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        New Message Board Archives >> 2006 General Board Posts >> hello my new friends
        
(Message started by: barry_sword on Nov 12^th, 2006, 8:11am)

Title: hello my new friends
Post by barry_sword on Nov 12^th, 2006, 8:11am

hello everyone. i am a 47 year old male married no kids. very active with my job and mountain biking. ch started in 2000,went to a nero in 2004 diagnosed with ch and put me on 900 mg lithium and a lot of predazone per day. ch went away for awhile but i am just starting my 3rd cycle now. my attacks are 2 per day lasting about 1hr each. this 3rd cycle is even more intense than before if you can imagine that!! my wife angie found this site[thank god] and we have read some of your stories, very sad. i am med free at this point. i quit smoking 14 months ago, but the beast does not care about that he just wants to dance and i guess i am his new partner[unlucky me] but i would have the beast stay with me full time if i knew he would leave each of you's alone. talk later friends barry sword from ontario canada

Title: Re: hello my new friends
Post by Bob P on Nov 12^th, 2006, 8:14am

Welcome Barry, sorry you're here.

Title: Re: hello my new friends
Post by Grandma_Sweet_Boy on Nov 12^th, 2006, 8:53am

Bracebridge - Home of Santa's Village, Derek Ruttan and a main street with a stop sign at the top of every hill!!!! Some pretty fine golf courses too! ;)

Welcome Barry - from another Canadian!

Carol

Title: Re: hello my new friends
Post by barry_sword on Nov 12^th, 2006, 10:02am

hello bob! thxs for your support.

barry

Title: Re: hello my new friends
Post by barry_sword on Nov 12^th, 2006, 10:05am

hello carol!! stop signs are fun in the winter eh!! best mtb riding around. summer's gone, so is santa. thxs for caring and will talk soon. i am new at this.

barry

Title: Re: hello my new friends
Post by Grandma_Sweet_Boy on Nov 12^th, 2006, 10:22am

Barry - it's where most of us earned our driver's license as kids. For some reason the examiner up there understood the power of the hills!

I'm originally from a little south of there - by way of Washago and Orillia but lived in Muskoka Falls, Mathiasvile and Vankoughnet as a kid. Still have family in the area. My Dad hauled all the gravel that went into the making of the Muskoka Falls Dam - that was way before your time. ;)

Don't be shy - read all the info to the left of the message board. You will find a ton of helpful people here.

Carol

Title: Re: hello my new friends
Post by cateyes on Nov 12^th, 2006, 10:55am

Hello Barry and Glad u found this site...it is a godsend actually..Everyone here is great and very supportive...Stop into Chat once in awhile gets kinda uhhhh "interesting" in there to say the least from time to time and always will to send vibes for our friends and can also get some information in there ...Hope to see ya soon in Chat..

Tammy

Title: Re: hello my new friends
Post by barry_sword on Nov 12^th, 2006, 11:37am

hello tammy! nice to meet you and everyone else here. there is so much support. i use to think i had something that no-one else had. what a lonely and isolated way of life. i already am looking at my ch in a different way thxs to ever-one here. talk later

barry

Title: Re: hello my new friends
Post by nani on Nov 12^th, 2006, 12:01pm

Hi Barry. Welcome and sorry you had to find us.
You say you are med free right now. Have you looked over to the left and read the oxygen info? Administered correctly, it works well as an abortive for many of us.
pain free wishes, nani

Title: Re: hello my new friends
Post by barry_sword on Nov 12^th, 2006, 12:46pm

hello nani! thxs for the advise. i will look at o2 as a option. i know tylenol 8 hr. capsules do-not work and lithium+predizone are never a option for me again. i will research more. bye for now

barry

Title: Re: hello my new friends
Post by LeLimey on Nov 12^th, 2006, 12:46pm

Nani beat me to it on the O2 but I wanted to say hiya anyway, to both you AND your wife as there is always a warm welcome for our supporters here. I'm very glad you have someone to help get you through it but its a tough job for them too and she is more than welcome to come and get some support and help here herself - as well as make some of the best friends ever :)
Welcome to you both
Helen

Title: Re: hello my new friends
Post by barry_sword on Nov 12^th, 2006, 12:55pm

hello helen! thxs very much for your support and advise. i know how helpless our loved ones feel when we get out of bed and go dancing in the middle of the night with this evil stranger. but through thick and thin they stay the course with us. i believe that was mentioned in our wedding vows!

barry

Title: Re: hello my new friends
Post by LeLimey on Nov 12^th, 2006, 1:04pm

Barry check the post pinned at the top of this board, Supporter Appreciation Day.
This coming Wednesday 15th November is our first annual Supporter Appreciation day. There is a link to a board where you can post a message to your supporter and its also a chance to let them know how much they mean to you and how grateful you are. Along with others I do feel EVERY day should be supporter appreciation day but, as with mothers day and veterans day, its nice to have one official day each year when we honour our loved ones and the other veterans of CH than just us.

Go on... spoil her rotten! ;;D

Title: Re: hello my new friends
Post by sandie99 on Nov 12^th, 2006, 1:32pm

Welcome, Barry! :)

I'm so sorry that you have ch. I'm glad that your wife found this site. This is the best place for us clusterheads. I hope that your cycle will be a short one.

Best wishes,
Sanna

Title: Re: hello my new friends
Post by barry_sword on Nov 12^th, 2006, 1:57pm

hello sanna! thank-you for caring. my last cycle was two years chronic, nasty time.pf for 1 1/2 years but the ch are back. i had lazer eyelid surgery to repair damage. i also hope for a short cycle. thxs

barry

Title: Re: hello my new friends
Post by Charlie on Nov 12^th, 2006, 4:11pm

http://www.netsync.net/users/charlies/gifs/welcome wave.gif

Welcome aboard Barry to the madhouse. Lots of good ideas here how to deal with this horror. I regularly post a technique that worked most of the time....for me anyway:

Dr. Wright’s Circulatory Technique:

I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.

Charlie

Title: Re: hello my new friends
Post by barry_sword on Nov 12^th, 2006, 7:47pm

Thank you Charlie

I will try this method for I have nothing to loose. except for the pain.
Thanks again

Barry

Title: Re: hello my new friends
Post by Barry_T_Coles on Nov 12^th, 2006, 9:49pm

Hi Barry up there from Barry down under.
Sad you have to be here but you are in good company & give your wife a hug for finding this place.
Everyone else has given you the good drum already & remember that there is always some one awake somewhere if you need to talk.

Cheers
Barry

Title: Re: hello my new friends
Post by barry_sword on Nov 12^th, 2006, 10:05pm

hello barry! just had a attact and the keyboard is getting wet. my eye is so wet i am fin ding it hard to type.l i amcrying. thank you for caring i will contact later

barry

Title: Re: hello my new friends
Post by Shaz on Nov 13^th, 2006, 11:16am

Hi Barry.

Welcome aboard, but so sorry you are in pain at the moment. I know what the tears are like. Its always a mixture of pain and relief that there are other people out there who really understand.

Believe it, we do...

Love Shaz :-*

Title: Re: hello my new friends
Post by rickyshot on Nov 13^th, 2006, 11:28am

Hi Barry. I live in Montreal and came here from Georgia. What part of Ontario are you in?. I am episodic for 22 years with horrible episodes coupled with complicated migraines for added fun. I felt the exact same way you did when finding this site two years ago. How come you won't do the Lithium thing again. Did you have a bad reaction. Many people on this site do a Lithium, Verapimil combo to prevent with good results.

Title: Re: hello my new friends
Post by barry_sword on Nov 13^th, 2006, 5:30pm

hello rickyshot! i am from bracebridge ontario[home of santas village;really] pleased to meet you. yes i had a bad time with lithium. mood swings, not eating, not talking, just ask my wife and friends. all behind me now. i'm sorry about your double pain must be hell only worse. talk to you later and thxs for your support

barry

Title: Re: hello my new friends
Post by barry_sword on Nov 13^th, 2006, 5:37pm

hello shaz! that was a dreadful night. my 2nd attack hit me the hardest i have ever had. i was walking the beast when i walked into a door frame . i could not see because my hands were sqeezing my temples and my eyes were watering so bad, but made it through. thxs for caring,will talk later

barry

Title: Re: hello my new friends
Post by vietvet2tours on Nov 13^th, 2006, 5:42pm

on 11/12/06 at 12:46:17, barry_sword wrote:

Oxygen ain't an option kinda thing. It is the first line of defense.

Title: Re: hello my new friends
Post by barry_sword on Nov 13^th, 2006, 5:55pm

hello vietvet2tours! ihad the worst nite of pain yet last night. i spent the day trying to see my nero but had to go through my family doc 1st because i have not seen the nero for 1 1/2 years. i took some humble pie and asked for just the predizone back. it worked before so lets try again. i will ask the nero about o2 when i see him. thxs will keep you up to speed.

barry

Title: Re: hello my new friends
Post by barry_sword on Nov 13^th, 2006, 6:07pm

hello barry-t-coles! last night is one to forget. the 1st attack was nasty but the 2nd was the beast in full flight. i tried med free this time but thats not going to work. went to my doc today and got my predizone without the lithium. worked last cycle so i will see this time. going to nero and discuss o2 seems everyone has positives on this. so nice to meet you and will talk later

barry

Title: Re: hello my new friends
Post by FramCire on Nov 13^th, 2006, 6:27pm

For me prednizone was a decent short term solution. once the taper was over within a couple of days the Chs were back in full force.

What are you using to abort these days?

O2 is obviously the best first thing.

Title: Re: hello my new friends
Post by barry_sword on Nov 13^th, 2006, 7:20pm

hello framshire! my 3rd cycle started just about 10 days ago and was trying med free. yikes!!!!! predizone for now, we have a o2 homecare centre 3kms from my house. let you know, nice to meet you.

barry

Title: Re: hello my new friends
Post by FramCire on Nov 13^th, 2006, 7:45pm

on 11/13/06 at 19:20:43, barry_sword wrote:

Seriously man, I can respect the med free approach (couldn't do it myself though) but get yourself O2 right away. Your Primary care doc should be able to write you a script for it.

Prednizone isn't bad but I cant see not getting an abortive. Imitrex, Zyprexa, Mygranol, ..... anything. I think imitrex is the popular choice around here, while Zyprexa is my fave.

Title: Re: hello my new friends
Post by Bill_G. on Nov 13^th, 2006, 10:53pm

Barry,
I won't dribble with the glad/sad routine, you're probably tired of hearing it by now. O2 is fantastic and like Fram said you family Dr. can write the order. If you have time though you might want to check @ welding supply stores for the O2. and regulator. Here in Cowtown the medical supply place wanted a hell of a lot more to rent an "s" bottle than the $7 that I pay now. Also you might want to consider getting ahold of a smaller "E" bottle that you can take places with you.
One last thought before I go. I have had a fair amount of success with chugging an energy drink. Started with Red Bull ($1.75 for a 8 oz. can) but my favorite now is one called Rip-It($1.00 for a 16 oz. can)

Bill

Title: Re: hello my new friends
Post by barry_sword on Nov 14^th, 2006, 6:44am

good morning! no ch last night. took predizone [i know just a mask] but sure was a good night. my co-workers will appreciate it today.http://www.clusterheadaches.com/public_html/yabbimages/smileys/rolleyes.gif
Roll Eyes

barry-sword

Title: Re: hello my new friends
Post by barry_sword on Nov 14^th, 2006, 11:02pm

Hello everyone! dodged my 1st of 2 ch tonight using prednzone. not a cure but relief for a night or two or more. pf times for every-one bye for today

barry-sword

ps we will post pics as soon as we can fig.out xxx

Title: Re: hello my new friends
Post by FramCire on Nov 15^th, 2006, 12:29am

on 11/14/06 at 23:02:52, barry_sword wrote:

Im sorry but your comment made it sound like you use prednizone as an abortive.

You do take it daily, right?

It is being tapered, right?

Title: Re: hello my new friends
Post by barry_sword on Nov 15^th, 2006, 6:31am

hello framshire! i just started prednzone on monday. i guess i am using it as an abortive. 12 tabs in the morning is my dose. i promise to take other alts but for now this is my 2nd full nights sleep. the beast might not like me taking these but relief is relief. we cannot thank you's enough for concearn. i dont know of a group of people out there with this much compassion. must get ready for work, will talk later. thxs again.

barry-sword

Title: Re: hello my new friends
Post by barry_sword on Nov 15^th, 2006, 7:50pm

hello all! i've been calling my med 'predizone' but it is really called Novo-Prednisone 5mg 12 at once in morning for 1 week; drop 1 pill per dose per day for 2 more weeks. i was just spelling it like it sounded, i know it is a steroid! pf today, hope everyone has a pf night.

thxs barry-sword

Title: Re: hello my new friends
Post by barry_sword on Nov 15^th, 2006, 9:39pm

hello anybody! is each cycle worse? i am on my 3rd and sinnce 2000 they have doubled in pain. what can i expect with this beast?? help please!

barry-sword

Title: Re: hello my new friends
Post by vietvet2tours on Nov 15^th, 2006, 11:05pm

shhhhhhhh

Title: Re: hello my new friends
Post by barry_sword on Nov 16^th, 2006, 6:55am

hello vietvet2tours! i was just curious. we must live one day a a time. pf last night;yeah; but that was the prednisone. how do you use o2 yourself? i am gathering info on this so i can be educated for when i get mine. thxs

barry-sword

Title: Re: hello my new friends
Post by FramCire on Nov 16^th, 2006, 8:22am

on 11/15/06 at 21:39:04, barry_sword wrote:

hello anybody! is each cycle worse? i am on my 3rd and sinnce 2000 they have doubled in pain. what can i expect with this beast?? help please!

barry-sword

Sorry to say but asking what to expect from the beast is like asking to tell you the winning lottery nuimbers.

Dropping your dose like that on the Prednizone is called tapering.

See the Oxygen info tab on the left side for more O2 info. MAKE SURE YOU GET A NON-REBREATHER mask. Write it down and ask for one. MAKE SURE YOU GET IT!!!

Any other questions, ask away.