I have spent the better part of the last week in the hospital getting lumbar punctures, cts and mri's. They started giving me daloudid intraveneously just to calm me down my headaches were so severe. At first my headache was just a fever, then it was meningitis then during an especially bad episode, the neurologist hooked me up to oxygen and that stopped my headache....now clusters? I have b roken bones, been in car accidents and NEVER felt pain like what i have had this past week. Over the past two days, I sneeze..bam blinding headache...left side of face tingles, nose drips..bam blinding headache. I am more miserable then any single point in my life. Any help would be appreciated.

Get a real diagnosis.

           Potter

The physycian said ch the neurologist at the hospital said ch..  So please tell me what you would deem a real diagnosis. Thank you

Not all of us here are as rude as Potter.

What do you do now?  

(1) Since your headaches have just begun, you should definitely have a doctor prescribe you a preventative med.  Mine prescribed me Verapamil, but by the time she got to a diagnosis and a prescription, my CHs were on their way out, and I didn't want to suffer the side-effects of Verapamil (dizziness, constipation.)  From what I hear, for a lot of people, Verapamil will either completely stop the headaches, or reduce their frequency to one every few days.  Mine area already down to one every few days, so I haven't started on the Verapamil treatment yet.  Next time I will get on it right away.

(2) Have your doc prescribe you with an "abortive" med.  These are taken after the onset of the attack.  Some people on this board have a personal oxygen tank and mask by their bedside or at work.  Oxygen worked for you in the hospital, so you should definitely get some for home use.  

My doc didn't give me an O2 prescription.  Instead she said that O2 "doesn't work" (I think she needs to spend more time on this message board) and prescribed Maxalt for me instead.  Maxalt works for me only on an empty stomach, and even then, it sometimes takes 60 minutes to work.  60 minutes is still better than 3 hours of excruciating pain!  

Next time, I'll insist on an O2 prescription along with Maxalt.

My episode of clusters are coming to a close, after 28 days since my first attack.  They were 2 or 3 times a day, and this week, they only happen once every 2 days.  Good luck with yours!  Just remember that you're not alone, and there are some treatments out there that will help.  

They prescribed me topamax wed before I left hospital. Yesterday I had an attack and my drs office is only a few miles from work. My boss ran me there and he hooked me up to o2 and it seemed to stop the attack. I'm just nervous and confused about what's goin on.

Noah, this is a scary time for you, we all understand. But finally having been diagnosed with CH is very important, coz now you and the doc will figure out a treatment that will work for you.
Oxygen really is an improvement on both painmanagement and quality of life for most clusterheads.
Come here often, talk to people here and read read read. Tons of info and reallife experience from fellow sufferers.

Regards, Pascal.

Nowhere in any of your four posts do you say,  that a neuro. diagnosed the problem as clusters.

          Potter

Sorry if my posts have offended you by not being descript enough. I will try to correct my vernacular in the future. Thank you to the others for being so nice and helpful

I know this can be confusing it still is for me at times and i am still chasing that elusive ch specialist.
my doctor now has given me oxygen at home for several years and have had good success 15 lpm with a non-rebreather for about 20 min is what i use. and to that an energy drink (use to be a quad espresso) till i got the energy drink tip here.
my last weapon during an attack is either dissovling zomig 10 mg or inj imitrex.
medication wise as a prevenative I am on topamax as well with decent results but watch out for weight loss. (too much too fast), but i am also on gabapentin.
non of this is a substitution for GOOD neuro care or a doctor that listens without judgment at least. rare thing for alot of us.

justnoah wrote on Aug 1^st, 2008 at 8:39pm:

Sorry if my posts have offended you by not being descript enough. I will try to correct my vernacular in the future. Thank you to the others for being so nice and helpful

    Ya don't offend me in the least.  Get some oxygen.

       Potter

welcome, to start, I have NEVER seen or heard of anyone here being rude,, brutally honest??? definately. Having said that, let me say that you have come to the right place. My advice,,,, read , read, and read some more. this site is a cornucopia (cool word eh?) of info concernig CH. The more you read, the more you learn. The more you learn, the better able you are to fight this condition. Just coming to this site has already started you on the road to better days!!!!  Good luck.   Tuck

Welcome to the board, sounds like oxygen worked well for you at the hospital. One of the more critical aspects of using oxyen is the earlier you start it, the faster and more effectively it aborts the headache. That's why it's so critical to get the prescription for it. Then you always have that E-tank, smiling at you from accross the room. As soon as that tingling, dull aching feeling starts, you fire off the 02 and blast the beast back to hell. Believe me, it's a great feeling to know you're not helplessly waiting to get hit again and again!

Now getting the rpescription can sometimes be an uphill battle. They'd rather stuff you full of vicodain, percocets, codeine, none of which work at all for CH, instead of giving you 02. It's worth the fight believe me. Tuck put it best, knowledge is everything, and you've found the end of the rainbow for CH knowledge, welcome brudder!

Guiseppi

Tuck - for a first time poster 'brutally honest' replies seem rude - I think there are other ways we can welcome someone- in the nice ways that you always do  :)  I get what you are saying but I hate to see a newbie who is having trouble have to waste any more of his energy trying to figure out some hidden rules to posting on this site. We can be direct and to the point but also show empathy-

just my two cents

Kelly

you are correct mezza, I agree with you 100%,  I just thought the sooner that "justnoah" learned that some folks here get right to the point, skipping all the "sugary baby talk" the sooner he would fit in. I learned it on my first day here. Just ask Jonny.   lol.  I have been happy, and in a warm fuzzy place ever since. I am sure justnoah will soon be too.    Tuck

         Yep just ask Artonio how mean I am.  I'm bettin we never see Justnoah again.

          Potter

$5 says he'll be back.  

I don't think you scared him off- I think you may have pissed him off but he'll be back...  I'll bet you $5.50

I would hate to win that bet.  I don't want to scare anyone off.  I want the  newbies to get a real diagnosis and get some oxygen.

          Potter

Thats really good know potter-  I love to see the supportive feedback! :)

mezza wrote on Aug 5^th, 2008 at 4:59pm:

Thats really good know potter-  I love to see the supportive feedback! :)

     Someone owes me money.

              Potter

Please do not give yourself any credit where it is not due. For one thing, your "enlightening" banter is worthless and shows a lack of compassion and basic ability to interact with people. You probably sit at your computer thinking of all sorts of witty things to write instead of actually interacting with people in real life. Well congrats and keep up the good work. Secondly, I was diagnosed with MS shortly therafter and have been a little to busy to respond, you know dealing with clusters and MS and all. So you enjoy your pseudo life, harassing people that simply are looking for information and support. So, I guess you dont win any money now

Hi justnoah,

I'm glad that you came back!  I'm so sorry for your pain and for your added MS diagnosis.  That is really terrible.  Please know that EVERYONE here wants to support, help and encourage you in any way we can.  We are here for each other for all sorts of life's little surprises, good or bad.  

If you were to go back and read many of the posts here, you will see that just about  everyone here advocates a proper Dx and the use of 02.  All of us just have different ways of expressing what's on our minds.  Those who find relief with 02 are eager to pass it along to others.

Please read all that you can about CH but always remember to run EVERYTHING by your Drs.  We wouldn't want to complicate things further for you.

Take care and let us know how we can help you!

Jeannie

Hi Noah.  Welcome to the family.  I'm sorry to hear that you are having to deal with so much.  That dirty little bastard beast is enough to deal with and now you have to deal with MS too.

Like the others have said read, read, and read some more.  There is a treasure trove of information here.

Sending prayers your way.

Jen

Hi Noah,  Sorry to hear about the MS and CH.  Considering the diagnosis have they changed your meds, have they tried any anti-epilectic meds like depokote?    Phil

Just a little sensitive. Freakin lighten up folks. Do lilke Potter said and get some 02.
Check out these common treatments.
all the best
thebb
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Damn Noah, that's a tough one two punch. They've always told me you never get more then you can handle, you've gotta be a tough SOB!

Please continue with the board. As I mentioned earlier, this board is a gold mine of information. Take the good and ignore the rest. There's too much valuable info here to pass on it for ANY reason. Keeping you in our thoughts and prayers.

Guiseppi

Potter wrote on Oct 1^st, 2008 at 1:52am:

mezza wrote on Aug 5th, 2008 at 4:59pm: Thats really good know potter-  I love to see the supportive feedback! :)      Someone owes me money.               Potter

CRAP!!! You got me..... Good thing I read this post-   pm me your address and i'll make good on it.   Unless ...you want to go double or nothing on a new bet? ( not about noah)

kelly

Noah-

Welcome back by the way.  Sorry to hear about your new diagnosis-  but I sure am glad you are seeking support.  We are here to help!   The 'bet ' was not intended to offend.  Sometimes this beast is so nasty , we gotta keep it light.  Sorry if was in poor taste - I started it...

Anyway- hang in there and wishing you painfree time

Kelly