Author |
Topic: Starting a new cycle... (Read 450 times) |
|
firecracker7481
New Board Newbie
Gender: 
Posts: 29
|
 |
Starting a new cycle...
« on: Feb 28th, 2007, 10:03am » |
 Quote  Modify
|
I want to cry... I have been pain free for 2 years now...and now I am once again dealing with the beast... Yesterday morning I thought itwas just a bad migraine but I realized when the h/a came on this morning I am starting out with light symptoms...
Is there any new research that has come about in the past 2 years to help???I am making an appointment with my neurologist this morning but I am dying in the mean time...
|
|
 IP Logged |
|
|
|
Samiam
New Board Old Timer
I love YaBB 1G - SP1!
Gender:
Posts: 253
|
|
Re: Starting a new cycle...
« Reply #1 on: Feb 28th, 2007, 11:20am » |
Quote Modify
|
Keep your head up and have positive thoughts....yea I know that's hard but you have to. I started with the dreaded symptoms on Sat night. This is coming after being in remission for over 6 yrs. I was devastated but so far I have not had anything other then shadows other then the kip 3's that I had on Sat and Sun. I'm trying to hold it together and praying that I will go right back into remission when my other health issues get under control. Here's wishing you PFN....Support is here for you
Sami
|
|
IP Logged |
What doesn't kill you only makes you stronger!
|
|
|
BMoneeTheMoneeMan
CH.com Alumnus
New Board Hall of Famer
In remembrance of KingCazman. RIP
Posts: 2082
|
|
Re: Starting a new cycle...
« Reply #2 on: Mar 1st, 2007, 9:14pm » |
Quote Modify
|
Keep yo chin up firecracker.
Not sure about new meds. What meds have you taken in the past? did they work?
Oxygen is a good one to try as an abortive.
PF wishes
BMonee
|
|
IP Logged |
"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.
|
|
|
thebbz
CH.com Alumnus
New Board Hall of Famer
Ow,Ow,Ow
Gender: 
Posts: 2181
|
|
Re: Starting a new cycle...
« Reply #3 on: Mar 1st, 2007, 10:34pm » |
Quote Modify
|
Sorry your getting the demon delivery.
all the best
jb
02,02,02
|
|
IP Logged |
It wasn't me I didn't do it
|
|
|
Guiseppi
CH.com Alumnus
New Board Hall of Famer
Gender:
Posts: 2703
|
|
Re: Starting a new cycle...
« Reply #4 on: Mar 1st, 2007, 10:43pm » |
Quote Modify
|
02, 02 and more 02. High delivery regulator with a cluster or non re breather mask. Still my front line abortive!
I've always wondered which was worse, being chronic and knowing it's always there, or us episodics, getting teased with with remissions just to get slammed again. Sorry you're back for more, let us know what you've been using and we'll try to come up with something clever!!!
Guiseppi
|
|
IP Logged |
Why are all sensors, seeking intelligent life, pointed AWAY from earth?
|
|
|
Hikerguy
New Board Junior
My head hurts a little....got an aspirin?
 
Gender:
Posts: 58
|
|
Re: Starting a new cycle...
« Reply #6 on: Mar 3rd, 2007, 11:26am » |
Quote Modify
|
I cant add anything else then what the others have said I seem to get results with Imitrex and o2 although last night i ran out of o2 about 4 min in an a abort attempt  it was a long night wish you many pfdan...Chris
|
|
IP Logged |
|
|
|
firecracker7481
New Board Newbie
Gender:
Posts: 29
|
|
Re: Starting a new cycle...
« Reply #7 on: Mar 4th, 2007, 2:54am » |
Quote Modify
|
Currently I have been put on the Medrol dose pak and am using Imitrex Nasal spray as an abortive...this seems to be keeping me pain free so far, so i am rather excited, but as many of you know...I try not to get to excited until i have been pain free for several weeks with no shadows...
I have not tried o2 yet, my dr feels since I have a good response still with imitrex that he wants to keep me using that which is fine...
Anything is better than the valuum & vicodin mix my dr.s 4 years ago had me on...
|
|
IP Logged |
|
|
|
sandie99
New Board Hall of Famer
Wish it, dream it, do it - inspite the pain!
Gender:
Posts: 10429
|
|
Re: Starting a new cycle...
« Reply #8 on: Mar 4th, 2007, 3:06am » |
Quote Modify
|
I'm so sorry to hear that the beast is back in your life.  But recall: you have had PF time - so you will have PF time again!  May this cycle be a short one for you!
Best wishes & PF days,
Sanna
|
|
IP Logged |
CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
|
|
|
BB
CH.com Alumnus
New Board Newbie
I love YaBB 1G - SP1!
Posts: 0
|
|
Re: Starting a new cycle...
« Reply #9 on: Mar 4th, 2007, 3:54am » |
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 |
|
|
|
daniel96
New Board Junior
I can't avoid but to deal with it smartly.
Posts: 55
|
|
Re: Starting a new cycle...
« Reply #10 on: Mar 6th, 2007, 1:17am » |
Quote Modify
|
on Mar 4th, 2007, 3:54am, BB wrote: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
|
|
Annette nice post. Can I put in on my webpage for future reference hehe?
|
|
IP Logged |
http://www.security6.com/clusterheadaches/ - my oxygen therapy setup
|
|
|
firecracker7481
New Board Newbie
Gender:
Posts: 29
|
|
Re: Starting a new cycle...
« Reply #11 on: Mar 6th, 2007, 10:05am » |
Quote Modify
|
Thanks everyone...I am so glad that I have this site to help me through the cycle...
I only discovered it after my last cycle had ended...
Last night I got hit with an 8, the medrol had kept my ch at bay until I ended the meds...Last night I got slammed...my roomies sat with me and tried to keep me calm. I was so frustrated that I got hit so bad last night that I was in tears...
I am truly lucky to have such great friends...they sat with me brought me lots of caffiene and resoaked my rag in cold water...
I really don't know how I am going to pull through this cycle, but I am glad to have found a great support group...
|
|
IP Logged |
|
|
|
BB
CH.com Alumnus
New Board Newbie
I love YaBB 1G - SP1!
Posts: 0
|
|
Re: Starting a new cycle...
« Reply #12 on: Mar 6th, 2007, 10:21am » |
Quote Modify
|
on Mar 6th, 2007, 1:17am, daniel96 wrote:
Annette nice post. Can I put in on my webpage for future reference hehe? |
|
Hi Daniel,
You are most welcome to use any of my posts however you like
How are you going ? Hope you are well and painfree.
Take care
Annette
|
|
IP Logged |
|
|
|
chrisw
New Board Veteran
I love bunnies
Gender:
Posts: 119
|
 |
Re: Starting a new cycle...
« Reply #13 on: Mar 6th, 2007, 2:56pm » |
Quote Modify
|
dear firecracker,
hang in there. tell your neurologist that you need o2. so many attacks can be brought to an end with it. would your dr rather have you using imitrex all night long? also, imitrex injections work much better than the nasal spray. god, drs make me mad sometimes. imagine telling someone that they should use more imitrex instead of o2.
also, wiht o2 you can save your meds for the times that the o2 doesnt work. because we all know, the imitrex always runs out before we can get another script filled. keep trying to figure out what works for you. personally i have had great success in the past with a combo of prednison, which is a steroid like the medrol dose pack, and verapimil. maybe your neuro needs some help, most of them do.
anyway, firecracker, i know how you feel, i too thought that i was cured. i went for almost 18 mo with no ch. then they started again back in oct. im beginning to believe they will never go away. its soooo depressing to actuallly believe you are better, and then get slammed like you did. hopefully with the right meds and dosages you can stop this cycle in its tracks.
wish you well
chris 
|
|
IP Logged |
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss