Yet Another Bulletin Board

Welcome, Guest. Please Login or Register.
Oct 17th, 2019, 8:01pm

Home Home Help Help Search Search Members Members Member Map Member Map Login Login Register Register
Clusterheadaches.com Message Board « Hi »


   Clusterheadaches.com Message Board
   New Message Board Archives
   2004-2005 Getting to Know Ya Posts
(Moderator: DJ)
   Hi
« Previous topic | Next topic »
Pages: 1  Reply Reply Notify of replies Notify of replies Send Topic Send Topic Print Print
   Author  Topic: Hi  (Read 326 times)
no-one
New Board Hall of Famer
USA 
*****




aude sapere        cogito ergo         disce pati

  beckyulissi   Becku22


Gender: female
Posts: 508
Hi
« on: Feb 17th, 2004, 10:02am »
Quote Quote Modify Modify

Hi,
 
   I would like to start off by thanking you all for being here, I have learned a lot from this site.
 
   Now the boring stuff, I have suffered from migraines my whole life. Things got worse about 6 1/2 years ago ( no nothing happened that we can remember). I've gone through 2 dr.s and I am working on my 3rd, this one is at a headache clinic.  My offical dx. is cdh, clusters and migraines. We have gone through all the differant meds and are now going backwards trying to find something that will work. From reading here I see that verapamil and imitrex is working for most of you, but my bp is low and that made it even lower and I kept passig out. Imitrex stat I had a reaction  to I will never take that again. So right now I am on:
900mg x3 of neurontin
75 mg x 2 of effexor
9 mg of melatonin  pm
I use DHE and I just got my O2 tank yesterday (thanks to reading here about it).
     I still have a base line pain at 6 everyday, and I am up atleast 2 x a night, and am being hit aleast 3-4 x a day for the last 3 months.
     If anyone has any ideas, I will gladly take them.
Sorry this is so long ,
Becky
IP Logged

"Be who you are and say what you feel...Because those that matter....don't mind....And those that mind....don't matter."


Man is what he believes. Anton Chekhov

Unless you believe, you will not understand.
aprilbee
CH.com Alumnus
New Board Hall of Famer
USA 
*****




Ain't I a stinkah!!

   


Gender: female
Posts: 1442
Re: Hi
« Reply #1 on: Feb 17th, 2004, 10:09am »
Quote Quote Modify Modify

Welcome Becky!  I have CH and Migraines also, sounds like reasearch is helping you out, I just want to welcome you to our/your home!  Great family here!  Hope the new meds will help you!   Smiley
IP Logged
Giovanni
New Board Hall of Famer
USA 
*****




I love YaBB 1G - SP1!

   
Email

Gender: male
Posts: 764
Re: Hi
« Reply #2 on: Feb 17th, 2004, 12:29pm »
Quote Quote Modify Modify

Welcome Becky,
 
You're going thru a rough time now...I hope it ends sooner than later.  Are you taking B-Complex 50 vitamins with the melatonin?  I believe that this would make the melatonin work better.  The O2 should help a lot, but make sure it is in the configuration to your left with a non-rebreather mask set at a high flow rate.
 
Keep us posted on your progress.
 
Best Wishes,
John
IP Logged
Woobie
CH.com Alumnus
New Board Hall of Famer
USA 
*****




I luv you guys!!!!!!!!

   
Email

Gender: female
Posts: 3800
Re: Hi
« Reply #3 on: Feb 17th, 2004, 12:34pm »
Quote Quote Modify Modify

Hi Becky
 
Welcome !!!   Sounds like you're doing everything you can right now.  Hope O2 works for you - it's a Godsend around here!!!    
 
Stick around - you'll like it here...
 
tina
« Last Edit: Feb 17th, 2004, 12:34pm by Woobie » IP Logged
stevegeebe
CH.com Alumnus
New Board Hall of Famer
USA 
*****



I love YaBB 1G - SP1!

   
Email

Gender: male
Posts: 1342
Re: Hi
« Reply #4 on: Feb 17th, 2004, 6:51pm »
Quote Quote Modify Modify

Hey Becky.
 
Man, I thought I was on high doses of Neorontin at 1800 mg per day.
 
I was working a six month gig and getting nowhere on Trex, Depakote, Frove and Verap.
 
It wasn't until I got off of that cocktail and started Neurontin, Cafergot, Bellaspas (at night), and increased the Verap, that the thing finally went away.
 
I'm not sure if it was all that or if it had just had enough of me.  But I expect its return soon and this is what I will be starting off with this time and see what happens.
 
O2 will help.
 
Good luck to you and welcome home.
 
Steve G
IP Logged
Charlie
CH.com Alumnus
New Board Hall of Famer
USA 
*****




Happy to be here

135447360 135447360   mondocharlie   mondocharlie
Email

Gender: male
Posts: 14968
Re: Hi
« Reply #5 on: Feb 17th, 2004, 8:32pm »
Quote Quote Modify Modify

Welcome Becky. The more you read, the more likely you are to stumble over something here that may help.  
 
Here is the link to a circulatory technique that costs nothing, is non-invasive, and worked for me:
 
http://www.ouch-uk.org/ch/note_colleagues.cfm
 
Let us know how you're getting along.
 
Charlie
IP Logged

There is nothing more satisfying than being shot at without result---Winston Churchill
justasound
New Board Junior
USA 
**






  justasound76   dreamradial
WWW Email

Gender: male
Posts: 58
Re: Hi
« Reply #6 on: Feb 17th, 2004, 8:52pm »
Quote Quote Modify Modify

I'm glad you got the O2, i hear great things about it in here, let us know how it works out for you.  
 
PF wishes, Lee
IP Logged

You have the right to remain silent. Anything you say will be misquoted and used against you.
TxBasslady
CH.com Alumnus
New Board Hall of Famer
USA 
*****




Bass fishin' is a h00t  It's the catchin' that sux

   
Email

Gender: female
Posts: 3201
Re: Hi
« Reply #7 on: Feb 18th, 2004, 12:12am »
Quote Quote Modify Modify

Hi Becky,
 
Welcome to the board.
 
Sounds like you are in a real rut with the beast.
 
John mentioned the flow rate on your 02.....you didn't say what rate you are on .  For most here...it is around 15 or so.  For some here, the low rates just don't seem to work.
 
Hope you get some relief and rest real soon.
 
PF vibes,
 
Jean
IP Logged

How lucky I am... to have known someone who was so hard to say goodbye too.

Take a kid fishin
www.takemefishin.org

I adopted a Vietnam POW/MIA from El Paso, Texas!
katlee
New Board Newbie
USA 
*





   
Email

Gender: female
Posts: 13
Re: Hi
« Reply #8 on: Feb 18th, 2004, 1:04am »
Quote Quote Modify Modify

Hi Becky, sounds like your going thru alot and I too hope it ends very soon (like right now!).     kat
IP Logged

tomorrow is another day....if i can make it through the night!
no-one
New Board Hall of Famer
USA 
*****




aude sapere        cogito ergo         disce pati

  beckyulissi   Becku22


Gender: female
Posts: 508
Re: Hi
« Reply #9 on: Feb 18th, 2004, 8:23am »
Quote Quote Modify Modify

Thank you all for the nice welcome. I am not sure how to answer everyone back one at a time.
 
John, I will go to the store and get some B-complex 50 today.
 
Charlie, thanks for  the info of that technique, it sounds good. I will try it and let you know.
 
Jean, I only have mine O2 set at 8, I'll have to try setting it higher.  
 
Now I have question about the O2. I do use a non-breather mask, but how tight is it to fit to your face?
I seem to have some room under my chin.
 
Thanks again, Wishing everyone a pain free day
 
Becky
IP Logged

"Be who you are and say what you feel...Because those that matter....don't mind....And those that mind....don't matter."


Man is what he believes. Anton Chekhov

Unless you believe, you will not understand.
Mr. Happy
CH.com Alumnus
New Board Hall of Famer
USA 
*****




If I can do it, it ain't art.

6108764393 6108764393   Randy   Piscatorus
WWW Email

Gender: male
Posts: 2217
Re: Hi
« Reply #10 on: Feb 18th, 2004, 8:37am »
Quote Quote Modify Modify

on Feb 18th, 2004, 8:23am, no-one wrote:

Now I have question about the O2. I do use a non-breather mask, but how tight is it to fit to your face?
I seem to have some room under my chin.

 
Becky.........I can get by with 8 lpm. I've seen others go thru 15 lpm and it still ain't enough.
As for the mask......it's GOT to fit tight. If need be, hold the bugger smack tight against your face, no leaking allowed. If the fit is THAT poor, talk to the O2 supplier about a smaller mask. They probably won't have one, but it never hurts to ask!
 
Keep on huffing,
RJ
IP Logged

May those who don't want any
Have memories of never getting any.
ClusterChuck
CH.com Alumnus
New Board Hall of Famer
USA 
*****




The BEAST rises again, and again, and again, and .

   
Email

Gender: male
Posts: 3181
Re: Hi
« Reply #11 on: Feb 19th, 2004, 1:37am »
Quote Quote Modify Modify

on Feb 18th, 2004, 8:23am, no-one wrote:
Now I have question about the O2. I do use a non-breather mask, but how tight is it to fit to your face?
I seem to have some room under my chin.

 
Welcome Aboard!
 
First of all, from the way you describe it, you are using the strap to hold the mask to your face.  DON'T!  Many of us remove the strap.  You don't want to fall asleep with the mask on, and then run out of O2!
 
I hold the mask to my face with my right hand.  Move it around until it is secure and airtight.  The reason that I use my right hand, is that when I inhale, I place my thumb over the holes in the right side, and my forefinger over the holes/valve on the left side.  I them remove them when I exhale.  That way I make sure I am getting pure O2.
 
Continue asking questions.  We want to help.
 
Chuck
IP Logged

"No man can be happy without a friend, nor be sure of his friend till he is unhappy."
Thomas Fuller
rumplestiltskin
Guest

Email

Aheada pain
« Reply #12 on: Feb 19th, 2004, 7:08am »
Quote Quote Modify Modify Remove Remove

Oh man...you sound like my wife. A whole mess of different kinda headaches. She's got the Clusters under control thanks to this website butt the other sum bitchs are kickin her rear. She's got one now that's been pretty much 24/7 for 7 days now. She has pretty much lived with constant....and I do mean all day all night headaches of one sort or the other for many years.  
 
my heart goes out to you.
 
I'm a simple episodic Clusterhead. O2 at 8 lpm does the trick. I usually have a beard so the mask never fits tight...it still works. I use the strap cause I need my hands free to do jumpin jacks, give god the finger, and hit walls till the O2 kicks in. I used to get all concerned about how the valves were workin and tightness and blah blah....what that all boiled down to was just impatience due to the severity of a Cluster and wantin it to stop instantly. I just gotta keep remindin myself to breath deep, be patient and overcome the urge to tear the mask off cause it just iritates the shit outta me. O2 does not work for my wife....so it goes.
 
my heart goes out to you.
 
good grief
den
IP Logged
Cerberus
New Board Hall of Famer
USA 
*****




Whomever said that two heads are better than one?

   
Email

Gender: male
Posts: 2117
Re: Hi
« Reply #13 on: Feb 19th, 2004, 9:08pm »
Quote Quote Modify Modify

If the 8lpm ain't gettin it after that jack it up to 10 if that ain't gettin it, up to 12 and so on and so on.
 
Gettin a mask to "fit" is not an exact science I'm constantly twisting mine up to get it to fit....lol but..
 
Quote:
when I inhale, I place my thumb over the holes in the right side, and my forefinger over the holes/valve on the left side.  I them remove them when I exhale.  That way I make sure I am getting pure O2.  

 
 I do that too, seems to work.....ifn ya got more than one mask you can save yerself the effort of all that biz by using the rubber stoppers from one to plug up the holes.....best part is they are flexible enough to release when you exhale as well. leaving both hands free to do whatever ya gotta do. But ......I don't use the strap most of the time so one hand is always required. Does a better job holding the mask to my rig (when not in use) than it does to hold it to my face.
 
Keep experimenting in conjunction with the Doc to find what meds work for you, it can be a real crap shoot sometimes, but, well worth it when ya find the right combination.
 
Ramon
IP Logged

I would rather face the end with terror than terror without end. - (Deitrich Sawatsky 194?)
Prense
CH.com Alumnus
New Board Hall of Famer
USA 
*****



Kerry is an idiot!

   
Email

Gender: male
Posts: 1607
Re: Hi
« Reply #14 on: Feb 19th, 2004, 10:25pm »
Quote Quote Modify Modify

on Feb 19th, 2004, 9:08pm, Cerberus wrote:
I do that too, seems to work.....ifn ya got more than one mask you can save yerself the effort of all that biz by using the rubber stoppers from one to plug up the holes.....best part is they are flexible enough to release when you exhale as well. leaving both hands free to do whatever ya gotta do

 
The rubber discs are a bit flimsy and do not seal up very well (even when new).  The discs from a chemical protection mask fit perfectly and seal completely.  You can get them for a dollar or so from many military surplus stores.  The name for the disc is outlet valve disc or something like that.  Looks the same as the one on the O2 masks except it is heavier and gray or black in color.  Of course, they also release just fine when exhaling.  
 
Probably makes little difference in the amount of O2 you actually get, but I got tired of forcing the discs to seal (with my hand) when I inhaled.
 
Chris
IP Logged

Where does the white go in a snowman when the snow melts?
Pages: 1  Reply Reply Notify of replies Notify of replies Send Topic Send Topic Print Print

« Previous topic | Next topic »


Clusterheadaches.com Message Board » Powered by YaBB 1 Gold - SP 1.3.1!
YaBB © 2000-2003. All Rights Reserved.


©1998-2010 Web Vision Enterprises All rights reserved. All information on this site is protected by international copyright laws. You may not re-distribute any information from this site without written permission from Web Vision Enterprises and the webmaster of this site. Violators will be prosecuted.
You may view our privacy policy and financial disclosure statement here

test rss