I just got over one of the worst I have ever had. I have had bad ones before but Gawd that was a new high for me. It pushed my pain scale to a new limit. Monst of mine I would put at around a 7 or 8 but compared to this one it bumps them down to a 5. I don't think I could handle many of those, I always thought i was stronge, but I can not think of anything in my life that compared to that. I don't even know why I am shearing this other than i just needed to put it out there to somebody/anybody who understands because no one around me does. Thanks for allowing me to vent a little.

Understand we do.
We are right here with you.

:-*

Yes every now and then the beast appears to get masochistic and zaps you a good one. I was episodic and I would get 3-4 really bad ones right before the cycle stopped and then would start tapering down.

But we DO know what that pain you just endured feels like. Vent anytime.

AnnaH wrote on Dec 11^th, 2008 at 11:09pm:

I have had bad ones before but Gawd that was a new high for me.

If it's any consolation, Anna, I get one of those to tell me another cycle is ending and it's only strawberries and roses ahead.

Hoping it's the same for you.

I usually get 3 or 4 that are 8's or 9's in the middle of my cycle--but I've only gotten a few in my life that are above that.  

They're a whole different animal.

No more of those, okay Anna?

Best wishes,

George

Welcome to you Anna.  You can vent to us any ol time you want and please  KNOW your concerns will be acknowledged.

  Tell us more about yourself.  Nothing personal if you don't wish to share it's perfectly o.k.  We, who've been here a very long time yrmd  to think of each other as a 2nd. family.   We'd love to welcome you.
 
Linda    [smiley=hug.gif]

Yes, those are the ones that leave me shaking and shivering for a couple of hours. Wondering how I just survived that. From the very first time, we are a changed being, not only for the worst, but awakened to what it is to be pain free.

Fortunately most of us learn to control the beast well enough to limit these, worst of attacks, to an absolute minimum.

Letting it out can really help so don't hesitate. If we can help in any way, we'll try.

We do feel your pain, Don

Like Jimi and Brian already stated, that the really really REALLY nasty ones come at the very end of the cycle, that goes for me too.
They are not only the worst, the longest, they also come in quick succession. In general I can say (always in hindsight) it is my last week orso.

Anna, to me they are also the ones that will not be killed easily. They tend to be so strong even the Imitrex injectable won't touch it, or at best, lessen the pain without sending it into retreat.

Positive thing is, now, out of cycle, I cannot even begin to imagine how they felt. I have a selective memory for the hurt I guess.

PF days very soon to you.

Pascal.

AnnaH wrote on Dec 11^th, 2008 at 11:09pm:

I just got over one of the worst I have ever had. I have had bad ones before but Gawd that was a new high for me. It pushed my pain scale to a new limit.

I hear you, Anna!  My 5 may be others' 3 or 8, and if I hadn't experienced worse ones in the past, the current ones that I rate 4 could have been considered a 9.  We can only apply the scale to ourselves, based on the worst one.  It doesn't matter though......you hurt badly, and everybody wishes you nothing but a relief.

Unlike the guys above, mine fades away toward the end of the cycle, both frequency and intensity.  Slow & natural death.  Hope you don't have much longer to go...........but as Linda said, vent away all you want on the board or privately with somebody you may like.  We ALL understand your suffering.  Anything to boost your strength is a good thing!  Hang in there!

Sorry for the bad hit, but now you're on the other side!  Glad you've made it.

Ray

Sorry for your pain , Anna.   I also hope this mean remission is on the horizon for you!  Welcome to the boards.  

Please stick around and let us know if we can answer any questions you may have.

Jeannie

Mrs T,

I have to mention that the week before I go into remission completely, my headaches die down to shadows. I was referring to the week(s) when I'm in high cycle. So I understand where you're coming from.
My last cycle however I had a very long period of aftershadowing, don't know why exactly, as it was unusual to me.

I find the Kipscale a very handy tool in describing other clusterheads the pain of a hit.
Does it ever make you wonder if what you would have described in the past as a 10, would be a 9 in the future? This is a thing that scares me.
Or would it be the selective forgetfullness while out of cycle which amazes you at how much it hurts when it does come? Am still puzzled about this.

Everyone's thoughts would be appreciated.

Pascal.









Only after posting this I realized how off topic I've become in the last paragraph. I'm sorry Anna, as it was not my intention to hijack your thread.  :-?

Lordy look at all those typos, you all must think I'm an uneducated idiot. I must say that was an exhausting and overwhelming experience that I ope and pray to never repeat. It took so much out of me, its hard to put into words because I don't think words have been invented to describe that kind of pain. Mr Webster just doesn't know about it I guess. Nothing that I did helped, it hasted longer and was more intense than any previous attack, ever. Mine normally last around 45 minutes to an hour unaided. This one lasted around three hours, there was nothing in the world but the pain. If I could have died to escape it I would have, and happily so. I don't ever want to feel like that again.
I should be halfway through this cycle, I have had several years of experience to compare to, but there were no comparing, this was an entirely new beast. If it is a sign that this cycle is winding down like you all stated, that's good. I really try not to dwell on the attacks, I take it and go on with my life, but my mind keeps returning to last night. I was screaming for help, my husband was freaking out and my babies were scared. The maxalt didn't touch it so I used the oxygen from my husbands torches, it didn't help, hot towels didn't help, cold towels didn't help.The understanding that you all know what I am talking about does help. Thank you.

Anna, we know, we know, and we KNOW.  Don't feel like an idiot......if no one else in the world, WE KNOW.

This beast does change its shape, and it still amazes me to no end.  Mine is also about 60 minutes untreated, and for the first time I experienced it for hours in this cycle after I threw up Imitrex.  I expected it to go away after 60 minutes...........no idea why it lasted so long like a migraine.

When I was younger (maybe early 30's), I wished death in the middle of the worst attack.  No human deserves this degree of pain.  Not that we don't love life, family members or friends, but when there's no way out, we just can't think straight.  Its psychological effect is incredible, and like you, I was in constant fear of the next attack, afraid of going to sleep, cooking, sunlight, bathing, and just about everything in "normal" life.  This beast drains the heck out of us.  I'm having a mild cycle, and now the pain is such a non-event and easy to kill, but the normal 10-12 week cycle is dragging on into the 6th month, and I'm mentally so beat.  Besides interrupted sleep, I'm not even experiencing unbearable pain like yours, but I'm soooo beat!  

It is very important that you keep the mental strength.  We can't prescribe a magic pill to make your beast go away, but do know we share the same pain, frustration, fear, paranoia, and depression.  We have no choice but to keep at it, so let's keep our chins up, okay?  Little things like another sufferer just checking on me, handholding while trying out something new, being able to share insignificant progress, or just knowing that somebody who KNOWS reads my emails and takes me seriously, etc., have given me strength to go on and brought tears to my eyes accepting how weak and needy I was.  So again, vent away here or privately.

Perhaps you can tell us what regimen you've been on to compare notes with others and brainstorm what might work better?

Welcome Anna!

I've had several of those... During them, I've begged my mother to let me kill myself, screamed bloody murder, and completely went nuts.

In one case, we were on our way home from evacuating from Gustav, which didn't even hit. We had to stop at an ER because I was in so much pain.

I wound up literally blocking the memory of it out. I've got PTSD, and for once, it was a blessing to me. I apparantly scared that ER so badly that they kept calling our house until they got ahold of someone. I've NEVER had an ER do that. Mom said everyone was pretty much horrified. She'd never saw me lose it like that. The next day, I remembered us stopping to go there... but after we got there, until we went to a conveniece store was completely blank.

I'm just glad my PTSD was nice to me and decided not to replay it constantly. I think it was just my mind couldn't take the memory of it.

I've found with the beast, my pain scale morphs. It's gone from me thinking something was a 9, to me realizing that was only a 6 or so. It's like the beast continues to push it's limits, again and again...

Hi Anna,
    The big hit is a demoralizer, but the good news is that it passes on and it can't kill ya.

         Lordy look at all those typos
    If I had a nickel for every misspelled word on this board, (I think I have most of em) I wouldn't have to play the lottery.

    You hang in there. Better days are coming.

                                     PFD's
                                     JPC

currently going through a whopper myself . im in limbo waiting for the next one to hit . its been almost 4 hours so I know it wont be long. Just hope it doesn't last all night.

I also have a question . Is it really safe to do the self injection with the imitrex to "save " doses. Im willing to try but wanted to make sure.

you know whats great about oxygen.... A ch never has to get that high on the pain scal again.  Do you have o2?  Once I started o2, I never had to deal with a full blown attack.  

Anna, you have brought to the surface something that I have been talking about for years!  When I first got this demon in my head, I thought most of my hits were 10's ... Now, 29 years later, I realize how "mild" those hits were!  In my 29 years, I think I have only had about 7 REAL 10's!  Once you have a true 10, you realize it is nothing like any hit you have had before!

You are doing the right thing.  Adjust your scale to the new awareness!  I hope that was the only 10 you will ever have!

Tell us how you use the oxygen.  Maybe we can give you some hints on how to make it work better for you.

Good luck!

Chuck

I used my husbands oxygen for his torches with no mask or anything. I just opened it up and put my face right up to the tank. It didn't kill it but the coolness of it going in my nose seemed to help somewhat. This is after about an hour into the attack. I was getting desperate and grasping at straws. He is going to Orclins today to get the parts to make a regulator and also talk to one of his friends that is an EMT to get me a mask. I have tried it before at the ER but never at the beginning of an attack so it'll be interesting to see if it works. I think perhaps I was to far along into the attack for it to be effective. The medical oxygen provider here is Lincare and my insurance will pay for it but get this, I have to pay my full $1500.00 deductible before they will.

I have been having these for about 10 to 12 years, I also get menstrual migraines and for the longest time my Dr thought they were one and the same. Why is it so hard to get a Dr to believe what you are telling him? They started out milder than they are now but it seems that the older I get the more powerful they become. These things suck.

Honey, the O2 is the cheapest way to go -  Be sure to get the proper mask (NON REBREATHER). (Go to the medications board here and read Chuck's sticky post at the top - it "splains everything where even "I" can understand it).

You may also want to stock up on some energy drinks (Red Bull or one that has at least 1000mg of taurine in it). At the first sign of a hit - chug a can of one of those babies... Then hit the O2...

Those of us who swear by O2 will tell you how well it does work. I've been able to cut out my aborts totally (except for an occasional Red Bull). High Flow Rate and the right mask - I'm a believer...

Let us know how you're doing and how the O2 is working. As my little grandson says, "Breathe Breathe Breathe!"

Hugs BD

AnnaH wrote on Dec 13^th, 2008 at 12:02pm:

I used my husbands oxygen for his torches with no mask or anything. I just opened it up and put my face right up to the tank. It didn't kill it but the coolness of it going in my nose seemed to help somewhat.

Ok, there is why it really didn't do anything.  You just had it blowing at your face, without any mask.  That won't work.  

In order for this to work, you have to breath 100% oxygen, no other outside air.  That is why the non-rebreather mask works so well.  It does not allow anything but oxygen into your lungs.

If you ever get stuck like this again, screw trying to look "lady-like" and all that shit, just slap your mouth right over the hose, and suck away!  Just inhale through your mouth (with the hose in your mouth) and exhale through either your nose, or take the hose out and exhale through your mouth.  Do not take ANY breaths of room air, JUST the oxygen!

You mentioned that the coolness on your nose seemed to help.  There is a process where you have the oxygen flowing into your mouth, and then you open your throat so that the oxygen flows right out of your nose.  It takes a moment or two to get the flow, and the back of your mouth/throat right, but once you do, you will feel it going right in your mouth and directly out your nose.  This causes a cooling effect, that helps to constrict the vessels and abort the hit.

But, get the right mask, and it will be much easier.

Good luck!

Chuck

Hello Anna!!!!

I completely understand the type of pain you experienced.  Before I was properly diagnosed with CH, I begged anyone in my house to get a gun and shoot me in the head!!!!  My grandfather's old gun used to be in in the basement, under lock and key.  Now, I don't know where it is kept or even if it's in the house anymore!!!!  

Once I found a doc who treats only people with headache conditions, I've learned how to deal with CH better.  Last year I took my preventative (Verap) and used O2 when necessary.  My cycle was only four weeks, maybe a little less.  This year, however, I took steriods and mythergine in addition to verap and O2.  I'm in my 6th week and I think they are subsiding.  Oh yea, I've also started on Kudzu and Magnesium supplements as well as my usual daily vitamin.  I ususal get hit with about 2 or 3 bad ones for a couple of days and then they are gone.  This year, it's been more like they have been tappering off.  

I have shadowing and the "CH knot" in my neck today.  Small pain in the eye.  I think it's weather related due to the fact that yesterday was almost 50 degrees outside and when I woke up it was 7 degrees out!!!  

The point is We know what you are going through, and yes, the pain scale you are used to might need to be altered now because of the hard hit.  But think positively, this could mean your cycle is almost done.

DON'T LET THE F*****G BEAST GET THE BEST OF YOU!!!

Laura