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Cluster Headache Help and Support >> Cluster Headache Specific >> Time to Vent
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Message started by Roy on Sep 28th, 2008 at 8:49am

Title: Time to Vent
Post by Roy on Sep 28th, 2008 at 8:49am
Hi, I am into my 8th week of CH's. Damnnnnn I now use the 02 with verapamil, hot washcloths and that's it. I am up to 8 to 10 ch's a day now. The kilers come on aroune 11 AM TO 4 PM. Then the short ones show up till 1 am,  I am useing about 8 to 12 "E" tanks of 02 a week.on 6 to 15 litres.At this point of 8 weeks I am completly draind now, no energy, stare at the tv an don't care what's on it. talk with the wife is my only refuge now. She has been a Godsend for me. Just her being here is enough.She is drained too, I can tell but she won't say it, (wives are that way ya know).. After a CH we hug and cry together. My left side of my face and forehead are so tender all the time now, my eye aches a lot now also. this all comes with the territory I guess. Dinner at our house now consists of short quick meals that can be put on hold  till the ch's pass.
This time around with my ch's I have been getting them on my left side as always , BUT they are now starting in my right side and work their way over for 10 to 15 min an hit me hard in the left.
I will fight this lil bastard till he goes  ..........
Sorry needed to vent this morning. getting tired of the pain and not going out because I have so many a day.
thanks gang....Roy

Title: Re: Time to Vent
Post by AussieBrian on Sep 28th, 2008 at 9:04am
Know just how you feel, Roy, and if you're looking for sympathy, empathy or anything at all you've got it in spades with bells on.

Hey, have you tried Red Bull of the other energy drinks yet? A lot of people reckon they're pretty good if chug-a-lugged at the first sign of a hit.

And please say g'day to the missus for me.  I like her already.


Title: Re: Time to Vent
Post by DennisM1045 on Sep 28th, 2008 at 9:06am
Vent away Roy.  That's why we are here.  I hope this ends for you soon.

Forgive me but I have a few questions:

How short are your abort times?  Maybe a higher flow rate (25lpm) could help?
How long are you staying on the O2?  Perhaps staying on longer would prevent some of the reattacks from 11-4pm.

It doesn't sound like you are getting a lot of relief from the Verapamil.  
What dosage are you on?
What formulation are you using (SR vs. regular release)?
How long have you been taking it?

There may be some things that the good folks here can help you tweak to get some relief.  

Give that wonderful wife of your's a hug for me.

-Dennis-

Title: Re: Time to Vent
Post by barry_sword on Sep 28th, 2008 at 9:07am
Sorry you are having a tough time of it, Roy. Sounds like you have one awesome supporter, and that means all the world to a CH sufferer.
Good to hear you have o2 and are using a prevent such as Verapamil. Hang in there, you are with others who know what you are going through.

 Barry

Title: Re: Time to Vent
Post by BarbaraD on Sep 28th, 2008 at 10:13am
I'm with Aussie -- chug a Red Bull at the first sign and then get on the O2 (at the highest flow rate) with a non-rebreather mask.

We all know where you're coming from and are here for ya. Hang in there.

Hugs BD

Title: Re: Time to Vent
Post by thebbz on Sep 28th, 2008 at 12:49pm

Quote:
Damnnnnn I now use the 02 with verapamil, hot washcloths and that's it. I am up to 8 to 10 ch's a day now.
Using 02 for up to 20 to 25 minutes will increase the time between hits.
Add a little caffeine or Redbull and you have another weapon. There are many more out there. Your not down yet. Kick demon a$$ 8-)
all the best
thebb

Title: Re: Time to Vent
Post by flipperlips on Sep 28th, 2008 at 2:15pm
Hi Roy and welcome to the family.  You will find everyone here very helpful.  Vent away my friend.  You will get a treasure trove of advice here.  

Regarding your supporter, get her on the supporters board.  I'm a supporter myself and this place has been a great outlet for me and it just might help her too.

Try not to let the beast get you down.  You only have one life and you need to live it.  The beast wants to get you down and take you away from doing all the things that you love.  Don't let it, kick some demon ass.  I know it's easier said than done.

Hoping for PFDAN for you soon.

Jen

Title: Re: Time to Vent
Post by CH-HELL on Sep 28th, 2008 at 6:07pm
Hi Roy,  Flipperlips/Jen is my wife she is the one that got me to start posting here and Im glad she did.  So go give yor wife a hug for me and try to get her too start posting, it helps the supporters to she will be able to understand a little better.  Your one of the lucky ones like myself that seem to have a good supporter,  my heart goes out to all my brothers and sisters here that dont have that.  Good luck and welcome home..      Phil

Title: Re: Time to Vent
Post by worst pain ever on Sep 28th, 2008 at 6:57pm
Sorry to hear you are in so much pain. I too am suffering well into my 22nd week of chs. I was getting the multiple hits(8 to 10 per day) also. I finally got a little relief when my doc prescribed amitryptaline at 50mgs before bedtime. Now I only get one to two bad hits a day and I use imitrex injectable to fight them off. I don't have O2 yet as I am still waiting for a referral to a neuro.I was where you are just a few short weeks ago and I'm not to far from there now so I Hope you get some relief soon. Hang in there man. :) wishing you PF days soon

Title: Re: Time to Vent
Post by Linda_Howell on Sep 28th, 2008 at 6:57pm
Roy,   if you have a regulator that goes to 15 lpm...please don't try to abort at 6 lpm.  Crank that sucker up as high as it will go.  6lpm wouldn't do anything for me at all.  I'd be just wasting it.  Better yet, if you can afford it...go on E-bay and get a 25 lpm regulator.  The difference will amaze you.

Give your wife a hug from me too.   :-*

Title: Re: Time to Vent
Post by BrianJ on Sep 28th, 2008 at 7:21pm
Hi Roy

Sorry your having such a hard time mate all i can do is agree with the rest of these folks we are here and we understand keep fighting  bro

Brian

Title: Re: Time to Vent
Post by superhawk2300 on Sep 28th, 2008 at 8:47pm
I am sad you are getting so down. And your wife sounds like a beautiful person! Nothing like 2 months of terrible hits to humble me and make me appreciate the good stuff. I am glad you have such a good in home support - it makes a lot of difference!

Hang in there buddy, you've found some allies here so vent away, rest up and get ready to kick some CH ass!

We're pulling for you here! Please report back in as things go on!

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