Author |
Topic: Assistance needed! (Read 576 times) |
|
michael
New Board Veteran
Gender: 
Posts: 244
|
 |
Assistance needed!
« on: Aug 19th, 2007, 1:25pm » |
 Quote  Modify
|
Although I've had CH for 40 years, I didn't know what they were untill about 9 years ago. At that time I was eventually given imigran injections, which took out a hit in about 7 minutes.
I thought that was the wonder drug I'd been looking for but the frequency of headaches in a cycle grew and grew. I have been given o2 but only at 4 l/m. I have recently seen a neurologist that has worked out a regime of o2 at high rate + presedone + verap when my next cycle starts. Luckily my cycles come only every one and two years.
My problem is that between cycles now I get almost daily headaches that start off very mild and build very, very slowly up to probably half way between a kip 3 and 4 and last for most of the day. An imigran radis 100mg tablet will abort in about 30mins and it will not return untill the next day. However, I somehow have the feeling that these tablets are feeding this and a break from them might just stop these headaches.
The headaches come on at about 10 in the morning when I am at work so o2 is out of the question and tapers and verap seem a bit over the top(?). The tablets are an easy way out but they are now starting to concern me. By the way, redbull has no effect.
|
| « Last Edit: Aug 19th, 2007, 1:26pm by michael » |
 IP Logged |
|
|
|
Linda_Howell
CH.com Alumnus
New Board Hall of Famer
Hearing is one thing. Listening is another.
  
 
Gender: 
Posts: 6721
|
|
Re: Assistance needed!
« Reply #1 on: Aug 19th, 2007, 1:31pm » |
Quote Modify
|
What you're describing sounds like shadows to me, but could very well be something else entirely unrelated to CH.
I'm very glad that your new neurologist got you a higher flow regulator than just 7 lpm though.
|
|
IP Logged |
Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
|
|
|
The mad viking
CH.com Alumnus
New Board Hall of Famer
Always Look on The Bright Side of Life
Gender:
Posts: 3135
|
|
Re: Assistance needed!
« Reply #2 on: Aug 19th, 2007, 1:51pm » |
Quote Modify
|
The first "bell ringing"here is stressrelated.Have you checked that possibility out?
Svenn
|
|
IP Logged |
Always Look on The Bright Side of Life
|
|
|
michael
New Board Veteran
Gender:
Posts: 244
|
|
Re: Assistance needed!
« Reply #3 on: Aug 19th, 2007, 2:06pm » |
Quote Modify
|
Yes, I am stressed these days but I don't know how I'd check that out.
My thoughts on these headaches is that during a cycle the only really effective treatment I have been given up untill now has been the injections, and only since using them has the frequency during a cycle increased and only since then has these between cycle headaches built up. Also, the imigran tablets will abort these which tempts me to think they are related to the CH. i just feel now that they may be rebounds.
I just want to get off the triptans but I dont know how.
|
| « Last Edit: Aug 19th, 2007, 2:08pm by michael » |
IP Logged |
|
|
|
andrewjb
New Board Hall of Famer
when the love of power becomes the power of love !
Gender:
Posts: 1239
|
|
Re: Assistance needed!
« Reply #4 on: Aug 19th, 2007, 2:35pm » |
Quote Modify
|
have you tried the water treatment, look on the left. it would also help wash the sumatriptan from you, awful stuff. andrew. 
|
|
IP Logged |
|
|
|
michael
New Board Veteran
Gender:
Posts: 244
|
|
Re: Assistance needed!
« Reply #5 on: Aug 19th, 2007, 2:45pm » |
Quote Modify
|
I'm going to give that a try Andrew. Thank you.
|
|
IP Logged |
|
|
|
Jonny
CH.com Alumnus
New Board Hall of Famer
Give me a shovel Ill dig my own grave!
Gender:
Posts: 26213
|
|
Re: Assistance needed!
« Reply #6 on: Aug 19th, 2007, 2:49pm » |
Quote Modify
|
When I was taking Imitrex shots I got three times the headaches I would normally get, when I stopped taking the shots the HA's decreased.
I now take Zomig nasal spray and there are no rebounds.
Zomig comes in pill form also, ask your doc to try those.
BTW: The Zomig NS works for me just as fast as an Imitrex injection.
|
|
IP Logged |
It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
|
|
|
southwalessunshine
New Board Veteran
Gender:
Posts: 121
|
|
Re: Assistance needed!
« Reply #7 on: Aug 19th, 2007, 4:14pm » |
Quote Modify
|
I relate to what you're saying. i too use Imitrex but only for the bad ones. i have the smaller HAs like yourself, pretty much all day long but the use of the triptans doesn't affect them in any way shape or form. However you could try laying off them to put your mind at rest? You def need 100% 02 at 15 lpm. I got my 1st lot of 02 a few days ago but just before I went to use it discovered I'd gotten 2 lpm. Needless to say the benefits of 02 are still evading me, but I hope you have some success.
|
|
IP Logged |
keep your face to the sunshine and you will never see the shadow.
Alone we can do so little, together we can do so much.
Walking with a friend in the dark is better than walking alone in the light.
Helen keller
|
|
|
Bob_Johnson
New Board Hall of Famer
Gender:
Posts: 1796
|
|
Re: Assistance needed!
« Reply #8 on: Aug 19th, 2007, 4:28pm » |
Quote Modify
|
At least two issues: 1. that a triptan aborts a headache is NOT a definitive sign that you are dealing with a CH; and, 2. for some people, headaches can be changed in pattern/frequency with multiple/high doses of Imitrex.
You might consider trying olanzapine for the "lesser" attacks, saving the triptans for the big ones.
http://www.plainboard.com/ch/chtherapy.pdf
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)
|
|
IP Logged |
Bob Johnson
|
|
|
ClusterChris
New Board Old Timer
Damn Head!
Posts: 280
|
|
Re: Assistance needed!
« Reply #9 on: Aug 19th, 2007, 7:13pm » |
Quote Modify
|
Jonny,
I was just reading about your switch from trex to zomig. Most of the time when I'm in cycle my nose is stuffed like a pig. Just curious as to what you do in this situation. I would love to get off the trex someday but its the onlyreliable option for me at the moment.
Chris
|
|
IP Logged |
|
|
|
Grandma_Sweet_Boy
CH.com Alumnus
New Board Hall of Famer
What Goes Around Comes Around!
Gender:
Posts: 3267
|
|
Re: Assistance needed!
« Reply #10 on: Aug 19th, 2007, 7:16pm » |
Quote Modify
|
Chris - have you tried Zomig? I use the rapi-melt one and it works for me. Just pop it under your tongue. I've not tried any of the nasal sprays but those who do use them think they're great.
Carol
|
|
IP Logged |
|
|
|
ClusterChris
New Board Old Timer
Damn Head!
Posts: 280
|
|
Re: Assistance needed!
« Reply #11 on: Aug 19th, 2007, 8:17pm » |
Quote Modify
|
Yes Carol, I have tried both the pill form and the nasal spray, The pill took too long to work and my nose was always to stuffy to get a good shot of the nasal spray, most of it just ran right out of my nose. I see alot of people posting about trex and rebounds and I am starting to wonder if that is happening with me(but damn it works so good) I get hit pretty much every 4 hours so I don't know. I know one day I will log on to the site and there will be a post about a cure that will be true! Sooner then later I hope! 
Chris
|
|
IP Logged |
|
|
|
Lenny
CH.com Alumnus
New Board Veteran
I love YaBB 1G - SP1!
Gender:
Posts: 213
|
|
Re: Assistance needed!
« Reply #12 on: Aug 19th, 2007, 9:01pm » |
Quote Modify
|
[quote author=ClusterChris link=board=ch I see alot of people posting about trex and rebounds and I am starting to wonder if that is happening with me(but damn it works so good) I get hit pretty much every 4 hours so I don't know.
Chris
[/quote]
I remember starting a post about rebounds and trex appr.5 years ago or so (boy did i get it from some of the members) at the time there was nothing on it"rebounds"...I am the same as you,it is the only thing that helps me with the beast...Here is what i do to help with the rebounds,i will go 3 to 4 days and deal with the beast with no trex(when i am using alot),that seems to help everytime that i do that...I have been doing trex since the (early 90's if i recall correctley)prior to learning the "tip"i have done 7 full "6" on several days... Good luck and PFDAN to all.....Lenny
|
|
IP Logged |
yes a newbie,unfortunately not to the beast!!!Chronic - Clusterhead
|
|
|
Marc
New Board Newbie
Gender:
Posts: 39
|
|
Re: Assistance needed!
« Reply #13 on: Aug 19th, 2007, 10:22pm » |
Quote Modify
|
I'll weigh in here too.
My experience is just like Jonny's (and others) where it always worked, but I got hit far more often. I can't explain it, but I am positive that it works that way for me. I won't use it now.
Zomig NS is my current miracle drug, IF I jump on it at the first sign. Add O2 to the mix and I beat 99% of them.
I do remember when Lenny brought it up years ago, and I don't know if they are actual rebounds - but the fact remains........
BTW - Hi Lenny!
Marc
|
| « Last Edit: Aug 19th, 2007, 10:22pm by Marc » |
IP Logged |
|
|
|
ClusterChris
New Board Old Timer
Damn Head!
Posts: 280
|
|
Re: Assistance needed!
« Reply #14 on: Aug 19th, 2007, 11:21pm » |
Quote Modify
|
Maybe I'll ask the doc for a ns again to try a few times when i'm at home with the o2. Thanks for the info.
|
|
IP Logged |
|
|
|
Lenny
CH.com Alumnus
New Board Veteran
I love YaBB 1G - SP1!
Gender:
Posts: 213
|
|
Re: Assistance needed!
« Reply #15 on: Aug 20th, 2007, 2:24am » |
Quote Modify
|
Hi Marc,
Its been a long time,how are you ? Hope all is well with you and yours...Hopefully your head is doing well with many PFDAN coming your way.............Lenny
|
|
IP Logged |
yes a newbie,unfortunately not to the beast!!!Chronic - Clusterhead
|
|
|
michael
New Board Veteran
Gender:
Posts: 244
|
|
Re: Assistance needed! Update
« Reply #16 on: Aug 25th, 2007, 1:39pm » |
Quote Modify
|
Update!
Doc has put me on Pizotifen 0.5mg tablets 3 times a day to try and break the shadowing headaches.
Leaflet with the tablets says they are used to prevent migraine type headaches, including cluster headaches.
Mike
|
|
IP Logged |
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
Believing is just the beginning!
test rss