My boyfriend Matt has cluster headaches. We don't know what to do anymore the condition is destroying him. He is in the worst cluster I have ever seen. We were just napping and he woke up with it. He is afraid to go to sleep because of it and had been attempting to stay awake for two days.  This must be hell.... he can't sleep and can't Not sleep. what are we supposed to do? we have no health insurance. Some ignorant doctor he went to for help gave him a script for amitriptaline. This from a doctor who claimed to know about headaches. We  have lost faith in medical doctors. What are we supposed to do?

You might as well use that script for amitriptyline to burn and send up smoke signals.

There are many things available that can help ease the pain of a cycle. Some things work better than others and better for some folks than others. Oxygen is probably the first line of defense. Check out the links to the left if you don't have a tank at home.

There is only one way I know of that can end a cycle early, and that info can be found at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Hang in there. There is more help here than at your BFs last doctors office.

Bobw

Don't let one doc ruin you for the medical field, there are some bone heads to be sure but if you work at it there are some gems out there. Now the grilling starts!!!

Has he been diagnosed with CH by a decent neuro? The correct diagnosis is critical for an effective treatment program. How old is he, what has he used in the past that did/didn't work, how long has he suffered from the headaches? Here's some tricks to get him through for now.

Get some energy drinks from 7-11, Monster, Rock Star, any which contain the combo of caffeine and taurine. Slam one of these down as fast as he can chug it when he feels like he's got one starting. Many can abort a hit or at least reduce the intensity this way. Strong coffee has the same effect but the taurine seems to speed up the affect.

Frozen bags of ice, peas, whatever, on the affected side of the head and neck. It helps reduce the pain. Avoid anything with alcohol, almost a guaranteed trigger for most of us. Go to your local health store and buy some melatonin. It's a cheap over the counter supplement people take to help with jet lag. Take 9-12 mg before bedtime, many can avoid the nite time hits this way. Might take a couple of days to start producing good effects for him.

Do you have access to welding oxygen? Pure oxygen, started at the first sign of a hit, will abort an attack for me in less then 10 minutes, often as quickly as 6 minutes. If you have no medical insurance, oxygen is still a cheap route to go. I was paying $4.50 a month to rent an e-tank, and $11 to fill it. Each tank would run me 6-8 attacks.

Check into the local hospitals and try to find a doctor who will work with you. Have him take the cluster quiz on the left side of this board, and start keeping a headache diary. The diagnosis will be in the details and a correct diagnosis is so very important for an effective treatment plan.

Lastly, thanks for doing the legwork for him. We call you guys our supporters and we'd be lost without you.

Guiseppi

Hi Pam-

Glad you found this site but sorry your BF is in need of it.

Couple of tricks to try:

Have him sleep in an upright position.  Easy chair.  This helps reduce hydrostatic pressure in the head.  It may lessen the severity of the attacks.  NO ALCOHOL!  Almost a universal trigger for an attack.  Very strong coffee or pound down some red bull.  The caffeen is a vaso constrictor and helps many people.  I have found lowering the body temp helps me somewhat abort when I have no meds.  An ice cold shower perhaps.  Melatonin @ 9-12 mg before bed may help reduce the severity of the attacks.  As Pink F said, O2 is readily available and cheap.  You can get it from a welding supply house and you don't need a script.  Just don't tell them it is for medical use.  You will need to rent a regulator with the tank.

Have the flow rate of the O2 so he gets a big lung full ~ 20X a min.  At the very first sign of an attack start the O2.  The longer you wait the less effective it can be.

Above all...read, read, read!

Wishing him well.

-P.

Hi Pamela

You’ve found the right place.

Most of us have been in Matts shoes and can really empathize with his situation. I went to 4 different neurolagist ("Headache speacialist") in 5 years before I was diagnosed properly >:(....Took amitriptaline for 12 mos. until I realized it did nothing
Thanks for supporting Matt It means alot to us to see a good supporter

Just be glad you have found us :)
Check out clusterbusters.com

Superdave

hey pam sorry to hear about matt. just like paul said melatonin is great for some, and just about all of us at 1 point or another has been on a pregnazone taper, so tell the doc what you need, get oxygen as well!!! i can knock out a cluster in less than 5 mins with oxygen. also im a firm beleiver in the clusterbuster method. RC seeds can be bought for less than 20 bucks and it worked for me. feel better soon matt. Coach bill.

thank you everyone for replying i no longer feel so lost! I find the suggestions about RedBull very interesting because the one thing Matt found that was working for a while for him is slamming a similar drink made from yerba mate which has stimulant properties. We actually thought this was a cure but unfortunately it doesn't work as reliably as it once did... I think this is due to him trying to stay awake for too long but I'm not sure. As for oxygen, this too we have tried and had some success at first but then it didn't work all the time. We got the oxygen from his mother who has it for her breathing issues so maybe we didn't administer it correctly?? Again thanks so much for all the advice!!!!!

pamela wrote on Jun 3^rd, 2008 at 8:53pm:

As for oxygen, this too we have tried and had some success at first but then it didn't work all the time. We got the oxygen from his mother who has it for her breathing issues so maybe we didn't administer it correctly??

Hi Pamela,

Most likely she wouldn't have a set up that delivers it at 12-15Lpm through a regulator into a non-rebreather mask you breath from.  Breathing just high flow oxygen only for about eight minutes can abort a cluster headache.  You can get info on this by clicking the link to the left on the tabs that says "oxygen info".  

Hi Pam,

First let me say Thank You for taking such good care of my clusterbrother Matt.  Thank God for supporters like you.  You guys are the rock to which we cling in the storm.

The helpful ingredient in energy drinks is Taurine.  Monster/Rock Star/whatever... It doesn't matter so long as it has 1000mg or Taurine.

Everyone is different but 100% Oxygen @ 15lpm through a non-rebreather mask is the best abortive for me.  I usually back that up with a Rock Star to keep reattacks to a minimum.

Once I found a good Neuro he hooked me up with Verapamil.  This is a cheap blood pressure med that was very effective during my last cycle.  It effectively blocked 90% of the attacks.

There are solutions out there.  You just have to keep looking for your magic bullet.

Seeing as insurance is an issue, you should check out the non-med page on OUCH-US.

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Once you've digested that info go back to the main treatment page and arm yourself with knowledge.  The more you know the better you will be able to fight the battle.

Good luck to you both.  We're here 24/7 to help fill in the blanks.

-Dennis-

pamela wrote on Jun 3^rd, 2008 at 8:53pm:

As for oxygen, this too we have tried and had some success at first but then it didn't work all the time. We got the oxygen from his mother who has it for her breathing issues so maybe we didn't administer it correctly??

That's most likely the case.  I'm guessing that his mother is getting it at 10 lpm or lower, with nasal cannulae.  That just won't work for your BF.  He needs 15 or more lpm with a NON-rebreather mask.  

Not easy, I know, but have him try not to get so upset when he gets hit--and take a deep breath yourself.  CH won't kill him or do him permanent harm.  

Many of us have gotten through a cycle with ineffective treatment or no treatment at all.  It's pretty hard, but it can be done.  CH has been around for a very long time, and people survived it, before it ever had a name, with nothing at all to stop it.  I often think about those past brothers and sisters, and how fortunate we are beside them.  While there is still no cure, we at least have some more-or-less effective means to deal with it.

As a practical matter, there are a few things you can do right now.  I second the advice about energy drinks containing taurine and caffeine, and the advice about ice or frozen vegetables placed on the back of the neck and on the effected areas.

I know you don't have insurance, but perhaps a doctor's visit (to another doctor) might get him a better treatment regimen.  It's certainly worth a try.

Finally, as an acute measure--do you live anywhere near a firehouse?  We've found that the paramedics are often willing to administer oxygen to abort an individual attack--they just need to know that he needs oxygen at 15 lpm, with a non-rebreather mask, or with a demand regulator.

Finally--hang in there--both of you really can get through this.  But it's important that you have an attitude of winning.  It's the difference between seeing the light at the end of the tunnel, or the headlight of an approaching train.

Clusterheads are the toughest people in the world.  You'll see.

All the best,

George

Hi Pamela and sorry you have to deal with this horror. I know what it's like to fear sleep....we all do. There are some great ideas in the responses here. Sleeping in a recliner would often prevent an attack or two. It never stopped them but slowed them down.

Try this technique that was very successful for me:


                                         Dr. Wright’s Circulatory Technique:

I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. Think of feeling your pulse in your hand. Increased circulation will result in a reddening and warming of the hands. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Try experimenting between attacks. You will find that it gets easier with practice. Every now and then it will work almost immediately. I lived for those moments.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

I used to try to imagine I was pushing blood away from my neck into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.

Charlie      

Wishing you both lots of strength and lots of PF (pain-free) days for Matt,

Sanna

My first post!

I am also without insurance.  I use pure oxygen at a high rate.  Just woke up from a visit by the "Beast”.  I am afraid to try and sleep again.  

It is horrible.

Good luck!

I can only say what others have said. Red Bull at the first sign of a hit. Frozen peas ...  Melatonin at night...

O2 at 15+ liters per minute with a NON-REBREATER mask.

Find a doc (and most of us went thru several before we found ONE) to diagnose properly and one that will work WITH you.

Arm yourself with INFORMATION before you see the doc. YOU are your best advocate.

One thing to remember -- the doc probably doesn't treat that many CHers (most don't) and will probably be trying to treat a "migraine" (totally different ballgame). It's up to YOU to KNOW what you want and need. While we use some of the same meds that migrainers do - our treatments are DIFFERENT! Read read read this site and go armed with KNOWLEDGE about CH. Most of us have had to EDUCATE our docs after we find one who is willing to be educated.

As far as no insurance. A lot of us (myself included) have gone thru these things without insurance. It's not easy, but it can be done.

But you are NOT alone. There's someone here 24/7 and we UNDERSTAND what your BF is going thru cause we're all in the same boat. We UNDERSTAND the pain and I doubt that he's going thru anything that someone here hasn't been thru. We're here to help....

Hugs BD

Search for low/no cost medical care clinics by calling: social worker at your local hospital; local United Way office; Red Cross chapter; or if you are in a larger city, some religious groups run cooperative groups to offer assistance.

IF you can get a doc to give you a sample of this med, give it a try. Has worked very effectively for some of us and--on a per dose basis--is one of the more affordable meds to abort CH.

Headache 2001 Sep;41(8):813-6  

Olanzapine as an Abortive Agent for Cluster Headache.

Rozen TD.

Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. The initial olanzapine dose was 5 mg, and the dose was increased to 10 mg if there was no pain relief. The dosage was decreased to 2.5 mg if the 5-mg dose was effective but caused adverse effects. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and two patients became headache-free after taking the drug. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. It alleviates pain quickly and has a consistent response across multiple treated attacks. It appears to work in both episodic and chronic cluster headache.



--------------------------------------------------------------------------------

Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.

Sorry to hear that you two are going through such a rough time with this right now.  Believe me, it will get a bit easier to deal with as time goes on and you have more of an understanding what's going on and what to do.  

Insurance sucks!  I have it, but they don't cover anything I really need.  Call your hospital/doctors/Department of Human Services, see if there's any kind of programs you can get on or if there's any free clinics in the area.  Here we have county insurance that's like medicaid and there's a free health clinic held at a church every Tuesday that some of the doctors in the town participate in and examine patients for free, give free prescriptions, tests, etc.  Also try calling the pharmacies, many of them will try to work with you.  Walgreens I think it is, has an insurance program where you pay like $20 a year for discounts on prescriptions, Walmart has free prescriptions for high cholesterol medicine, Meijer has free prescriptions for antibiotics, so it's worth a try asking.  Also, my bank offers ScriptPrice or something like that through my checking account for 10% or 20% off prescriptions at participating pharmacies.

For 3 free maxalts, which works really well for me:  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
You'll have to get a prescription from a doctor, but the doctor visit will be less than the price of the 3 pills.  Also on that page, on the left side under special offers, there's assistance programs, you can try the assistance program or the prescription discount program.

For 3 free week supply of topamax:  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
Again, you'll need a prescription for this and again it's cheaper than the doctor visit.

If you can get to a doctor, try asking about midrin too.  It's not as strong as maxalt or imitrex, but when I don't have maxalt, it gets me through.  It's cheap so my insurance will actually pay for it.

Also, no more trying to stay awake for days on end, been there, done that and I was miserable, they just kept coming and coming when I did that.  Try the melatonin before bed.  I found that if I take 9-12 mg I tend to randomly wake myself up every time I start to fall asleep, so I take one or two more and I sleep great now.  If you have a recliner, have him try sleeping in that.  There were times when ever time I hit the bed I'd get a headache so I'd end up passing out in my computer chair.  It's very uncomfortable, but you get sleep.  Can't fight it off if you're too weak from not sleeping.

Stay strong and eventually things will start to look a little brighter.  We're all here to help. :-)

This link may help you find a decent affordable treatment. You can purchase Suminat which is a Sumitriptan Nasal Spray. I have purchased some from here as a back up when my scripts run out.
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