Hi Krys

You and your husband have certainly been going through a pretty tough time, not helped by how the different doctors have been handling things.

Whilst many parts of your description sound just like a cluster headaches (CH), there are some parts that don't, like going unconscious. You also said "he's now getting a different type of stabbing pain after he falls asleep that causes him to wake up mid-scream, but then it goes away in a few minutes" - this sounds like it could be something else as most CHs last longer than a few minutes. It could also be a combination of headache types.

We're not medical doctors here, so you really need to get your husband to see a neurologist who specializes in headaches as there are a number of other things that give similar symptoms to CHs but need to be treated differently. An accurate diagnosis from such a specialist will get your husband started on the treatment he needs.

Where are you in the world? There are some suggested doctors on the OUCH website - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or .

Do keep a diary of the headaches, note the time, duration, pain level, symptoms and anything else that may seem applicable, e.g. started just after drinking wine, etc. This will help with the diagnosis.

Have you tried the CH quiz - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or - this can be a good guide, but it's not definitive.

Some of the medication you've listed is not normally used for treating CHs. Fioricet is normally used for treating tension headaches. Dilaudid is an opiate based pain killer, which will have little impact on the pain from CH and opiates can cause multiple other problems, so are normally avoided with CH. Naproxen is an anti-inflammatory, again not normally used with CHs.

Some of the other medication is more useful for CH. Prednisone is often given as a preventive, starting at a high dose (around 60mg) and tapering off over about 2 weeks. This for many people will stop the CHs, however it should not be used long term. It is normally used to give time for a different prevent, e.g. verapamil, lithium, topomax, etc. to build up to an effective dose.

Imitrex injections can be very effective in aborting a CH, however restricting it to just 2-3 times per week is probably over cautious, however it can be pretty tough on the heart so other medical issues with your husband might be why he is restricted to 2-3 times a week.

Oxygen can be highly effective with CHs, however you need to start it soon after the CH starts, so waiting long enough to get to hospital is unlikely to give the best results. When using it, a high flow rate (15lpm or higher) using a non-re-breather mask can be very effective. I can kill my CHs in about 6 minutes at 25lpm and I try to be within a few minutes of one of my oxygen cylinders so I can get on it ASAP.

Oxygen shouldn't be as hard as it is to get. Some people here have been using welding oxygen, which is just as effective and you can get it without a prescription. This can all be sorted out very quickly, not having to take weeks. Posting where you are in the world will let people give you info on how to get it a lot quicker.

You've not mentioned using energy drinks - look for something with taurine and caffeine, like Red Bull, Monster, Mother or similar (depending on where you are in the world). Drinking one of these rapidly at the start of a CH can reduce the intensity and / or duration of the CH.

I hope this helps.

You're bound to have lots more questions, keep reading and keep asking them.

Thanks for the responses..I really appreciate it. Before this all started I actually had no idea about cluster headaches; I can't say I know the pain of those who have them, I've only just been a witness, but it must be horrible..

-The new stabbing pain he's getting is on top of the cluster headaches (I call them attacks)..it's only been recently, the past 2 nights. He's also not sleeping more than 3-4 hours a night because he can't even though he's exhausted. (His neurologist told him to relax more, turn off the tv, etc......so helpful.)

I have a notebook full of notes about each of the attacks..his neurologist didn't even look at it. We're near DC..I'll look into the specialist in Alexandria, though he's military so I'm not sure how many hoops we'll have to jump through to try to get him in there... ugh.

The Fioricet, Dilaudid and Naproxen were prescribed before he actually saw the neurologist (though a neurologist was consulted)..he's not taking them anymore. The Dilaudid made him completely out of it for days..(out of it meaning just not aware of anything and really loopy and unstable on his feet...the headaches still occurred).

-I do not understand why this neurologist did not prescribe a preventive medicine on top of the prednisone. Most of what I've read has said they're started at the same time so the preventive can be in effect by the time the prednisone is stopped...this doctor also pretty much brushed off our questions about oxygen and treated it as something that can be tried later if the prednisone isn't working...which does not make any sense to me.

The Imitrex hasn't seemed to help at all...or maybe it has, I can't really tell...the attacks seem to be farther apart than before (they used to be 2-3 hours apart, and knock on wood, he's had 1-2 every 24 hours for the last 48 hours after starting Imitrex), but now he's also had a constant headache (more in his forehead than behind the eye) since he started the Imitrex, and not just a minor headache but not as severe and painful as the attacks. I'm not sure if that's common, I know I've read about rebound headaches but he's had a constant headache since he started Imitrex. The doctor brushed off our question about that also...

He hasn't tried chugging an energy drink at the onset yet; I actually bought a red bull today for him to try but he didn't really have time to chug it at the onset of the one he had this evening. (He did an Imitrex injection because he felt like one may come but wasn't sure, and then ten minutes later he was on the floor in pain.) The third ER doctor told him to avoid all caffeine...but from what I've read on here caffeine may help in some cases.

The going unconscious along with that new stabbing pain and a few other symptoms worry me that something else could be possibly going on on top of the cluster headaches. I described the two passing out unconscious events like seizures because that's what they looked like; one ER doctor said they could have been complex partial seizures..but this was before the cluster headache diagnosis.

He hasn't been sleeping since some of the attacks, or the stabbing pain, have woken him up..he's just terrified to fall asleep, and even Ambien didn't help. Yet his neurologist just said turn off the tv and try to relax and eventually your body will be so tired it has to sleep. He hasn't slept more than 3-4 hours a night in two weeks now, so it's not that he's not tired or doesn't want to sleep, he's just too terrified too. One doctor mentioned maybe anti-anxiety medications, or trying Ambien again.


Also, he was getting oxygen one night in the ER this week, and had an attack while already on the oxygen. It was the first time oxygen was used though...the oxygen did seem to help the other headache he's been getting since starting Imitrex, but it came right back after he stopped.

What worries me is that this doctor doesn't seem to have done enough research into cluster headaches and doesn't have experience in the area, at least it would seem. We both just feel helpless having to sit and wait for the next attack, knowing the Imitrex hasn't helped one yet, and the prednisone will take time (if it will even work in his case). He hasn't had any other health problems in the past, and now just kind of feels doomed.

Mike NZ wrote on Feb 27^th, 2011 at 3:31am:


The oxygen use was with a non-rebreather mask and was 15lpm - maybe he just needs a higher flow rate for it to be effective (or at least I hope that's what it is). The Imitrex has not helped at all, except possibly lengthening the time between attacks, but I'm not sure if that effect can be attributed to the Imitrex or something else...and it's given him a constant headache for the last few days...

The problem is his doctor didn't prescribe a preventive medicine...prednisone is more of a transitional medicine to try to break the cycle while the preventive takes effect, is that right? (I've read that but some places have kind of said prednisone is a preventive? I'm not sure...)

Mike NZ wrote on Feb 28^th, 2011 at 12:09am:


yeah, this is what i had read before.

ugh, i'm dreading tonight. his attacks at night have been getting later and later. he's been sleeping on the floor for a week now because he's afraid of waking up in pain and falling off the bed :\ i also was reading one of my posts somewhere else and these actually started before the beginning of january...but then, he would just say he had a bad headache and he'd crumble to the floor and hold his head, and then try to get up and crumble again in pain. there wasn't any screaming/rocking/crying/banging his head then though. i just hate that he's in so much pain and it seems to be getting worse...

They're Imitrex injections..they may or may not have lengthened time between attacks but the attacks are longer and more intense..and he's had a constant headache since starting Imitrex almost 6 days ago.

QnHeartMM wrote on Feb 28^th, 2011 at 10:51pm:


He started prednisone a few days ago also. This doctor didn't seem to care about the constant headache at all..he didn't even address it when we asked. Ugh.

B wrote on Mar 23^rd, 2011 at 8:49am:


That's interesting, I just read a little about migralepsy and I'll look into it a bit more later. I am absolutely convinced (even though he denies) that both times my husband went unconscious were seizures. No, I'm not a doctor but it looked like a seizure and he was confused after and it was not simply just fainting like he seems to think. Doctors never completely ruled it out, and just said if it happens again to bring him back in. (The problem is when the patient is saying no doc it wasn't a seizure it definitely wasn't, yet they were unconscious and could not see or feel what was going on...I feel like doctors looked at me like the crazy paranoid wife a few times.)

Anyway, an update..we finally got him to a second neurologist. He finished the prednisone and the taper (didn't seem to help)..he was on Topamax for weeks and this new neurologist took him off of it. (The old neuro had actually just doubled the dose, which did not go well.) He had an occipital nerve block (from the old neuro) and increased the doseage of indomethacin..one of the two seemed to help and decrease the frequency of the attacks..but then wore off and he was told to stop the indomethacin. He started verapamil and just started some new doseage of it. The frequency and severity of attacks seemed to go down..he went a week without an attack..and then 10 days, but now has had 2 attacks in the last 3 days. (The ones previous to this week were much less in severity than the 10s he had been getting, and much shorter. But last night's was 25 minutes long and looked about an 8-9..he didn't say.)

And the doctors don't know what is causing the constant headache he's now had for almost two months. I feel like if he only had to deal with the cluster attacks, things would be ok..or if he only had to deal with the constant headache, it would be ok..but he hasn't been pain-free for a second for the last almost 2 months...ugh.