Author |
Topic: new member and ch sufferer (Read 397 times) |
|
fastfreddy2002
New Board Newbie
I love YaBB 1G - SP1!
Gender: 
Posts: 6
|
 |
new member and ch sufferer
« on: Mar 19th, 2007, 12:40pm » |
 Quote  Modify
|
Goodmorning
I have been a Ch sufferer now for about 12 very long years. the Ch attacks always gets me on the left side. the pain is very intense. before I get an attack I get a really strange sensation in my eye and the rest of my body Like my body is telling me to get prepared. My eye will start to twitch and start to water then my nose and then the sudden Pain. I have tried all the medications nothing seems to work for me. Until, Now. My wife found this website and was reading up on o2 . I went to my Doctor and beggged for a perscription. The minute I feel an attack I hook my self up the 02 for about 15 min the Ch went away. I still feel really tired after an attack even with the o2 but Hey I will take what I can get. I just wanted to thank every one on this website I am finally getting some relief
Its also nice to know I am not the only one and that there are people out there who understand.
|
|
 IP Logged |
|
|
|
ClusterChuck
CH.com Alumnus
New Board Hall of Famer
The BEAST rises again, and again, and again, and .
Gender:
Posts: 3181
|
|
Re: new member and ch sufferer
« Reply #1 on: Mar 19th, 2007, 12:51pm » |
Quote Modify
|
I am sorry to have to welcome you, meaning you have this affliction, but glad you were able to find us, and find some relief! Welcome aboard!
Oxygen is a life saver for most of us. One thing to remember, there may be times when O2 does not work. Don't give up on it! I have had periods of time, where it didn't work at all, but after a time period, it will start working again. I once went about 8 months with O2 not work.
What preventatives have you tried? There are a lot out there, and hopefully you can find one of them works.
Chuck
|
|
IP Logged |
"No man can be happy without a friend, nor be sure of his friend till he is unhappy."
Thomas Fuller
|
|
|
Yorky
CH.com Alumnus
New Board Hall of Famer
learn to meditate (or just sit & do nowt)
Gender:
Posts: 1280
|
|
Re: new member and ch sufferer
« Reply #2 on: Mar 19th, 2007, 12:52pm » |
Quote Modify
|
hi fast fred
did you post last week on" the general posts"board ?
|
|
IP Logged |
today is a gift.....thats why it is called the
present.
|
|
|
fastfreddy2002
New Board Newbie
I love YaBB 1G - SP1!
Gender:
Posts: 6
|
|
Re: new member and ch sufferer
« Reply #3 on: Mar 19th, 2007, 12:58pm » |
Quote Modify
|
I did post last week I didnt think it worked. So I thought I would try again.
|
|
IP Logged |
|
|
|
Rosybabe
CH.com Alumnus
New Board Hall of Famer
"Too much of a good thing can be wonderful!!
 
Gender: 
Posts: 3470
|
|
Re: new member and ch sufferer
« Reply #4 on: Mar 19th, 2007, 2:58pm » |
Quote Modify
|
HI Fred!
Welcome!
Wishing you lots of PFDN!!
|
|
IP Logged |
 Believing is just the beginning!
|
|
|
thebbz
CH.com Alumnus
New Board Hall of Famer
Ow,Ow,Ow
Gender:
Posts: 2181
|
|
Re: new member and ch sufferer
« Reply #5 on: Mar 19th, 2007, 3:10pm » |
Quote Modify
|
It worked Freddy!  Try a look at this. clustermasx.com
all the best and welcome
jb
|
|
IP Logged |
It wasn't me I didn't do it
|
|
|
fastfreddy2002
New Board Newbie
I love YaBB 1G - SP1!
Gender:
Posts: 6
|
|
Re: new member and ch sufferer
« Reply #6 on: Mar 19th, 2007, 4:04pm » |
Quote Modify
|
thanks JB
|
|
IP Logged |
|
|
|
Guiseppi
CH.com Alumnus
New Board Hall of Famer
Gender:
Posts: 2703
|
|
Re: new member and ch sufferer
« Reply #7 on: Mar 19th, 2007, 5:39pm » |
Quote Modify
|
02 is my miracle abort too. Do you take anything as a preventative? I use lithium, others use verapamil, topomax, there are several to read up on. Stick around and let us know what do and don't work for you, this is a work in progress for most of us.
Welcome aboard!
Guiseppi
|
|
IP Logged |
Why are all sensors, seeking intelligent life, pointed AWAY from earth?
|
|
|
fastfreddy2002
New Board Newbie
I love YaBB 1G - SP1!
Gender:
Posts: 6
|
|
Re: new member and ch sufferer
« Reply #8 on: Mar 19th, 2007, 6:16pm » |
Quote Modify
|
I have to be honest I dont take anything for preventitive measures. I Dont ever think of the beast unless I am in a cycle. I do know that o2 is working for me to stop the pain. yahoo
|
|
IP Logged |
|
|
|
thebbz
CH.com Alumnus
New Board Hall of Famer
Ow,Ow,Ow
Gender:
Posts: 2181
|
|
Re: new member and ch sufferer
« Reply #9 on: Mar 20th, 2007, 11:22am » |
Quote Modify
|
Hey FF,
guiseppi is on to something there. The 02 is working and that is good. It is wise to always have a plan B and C. Keep a couple of other aborts around just in case, and if you find a prevent that works with no side effects thats a good thing.
just a thought. Depends on how mean the demon is being.
all the best
jb
|
|
IP Logged |
It wasn't me I didn't do it
|
|
|
Guiseppi
CH.com Alumnus
New Board Hall of Famer
Gender:
Posts: 2703
|
|
Re: new member and ch sufferer
« Reply #10 on: Mar 20th, 2007, 12:31pm » |
Quote Modify
|
And just to clarify....I'm episodic also. My cycles normally run 10-14 weeks. When I'm off cycle I don't think about them and I don't take any meds. When the cycle fires up again, I start my prevent. For me it's lithium at 1200 mg a day, with a 10 day pred taper. If I'm really good at avoiding triggers, I can avoid 90% of the normal hits. I use the oxygen, cafergot and the occasional imitrex jabs to slay the remainder! Wishing you short cycles and LONG remissions!
Guiseppi
|
|
IP Logged |
Why are all sensors, seeking intelligent life, pointed AWAY from earth?
|
|
|
BB
CH.com Alumnus
New Board Newbie
I love YaBB 1G - SP1!
Posts: 0
|
|
Re: new member and ch sufferer
« Reply #11 on: Mar 20th, 2007, 5:39pm » |
Quote Modify
|
Welcome to the family, sorry that you are here with us because of pain but we are glad we can offer you a family with real understanding.
There are heaps of very good information on the Board, just spend some time reading up on all of the threads. Brew some nice strong coffee and make yourself comfortable in the chair and read on.
Regarding medication to control CH, a few things are a must to try, as they work so well for many.
1- Oxygen : cheap and fairly safe, and can abort an attack in mins. Make sure you have a regulator that can go up to 15L/min and a NON-rebreather mask. The best is the clustermasx which can be bought online at www.clustermasx.com. Its designed and manufactured by one of our own Cher, Ben. He is very helpful too.
2- Triptans: such as Imitrex, Zomig, Maxalt etc, also can abort the whole thing in mins. The best is the injection, nasal spray is a bit slower and tablet is pretty useless as it can take up to 1 hr to work.
3- Prednisone taper: for bad or stubborn cycles, can take up to 75 mg per day, tapering off over 5 to 7 days to break the patterns. You need to talk to your doctor about this.
4- Verapamil : doses may vary from 480 mg per day up to 1000 mg, needs to be monitored but can work very well in blocking most of the attacks.
5- For night attacks, try Melatonin from 3mg to 15 mg per night.
6- For day shadows and little ones, try Red Bull , oxygen, strong coffee etc.
7- During an attack, feel around the neck to see if you have a cluster lump, a hot tender swollen ganglion under the skin which is tender to touch, can be on back or side of neck, if you have one, apply ice there, it will help a lot with the pain. It may be inside your mouth, back of tongue on the roof of the mouth too, if its there sucking on ice helps.
8- Come here and share with us your life in cycle, whinge, moan, celebrate .... whatever, we will be happy to listen and give you any emotional/mental support that you may need.
9- If you like to try new things, look at Kudzu, Taurine, Shrooms etc also.
10- Other goodies to be discovered at a later date
Take care and wishing you many PFDAN ahead.
Annette
|
|
IP Logged |
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss