I've had episodic CH for about 15 years now.  I was in remission for the last 3 years or so then WHAM!!!, the beast is back!

This bout started about 2 months ago and is among the most severe I've experienced.  Another thing that has become more severe is the amount of nose bleed before and during an attack.  Every morning I wake up with my nose completely stopped up due to the bloody scabs that formed overnight.

Does anyone else experience nose bleeds with attacks?

Right now I am going round with the VA to get treatment.  I am on the "emergency appointment needed" list to see a neurologist--my appointment is for FEBRUARY 2011!!!

Not only that, but they will only provide 6 Imitrex sprays per month--that's three days worth normally, six days at best.

Yesterday I drove 2-1/2 hours to visit the VA Medical Center and was rewarded with meds--FOR TENSION HEADACHES!!!  I tried to explain the difference between vasal and tension headaches to the know-it-all doc (been there before) to no avail.

Right now I am recovering from my first attack of the day and waiting for the next.  Got one more Imitrex so I'll hoard it for "the big one."

Dan

Get the 02 going.
Welding tank of 02
Mask off this site
Regulator off E-Bay

Read the 0xygen tab at the left.
Energy drink at first sigh of a hit.
Melatonin before bed for the night hits.

Read all you can here.

Hi Dan,  After 8 years in remission, I too got hit with the beast. Never thought that I'd see him again. As far as the nose bleeds, I have had a few but I do wake up every morning with my right side sinus blocked plus several times a day I get a burning that lasts for 20-30 seconds. Same feeling as if you were going to sneeze...but I don't. BTW, I'm in my third month of this cycle. At first onset I immediately called my primary doc as I knew getting to my neurologist would take a while (Feb 2011) appt). He started me on Prednisone which helped me years ago. I just finished my 3rd round of the Prednisone. I think it helped to reduce the number of big hits. Get to a primary doc armed with info so you can at least try some meds.  Best of luck.

Gidget

Hey Dan,

I don't use the imitrex injections myself so don't really know how they work but wonder, have you found the thread on extending them??  I think you will find the tab/link on the left of the screen. 

Actually just had a look around, here is the link START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Hope it helps,

Kate

Marc and Mike are spot on- welding O2 worked great for my husband. $100 for the mask and regulator and $13-14 per refill on the tank. Considering the imitrex nasal spray was $180 a pop when we didn't have insurance "dirt cheap" just about sums it up! The large M size tank lasted Lucas (my husband, the sufferer)through 10-20 hits. That there is a damn bargin! Also, we just bought a welding regulator from the place where we got the welding O2. It was $75, and you can get them cheaper online- but I wasn't about to wait on shipping. We also found a cheap non-rebreathing mask locally- it was $2, till we got the Optimask from this site. I got Lucas all set up in 4 hours- from my original, desperate post for help while Lucas was getting a headache, to Marc and eveyones' replies and help, to getting the supplies and bolting the tank to the wall in our bedroom. 4 hours. He was ready to go before he had another headache. Try it, you will not be sorry.

Also, I just said my Dad sent me to get a new regulator (my Mom had given me her 02 tank from her welding set up, but it woulda worked the same way if I'd needed to get a tank rental- which I was told would be $50) and a hose adapter (so the regulator would fit a push on hose like the mask has, not the screw on type for the welding hose) I just played dumb- "I don't know what it's for- Dad just told me to come get this stuff" Easy peezy. Some say a friend is teaching them to weld- whatever you're comfortable with.

And Melatonin- 9mg before bed (though some do 12, 15, or more) and that blocked most of his night hits. While we did stockpile his Imitrex nasal spray (luckily we DO have insurance now) I'd say the more successful things were the Melatonin and welding O2- the things we did not have to depend on a doctor for!

Thanks for all the replies!

I had wondered about melatonin since it is produced by exposure to sunlight and the beast usually comes to visit when the days get shorter.  I'll definitely give that a try.

I'll also give the welding O2 a try as well.

My biggest problem right now is that I have no income, no insurance and have to rely on the VA for medical care.  They are hard and fast in their 6-per-month rule for Imitrex but I do have a total of 12 refills.  Hopefully the cycle will break soon and I can save up my refills in advance for the next cycle.

Yesterday was PF for the first time in about a month.  I woke up and wasn't congested and no nosebleeds all day!  So far today is going well (if I don't jinx myself) as I woke up without congestion and haven't had any nosebleed or pain yet.  Got my fingers crossed!

Dan Epps wrote on Dec 13^th, 2010 at 10:53am:

Hopefully the cycle will break soon and I can save up my refills in advance for the next cycle.

And hopefully you've checked out that imitrex link that Kate supplied and will be getting 3 aborts from just one injector's worth of imitrex. That helps a LOT I can tell ya!  :o

bejeeber wrote on Dec 13^th, 2010 at 8:01pm:

Dan Epps wrote on Dec 13th, 2010 at 10:53am: Hopefully the cycle will break soon and I can save up my refills in advance for the next cycle. And hopefully you've checked out that imitrex link that Kate supplied and will be getting 3 aborts from just one injector's worth of imitrex. That helps a LOT I can tell ya!  :o

Sorta tough to split the nasal sprays and the VA won't give injectables or sub-q.  ;D

I had two PF days followed by a three (minor) hit day.  Yesterday was PF and so far today is as well.  The minor hits were so minor that an ice pack and 5-10 minutes took care of them! :) :) :)

This is generally how my bouts start and end so I am hopeful that the end is indeed near.  I have had "teaser" PF days before though so I'm not jumping with joy just yet.

Started on 10mg melatonin before bed a couple of days ago.  I don't know whether it has had any effect other than making me feel a bit "loopy."

Sorry I haven't been around for a while.  Been PF since Christmas-Eve!!!

I finally got to see the neuro at the VA and, gasp, he actually understood clusterspeak!!!  After the obligatory 20 questions he asked "Has anyone ever prescribed 100% oxygen for you?"  My reply:  I've been asking for it for YEARS now and nobody seems to understand the importance of it.

When he noted my last prescription of butalbital and asked "What idiot prescribed THAT?",  I knew I had a doc that understood us with that question.  Ya gotta love a doc that says exactly what's on his mind.

I have an appointment with the Home Oxygen Clinic in mid-April (go figger, social medicine takes FOREVER to get anything done).  That will (hopefully) send me home with O2, a mask, etc. to abort the next cycle (that I hope never comes).

Much love and prayers for everyone out there.  May tomorrow be pain-free for you.

Dan

Great news on being pain free for so long and in finding a great neuro too.

I hope your oxygen kit gets covered in layers and layers of dust but you'll know it's there in case.

Dan Epps wrote on Dec 13^th, 2010 at 10:53am:

...I had wondered about melatonin since it is produced by exposure to sunlight and the beast usually comes to visit when the days get shorter.

Sorry to come off as a know it all, but Melanin is produced by exposure to sunlight and is the substance that gives our skin, hair and eyes their color.

Melatonin is produced by the Pineal Gland deep in the brain and helps us get drowsy as  night approaches. It's the hormone taken as a supplement that helps some of us with Clusters get relief (I don't seem to be one of those lucky ones... :-[)

Just felt the need to set the Anatomy & Physiology record straight. :)
-Gary