I have been missed diagnosed for months now :'( . I know its awful to almost be happy that others suffer, I'm just glad I'm not alone!!! Thank you all for sharing.... Literally thought I was crazy! The pain, the tears, the millions of meds, The hospital trips, The numerous ct-scans, MRI's, MRA's and even a CTA...For every doctor to tell me,everything is normal? How can you possibly have that much pain and it be normal? I begged ,pleaded for anyone to help me! And yes someone finally did! I can"t know the pain you all suffer, I just know mine. My Nuero tells me it can bring a grown man to his knee's( I'm A Women)...To all of you I wish for pain free days and nights of beautiful sleep...Thank you for making me feel like I'm not alone..
              Much Love
                 Jenny

Hi Jenny, I'm fairly new here as well,not new to CH. This is a great place to learn from others' experience and wisdom, and share your own. Glad to see you here. -Chris

Hi Jenny, and welcome to the family.

You have a lot of great info here for you to take advantage of.  Feel free to print out pertinent info and take it with you to the Dr.  Hopefully you have found a Neuro that is knowledgeable about CH.  Not a lot are, so you will need to do some serious reading and self educating so that you can work WITH your doc.  If you wait for him/her to make you well and PF you are in for a world of hurting, but if you educate yourself and work with him you will find CH to be manageable (for the most part) and you can live your life pretty well.  You just have to learn to cope and NEVER leave home without your abortives.

Definitely read the oxygen info button to the left and don't leave the Dr's office without it or enough information on him to bring him up on charges.  The only difference I would make to the info there is to ask for at least 25lpm rather than 15. It works much faster and better.  He may not be willing to prescribe it that high, but regulators are not all that expensive on EBAY.  Once you have the script and O2 it is no prob at all to use a higher flow regulator.

Finally, ask questions.  Don't be afraid to show ignorance.  I do it all the time.  I might as well, as I can't hide it.  Ignorance is not a problem.  Remaining ignorant is, and it causes great pain.

Jerry

The Dr is right.  CH can bring a grown (although not grown up) man to his knees, but while there it is a good place to talk to God. :)  It does help for those of us who believe.

Thank you Chris!!! I've taken advantage of as much info as I can gather!!! Hope talk again soon!

Callico,
Thank you too for all the info!!!! I'm shocked that so many suffer and this is new for me... as far as oxygen, to be delivered to day! order reads 12 to 25 lpm with a rebreather mask...Here's to hoping for anything to cut down the duration...
    Thank you again
         Jenny

Jenny, you will need a NON rebreathing mask (one with a bag attached) You can pick up an inexpensive one without a prescription at a medical supply store locally (a couple of bucks) and I suggest doing that so you can start with it immediatly, but the Optimask they offer on the site here is even better than that, my husband had increased success by getting it. Best of luck and so glad you're here!

HI Jenny,

Welcome to the family.  This place is the only good thing about CH. 

I'm soooo happy that you will be getting your 02 today.  It has made a world of difference for me.  It has taken much of the fear away. 

You might want to check out the CH.com store.  There is a  mask there for sale that will make the most of your 02.  It is a NON-rebreather.  Untill you are able to get it, or any non-rebreather, be sure to cover the holes in your mask when inhaling.  I used to do it with my fingers then let go of the holes to exhale.   You want to breath only pure oxygen when aborting an attack. 

Pain free wishes to you,

Jeannie

Welcome home Jenny!  I'm so sorry you need to be hear but I'm thrilled you found us.

Quite a few of us have gone years without a proper diagnosis.  It was 12 for me.  Many have gone longer.  That seems to be improving of late.

I see you are already learning what this site has to offer.  Keep reading and keep fighting.

Good luck...

-Dennis-

Welcome Jenny!  It truly is a trail of tears to be misdiagnosed for months on end.  I'll put a positive twist on it and say with all the testing you've had, you can be fairly confident that nothing more "sinister" was discovered.  That's a good thing.

I'm glad your O2 is being delivered today.  I hope you also have an been given prevent meds as well.  Read, read, read all you can.  There are SO many options here for both prevents & aborts (I like to call it a two-fisted fight).  It may take some trial and error to find the right mix that works for you.  But you are definitely headed in the right direction.

If you have a supporter, have them join us as well.  When you're suffering an attack, having a supporter who knows your needs without you even having to speak them can make your episodes a little more bearable.  I've been a supporter for my hubby for 20 yrs. since he was diagnosed.

Glad you're here!   :)

Welcome Jenny.  Yes, the pain brings us all to our knees - supporters and sufferers alike.

Supporters just suffer a different kind of pain, but pain nonetheless.

I'm sorry you have CH but glad you found us.  Read, read read.  Oh, and read!

So glad you found us Jenny, and no apology necessary, most of us felt the same wway when we found this place! "I'm not crazy, other people have this horrific condition!"

I'm not sure if that was a misprint, but you do want  NON RE BREATHER MASK.  The trick to 02 working fast is getting pure 02 to the lungs, no exhaled air, no outside air. That's why nasal canulas and re breather masks don't work as well, if at all!

My aborts run 6-8 minutes, hoping it proves as effective for you. And if you have a supporter, steer them towards the supporter board. It's really helped my wife understand the condition, and what role she can play. (she's stuck with me for 30 years of this crap!!!) Welcome home. [smiley=hug.gif]

Joe

Sorry you had to join us Jenny but glad you found the site.  Lots of support here from sufferers and supporters alike.  Enjoy your PF times and kick some CH beastie arse when necessary!

One thing I would add to the O2 information you've gotten is to get some energy drinks that contain Taurene.  Red Bull is the most well known, but Monster, RipIt and some others work as well.  My preference is 5hr Energy because it is small and I can carry it with me a lot easier (I don't leave home without it), it doesn't taste as bad and there is less to taste, and it doesn't tear up my stomach as badly.  Plus the B vitamins in it help with the mood swings that come with dealing with CH.  I'm a lot easier to get along with when I keep the B vitamins going.  Stress burns them up, and as you are experiencing, CH creates just a bit of stress! ;)

I don't find the energy drinks will kill an attack as well as will O2, but they will knock a high Kip hit down to a bearable level that I can function with.  That is important when out in public or trying to work.  I also like it for the lower level hits to knock them to just background.  Some have found they work very well to keep a HA from returning after O2.  Sometimes if you don't stay on the O2 quite long enough the beast wants to come back and an energy drink will block that. 

Jerry

To all thank you!!!!! And much love for the info!!! Is it bad that I'm afraid to go to bed??? Restful nights all and thank you for just being here!!!
                    Jenny ::)

Sadly, no. Sleep can be scary....REM is our enemy! If you find you get hit by the night terrors, the wake up attacks, look into melatonin. An over the counter med available at health or vitamin stores. Helps avoid the nite hits for many.

Joe

Good to meet you Jenny but I'm sorry that this horror is part of it. We appreciate your story and all know what you're going through. Pay attention to these people. They know what they're doing.

One thing I found is that sleeping in my recliner rather than always flat would sometimes prevent one hit. You might give it a try.

Keep posting and lots of PF days.

Charlie

I have a similar feeling when I'm in my clusters.  Mine hit mostly at night, 30 minutes to an hour after falling asleep.  I do have some during the day, too, when they're not under control, but they are simply child's play compared to the ones at night.  So YES!!  It is not an unusual phenomenon for us to be afraid to sleep.  Be sure to absorb what these people tell you, especially the ones that have been here a while.  Info is power!  I'm actually real curious to see what the maletonin will do for me:)  Wish you and everyone here a pf night!

jenny134 wrote on Nov 5^th, 2010 at 7:17pm:

To all thank you!!!!! And much love for the info!!! Is it bad that I'm afraid to go to bed??? Restful nights all and thank you for just being here!!!                     Jenny ::)

Believe it or not that fear of going to bed goes away after awhile, besides a lack of good rest only increases the beasts strength.  Get as much rest as you can and don't fear going to bed.  I know it's easy for me to say this now, but keep in mind, most of us were afraid to go to bed too at one point or another.  Hang in there!!

>Edited to add<
P.S. Check with your Doc first, but many here use Melatonin or (like me) an allergy pill before bed (such as zyrtec aka cetirizine) to help avoid night time hits.