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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Newbie
        
(Message started by: alfenner on Aug 16^th, 2005, 11:07pm)

Title: Newbie
Post by alfenner on Aug 16^th, 2005, 11:07pm

Hi all! I'm, unfortunately, new to the cluster world. I had my first cluster period in February that lasted about a month, and here I am back again.

I am married with two wonderful preschool age children.

Although I haven't been "officially" diagnosed, I spoke with the neurologist after the last cluster in Feb and he confirmed that this is what it is. I am heading to the dr on Friday to hopefully get some meds or something!

I'm so glad this place exists, most people have no clue what these are all about!

Thanks!
Amy

Title: Re: Newbie
Post by RichardN on Aug 16^th, 2005, 11:28pm

Welcome Amy

Tell us more about yourself and your attacks. How'd you do on the cluster quiz.
You'll want to go to the doc armed with all the info you can glean from this site . . . and there's LOT'S.
I use 02 as abortive and URGE you to get a script for same, no matter what other abortives (triptans) he/she may prescribe. Proper mask (non-rebreather) and regulator (15 lpm) is essential to kill the beast in minutes.
Read up on kudzu and Melatonin (both OTC)
You have much reading to do, and I'm sure E-Double will be along to post some important links for you to copy and take to your doc.
Again, welcome . . . you are not alone.

Be Safe, PFDANs

Richard

Title: Re: Newbie
Post by alfenner on Aug 16^th, 2005, 11:42pm

The quiz was not suprising -- 1-8 were all no's and the rest yes.

I usually have 2 a day, one in late evening (6:30 - 7) and one around 1 - 2am. The one in the night is always worse. They are always on my right side, with sinus drainage, and it gets puffy around that eye. The pain often radiates down my neck and kills my ear.

It seems like O2 works for a lot of you, so I will definately be suggesting that! My Dh is a new cop and will be going to law enforcement training in a few weeks and be gone 14 (yikes) weeks (except weekends) and I am hoping to have some sort of control or at least relief before he leaves. I don't know if I could take care of the kiddos by myself during an attack.

Thanks so much for all the info here, I know I haven't even begun to uncover it all!

Amy

Title: Re: Newbie
Post by Jasmyn on Aug 17^th, 2005, 2:06am

Good luck Amy with the doc and I hope you get abortives and preventatives that will help you through your cycle.

Coping with children and CH is a challenge but lots of us have done it and so can you! So just hang in there girl and remember we are all just your pc away if you need help or support.

Welcome and PFDAN's to you! :)

Title: Re: Newbie
Post by burnt-toast on Aug 17^th, 2005, 9:07am

Welcome Abord

Let's hope the formal diagnosis is something that's a little more cureable. If its not you've certainly come to the right place. Support and information to arm yourself for Doc. visits is readily available here.

Keep and take a headache journal with you/read and select some information to take with you as well. It will help in working with your Doc. and getting a reliable diagnosis the first time out.

Good luck on your journey.

Tom

Title: Re: Newbie
Post by Bob_Johnson on Aug 17^th, 2005, 9:52am

This is an excellent outlining of current treatment thinking. It would be a useful tool to lead your discussion with the doc.

Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. (2002)

http://www.brightok.net/~mnjday/chtherapy.pdf

Title: Re: Newbie
Post by paul_pero on Aug 17^th, 2005, 8:09pm

Hi

Sorry to see you here, but glad you found the best source of info for CHs. Read as much as you can on the site and definatley ~~ask~~ demand Oxygen from your doc.

Paul

Title: Re: Newbie
Post by lionsound on Aug 18^th, 2005, 8:03am

Hi Amy,

Welcome!
I'm a stay at home mom of two (6 &10 yrs old) as well as expecting a third in Dec.
my husband travels with his job. You will be able to take care of the kids during an attack. Some moms here have a special basket of toys or a special movie they let their kids watch when they are getting hit. It might also be helpful to make a list of local people and support people you could call if you need help. It's a good idea to let them know they are on your list and what you might ask them to do...watch the kids, take you to the Dr, hold your hand :)

You may or may not gain control over the CH's, but you can gain confidence in dealing with them and your life! This place is great for support.

PM me anytime if you want to chat :)

Be well and PF,
Rori

edit to add:
Please let us know how your neuro appt goes.

Title: Re: Newbie
Post by sassy_lady on Aug 18^th, 2005, 10:34pm

Hello Amy,
Sorry you are here, But You are at the right place to find info, med. tips, & support, read, read, read, & print to take to your Dr. here is where you will find the most info on CH'S, Nice to meet you!!
Lots of Love & Prayers to You & Yours!!
Jolene
PFDAN TO ALL !!

Title: Re: Newbie
Post by thebbz on Aug 18^th, 2005, 10:48pm

Hello and welcome
Hope the kids can understand, the heck with the rest. I can't imagine how scared they must be. Good luck and the kids will be a blessing as always.
BB ;;D

Title: Re: Newbie
Post by alfenner on Aug 18^th, 2005, 10:51pm

Thanks so much for the wonderful welcome!

I have learned so much from everyone on the boards through their posts. I can't wait to share with my dr all that I've learned.

Hugs,
Amy

Title: Re: Newbie
Post by E-Double on Aug 18^th, 2005, 10:59pm

Hi Amy,

Here are Some tricks that I used to use and sometimes still do, they might hold ya over until you get a solid regiment down:

*Wrapping a bandana tightly around my skull (be careful)
*Filling a sink with scaulding water creating a steam bath and placing my head over it with a towel covering
it.
*Going from Steam to Frigid shower.
*Standing infront of A/C
*Icepacks or frozen veggies on the back of the neck or eye
*Tons of STRONG coffee.

If you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.

With the exception of 8-10 times.....I have slept through the night since August.....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time.

Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...

The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.
I stayed with melatonin and have had decent sleep overall.

It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....

If not some people find Benadryl effective.

As far as meds go....

This is a great resource to know like the back of your hand...print it out and give it to the doc

http://www.brightok.net/~mnjday/chtherapy.pdf

It will present the appropriate treatments that you should seek and your doctor should know!!!

If you want an abortive with the least amount of side-effects O2 should not only be requested but demanded from your doctor!!!

http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm

I have recently been using Zyprexa as an abortive and have found it to work (for me) as fast as Imitrex and without the "hangover"

http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1120904753

Plenty to learn here and wishing you luck on your journey!

Eric