I was here before and now I'm back again.  I waited to come back hoping they would just go away.  But I feel alone and desperate and after waking up with my third one last night for the nth night in a row, I am just so tired that I just can't hold it together any more.  But my outburst of crying may actually be relieving some of the pressure.  Husband does not understand why his wife is awake and crying, and to his dismay, there is nothing he can do to fix it.  Please rest, sleep, peace, certainty, and comfort, come back to me.

Aight, tears have stopped, snot has been wiped up, and only the reminisce of the evil that haunts me remains.  Back to my normal.  Morning coffee, morning news, on about my day, then face the night again when I get there.

Having come here before you know that folks will offer sympathy and compassion, since we all share the same disorder.

However, the central theme of most messages is on how to gain confidence in our ability to cope with our attacks and to not become victims to a chronic problem which we will likely spend years managing.

The cost to the "victim" is a loss of confidence, effective skills, and toughness we need to handle any chronic disorder. Bottom line is: we cannot use the skills and knowledge available to us until we have the self-confidence to use them to our personal benefit.

Please reflect upon this way of learning how to cope:

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

What are you doing in terms of preventative and abortive medical treatments? You don't have to put up with this shit, but it takes some action on your part.

Do you have a preventative strategy? What meds? What dosages? Do you have access to high-flow oxygen (greater than 15 liters per minute) through a non-rebreather mask? Do you have other abortives available to you (i.e., imitrex)?

We can't tell you which paths you should try if we don't know which ones you've been down already.

You're right.  And for the past few weeks I've had the pain without much suffering.  Yes, I experience the anxiety and fearful anticipation, but I have dealt with the pain one headache at a time, and usually through the use of Imatrex.  After seeing the nuero yesterday I found out he is cutting me off and refuses to prescribe more as he thinks I'm over using it.  He gave me oxygen instead.  So in my pain last night I tried the oxygen and after lying there for 20 excruciatingly painful minutes waiting for it to DO SOMETHING, I gave up and gave in and used an Imatrex shot.  I woke up this morning with another one, looked at the stupid oxygen bottle by my bedside, tried to turn it on had the stupid little piece come off and roll under the bed.  I think the bottle was empty anyway, so I reached for the shot and as I injected myself I started crying realizing that not only am I just sick of the pain, but my triptan  supply will only last me another day or two and then what.  And that is what set me off.  Stupid Dr.  Who cares if it could cause a heart attack?!  I’m 26, you really think I’m going to?  You have obviously never woken up being viciously stabbed in your head repeatedly, and you want to take away my one savior, my one outlet, the one thing that brings me comfort knowing it’s by my side???  Stupid evil Dr.  Tomorrow I’ll be rational.  Today I will pout and kick and scream if I want because I’m just so freaking tired.

Brew wrote on Apr 22^nd, 2011 at 11:23am:

What are you doing in terms of preventative and abortive medical treatments? You don't have to put up with this shit, but it takes some action on your part. Do you have a preventative strategy? What meds? What dosages? Do you have access to high-flow oxygen (greater than 15 liters per minute) through a non-rebreather mask? Do you have other abortives available to you (i.e., imitrex)? We can't tell you which paths you should try if we don't know which ones you've been down already.

I have the Imatrex shots for waking up with one and the Imatrex pills for when I can feel one starting to come on.  But I am running out quick.  Got a bunch of bottles of oxygen that goes up to 15, but it's not helping.  It may even be making them worse.  What is a rebreather mask?  They gave me one that just goes over my face and mouth and reeks of new plastic scent.  I'm starting a 12 day dose of steroids as soon as I eat something today.  Daytime headaches are manageable because as soon as I feel the twinge I can take an Imatrex pill and nothing comes of it.  It’s these damn night ones that wake me up already full blown.  My arms have become lumpy little purple pin cushions, but I don’t even care, whatever takes the pain away.

Here's something to consider: Many former imitrex users swear that overuse of imitrex actually extends a cycle and causes rebound headaches. Could be what's happening to you.

You haven't specified how the oxygen was prescribed. There are literally hundreds of ways to use oxygen if you combine all the different flow rates with the different masks, canulae, tank vs. concentrator, etc.

What flow rate are you using? The regulator has a dial on it - what is it set at? And what kind of mask are you using?

Here's the deal - You need to be breathing PURE, 100% O2 at a flow rate of 15 liters per minute or greater. 25 liters per minute would be preferable. And in order to get PURE, 100% O2, you need to be using a non-rebreather mask. One that makes an airtight seal around your face (or use a mouthpiece). You need to be able to literally hyperventilate with it. Otherwise it ain't gonna work.

Go to this link and start reading:

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

Are you starting to see why we need more information from you? We can't help unless we know more specifics.

Here's a link to the mask you should be using. The ones provided by your durable medical goods supplier are shit.

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

Quote:

What is a rebreather mask?

It's exactly what you DON'T want.

You want a NON-REBREATHER mask. See my link above. It enables you to breathe in pure O2 from the tank, instead of mixing it with what you just exhaled.

God bless you!  We all know what you're going through!

Personally, I feel that the fear and anxiety of knowing that, once again, you will wake up in the middle of the night with pain.  CH is almost maliciously evil that way - a malevolent entity that KNOWS when you are most vulnerable and keeps hitting time and time again.  I know it is biological.  I know there is no deeply evil plan.  But it hurts.  And I get so so so tired... 

Hang in there. 
Listen to the good folks on this board.  They are trying to help and know what they're talking about. 

You CAN do this!
And, although the night may seem a thousand years long, know that it too will pass...

Thanks for the O2 info.  It appears that indeed I do have a standard non-rebreather mask however the flap on the holes is missing just as descibed in one of the paragraphs.  I'm going to explore this a bit further and yes, try again.

Thank You

If your mask has a reservoir bag but has holes in the side, chances are you have a partial non-rebreather mask. Tape up those holes! Nothing but pure O2 in, nothing but lung exhaust out! Many here actually lift the mask away from the face slightly to exhale. Keeps the inside of the mask cleaner.

If it has a strap, get rid of it! The only way to create an airtight seal on your face is to hold it firmly in place with your hand. Also, you would never want to fall asleep with the mask on and risk having the tank run out - increases the potential for suffocation, which will really wreck your day.

Even if you do have a mask that can be converted to a non-rebreather, do yourself a favor and spend the $28 on an O₂ptimask. Personally, I use the mouthpiece instead of the mask as my lips make an easy airtight seal around it, and exhaling requires less thought and concentration while getting hit.

I recently ordered the non rebreather mask and I love it!  I totally believe in O2 therapy. It's working to abort them for me. I also believe the meds will cause rebound clusters and I am beginning to think that the preventatives such as verapamil makes them last longer than they would if I don't take anything (longer as in weeks or months). I think diet plays a huge role as well. I've noticed that when I eat too much sugar or anthing with MSG in it, I will get a headache.  And definitely alcohol!  My favorite preventative is Frova! It works for 24 hours. There are only nine in a box though. I will cut them in half sometimes. Be careful about too much though for the same rebound reason.  Have you read about the imitrex tip on this site yet?  You can get extra doses out of one injectable. Good luck. I would suggest you try weaning off to see about rebounds. I know exactly how you feel and what you are going through. I feel like a science experiment every cycle (about every 3 years). Hope to never go chronic which is always my fear. I'm in my 28th year of having them now and this is my 7th week this time around. Hoping they are leaving soon. It's really hard to not let them consume you but try to not let that happen.