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 Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

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

Bobw

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.

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.

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


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".  

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


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

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

Sanna

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

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:  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
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:  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
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.