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Topic: New to this and very scared... (Read 622 times) |
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Jellyneen
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New to this and very scared...
« on: Oct 26th, 2006, 5:45pm » |
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Hi everyone.
I just found this site today and it makes want to smile and cry at the same time. I am glad they have a site for us clusterheads, but I want to cry because I finally feel I am not alone. No one I talk to seems to "get me" but after reading the other message boards I know you all will.
I am currently going through my 2nd cycle of CH's. I am on week #3 - 4 and the headaches are not letting up. I get about 3 a day. I am exhausted!!! Mentally and physically. I cant remember the last time I slept through the night without a 2am - 3am CH disruption.
I am always worrying that I am going to run out of my meds and I cant get a refill. Does that ever happen?
Also, my DR just put me on Calan aka Verapamil. Anyone else on this?? Does it help?? If yes, how long after you started taking it did you notice a difference??
Anyone try the Imitrex tip??? Did it work???
Sorry for the rambling of questions, but I am so excited about finding this site.
I would appreciate any comments that you all think would help.
Thanks and I hope we all get a full night sleep tonight.
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Kevin_M
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Re: New to this and very scared...
« Reply #1 on: Oct 26th, 2006, 6:03pm » |
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on Oct 26th, 2006, 5:45pm, Jellyneen wrote:| Also, my DR just put me on Calan aka Verapamil. Anyone else on this?? Does it help?? If yes, how long after you started taking it did you notice a difference?? |
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Yes, calan, the verapamil is a good preventative for some, which can take up to two weeks to get to an effective level. Right now I'm at 480mg a day and it helps immensely and gets me through nights with sleep.
As a second abortive option to the Imitrex, oxygen works very well too for the hits. It's hard to keep as much Imitrex as you would need without a preventative working for you.
Glad you found us, ask away about anything. Welcome
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| « Last Edit: Oct 26th, 2006, 6:32pm by Kevin_M » |
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Sean_C
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Re: New to this and very scared...
« Reply #2 on: Oct 26th, 2006, 6:12pm » |
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Hi Jelly, don't be afraid to ask questions, lots of experienced clusterheads here to talk too, but keep in mind none of us are docs, and you should follow his instructions on your meds, don't duplicate what we are using, everyone here on meds is under thier docs supervision.
Try to hang in there, the pain will always go away, that I'll promise 
Have you tried o2 ?? Also its important to get a regulator for 15 liters per minute and I would suggest a clustermasx (you can google that and it should come up) Its helped alot of folks here who use o2 
Painfree wishes headed over,
Sean...................................................
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| « Last Edit: Oct 26th, 2006, 6:13pm by Sean_C » |
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Jonny
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Re: New to this and very scared...
« Reply #3 on: Oct 26th, 2006, 6:43pm » |
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on Oct 26th, 2006, 5:45pm, Jellyneen wrote:| Anyone try the Imitrex tip??? Did it work??? |
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Yes, the tip works excellent...the owner and webmaster (DJ) of this site came up with it.
Keep reading!
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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
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TxBasslady
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Re: New to this and very scared...
« Reply #4 on: Oct 26th, 2006, 6:56pm » |
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Most of the meds, like Verapamil, take a few days to get in your system.
Lots of folks here stockpile their meds. If you have a Rx that has refills, fill them as soon as your insurance will allow. Some insurance co's allow a limited amount of refills...over a set period of time.
Like Sean said, definitely check with your doc on the 02. It works great for alot of us.
Feeling scared is something we've all experienced. Feel free to come here when you're scared....and always ask any questions you might have.
Someone usually here 24/7. We never close 
PF vibes headed your way...Best wishes to you.
Jean
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thebbz
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Re: New to this and very scared...
« Reply #5 on: Oct 26th, 2006, 9:02pm » |
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Welcome and dont be scared to ask ????.
read,read,read
all the best
jb
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BB
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Re: New to this and very scared...
« Reply #6 on: Oct 26th, 2006, 9:26pm » |
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Hello Jellyneen
Its normal to feel scared when you are new to all this and not sure what to expect. Its the unknown that scares you and so get into the "known" as quickly as you can by reading all the infos here.
There are lots of really wonderful tips and advices to be taken in, chewed over and trialed, anything that doesnt fit you specifically you can spit out again, but as BBZ says, never be too scared to ask, we like to answer
Verapamil works well but needs to be monitored as it can drop your blood pressure, takes about a week to have full effect and can be increased in doses if necessary. Imitrex can work very well to stop a headache in 5 to 20 mins. So both are good to start with.
Also oxygen as suggested is great, please please please do try.
Another good one is Melatonin at night, can stop the night attacks as well as help reducing some day ones. It is a natural supplement and you can buy it online or at healthfood stores. Usually people start at 6 mg per night then increase by 3 mg every 2 day or so until it works well, some may take as high as 18 mg. The usual dose is around 9 to 12 mgs.
Take care , keep asking, and share with us how you go.
Annette
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| « Last Edit: Oct 26th, 2006, 9:28pm by BB » |
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Jellyneen
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Re: New to this and very scared...
« Reply #7 on: Oct 26th, 2006, 10:01pm » |
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Wow... what a quick response from you all. THANK YOU VERY MUCH!!!!!
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kcopelin
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Re: New to this and very scared...
« Reply #8 on: Oct 26th, 2006, 11:08pm » |
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Welcome home!
PFDAN
kathy
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leftsideonly
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Re: New to this and very scared...
« Reply #9 on: Oct 26th, 2006, 11:31pm » |
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Hi and Welcome,
I am also new here but not to the clusters. I hope you are made to feel as welcome here as I do. It is nice to have someone to talk to that you know understands like nobady else can. I to am scared of my next hit - I think we all are to a certain extent - the point is though to fight it with the help you your doc and suggetions you get here. I was a little like you when I found this site - except I cried alot more then laughed. #1- for finally finding someone that knows what it is like. and #2 my heart breaking for all the other people suffering with this insane amount of pain.
Having said that read as much as you can - thats what I have done and tried some of the suggestions found here. Two that seem to be working for me now is "Red Bull" energy drinks during the day and Melatonin 45 min before bedtime. The other thing that works well for me is ice cubes to suck on and a ice pack for the neck and face(where ever it hurts).All are cheap and available without presciption. Above all keep a positive attitude and remember your not alone anymore.
Peace and PF wishes,
Andre
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chewy
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Re: New to this and very scared...
« Reply #10 on: Oct 27th, 2006, 6:53am » |
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Verapamil and trex.
Wont leave home without it.
480mg a day takes about a week to become effective.
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Kevin_M
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Re: New to this and very scared...
« Reply #11 on: Oct 27th, 2006, 9:58am » |
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Hi Jneen
Just as a matter from my experience with verapamil, all lengths of time mentioned here for it to be effective are technically correct.
You asked if it worked, and for me effective results were felt at 480mg. However, if as first time user, a gradual ascent could be taken, lengthening that time to be effective, whereas the effects can be felt from it in a week at an effective level it is dependant upon the amount needed and recommended time to get there, many of us are already familiar with its effects and level needed individually.
If perhaps I was to decrease to 360mg, the effects for me are felt in about 48 hours, which was also mentioned. Increasing from 360 to 480 would also be felt in about 48 hours for me. A doctor's guidance is important with any new drug.
Just personal experience, hope its not confusing.
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| « Last Edit: Oct 27th, 2006, 10:01am by Kevin_M » |
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Charlotte
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Re: New to this and very scared...
« Reply #12 on: Oct 27th, 2006, 10:47am » |
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Hello and welcome.
Charlotte
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Jobette
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Re: New to this and very scared...
« Reply #13 on: Oct 29th, 2006, 12:59am » |
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Don't be scared of this. I have been TRYING to deal with this a long time and am learning to cope with it better. You can learn some good things here and there seems to be some good people here, but somethings you will have to learn on your own. I know that it doesn't seem like it when you are going through the pain, but you will make it through. I personally have found that it helps me when I try to help others to deal with this condition. So welcome to Clusterville, and read as much as you can. Oh yeah you can run out of meds, but then you learn to stock pile for the next time. There WILL be times when you think that you can't make it through but you can. We always do, just hang in there and hollar if you need me. Jobette
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RichardN
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Re: New to this and very scared...
« Reply #14 on: Oct 29th, 2006, 1:17am » |
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Hi and Welcome
Another vote for 02 here . . . I can kill the beast in minutes if used early-on in the attack . . .MINUTES MATTER . . . especially since the attacks can ramp up so quickly.
You will need a script from your doc for the 02. Copy info off this site and take in with you . . . don't leave his/her office without it. You will need a 15 lpm regulator and a non-rebreather mask (the one with the bag) or Clustermask. Works for 60-70% of us to abort an attack.
You've much to read and many questions to ask . . .fire away . . . we're all in the same boat here and truly understand the pain, the fear of the pain. One of my favorite mottos on this board is, "Nothing works for everyone, but SOMETHING works for everyone", and here you have a very good chance of finding the "something that works for you.
Oh . . . regarding the Melatonin . . . don't be surprised if you wake with a certain degree of grogginess . . .takes a little getting used to.
Be Safe, PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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Mattrf
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Re: New to this and very scared...
« Reply #15 on: Oct 29th, 2006, 1:56pm » |
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Welcome to our little funny farm, I am so sorry you had to find us but glad you did.
There has already been some great tips above but also read as much as you can and print it out and take it to your doctor, most of the time they do not know that much about CH so it helps you to help them. Also check out the Ouch site the link is on the left here is also a link to one of there pages with a lot of information.
http://www.ouch-us.org/chinfo1.htm
There is also a letter to friends that explains what you have but I can’t find it right now, anyone know the link?
Matt
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There is no stronger a person then one who can deal with brain pain and still function.
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chopmyheadoff
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Re: New to this and very scared...
« Reply #16 on: Oct 30th, 2006, 7:46am » |
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verapamil saved my life (probably quite literraly)
im on 480 per day and am pretty much pain free .
good luck girl - and welcome 
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prcole18
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Re: New to this and very scared...
« Reply #17 on: Oct 30th, 2006, 12:14pm » |
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Same as Chop above, i'm on 720mg Verap & works a treat!
If I do get a breakthrough out comes the Imigran jab which kills it within 2-3 minutes.
Good luck to you & hope you get PF soon
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Stju1970
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Re: New to this and very scared...
« Reply #18 on: Oct 30th, 2006, 2:09pm » |
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on Oct 26th, 2006, 5:45pm, Jellyneen wrote:Hi everyone.
I just found this site today and it makes want to smile and cry at the same time. I am glad they have a site for us clusterheads, but I want to cry because I finally feel I am not alone. No one I talk to seems to "get me" but after reading the other message boards I know you all will.
I am currently going through my 2nd cycle of CH's. I am on week #3 - 4 and the headaches are not letting up. I get about 3 a day. I am exhausted!!! Mentally and physically. I cant remember the last time I slept through the night without a 2am - 3am CH disruption.
I am always worrying that I am going to run out of my meds and I cant get a refill. Does that ever happen?
Also, my DR just put me on Calan aka Verapamil. Anyone else on this?? Does it help?? If yes, how long after you started taking it did you notice a difference??
Anyone try the Imitrex tip??? Did it work???
Sorry for the rambling of questions, but I am so excited about finding this site.
I would appreciate any comments that you all think would help.
Thanks and I hope we all get a full night sleep tonight. |
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Hi and welcome,
I have been taking Depakote and Verapmil thus far. It seems to work for me for now. I do have drawback, after taking medication, I feel nausea, dizzy, and minor swing in moods. Does anyone take the same drugs as I do and feel the same way?
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| « Last Edit: Oct 30th, 2006, 2:10pm by Stju1970 » |
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Kirk
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Re: New to this and very scared...
« Reply #19 on: Oct 31st, 2006, 1:45am » |
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Welcome. Please be well, and always feel free to ask questions.
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