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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> hello and sorry :-[
        
(Message started by: hoeboe on Mar 4^th, 2004, 6:39pm)

Title: hello and sorry :-[
Post by hoeboe on Mar 4^th, 2004, 6:39pm

it seems that i got off to a bad start yesterday. i would like to apologize if i offended anyone or they got the wrong idea about why i posted. i did say that i have been hanging around for about 3 years but in all that time i have never been on the forums and it has been a long time since i have visited the site at all. i think the last time i was here there wasn't even an Ouch tab in the menu. :-[

now for the formal introduction:

i'm a 33yr old male that has been suffering CH for 10 years. in the past i have tried Cafregot (sp?), Maxalt, Imitrex, Norgesic Forte, Zomig, pot, T3's, 222's. none of which does s**t for me except maybe Trex which for me has horrible side effects. that is mainly the reason i have stopped all formal modern medicinal treatments. the side effects of Trex lasted 4 times longer than the HA.

the HA have been relatively mild for the past few weeks but have just gotten over a 6-7 episode that lasted 3 or so months.

the side of my head has some nice broken blood vessels from the puching it's endured i can tell ya. >:(

i was just so excited yesterday when i had heard of the dude selling the pepper spray that i had to do a search on CH.com to see if anyone else had tried this stuff and if it worked. i guess after my long absence from the site i should have checked the new info in treatments before i jumped the gun and posted. i guess i should of put 2 and 2 together when he was throwing migraines and CH in the same sentence and comparing the 2.

again, sorry.

well that's it. this is me. take me or leave me :)

cheers
hoeboe

Title: Re: hello and sorry :-[
Post by Prense on Mar 4^th, 2004, 6:43pm

Welcome aboard!

I'm glad you did this. Have you tried O2 yet? Gives numerous folks some relief.

Only thing I can say about the pepper spray is try it and see. I am not gonna fry my nose just yet.

Regards!

Chris

Title: Re: hello and sorry :-[
Post by hoeboe on Mar 4^th, 2004, 6:48pm

no haven't tried it yet. i have been without a doctor for over a year now and i just really don't have the time to sit in a clinic for 4 hours to try and get a scrip. i may do that the next time they get bad.

Title: Re: hello and sorry :-[
Post by Prense on Mar 4^th, 2004, 6:50pm

You can also check into welder's O2...no script needed.

Title: Re: hello and sorry :-[
Post by hoeboe on Mar 4^th, 2004, 7:30pm

thanks for the info. i may just try that. i hate doctors anyway.

Title: Re: hello and sorry :-[
Post by Lizzie2 on Mar 4^th, 2004, 8:06pm

Hi there....Like Chris said...also glad you posted this. Good for you for not running away. This place is incredibly helpful for so many of us!!

Question...have you ever tried a preventive medication for CH? I know that you don't like doctors, but for a lot of us meds like Verapamil, Lithium and others have really helped a whole lot!!

Just a thought...

Lizz

Title: Re: hello and sorry :-[
Post by hoeboe on Mar 4^th, 2004, 8:24pm

yeah i forgot 2 drugs i had been on. Verapimil was one and the other was Ergotamine. no idea why the doc that ergo would do anything :-/

i thought Cafregot, Norgesic, and Ergo were preventative. i know is was taking 1 of those a day. it was supposed to be preventative anyway.

Title: Re: hello and sorry :-[
Post by Lizzie2 on Mar 4^th, 2004, 8:33pm

Nope nope!!

Cafergot is an abortive...NOT a preventive. It should not be taken every day as rebound can result. (Different doc's have different opinions about what drugs can cause rebound....but most that I've read do believe you can rebound off of cafergot and all the ergots such as DHE, ergomar, etc)

The only ergot derivative drugs that can be taken on a daily basis as preventive are the old Sansert (methysergide)...no longer made, and Methergine.

I don't know about norgesic...not really sure what it is. If it's a pain med though...probably not for daily use.

Verapamil is definately a preventive. There are others listed on this site in both forum posts and some of the info on the left.

Lizzie :)

Title: Re: hello and sorry :-[
Post by hoeboe on Mar 4^th, 2004, 8:38pm

probably has something to do with why i hated my doctor. bloody quack! mind you that was like 9 years ago i was on ergot. i may be wrong with the oone a day. (probably not though)

Title: Re: hello and sorry :-[
Post by Lizzie2 on Mar 4^th, 2004, 8:44pm

yeahhhh....search for a good headache specialist!! then maybe you'll get some appropriate help. :) i'm sure there are other canadians on this site that can suggest a good doc for you. maybe post on the general board that you are looking for a good doc in your area?

when the mix with your doc is bad...it makes the situation THAT much worse!! i just left a bad situation myself...

also you can look on the OUCH site at the list of docs posted there and see if there's one in your area.

lizzie

Title: Re: hello and sorry :-[
Post by cathy on Mar 5^th, 2004, 7:13am

Hey great to see you post, don't let the sheep drive you away, hope you stick around and get to know some of us better, here's hoping you find something that works for you as for apologies I still fail to see what you said or did wrong...lots of things that work for some don't work for others just the nature of the beast I reckon, but if it works for you then thats all that really matters.

Welcome to the mad house....

Cathy :)

Title: Re: hello and sorry :-[
Post by pubgirl on Mar 5^th, 2004, 8:05am

Hoeboe

"bloody quack" - you sound like a Brit! ;;D
Welcome to the madhouse!

You've arrived, had a flaming from Jonny and a STFU. It's called baptism by fire!

Wendy

Title: Re: hello and sorry :-[
Post by Tiannia on Mar 5^th, 2004, 11:22am

Hello Hoeboe. Yes there is a sort of trial by fire here and we have all had it (hell mine was from Cathy :-*). But Clusterheads are stuborn if nothing else and you coming here proves that you deffinatly fit in. ;;D

I hope that your cycle has ended but if not there are lots of new meds out there that might help you more. Dont be down on them all cause you had a bad doc. There are some good ones out there even if they are like finding a needle in the haystack. Look into the Welders O2 if nothing else if you really dont want to or cant find a good doc.

PF wishes to you,
Tiannia

Title: Re: hello and sorry :-[
Post by pubgirl on Mar 5^th, 2004, 11:52am

Tiannia

You were lucky (and I suspect I was partly responsible for it :-[) mine was from Jonny!
Hoeboe, you are in good company!

Wendy

and on a CH note. I urge you Hoeboe to work out some way of trying high flow 02. It is my miracle treatment and lifesaver.

Title: Re: hello and sorry :-[
Post by Opus on Mar 5^th, 2004, 1:10pm

Hoeboe,
Don't like docs, I don't like the system but sometimes it is necessary. Try Melatonin for a preventative, I would get some 1 mg pills and start at 6mg take them 1 hour before bed, and increase 1mg per day, when things get worse, then start backing down, stay at the level that you were the most PF and try it for a few weeks. For some people any melatonin makes things much worse, you will realize this in a day or two. I have done this with the non timed release melatonin. People taking the timed released have reported that a lower dose works well. I am on 12mg, I went up to 15mg, then went back to 12mg where I have had less pain. I have had 5 PF days now. For other Non prescription and non-med treatments look Here (http://www.clusterheadaches.org/resources/non_script_treat.htm)

Opus/Paul

Title: Re: hello and sorry :-[
Post by Tiannia on Mar 5^th, 2004, 1:34pm

on 03/05/04 at 11:52:27, pubgirl wrote:

You were lucky (and I suspect I was partly responsible for it :-[) mine was from Jonny!Wendy.

No Wendy, really there is no fault. It is just the fact that we all are very strong willed people. We have to be to have clusterheadaches and not let is destroy our lives. This leads to us being very outspoken. Another side effect of having CH is that many of us are very literal. We take things as we first see them and that is how we react, having to deal with constant pain makes this a reality. We are also very protective. We stick together and even though we dont try and push people away, we also dont want anyone to hurt the people we care about. Does this lead to people getting thier feelings hurt, sometimes. Does this drive some people away, sometimes. But when I felt that I would never come back to CH.com, I HAD to. I knew that this was a place that I could learn form, that I could get the support and understanding that no one but a CH fellow sufferer could give. So I came back. And when I get flamed, well I flame back. This is a family and it does not matter that many of us will never meet face to face, there are good times and bad time. But when we need a shoulder, to vent, to scream and to cry I know that the door is always open.

Tiannia

Title: TRe: hello and sorry :-[
Post by Filbert on Mar 5^th, 2004, 2:35pm

Tiannia
I would like to thankyou for an excellent post!!! What you have just written makes complete sense.We are on this site because we have Cluster Headaches-the, yes the most painful condition known to humankind!We need tu fight it TOGETHER

Filbert

Title: Re: hello and sorry :-[
Post by BobG on Mar 5^th, 2004, 3:27pm

You're a true gentleman hoeboe. Welcome to the board.

Title: Re: hello and sorry :-[
Post by Margi on Mar 5^th, 2004, 4:18pm

Hi Hoeboe, and welcome. Just to let you know, we have a listing of cluster knowledgeable doctors organized by province, over at OUCH Canada. Check us out sometime!!

http://www.clusterheadaches.ca and our message board is at: http://www.clusterheadaches.ca/cgi-bin/yabb/YaBB.pl

Title: Re: hello and sorry :-[
Post by pubgirl on Mar 5^th, 2004, 4:22pm

Thanks Margi!
I tried to say that to hoeboe on another post but it was partially taken as a "piss off back to Canada" which wasn't what I meant at all!

Wendy

Title: Re: hello and sorry :-[
Post by Margi on Mar 5^th, 2004, 4:51pm

LOL Wendy - I love the way you put things. :) I can "hear" your accent in your writing!!

I can't find the other thread that everyone's talking about - the "ten most recent posts" thingy keeps timing out on me....

Title: Re: hello and sorry :-[
Post by pubgirl on Mar 5^th, 2004, 5:07pm

Sorry Hoeboe, don't mean to resurrect this :'(

It's the "100%" thread on the General Board Margi
I wasn't as kind as I might have been frankly, sorry Hoeboe,

Wendy

Title: Re: hello and sorry :-[
Post by t_h_b on Mar 5^th, 2004, 6:14pm

Hey, Hoeboe, welcome aboard.

Don't worry about your first post over on the other thread--it gave people something to do to keep busy in between cluster attacks.

Really, next time you should charge admission! $1.00 to attack you, $1.00 to defend your possible innocence, 50 cents to watch, and 25 cents to keep discussing it after 48 hours. You could raise a few bucks for OUCH that way.

I would suggest that you ask if anybody has tried these next time, maybe even offer them at a discount for ClusterHeads:

http://narang.com/headache-band.html

You should be able to charge $5.00 for that one, easy.

Better yet, put your post under the Children and Clusters topic, then you can charge $20.00!!! ;)

Title: Re: hello and sorry :-[
Post by amen on Mar 5^th, 2004, 6:18pm

I just want to say welcome, and it takes guts to do this start over thread. ;)
I myself have been flamed by jonny a few times. Kinda like and initiation. :o
Good luck and PF days to ya
Andrea

Title: Re: hello and sorry :-[
Post by jonny on Mar 5^th, 2004, 6:59pm

Ok, ok Im eatin some crow (First time in over four years here).....Somebody pass this dude an oar....Everybody rows Dude.

Welcome aboard

...............................jonny

Title: Re: hello and sorry :-[
Post by stevegeebe on Mar 5^th, 2004, 7:51pm

Adam had 'em...so do you.

Welcome hoeboe.

Steve G

Title: Re: hello and sorry :-[
Post by tsayswhy on Mar 14^th, 2004, 12:16am

Wecome aboard hoeboe ;)

Glad to see you stick around!! o2 works well for me but in ontario ohip will not cover it, so you need to find out if your work plan will. Since you only a short distance from me a good Neuroloist to try and see if you can get your doctor to refer you to is Dr J Trott he is in burlington ;)

keep posting and come over and see our ouch canada site too tari

Title: Re: hello and sorry :-[
Post by Mr.YL on Mar 14^th, 2004, 1:06am

I bailed once but got rescued...thanks jonny ya taught me a lesson...ya know

Title: Re: hello and sorry :-[
Post by Robert the....... on Mar 14^th, 2004, 5:45am

Welcome aboard from me, Hoeboe!

This place can be a bit rough. and It takes guts to stand back up after a flooring but you did.

Scott

Title: Re: hello and sorry :-[
Post by toader on Mar 15^th, 2004, 2:53pm

cajun anyone? ;;D