Jump to content
ClusterBusters
Sign in to follow this  
Donnie S

How Many Ya'll Are Chronic

Recommended Posts

Yes, those late night/early morning hits are the worst.

I still wake up and head straight for the oxygen. Hyperventilate it with an optimask and the attack will go away in 5or 10 minutes....sometimes more or less. It stops it in it's tracks (usually.)

If I didn't have oxygen during those situations I would be scared to death... like in the bad ole days before this sight told me about oxygen.

Share this post


Link to post
Share on other sites

Donnie, you want your doctor to see this article from a prestigious medical journal (Journal of the American Medical Association).  At the least, print it out and bring it with you.  Even better, in advance, fax it or send a link to the doctor and to any support people there (nurse, physician's assistant, etc.). Often these support people are more of a help than the doctor.

http://jama.jamanetwork.com/article.aspx?articleid=185035

If I may, since I wrote the oxygen page that b.g. linked you to, I'd recommend the updated one that's here: http://clusterbusters.com/wp-content/uploads/2012/11/OXYGEN-12-2012.pdf

Also -- have you tried energy drinks or energy shots for those nighttime hits?  Might help.  Will help a lot in combination with oxygen.

Share this post


Link to post
Share on other sites

Donnie,

Please check on which, if any, of your meds require a taper. IE: Reducing the daily amount gradually. Some things can't just be stopped one day. You can check this online easily.

Good Luck!

spiny

Share this post


Link to post
Share on other sites

got my info on oxygen printed off for my doc for wed and seeds ordered and certainly will check out the med thing. my mom is a nurse so that has its advantages too lol. 

you guys are great ....cheers to better days ahead.the last 3 have been brutal.scared to go to sleep.

Share this post


Link to post
Share on other sites
doc give me the prescription for oxygen today. should be set up tomorrow

Great, Donnie!  Two suggestions: (1) Call the O2 provider to confirm that they are going to bring you the right stuff.  Many O2 providers have never worked with CH patients and so they make mistakes.  Be sure you're getting O2 in a tank (cylinder), not a concentrator. Non-rebreather mask and a regulator that goes at least to 15 litres per minute.  You would like to have at least one large tank (an "M" tank) and at least one smaller one (an "E" tank).  (2) Be sure they set it up for you and show you how to use it.  It's simple, but you don't want to be worrying about whether you're doing it right.

As you use it, (1) Cut off (or don't use) the strap on the back. Hold it firmly to your face.  (2) There will be two round sets of holes on each side.  One (or possibly both) will have a gasket in it that keeps room air out as you breathe in and lets the air out when you exhale.  If only one has that gasket, cover the other as you breathe in, so you're getting no room air.  Or tape it closed.   See how this goes, but also consider getting an O2ptimask.  (3) Don't forget about trying to quickly down an energy drink just before you get on the O2.  (4) Hit the O2 at the very first sign of an attack.

Best wishes for success with this.

Share this post


Link to post
Share on other sites

ive had CH for 20 years now, maybe 10-15 years chronic. it kinda slowly developed into that, just got worse and worse.

at some point i just allways felt bad, those shadows never went away and i rarely have  good nights sleep.

verapamil and meditation helps me through it, and im trying this now, since a week.

Share this post


Link to post
Share on other sites

thanks chfather .... spoke to the provider today and they have dealt with several ch patients and the doc just wrote pre "as needed for ch treatment" so hopefully all goes well.

Thanks for all the help thru this.

Share this post


Link to post
Share on other sites
Are ya poundin these energy drinks to ya for these hits at 2 am ? I guess id be cookin breaky cause id still be awake lol 

A lot of people find that the energy drinks don't keep them awake.  Can't promise that, unfortunately . . . just sayin'.

Share this post


Link to post
Share on other sites
Are ya poundin these energy drinks to ya for these hits at 2 am ? I guess id be cookin breaky cause id still be awake lol 

A lot of people find that the energy drinks don't keep them awake.  Can't promise that, unfortunately . . . just sayin'.

Agree.  Silly as it may sound, I (along with most of us) have either built a tolerance to the chemicals, or have just plain learned how to mentally block the chemicals that keep you awake and get you all wired up.  I drink 3-5  16oz. Rockstar drinks every day.  I can pound one and fall asleep 30 minutes later.

Share this post


Link to post
Share on other sites
A lot of people find that the energy drinks don't keep them awake

I was surprised the first couple times I read about it, but now I too have noticed enough CH'ers commenting about being able to fall back to sleep after an energy drink (used to help abort a wake up hit) that the phenomenon is starting to appear typical even.

Share this post


Link to post
Share on other sites

i cna sleep too after energy drink, if ive only had a couple hours sleep.

if i drink it in the evening, though, i cant sleep at all that night. so i only do during daytime.

Share this post


Link to post
Share on other sites
i just drink coca cola. I dont like energy drinks. 
  As you wish, of course, and I realize your situation is different.  But if one is looking for caffeine, which is what most folks think helps with the attacks (plus taurine, which Coca Cola obviously doesn't have), you're not getting much caffeine from Coca Cola -- about 2.8 mg per ounce in Classic Coke and about 3.8 mg/ounce in Diet Coke, versus about 18 mg/ounce in drip coffee.  A 12-ounce Coke Classic has about 34 mg of caffeine; a 12-ounce "cup" of drip coffee has about 215.  For the sake of comparison, 12 ounces of standard RedBull has about 120 mg of caffeine and a two-ounce 5-Hour Energy shot has 138 mg.

Since most people with CH prefer "energy drinks" to coffee as an abortive, you gotta figure it's something other than the caffeine that makes the difference, since an 8-ounce cup of coffee has considerably more caffeine than an 8-ounce standard RedBull and also more than a 5-Hour Energy shot.  I guess that's why taurine is considered an important part of the CH-aborting equation.  I don't know whether the taurine connection has been analyzed in some persuasive way.

Some people have taken taurine supplements, which they believe to have helped. 

Share this post


Link to post
Share on other sites
Since most people with CH prefer "energy drinks" to coffee as an abortive, you gotta figure it's something other than the caffeine that makes the difference,

Taurine dont do squat for me...Those guys haven't tried my coffee..he.he.he. Have to cut it with creamer to make it pour. booohya!!

bb

Good slogan but then Racer would have to leave.....bbbhhhheeeeeeehhhhaaaaaaaawwwwwwhhhhaaaaaaaaaaa...j/k ;D ;D ;D ;) Hackin on ya Beeeuuuullllllll!

02 in Bullshit out...ya baby ya!

oh ya,,I got some chronic...oops wrong thread. ;)

Share this post


Link to post
Share on other sites

Just about bedtime here in the northeast and first night with my 02.Been goin without meds all week preparing to try busting next week.Cant thank ya'll enough for the info and encouragement.Im sure i will be back for more pointers.Sweet dreams.......great bunch on here!

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
Sign in to follow this  

×