a few pints of Guinness now and then.)

I've never had headaches before so it is pretty startling when you feel that pain and it continues for 3+ weeks now. I was starting to think I needed another MRI because this just can't be random!

In any case, here's hoping I have good luck with these treatments in breaking my current cycle, and that it stays gone for a long time. I have a vacation coming up in 3 weeks!

Cheers

(FYI, as I mentioned this is my first cycle. I'm 31 years old.)

Hi MrGibbs   [smiley=wave.gif]

You have come to the right place. It's vital that you get a proper diagnosis because there are many different "headaches" which mimic clusters, but they all respond to different medications. What works for one condition won't touch another. In fact, it's trial and error of the meds which provides the diagnosis.

That said, if it really is clusters then read all you can on these boards. The D3 regime has had fantastic results for 80% of those who try it. But it's vital that you get your blood tests, and take all the other components that go with it. Look for post by Batch - he's the mastermind. (my hero).

Also, there is a link (highlighted yellow) on the left of your screen entitled "oxygen info". It is most peoples favourite abort method. Also Sumatriptan (may be called imitrex or imigran depending on where you live), is excellent. The pills are ok for up to kip 4. I've never tried the nazal spray but I can vouch for the auto injections 100%. Will kill off a kip 10 in 5 - 7 minutes. Pain killers will have no effect at all. My neuro told me that even morphine will not work for clusters.

What we call shadows is a very mild cluster headache, no more than Kip 2 0r 3. You know it's there and it's the same kind of pain but more of a  tolerable irritation than a pain. If only they were all like that.

Many of us have suffered for years without a diagnosis because this is a rare illness, and often even the neuro's are not well informed. I was 5 years without a diagnosis or meds. We often have to educate our doctors ourselves. With out making him feel that you're telling him his job - they don't like that - perhaps you could tell him that you suspect cluster headaches. It may save you a lot of pain time.

I too, have a big long haul trip coming up next week, to 3 different countries. Last time I went away this beast came with me and ruined it, so this time I have stockpiled my injections to take with me, and a huge supply of all the D3 stuff. I have been taking it for almost 3 months now and although I have gone into a cycle ( I can feel all the shadows and other symptoms) there has been no pain bigger than kip 2. :D. I urge you to get your blood test and get on it.

Finally, keep coming back here with any questions, or just for a rant if you need to. As sufferers, we know more than any doctor you will find.

Enjoy your vacation, and best wishes
Maz.

Hi MrGibbs,
I to enjoy a pint of Guinness, but alcohol is a major trigger
for a lot of us clusterheads, so it would be wise to give
that a break and see how you go. Once the episode is over
then i'ts ok to have a  [smiley=beer.gif]. Also be wary of
alcohol comeing up to Spring and Autumn these are known
bad times for CH's.

Cheers, Hoppy.

NO! You don't have a good diagnosis and so you are not in a position to either diagnose yourself or start self-treatment.

If you start with any treatment it serves only to confuse the doc should any symptoms be altered. Then the issue of there being many cluster-LIKE disorders which mimic headaches and yet are not headache disorders.

See:
Link to: cluster-LIKE headache:

IN: "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"

Neurologists, as a group, have meager training in headache disorders and frustration with them  is a recurring source of frustration around here. Unless your doc can assure you of having some experience/training in complex disorders, try and locate a headache specialist.
--
LOCATING HEADACHE SPECIALIST

1. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

2.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

3. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
-------------
Please....

It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location.

Welcome to the board, as Bob mentioned, your best shot is a Headache Specialist Neurologist as even your garden variety neuros just don't have the expertise to diagnose/treat the more complex headache disorders.

Until you get in to see the neuro a couple of suggestions:

Avoid alcohol, for a large percentage of CH'ers it's a nasty trigger for an attack. Other triggers are not as common but if you follow the migraine trigger guidelines for now you can maybe lessen the number of attacks while you're waiting to get in to the neuro.

Keep a headache diary, as much detail as possible. When the attack starts, how fast it builds how high the pain level goes, how long it stays at peak, how fast it fades, where the pain is centered, what kind of pain, stabbing, pulsing etc., any secondary physical symptoms you observe with your eyes, face, neck etc. Any potential triggers you have identified, any of the over the counter meds you've used and what they have or have not done. The diagnosis will be found in the details, the more you give the doc to work with the better chance of getting it right the first time.

If the final diagnosis is CH don't lose this website, it's a gold mine of info. Wishing you speed in your diagnosis and some pain free time soon.

Joe

Thanks for the suggestions, everyone.

I am still waiting for an appointment with a neurologist. Apparently, here in Boston, there are a lot of people in need of one.

My symptoms haven't changed since I last posted. My physician prescribed me verapamil, which I've now been taking for a few days.

I've been trying to figure out what triggers the severe headaches, but they just seem to be random. I always wake up with it, but after eating something it usually dials back a bit. I usually get one as I'm getting ready for bed as well. During the day it seems anything can cause it and it even comes on if I'm just laying down.

Just brutal. I'm in day 30 now, and I've been able to work a little bit. Fortunately/unfortunately I am a self-employed electrician, so I can take the time off as I need, but I am obviously not making any money, and have no paid time off or sick time.

Cluster headaches are not only painful, they're inconvenient! They come at all hours and disrupt our plans. And oh yeah, they hurt like anything. Who are you seeing in Boston? I'm in the Attleboro area and have two neurologists. Just curious who you hooked up with. blessings. lance

Taking 800mg of Ibup. markedly increased the changes of developing rebound headache--that is, an increase in attacks. The risk is too great, most especially if you have Cluster, for which pain meds are a no winner.

Verapamil: how much? It's the most widely used and effective of the meds used to reduce/prevent Cluster attacks but almost always used in high doses. If you are not at the levels (following) print out this article and give to you 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).

=======================================
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.

A couple of warnings for ya!

Identifying triggers is helpful in that avoiding triggers will REDUCE the chance you get an attack. If you religiously avoid ALL of you triggers....you're still going to get hits, just maybe not as often.

Some of the more common triggers are alcohol, stress...either too much or when you relax from stress.....major sleep cycle disruptions and strong aromas, petroleum seems to be a more common smell. Triggers vary greatly from sufferer to sufferer so it takes some work on your part to try and track them.

Energy drinks are an effective abortive for many. Monster, Rock Star, any with the combo of caffeine and taurine. Many here are now using those little "5 hour energy" shots cuz it's less of the nasty taste to drink down and it's easier then carrying soda can sized drinks with you. Try those instead of the ibuprofen next attack, Bob's right about the nasty potential for rebounds with the OTC meds, not to mention the damage they can do tou your insides long term. :-/

Joe

I stopped the ibuprofen after some experimenting. Basically I have these lulls in the pain, where it's minimal and once in a while is eliminated completely. Then I'll suddenly get an attack.

I attributed the lulls to the ibuprofen. However I went a few days without taking it, and I experience the same lulls, so I just stopped altogether.

My physician has me on 240mg of verapamil. Haven't felt any changes, but it's only been a short time.

I'm having trouble identifying what triggers the severe pain. It seems if I'm more physically active I get more of them. For example, I'll spend a day trying to relax on the couch and I'll get 3-4 severe attacks. A day like today when I work (electrician, so up and down ladders, drilling holes, etc) I had about 7-8 and they lasted longer. Also, oddly enough taking a shower seems to trigger it, but that could also be that I take a shower at the same time each night?

I still do not have an appt with a neuro yet, which is making me very unhappy with my doctor/hospital. Today was a pretty bad day, so I plan raising a little hell with them tomorrow.

Of course I am still not sure if what I have is cluster headaches, just that my symptoms match a lot of what is discussed on this board. One thing I've noticed is that when I'm in the middle of a bad attack, bending over to tie my shoes or something will make it far worse. It'll ratchet up the pain more and be really throbbing. Anyone else have that experience? Also when in mid attack, I'll try to massage my head, and certain spots will trigger increased pain, but if I go to that same spot a second later it does nothing! Also, moving my head around or stretching my neck, mid attack, can trigger a jab of increased pain, but again, try it again immediately after I wince, and it does nothing.

So hard to describe what is I am experiencing to my wife and friends. That's why I am so anxious to see a neuro who maybe speaks this language.

Hi MrGibbs,
I'm not a doctor, but i've been around CH's a long time, and
what you are saying does'nt ring any bell's to me as a CH
sufferer. I think the better sooner than later you see your
neuro to find out whats going on. In the meantime take
the cluster quiz. The link is to your left at the top of this
page it will verify what i'm saying right or wrong.

Hoppy.

Verapamil takes about 10 days to become effective at a given dose, so it isn't a quick change, plus 240mg is pretty low for CH as many need 360-480mg a day and some up to 1000mg.

However as Hoppy has said, you really need to work with a headache specialist to get a definitive diagnosis as to what is causing the head pain. It could be CH, another headache type or something else or even a combination of things as multiple things can result in the same or similar symptoms.

Once you've been diagnosed you can get the suitable treatment that will work well for you.

If it is CH then you've found the best place for help and support.