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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Hello.  My name is Lafinwolff.
        
(Message started by: Lafinwolff on Nov 17^th, 2006, 3:59pm)

Title: Hello. My name is Lafinwolff.
Post by Lafinwolff on Nov 17^th, 2006, 3:59pm

I am new to this site and new to this experience.
On the 25th of October, 2006, I had a headache start. No big deal, I'll take a few Advil and it will go away. That didn't happen. I tried to deal with it the best I could by myself. My partner noticed I was in some destress.
I thought I was going crazy! Kerry (my partner) suggested that I take a couple of Tyenol 3's I had left over from a hand injury. I did; they didn't work.
I kept thinking, "This has got to end! It can't keep going on!" I had a headache (Pain level 5) all of the time. Sometimes (4-5 X's a day) I had episodes (7-9) that lasted for a couple of hours where I thought I was going to die.
Then I had a Monster(10) on Sunday night. I was crying, holding my head, and rocking. All Kerry could do was hold me and give me what comfort she could. She tried everything, back rubs, shoulder rubs, head & neck rubs, hot showers, cold ice packs. Nothing worked.
Somehow I made it through until I got into my family doctor on the 31st of October. He gave me Percocet. I was not able to move, but I still hurt.
He told me that this may be a Cluster headache. Because of my history of head trauma, (I play hockey and I don't skate very well), he wanted to rule out anything else. Then he added Imitrex pills. That seemed to work a couple of times then it stopped.
I went in for 2 MRI's on 08 Nov 06, One with and one without contrast. They bothe came back fine. I was out of work for weeks by now.
Last Monday, 13 Nov 06, I went back in and we started from scratch. We got rid of the Percocet (so I can think and move again) and the Imitrex pills. He gave me a shot of Imitrex to help with the episode. He started me on Predisone, right away. 24 hours later, he wanted me to start taking Ergotam/Caff (Cafergot).
When I started taking these, my heart started racing, I was restless and jittery. I couldn't sleep. They did seem to be working on the pain. The side effects seem to be going away, too.
I was afraid of taking these because I have a severe alergy to molds and I didn't want a reaction.
Today, 17 Nov 06, The meds are not working as well as they were. I've already taken 2 and I still am having pain. I've never had to take 3 to get it to work. It is still with me.
I am so glad I found this website. Now I know I am not crazy and I am not alone!

Title: Re: Hello. My name is Lafinwolff.
Post by Linda_Howell on Nov 17^th, 2006, 6:19pm

No, you're not crazy and you CERTAINLY are not alone anymore. I hope you will read all the links to the left of here so you can be informed when talking to your Dr.

One thing you should do is to read the link I'm providing below. It's about pure oxygen and it works as an abortive for about 75% of us. You do need a prescrition from your Dr. for it, but it's cheap compared to the meds we take, has no side-effects, and it does work.

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

Good luck and good reading. Come back and ask questions from anyone here for things you may not understand. There is no cure for these but there is hope in controlling them and we are there for you in supporting however we can.

Linda

Title: Re: Hello. My name is Lafinwolff.
Post by Guiseppi on Nov 17^th, 2006, 7:07pm

Since you already have the cafergot........I pop two cafergot and breathe pure oxygen when the headache starts. It will usually abort the attack withing 6-10 minutes, the cafergot keeps it away. I didn't have any luck using just cafergot, the headache would build faster then the meds could get into my system.

Linda is right, read everything on the board and get ready to educate your doctor if it turns out you do have CH. Very few doctors know much about it. Good luck and welcome.

Guiseppi

Title: Re: Hello. My name is Lafinwolff.
Post by Woobie on Nov 17^th, 2006, 7:15pm

HI -

You got a funny name ;;D

I'm woobie - and I just thought I would say hi cuz I like yer name!

I hope you can get some oxygen and that it helps!!

woobie ;;D

Title: Re: Hello. My name is Lafinwolff.
Post by Linda_Howell on Nov 17^th, 2006, 7:33pm

LMAO Look who's talking about funny names TINA!!!!!!

Woobie is our resident cleaner-upper, fuzzy slipper wearer and a hell of a nice person. If you haven;t already guessed....we are a family here. Lots of us have been to conventions and meet and greets and know each other's kids names, habits, likes and dislikes and other non-headache information.

Please tell us more about yourself. No addresses, phone numbers or SS numbers...just more about you.

Title: Re: Hello. My name is Lafinwolff.
Post by Lafinwolff on Nov 17^th, 2006, 8:05pm

You all do not know how glad I am that I found this sight! Just to talk to other people who understand! I think that is going to be a big help.
Let's see, about me. I work for Medtronic as a Training Project Coordinator. I enjoy my job and I like the people I work with.
I learned how to Ice skate and play hockey, at the same time, just before my 40th birthday. I LOVE playing hockey and recently decided to play goalie.
I have a Life Partner of coming up on 10 years, her name is Kerry. We have 3 dogs, Lady, a Cocker Spaniel, Thorin, a Golden Retriever/Collie mix, and Tilly, a Standard Poodle. We also have 2 cats, Malk & Monkeyboy!
Kery is a Professional Dog Groomer. We do rescue for orphaned kittens and puppies.
I am originally from Florida and Kerry is from Canada. We met here in Minnesota. She's the reason I fell in love with hockey. She's been on ice skates since she was 2 1/2.
She has been so good through all of this. I am glad to see that there is an area of this site where she can be in contact with other spouses that are going through this. She's been an angel!

Title: Re: Hello. My name is Lafinwolff.
Post by BB on Nov 18^th, 2006, 4:55am

Hello

Just wanna say hello and welcome you to the Board. :)

Sounds like you have a wonderful home.

Just one curious question: do you get whacked around the ankles a lot with ice hockey? I used to play normal hockey but had to quit as my ankles couldnt take it :P

Hope you will find relief soon with your headaches, keep reading and asking questions, the answer is out there somewhere :)

Painfree wishes

Annette

Title: Re: Hello. My name is Lafinwolff.
Post by roy21302 on Nov 18^th, 2006, 12:05pm

Just to say glad you found us, stick around you'll find loads of info and advice here. Hope you get your Meds; sorted soon try the O2 it good here to some PF time for you. Can't imagine trying to play hockey with a hit
Cheers Roy ;)

Title: Re: Hello. My name is Lafinwolff.
Post by Lafinwolff on Nov 18^th, 2006, 1:20pm

You do get hit in the ankles, occasionally. Kerry broke her ankle in spring of this year.
My problem is that I fall down a lot, usually hitting my head. I ended up with a concussion earlier this spring.

I tried the O2 last night, as well. I went to hockey practice with my team. The beast showed up just as I was finishing getting changed out of my gear. My best friend, Roni, is an EMT and on the team with me.
At this point, she had not seen me have a dance. This was a bad one (8), the late ones generally are.
I ran out to my truck because I could tell this was going south on me. Kerry & Roni followed me out. Kerry went on to this site before we went to practice and was looking around. She found the message about O2.
She told Roni about it and Roni said she had a tank at her house and she would bring it right over. I had taken 1 Cafergot already, I took the second when she got there and set up the tank.
We turned it on and I lay down and started breathing. This whole thing was drawn out over about an hour and it took a little time to work. (about 25 minutes after I got on the O2.
This time, I'll take 2 Cafergots and start the O2 right away. Yes, I can feel the shadows creeping!

Interesting note: I talked to my Mother last night on the phone. She said that I used to have terrible headaches when I was a child. I would rock, hold my head and cry. The doctor told her I just wanted attention.

Title: Re: Hello. My name is Lafinwolff.
Post by BB on Nov 18^th, 2006, 4:06pm

on 11/18/06 at 13:20:40, Lafinwolff wrote:

We turned it on and I lay down and started breathing. This whole thing was drawn out over about an hour and it took a little time to work. (about 25 minutes after I got on the O2.
This time, I'll take 2 Cafergots and start the O2 right away. Yes, I can feel the shadows creeping!

Just a note, DONT lay down while using oxygen, try to sit up right and lean back or forward a bit, it will work faster than lying down, also make sure you take slow dep regular breaths, hyperventilating doesnt help, plus get a NON rebreather mask to make sure you get 100% oxygen.

Painfree wishes to you.

Annette

Title: Re: Hello. My name is Lafinwolff.
Post by Linda_Howell on Nov 18^th, 2006, 6:47pm

Please tell Terry to come here and we will be gentle with her. ;)

We have so many supporters here at this site who will gladly take her under their wing and show her around and help her/help YOU.

Linda

Title: Re: Hello. My name is Lafinwolff.
Post by Quisto on Nov 19^th, 2006, 10:34am

Hi, Im Kerry

I am so relieved that Tory found this site. Its been a pretty strange few weeks.

The O2 has been working, no more rocking, crying and pacing. What a hard thing to watch. I slept thru the night for the first time last night.
I have started sleeping with my feet across Torys legs so that I wake up when she gets up, So Im guessing she slept all night too. (still sleeping in fact)

So So glad that we found something to make this manageable, I was worried about her state of mind.
Kerry

Title: Re: Hello. My name is Lafinwolff.
Post by CynthiaB on Nov 19^th, 2006, 11:19am

Hey Kerry. I'm sorry that Tory has to go through this, but at least she isn't dealing with it alone. This site has been a tremendous help for me, but I still want my hand held in between attacks...when I'm scared of the next one coming...or to share something that I've learned.

Your support is so important. I tried to share that with my husband, and his comment was "That will do absolutely nothing to relieve your pain". Maybe not the physical pain, but in my imaginary world I think it would help the emotional pain.

My whole point is, please don't feel like you are powerless to help her because you can't stop the physical force of the attacks. With love and support you can keep this beast and the fear of this beast from taking over y'alls lives full time. You are a vital part of this team!!!

We're glad you're here.

Title: Re: Hello. My name is Lafinwolff.
Post by roy21302 on Nov 19^th, 2006, 2:48pm

Hi Kerry, nice to be able to welcome a new supporter, supporters are very important people to us, thanks for being one. Stick around and have agood read, good luck to you and Lafinwolff Cheers Roy ;)

Title: Re: Hello. My name is Lafinwolff.
Post by RichardN on Nov 19^th, 2006, 7:05pm

Hi and Welcome to both of you . . .and you too CynthiaB

I'm a "head trauma" CHer (I think 16-20% of us) . . . nailed my noggin' 1/01 . . . ha's started . . . a year of tests (CTs, MRI, eyes, sinuses), all "normal" of course, mis-diagnosis, non-working meds.

When my wife (and amazing supporter) found this site (2/02) I was having 6-8 attacks per day, sometimes 3-5 per night . . .Kip 5-9, most 20-45 min . . . some 1 1/2 - 2 hrs . . . . I was a basket-case . . . always in fear of the next one . . .How soon?,how bad?, how long will it be?

This place and this wonderful family gave me a "name-for-the-pain" and the info/weapons to battle our common beast. I can live with the beast as long as I don't have to "dance" with the bastard. One of my favorite mottos on this board is, "Nothing works for evereyone. but SOMETHING works for everyone" . . . here, among folks who truly know your pain, you have a very good chance of finding the "something" that works for you.

Be Safe, PFDANs

Richard

Title: Re: Hello. My name is Lafinwolff.
Post by kissmyglass on Nov 21^st, 2006, 8:57pm

on 11/17/06 at 20:05:38, Lafinwolff wrote:

I learned how to Ice skate and play hockey, at the same time, just before my 40th birthday. I LOVE playing hockey and recently decided to play goalie.

Not the sharpest tool in the shed are we? ;;D
Just kidding, Welcome you're in the right place now.

Kev

Title: Re: Hello. My name is Lafinwolff.
Post by Lafinwolff on Nov 22^nd, 2006, 2:21pm

I grew up in Florida and we didn't have much ice there...except in our tea!

They say you have to be crazy to want to be a Goalie! Now, with the CH... I fit the description, perfectly!

Title: Re: Hello. My name is Lafinwolff.
Post by Linda_Howell on Nov 22^nd, 2006, 3:46pm

Hi Kerry, I am so glad you decided to come here.

I understand that it must be hell to watch someone you love go through this and feel helpless in not making it go away, but believe it or not there are some things you can do.

If she has oxygen, you can check on it often and make sure the tanks are full and it's all ready for the next headache.

Always have a pot of strong coffee ready to go and when it's made put an ice cube in it so she can down it fast.
Keep the refrigerator stocked with the energy drinks like Red Bull, Rock Star, etc.

Bring ice packs to her and if she's in the bedroom for instance..leave the door ajar a bit so you can hear if she might be hurting herself from banging into the wall.

Be there when it's over to re-assure her and hold her hand. This is also the time to ask her of anything she might want you to do for her when she's getting hit.

Linda

Title: Re: Hello. My name is Lafinwolff.
Post by Guiseppi on Nov 23^rd, 2006, 2:13pm

My wife found this site for me and saved my sanity. Good supporters are absolutely gold, you are lucky to have one. Cynthias post made me wanna give her husband a noogie! (It won't help with the pain, sheesh, the mental part of this is every bit as critical as the physical) Good luck to you and welcome to your new second home.

Guiseppi