Welcome, Guest. Please Login or Register
Clusterheadaches.com
 
Search box updated Dec 3, 2011... Search ch.com with Google!
  HomeHelpSearchLoginRegisterEvent CalendarBirthday List  
 





Page Index Toggle Pages: 1
Send Topic Print
lost and afraid (Read 1632 times)
Tanyana
CH.com Junior
**
Offline


What? Now???


Posts: 66
Hayden id usa
Gender: female
lost and afraid
Nov 12th, 2008 at 10:01pm
 
hi not sure this is the right place to post but im dealing
ch and can not afford the o2 and most of the prevention meds
im either allergic to or cannot take cannot take triptins either
although my doctor is willing to let me try Migrinel  dhe nasal spray im frustrated and feel lost and afraid and looking for ideas and support
thanks for listening ppattya
Back to top
  

When you get to the end of your rope, tie a knot and hang on!
Patricia Anderson Roth  
IP Logged
 
Karla
CH.com Alumnus
***
Offline


One of Many and Never
Alone - Join OUCH


Posts: 3837
x1|Madison WI USA
Gender: female
Re: lost and afraid
Reply #1 - Nov 13th, 2008 at 3:51am
 
Wow  you are in a terrible perdicament.  Have you considered the cluster buster methods.  They have been proven to work for many.  Use ice or heat which ever you find comforting around your neck and face.  I use the gelled tea towels that you can get cheap at walgreens.  They can be frozen or microwaved.  Works at your preference.  Try melatonin at bedtime.  Drinking a cold can of an energy drink has been able to abort some ch.  Some of the preventative meds are very cheap like methadone and lithium under $10/month.  I am sure that there are other meds you could try and pay cash for rather cheaply.  I would look at the medical info link at the left of the screen and see the list of meds and see how much they actually cost and go from there.  Maybe a cheap med will work for you.  Oxygen isn't that expensive either.  Good luck.
Back to top
  

Karla&&suffer chronic ch &&ch.com groupie since 1999&&Proud Mom of Chris USMC Semper Fi
Karlak_1313  
IP Logged
 
George
CH.com Moderator
CH.com Alumnus
*****
Offline


Black-Billed Magpie


Posts: 8126
Boise, Idaho USA
Gender: male
Re: lost and afraid
Reply #2 - Nov 13th, 2008 at 10:46am
 
I'm assuming you've been diagnosed with CH, since your doctor appears to be treating it as such.  Sorry to hear that you're allergic to triptans--it certainly complicates any approach to treating them that you might take.

From the sounds of things, your doctor seems to be concentrating on abortive medications.

For a good breakdown on abortive, preventive, and transitional therapies for CH, please read the following: 

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

You might wish to print out a copy and bring it to your doctor.  There are alternatives to triptans that you may find effective.

As far as oxygen goes, it is possible to set up a system using welder's 02 for minimal expense.  I'm hoping one of our members with more knowledge about it than I have will be weighing in shortly.  Oxygen, properly administered, is highly effective for a substantial majority of us.

Keep us informed, eh?  We'll try to help in any way we can.

All the best,

George
Back to top
  

"Whoever loveth me, loveth my hound."  (Thomas More, author of "Utopia", and Chancellor of England.  1477-1535)
WWW George jacox6820 7165032563  
IP Logged
 
Bob Johnson
CH.com Alumnus
***
Offline


"Only the educated are
free." -Epictetus


Posts: 5965
Kennett Square, PA (USA)
Gender: male
Re: lost and afraid
Reply #3 - Nov 13th, 2008 at 12:34pm
 
In the link George gave you, look for a med, Zyprexa (olanzapine). It aborts attacks very effectively and, on a per dose basis, you may find it acceptable.

As a preventive, some folks find Melatonin, 9-11mg/day useful. Since it's an OTC product, you don't need a Rx and it quite inexpensive.

Explore the OUCH site (left). You may find some other alternatives to meds which you could try.

Several of the drug companies offer programs to help folks get meds at reduced cost. Once you and your doc agree on something, your druggist should be able to to advise on this approach.
Back to top
  

Bob Johnson
 
IP Logged
 
Tanyana
CH.com Junior
**
Offline


What? Now???


Posts: 66
Hayden id usa
Gender: female
Re: lost and afraid
Reply #4 - Nov 14th, 2008 at 4:35pm
 
thank you all for your replays  i can't take zyprexa, lithum, or depokote all for verius reasons mainly that i have been on them in the past and have had bad side effects such as liver problems and development of type 2 diabietes    but i am hooking up with o2 and need to know more about it... do i need a take or is a concentrator enough  exactuly what flow do i need and what kind of mask is most effitive   o2 coming on monday nov 17th with a home o2 service paid mostly by medicaid   so could use more info if anyone knows it  hope all is doing well
Back to top
  

When you get to the end of your rope, tie a knot and hang on!
Patricia Anderson Roth  
IP Logged
 
BMoneeTheMoneeMan
CH.com Alumnus
***
Offline


In remembrance of KingCazman.
RIP


Posts: 2674
Portland, OR
Re: lost and afraid
Reply #5 - Nov 14th, 2008 at 5:38pm
 
that is some great news.  I am glad the O2 is coming.

You want to use a non-rebreather mask with a reservoir bag.  The nose canules dont work well at all.

You want pure O2 to flow at a minimum of 15 litres per minute.  Get on the O2 as soon as you feel a CH coming on.  Slow deep breaths work best for me.

Also might want to try some caffeine.  I drink Pepsi and coffee.  Others drink RedBull or other energy drinks.  Caffeine is a vasoconstrictor, which helps CH. 

Don't be afraid, you aren't lost anymore!!
Welcome.
B$
Back to top
  

"Fool me once, shame on, shame on you.  Fool - can't get fooled again"&&&&&&Think of how stupid the average person is, and then realize half the population is stupider than that.&&&&
 
IP Logged
 
Guiseppi
CH.com Moderator
CH.com Alumnus
*****
Offline


San Diego to Florida 05-16-2011


Posts: 12063
SAN DIEGO, CALIFORNIA USA
Gender: male
Re: lost and afraid
Reply #6 - Nov 14th, 2008 at 6:35pm
 
You've been given some great reading, I have nothing to add! as far as your oxygen questions, go to the medications section, and click on "oxygen terms explained" Chuck has put the premier info on oxygen useage, with all the terms and parts explained, complete with full color pictures. I have not seen a more comprehensive or easily understood explanation anywhere. (But don't tell Chuck I said that his ego is already huge Grin)

Guiseppi
Back to top
  

"Somebody had to say it" is usually a piss poor excuse to be mean.
 
IP Logged
 
king of pain
CH.com Newbie
*
Offline


Even those who are pure
at heart...


Posts: 6
x1|Lansing|USA|usa|393|104|MI,Michigan
Gender: male
Re: lost and afraid
Reply #7 - Nov 15th, 2008 at 2:31am
 
Hi hon, I dont know how this will fly with most on here but this is how I use my O2... first, it's an "all out of pocket" expence for me so I treat it like gold. I get 2 sizes of tanks, E and D (D's are shorter and easier to haul around) and I bought a sweet little regulator on E-bay for $5! It only has a max flow rate of 8 liters per minute, but that has always been enough for me after more than 20 years of use. Now the way I use it... I cut the end of a nasal cannula off, put the hose in my mouth and crank to 8, letting the O2 fill my lungs like a balloon, while at the same time breathing deeply and steadily through my nose. It usually takes only 2-3 minutes to abort, but only if you catch them in the early stages, and after 30 years of suffering, I can smell a cluster comming a mile away. Also, I turn my regulator on and off with each inhale so as not to waste a single precious ounce. Again, this might be frowned on by some or even most on here, I dont know. But damn the torpedos! This is just my way, find what works best for you, and God bless and goodluck!
Back to top
  
 
IP Logged
 
ClusterChuck
CH.com Alumnus
***
Offline


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


Posts: 5394
Greenville, North Carolina
Gender: male
Re: lost and afraid
Reply #8 - Nov 15th, 2008 at 3:34am
 
king of pain wrote on Nov 15th, 2008 at 2:31am:
this might be frowned on by some or even most on here,

I beg to differ with you, bro ... I think I speak for most of the "OXYGEN PUSHERS" when I say that I am SO happy that it works for you!  We are not all the same.  If you have found a method that works for YOU, at such a low flow rate, I am ecstatic for you!  There are others that have reported getting results from the lower flow rate, hell, even I have aborted a few with low flow rates.

Us "pushers" are just trying to get sufferers to use oxygen, at what works best for you.  As with most of the preventative and abortive medications out there for us, each individual reacts differently to different doses.  I don't think any of us would put you, or anyone else down, because you are able to abort at a low flow rate.

I am just happy that oxygen DOES give you the relief that we all deserve.  I could not be happier!

Chuck

Back to top
  

CAUTION:  Do NOT smoke when using or around oxygen.  Oxygen can permeate your clothing or bedding.  Wait, before lighting cigarette or flame.  

Keep fire extinguisher available, and charged.
ClusterChuck  
IP Logged
 
ClusterChuck
CH.com Alumnus
***
Offline


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


Posts: 5394
Greenville, North Carolina
Gender: male
Re: lost and afraid
Reply #9 - Nov 15th, 2008 at 3:55am
 
Guiseppi wrote on Nov 14th, 2008 at 6:35pm:
But don't tell Chuck I said that

Awwww .. Guiseppi LOVES me ... Or is it that he LUSTS me?

Hmmm ..

Hell, either way, I am ready!!!

Chuck

Back to top
  

CAUTION:  Do NOT smoke when using or around oxygen.  Oxygen can permeate your clothing or bedding.  Wait, before lighting cigarette or flame.  

Keep fire extinguisher available, and charged.
ClusterChuck  
IP Logged
 
Tanyana
CH.com Junior
**
Offline


What? Now???


Posts: 66
Hayden id usa
Gender: female
Re: lost and afraid
Reply #10 - Nov 15th, 2008 at 4:45pm
 
well good news and bad news.... good news my husband found the supports site and is willing to help me find weilders o2  and the bad news is that my insuance medicaid will not pay for o2 even with a script for the treatment of ch not even a little so... i'm f@$###ed.   Just a question:   are you sure your head wont exployed or the beast wont kill you?  And what is sleep anyway?  Well, life really is not all that bad!! I'm really glad my husband Coleman Found the supporters site.  Where's that shovel? I'll start digging!!  Does anyone else have cold sweats and shaking with the pain.  I think i'm hitting an 8 right now!!!! Can't think!!!!! God, I need o2!! My e-mail is pattyroth13@yahool.com  my phone is read only except for email and can't get to liabary very often if anyone can help me find out how to piece together o2 please email me      got ta go  brain is mush Shocked
Back to top
  

When you get to the end of your rope, tie a knot and hang on!
Patricia Anderson Roth  
IP Logged
 
Page Index Toggle Pages: 1
Send Topic Print

DISCLAIMER: All information contained on this web site is for informational purposes only.  It is in no way intended to be used as a replacement for professional medical treatment.   clusterheadaches.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site.  All information taken from the internet should be discussed with a medical professional!