Hi there.  So glad to find this amazing resource.  My screen name says it all...helpless wife.  My husband started with cluster headaches in 2006.  At the time, we didn't know about this disorder, but in researching, we quickly figured it out.  The research was disconcerting because it didn't offer much hope.  After trying various prescriptions from doctors, we decided to ask for oxygen, as some of the research offered that as an effective treatment.  We thought:  "What's to lose?  It's non-invasive and can't hurt."  The doctor looked at us like we were crazy, but prescribed it.  It helped somewhat, or at least made it bearable. 

It's been two years since the last set of attacks (which were so severe, happening every couple of hours throughout the day and night), and they are starting again.  To watch my husband crumble like a helpless child and not be able to do anything is the worst feeling in the world.  He's scared of what's coming because he lived it.  As he says:  "I'm standing on the tracks, the train is coming and I can't jump off."  And I'm scared for him, which is why I'm here...I just need to know that someone out there understands what we are going through and maybe find some hope.[td]e [/td]

"Standing on the tracks..."  Regrettably that's an excellent description of this nightmare which must be so much worse for people like youself feeling helpless.

Fortunately it's the other way round and just what you're doing now is of massive importance. Research. For knowlege is power and our number one weapon against the beast.

Fantastic that you already have oxygen but there's a couple of tricks to get full value from it. Top left of your screen is a button "oxygen info" which will help a lot and then just ask questions. That's why we're here.

Many people get good results by chugging a can of Red Bull at the first sign of a hit. Sounds strange, I know, but it's to do with the caffiene/taurine mix.

Also slip down to Medication and Therapies board and check out a thread called "123 pain free". Lot of people putting Batch up for sainthood.

In any case just try to battle on. Supporters like yourself are pretty special round here and we'll back you every inch of the way.

Full steam ahead and damn the torpedoes,

Brian down under.

Using oxygen can be difficult with patience because of its hesitancy before working.  You might wake up with an attack ramping fast, get on the oxygen and start breathing... and breathing.  For the first five minutes while the hit only gets worse and worse, nothing is happening, you begin to think you are trying your hardest to do something, but not getting any damn results.  This is the bearing time, stay with it.

It is the second five minutes that things happen.  First, mercifully, it begins to just stop getting worse and worse.  Keep breathing.  Almost imperceptibly, but you will feel it and know it, a very slight alleviation of small impacts of pain, almost a tingling replacing it, usually in the head/temple area.  Oh but it still hurts A LOT. 

Keep breathing, very shortly ANYTHING less painful than what you were previously experiencing begins to seem bearable.  You follow that lead and keep breathing.  Sometimes it gets so that there is almost a slight diminishing of pain on every other breath.

When you begin to get consistent results from oxygen and begin to know it CAN take care of each hit, that makes the first five minutes a little more bearable -- there will be a short duration to withstand.  Always a light at the end of the tunnel.



AussieBrian wrote on Oct 19^th, 2012 at 11:17pm:

Fantastic that you already have oxygen but there's a couple of tricks to get full value from it. Top left of your screen is a button "oxygen info" which will help a lot and then just ask questions. That's why we're here. Many people get good results by chugging a can of Red Bull at the first sign of a hit. Sounds strange, I know, but it's to do with the caffiene/taurine mix.

A couple of bingos here.  If you chug a power drink first, it will kick in about the same time the oxygen is, giving the hit a real good kick in the butt out the door.  Suddenly it's gone.

Equipment and technique is very important, oxygen's effectiveness can be dependent upon them.


Preventive methods or meds is the way to stop the trains from running and keep him on track.  This is real good to inquire about and pursue.

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

Before we know that everything has failed, please give us a history of meds used: name; dose, duration of use. Second, are you working with a doc who has experience with headache? (Major problem is a doc who lacks experience and training in treating complex headache disorders.s)

Thank you for your replies,  To reply to Kevin, I know what you mean about the oxygen.  It's slow, it doesn't always work, but it does help.  In reading about caffeine and energy drinks, my husband actually tried the caffeine last night.  He took 3 tylenol with codeine when an attack woke him up and chugged a strong cup of coffee with it and it seemed to help keep it from getting to the unbearable stage.  The only thing was that he could sleep afterwards and was wide awake.  Still, as he called it, "one small victory" as he wasn't crying in pain.  Thanks for the tips!

Bob, we live in Ontario, Canada.  As for history of meds, etc. that will be hard.  As they started in 2006, he lived through the first series of attacks with over the counter meds (Advil).  This was the time we were just discovering what this was.  He didn't see a doctor because we aren't the type to run to doctors for every little thing, and by the time it got bad enough to go, the attacks had disappeared (about a month).  Two years ago was the worst, and by then we had done quite a bit of research.  It was unbearble so we went to the emergency clinic.  The doctor gave him 3 different prescriptions.  One of them was morphine but I can't remember the names of the other two.  My husband did not like how the morphine made him feel and the other two didn't work at all (I can't remember the names or doses).  Oxygen kept coming up in the research and so we went back to the clinic and specifically asked for that.  The doctor was skeptical and obviously didn't know much about CH, but gave it to us.  I can't believe he didn't want to, since he was so quick to give drugs before.  Oxygen is so much safer than potent drugs!  My husband had the oxygen for about 6 weeks, and went off work for about a month because the attacks were so bad and unpredictable. 

I read something about finding a good neurologist.  Good doctors are not easy to come by here and it seems you almost have to rely on your own researching skills to figure out what you need.  The plan right now is to go back to the clinic and ask for the oxygen.  Right now the attack phase is in its early stages and they are not coming hard and often yet, but my husband says that's how it works at first and he knows what's coming.  No hunting, no work, no leaving the house for the next little while.... :(

This D3, calcium, magnesium cocktail looks interesting and I want to research more about it.  Is this something that will take weeks before you see any results of it works, or will it make a difference right away?  Honestly, my fear as a bystander is for him to end up with more problems by trying all these potent drugs, mushrooms, etc...  For me, that's the scariest, but I understand that he may have to try some of these things if nothing else works.  We aren't there yet, but I realize we may face that very soon.

With your health care system I can't imagine why it would difficult to find a specialist in headache (will likely be a sub-set of neurologists). But do so!

It's not wise, and can be seriously bad, to try and diagnose and treat yourself. There are a number of serious disorders which mimic Cluster, but which are not headache disorders. Need a good diagnostic work-up before you know what you are dealing with and, as you have discovered, the ER service at the hospital is usually the weakist link in knowledge/treatment of complex headache disorders--most especially if Cluster.

Narcotics are evidence of docs who didn't diagnose properly. Pain meds of all kinds are ineffective and, used to excess, will lead to a new set of problems.

ASSUMING the issue is Cluster, print out the PDF file, below. This will give an overall picture of the best meds for Cluster. Any doc you see should be working from some combination of these meds.
======================

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]

---

Sorry, I should have mentioned that the ER doc did refer my husband to a neurologist who did a quick workup and did diagnose him with Cluster headaches.  Finding specialist is not difficult, finding a good one can be.  Wait times are phenomenal around her as well.  The neurologist he saw basically gave him a quick workup, gave him some prescriptions and did not offer follow up.  It's frustrating when you deal with a doctor that doesn't work with you, look for solutions, ask alot of questions to try to understand what you are going through.  It was a couple of years ago, but I clearly remember that seeing the neurologist did not feel like we were getting any additional support with this, hence our independent research.  I suppose we can ask to see him again for this new episode, but yes, other serious issues have been ruled out and it is definitely cluster headaches. 

Your story is all too common with Cluster folks: either poor docs or specialists not available.

Nulmber of our members (including me): ID any doc who you like and who is open to receiving medical information about Clusters. We have had success educating such docs, providing them with MEDICAL material about how to treat us. My doc came to trust me so that I could get anything I asked for, as long as backed up by supportive medical material. Had a fine 25-yr run with him.

If you want to try this approach, get back and we can supply material, some via this site, some books which you can buy. In a large city, local medical centers/large hospitals, will have medical libraries where you can copy the journals, etc. which they have.

Cluster Headaches are such a rare illness that most Doctors know little about them. I suspect his Doctor did not prescribe proper Oxygen equipment. A NON-Rebreather mask with a bag on it and no open holes on the sides. At least 15LPM on the regulator. No nasal canula's or concentrators.

Please ask your Husband to read the link below. Basic info for anyone using O2 for CH.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

O2 must be started as soon as the pain starts. The longer we wait, the less likely we will stop the attack. Minutes & seconds count. Hyperventilating the O2 is best.

Don

No, you are right, he did not have the non-rebreather mask, bag, no holes, etc...just a small plastic mask that goes over the nose and mouth.  I will pass on the info.  Thank you!

Unfortunatly that type mask has little chance of aborting an attack it's a rebreather, we need the non-rebreather with a bag so we can get enough O2 to abort. Get with the Doctor and O2 supplier to get a  correct one.

In the meantime he can make a workable setup from a trash bag. Make a hole in the bag and tape the O2 hose so it can fill the bag. Breathe O2 from the bag. Large bags are OK.

The best mask for CH is available here on the site at the link below.
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Don

Thanks for the info.  After tons of research and discussion, we are going to look into one of the alternative treatments and hope that the positive info we are coming across works for him.  Let you know what happens...

The alternatives work for many but not me. They have a tendancy to make it worse before it gets better. O2 is handy for these times.

If your husband has a beard the O2pti mask comes with a mouthpiece. These masks are made only for CH.

Tell your husband I feel for him, I've been where he is and will be again. When I am suffering is the worst time for me to make decisions that need to be made.

Don