SO 1am again, and feel like a terrified child waiting for boogie man to jump out of my closet. 

I am 25,live in North Carolina, and am a full time student, army wife and mother to an amazing 3 year old daughter. My husband has been deployed since sept.  and was diagnosed with Cluster headaches in Jan.   

It all started a week after Christmas and woke up in the middle of the night with this terrible pain on the right side of my head right above my ear but on the inside behind my eye reaching to area above my ear. A screeching, stabbing terrible pain I cannot compare to anything.  I was literally on the floor crying and screaming then up and pacing like if I walked fast enough I would leave it in the previous room, this lasted for several hours until it was just  gone....just completely gone as fast as it came,  and sitting there sweating, crying and confused  completely exhausted in every since of the word.  This lasted almost 5 days straight with little relief b/t attacks and I was so tired, and angry and confused and utterly ALONE  not to mention still having to take care of a 3 year old by myself  while going thru this I felt like I crazy....completely mad and off the handle,  when the pain was gone  trying to explain to friends or family was near impossible.  Ended up in the ER on New Year’s Eve.   the doctor explained he thought it was CH,  after several more trips to the ER, doctor appts, MRI’s, Cat scans,  and referrals  I was officially diagnosed with CH by a Neuro.  the end of Jan.    When they said it was CH  I literally told the doctor there was no way it was a HEADACHE ….are you kidding me?  Im dying, theres a tumor or something in my head and you need to take it out NOW or if you give me a scalpel and a mirror I will gladly try to do it myself!!  How can this much pain be JUST a headache, this was NOT a headache this is torture and  that’s exactly how  I feel, like  I have my own mini set of terrorists in my head  torturing me to get some type of info only I must know.   SO   Now I am taking 80mg of Verapamil and have the imitrex injections (wouldn’t even take a Tylenol or any meds for that matter if I could avoid it in the past; now I’m giving myself shots! ) This is insane, utterly insane really think I must be insane too.    Before the meds it felt like the pain was constant and never ending.  With the meds, now I am getting  the usual night attack about 4 times a week with about 1-2 day attacks   the attacks are normally the same times, 11am, 2pm, 9pm and the night ones start between 1-2 am.  The day attacks now last about 30mins or so and the night ones are about an 1hr with the injection,  without they can last anywhere from 1-5hrs.   SO these started  late dec. now it is APRIL,   that is 4mos straight, and im not sure how much more I can take of this…….does it ever just STOP!    Im so scared for my husband to come home and see me like this, I mean I wouldn’t love me like this, why would he?  and  I feel like I am a terrible mother now,  like I said I have a 3yr old and am here all alone with no family near by (not that theyd understand anyways)  but  im so tired all the time now, and feel like im not being the best mommy I can be for her right now and often wake my daughter  with my night attacks and she just wants her mommy and I just want to be alone and bash my head on the hardwood floor.  When im not in pain, Im terrified for when it comes back because I know it will, its just a matter of time.   Those of you who have been suffering with this for years, you have my upmost respect and must have the patience of jobe……. Please someone tell me I am not alone and this WILL  go away!!!!!   

You are SOOO NOT alone!  Very, VERY not alone!  That's all I have for you right now   I'm so sorry , your not losing it though, it sure does feel that way!

You're so not alone. Everyone here either has CH or supports someone with it, so you're totally understood.

Most people are episodic, so after a while, which can be weeks to months, the CHs can stop for months to years or more.

As others have said, 80mg is a very, very low dose. Most people need 360-480mg a day with doses spread out during the day (480 for me). Only change your dose in consultation with your doctor.

Have you got oxygen? Using a high flow rate and a non-rebreather mask I can kill off my CHs in about 5 minutes or less. This is a lot cheaper than imitrex, you can use it safely multiple times a day and no side effects too. Make sure your doctor gives it to you. Read up more with the oxygen link on the left.

Also read up about how vitamin D is helping a lot of people, myself included - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or .

Read, read and read some more, plus ask all the questions you can think of.

The key to gettng some relief is to have the right doc on board. So, let's start with the basics:

Please tell us where you live. Follow the next line to a message which explains why knowing your location and your medical history will help us to help you.

Cluster Headache Help and Support › Getting to Know Ya › Newbies, Help us...help you

You can add your location by editing your profile. CP Member --> profile
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Central is the neuro's knowledge/skill in treating complex headache disorders. Especially Cluster, most neurols have very little training and limited experience dealing with a disorder which affects about 1% of the population.

What is needed is a direct, honest talk with your man about his backgroud and capacity to help you.
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The first sign of concern is the very low Verap dose. Normally, it takes a range between 400-900mg to get benefit--when dealing with Cluster.

Normally, you would be started on stout dose of a steriod, Prednisone, tapering it off rather quickly--while starting Verap at the same time. Pred. will kill an attack cycle within 24-hours but it's tapered off quickly. Idea is to give you immediate relief while the Verap begins to take hold.

The abortive you're using is fine but the duration of action is not long and so the Verap provides some additional protection by reducing frequency/intensity of attacks.

Suggest you print out the following and use it as a tool to discuss your treatment with the doc.
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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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Next, print out the PDF file, below. It's a "catalog" of the most widely used meds for Cluster along with dosing information and evaluations effectiveness and the quality of the evidence for use.

This is for your information to start learning about how you should expect to be treated AND would suggest a copy to your doc to use as a discussion tool re. his plans for you.

At this stage, there are two essential steps to take: first, improve your level of relief and, two, to consider whether this is the doc to stick with. (Info re. your location comes into play here.)

Do you  have any support to help care for your child when you are under a major attack/stress?
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As you have time, explore the buttons (left) starting with the OUCH site for general learning about Cluster. Print out the next article in full:




Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or (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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Finally, keep in mind that we are all veterans of this struggle--but we have all survived. We'll help you win this one.....

Have you tried any steriods like Prednisone? Have you looked into the Vitamin D3 regimen? Have you tried guzzling water like a crazy person? What about oxygen?

I just got out of 3 month doozy of a cycle myself and it didn't fully end until I began taking 5000 UI of vit D3 daily and drinking tons of water along with my prednisone taper.

You need to keep exploring new strategies if what you are doing is not bringing you relief. This headache will clear up eventually on its own, but it could take many more months. Read up on this site and print out some info for your doctor to look at. Most people with enough trial and error usually find something that can help them.

Hang in there, you're dealing with the worst of it right now.

You have gotten great advice the only thing I can add is I'm now 49 yrs old and have had Cluster's since the age of 17.

Back then I went through many many neuro's to find out why I had such pain and had gone through meds like candy only to find out that I found really nothing until I was put in the hospital at the age of 26 and started on DHE45 which is a really old drug and has really been replaced with Imitrex.

At the age of 17 when they first started I would start in May getting them once a day lasting an hour to an hour and a half and they would last until Sept when they left as fast as they came.  No one believe just how bad the pain was so I really didn't get too much support at that time.

I married at the age of 20 and at the age of 27 against my Neuro's advice got pregnant so he dropped me as a patient and I was on my own to do this along with my OB.  I made it through until I was 8 months when they started again.  That month prior to giving birth I thought I would jump off a bridge and if it wasn't for the baby I might have. 

I brought a new infant home and for another 5 weeks I dealt with them using only forinal.  My husband tired to help and was supportive but really didn't understand.  The cycle broke and I was good for a couple of years.  This was the first time that I skipped years.  Prior to this and with a Neuro I was able to lessen my cycle from 5 month to 6-8 weeks but you need to repay the beast so instead of 1 a day I would get 2-3 a day.

6 years later I got pregnant again and for the first couple of month the beast knocked on the door many times and I managed to carry the pregnancy to term without using drugs.  Not an easy task but you never know just how strong you really are.

Fast forward  I now skip years.  My last bout was Jan 2011 and they only lasted 6 weeks.  I learn a ton of info here and the support was unmatched by anyone.  I now use half the amount of Imitrex that I use to use.  I use the O2 15 L with non rebreathable mask and my life is good.  The O2 is worth it's weight in gold for me and won't ever be without it. 

What I have learned is if I mess with my Serotonin levels like taking 5http or other drugs that will do this it will trigger them.  It's only taken me years and years to figure this out and due to my last cycle and the way it acted I knew right away it was from the 5http.  Won't be repeating that mistake.

Life gets better once you know what it is and you are prepared to do battle.  It's the not knowing that freaked me out.  I also didn't have the tools to handle it nor did I believe that this much pain wasn't going to kill me.  In fact I was my own worse enemy when they hit because in the early stages I would have ended it because the pain was just that bad and nothing at that time was helping and no one really believed me just how bad they were.  We have come a long way.

Get the O2 whether you have to beg borrow or steal it's a miracle to many as it is for me.  Come here for support and any questions I really think that this site has more info then the Doctors.  I do wait for the first couple of months and even to the first anniversary wait for the other shoe to drop but once that passes I usually feel a bit more safe.

PS. I'm still married to the love of my life with two children and he has seen me at my worse and has seen my at my best and guess what he still loves me and now totally understands.  All I can say is you are one strong women and you should be proud of that. 

To many pain free nights and days
Sami

Welcome to Clusterville and one thing about us WE DO UNDERSTAND... almost everyone here has been or is where you are right now..

Me - my last cycle started in '97 (I'm chronic)and is still going on.. I've been as far down as it's possible to go and have come back to the land of the living.. so it's POSSIBLE.. We're a tuff bunch..

Now, the Red Bull is good. Chug a can at the first sign of a hit, O2 (keep yelling till you get some - read the literature on the left about HOW to use it properly) and get some melatonin and take 10-12mg before bedtime (this will help get thru the night attacks).

I just started on the D3, so I don't have much to report on that, but don't seem to be getting hit quite as bad lately.

And don't worry about being a bad mommy... you'd be surprised how much the child will understand. My grandkids live with me and are more support than anyone else. My oldest seems to know when I'm about to get hit and runs for the O2 bottle and starts yelling, "Breathe Granny, breathe"... He knows NOT to touch me till the hit passes and then it's time for a "hug". Seriously, you'll be surprised how much support you'll get...

One thing to remember - THIS IS NOT YOUR FAULT - it's a disease that none of us asked for, but we've got it and have to do the best with what we have. Our attitudes are our best weapon.

But come here and say anything, ask questions  - like I said... we've all been right where you are or we're there right now, so we do UNDERSTAND. 

Thanks alot to everyone for all the great advice, Made a new appointment for my Neuro.  to discuss upping the Verapimil. and O2.  Even thou they havent been getting much better I do have one bit of good news so far.... Actually got 5 hours of straight sleep last night and was able to have a great Easter with my daughter today without much pain, I chugged a large Redbull like many have suggested and it seemed to really help, was able to avoid the beast until 9pm tonight and its and 1 1/2 hrs later now and the pain is there but tollerable for the time being, hoping I can get some more much needed sleep tonight and get thru this week before my next appt.    Thanks again to everyone, it reallly does help alot to know somebody actually does understand  the NOT knowing really is aweful,  the why me and why is this happening and what is it?   And to be honest I feel like i was clueless until so many of your posts,   I havent heard not even half of this stuff from doctors or my research so far.   Many doctors so far seem just as clueless as I am.   I know I still have lots of reading and  fighting to do but feel like I actually have something to go on now, more then a wiki deffinition that has been spit at me over and over again.     Will update more, hopefully tomorrow   fingers crossed the "alarm" doesnt sound tonight, and once again Thank you for all the support.

  If your doc advises, "I don't prescribe 02 because insurance won't pay for it (most don't) . . . tell him you're aware of that but you're willing to pay cash (02 is CHEAP).  If used at the first sign of attack, you can kill the beast in minutes and avoid the "dance"

   Be Safe,    PFDANs

     Richard