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voc417
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Brand spankin new
« on: Nov 4th, 2007, 12:22am » |
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Hi, my name is Steve, and I'm soooo glad I found this site. I've been a cluster headache sufferer for almost 20 years now and its nice to see there are others out there that understand what I go through. I get them every year in the fall and spring, so yes that means I'm getting them now. I'm up looking at this site because I don't want to go to bed because I will just be up in 2 hours beating myself in the head. I take Imitrex nasal spray and stadol. I've tried o2 but that doesn't work for me like I see it does so many others here (I'm jealous). I'm out of Imitrex, but I refuse to go to ER because all they'll do is load me up with narcodics and send me home which although a good time, doesn't work and ususally gives me a killer rebound headache. So anyway, thanks for being here. Looking forward to getting some support.
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CostaRicaKris
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Re: Brand spankin new
« Reply #1 on: Nov 4th, 2007, 1:39am » |
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Hi Steve,
Welcome, sorry you have to be here. I know what you mean about the ER, most of us have been there done that. Too bad O2 doesn't work for you. What about preventatives like Verapamil or Topamax? Also have you tried energy drinks with taurine and caffeine when you start to feel a hit coming on?
This is a great site with lots of info and support. It's helped me out a lot and I hope it helps you to.
Kris
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CostaRicaKris
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Re: Brand spankin new
« Reply #2 on: Nov 4th, 2007, 1:43am » |
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If you're in cycle right now and out of Imitrex, won't the ER at least give you an Imitrex injection?
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MR_FLOOR
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Re: Brand spankin new
« Reply #3 on: Nov 4th, 2007, 1:27am » |
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Whats up Steve,
Have you tried energy drinks yet. Red Bull,Monster anything with the combination of Taurine and Caffeine in it,slam one down at the first sign of being hit,if you catch it early enough it works most of the time. Also do you take any prevents, if not you should talk to your doctor about them.
If it's support your looking for you have come to the rite place. Good luck Bud.
Dave
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RichardN
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Re: Brand spankin new
« Reply #4 on: Nov 4th, 2007, 2:29am » |
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Hi Steve and Welcome
Have to ask . . . . how long ago did you try 02 . . . at what flow rate . . . non-rebreather mask?
Many here did not have 02 work the first time they tried, but after some coaching and the right set-up found it to be effective. I can't take Imitrex so 02 is my only abortive . . . shoud be used early-on in the attack.
Don't discount water therapy (see "water X 3" . . . link on left). I'm convinced it helps reduce the frequency/intensity of hits.
Try Melatonin (OTC supplement), 6-9mg 45 min. before bedtime to help with the night hits . . . . be prepared for some grogginess.
You've much to read and many questions to ask . . . fire away . . . you've found the motherlode of CH information/caring/sharing.
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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CostaRicaKris
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Re: Brand spankin new
« Reply #5 on: Nov 4th, 2007, 10:28am » |
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on Nov 4th, 2007, 2:29am, RichardN wrote:
Don't discount water therapy (see "water X 3" . . . link on left).
Try Melatonin (OTC supplement), 6-9mg 45 min. before bedtime to help with the night hits . . . . be prepared for some grogginess.
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Yes! Melatonin - Sorry Steve. First thing when I woke up I thought about you and kicked myself for not sending you to the drug store for melatonin. I don't have a problem with grogginess - of course I usually follow it with a half a pot of coffee in the morning. I hope you made it through the night ok. Get some more Imitrex. Read up and ask questions, there's a lot of info on this site and a lot of knowledgable people. And if you're up in the middle of the night, you're most likely not the only one, there's always someone here.
Kris
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voc417
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Re: Brand spankin new
« Reply #6 on: Nov 4th, 2007, 11:56am » |
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I'm on Verapamil 240 and Topamax 150. I tried the o2 2 years ago and it was 100% with a non rebreather. I just read about the water and I am trying that. I should be drinking more water anyway. I haven't tried energy drinks yet, but since they seem to work for so many, I'm going to go out and get some today. I am also going to try melatonin. By the way, I had my first pf night last night. unfortunatly it hit me this morning after i woke up. But on the bright side, I got some sleep!! Thanks to you all.
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vietvet2tours
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Re: Brand spankin new
« Reply #7 on: Nov 4th, 2007, 1:42pm » |
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on Nov 4th, 2007, 11:56am, voc417 wrote:| I'm on Verapamil 240 and Topamax 150. I tried the o2 2 years ago and it was 100% with a non rebreather. I just read about the water and I am trying that. I should be drinking more water anyway. I haven't tried energy drinks yet, but since they seem to work for so many, I'm going to go out and get some today. I am also going to try melatonin. By the way, I had my first pf night last night. unfortunatly it hit me this morning after i woke up. But on the bright side, I got some sleep!! Thanks to you all. |
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Oxygen at 15 lpm please.
Potter
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Linda_Howell
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Re: Brand spankin new
« Reply #8 on: Nov 4th, 2007, 2:22pm » |
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Quote:| but I refuse to go to ER because all they'll do is load me up with narcodics and send me home which although a good time, doesn't work and ususally gives me a killer rebound headache. |
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Stadol IS a Narcotic.
Quote:StadolDescriptionfont sizeAAASTADOL®
(butorphanol tartrate) Injection, USP
STADOL NS®
(butorphanol tartrate) Nasal Spray
DESCRIPTION
Butorphanol tartrate is a synthetically derived opioid agonist-antagonist analgesic of the phenanthrene series. The chemical name is (-)-17-( cyclobutylmethyl) morphinan- 3, 14- diol [S-( R*, R*)] - 2,3 - dihydroxybutanedioate (1: 1) (salt). The molecular formula is C21H29 NO2,C4H6O6, which corresponds to a molecular weight of 477.55 and the following structural formula:
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From what I've been told..there are problems "getting off" this drug and several people told me they had to detox and it was not pleasant.
I'm with everyone on the 02..if it didn't work for you it could be that you were doing something wrong.
Try this link, I think it might be helpful.
http://www.ouch-us.org/medications/oxygen/o2info.shtml
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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voc417
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Re: Brand spankin new
« Reply #9 on: Nov 5th, 2007, 12:08am » |
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Well, all that stuff about the stadol was greek to me, but I'll take your word for it. I may try the o2 again. I have an appointment with my doc in 2 weeks and I'll talk to him about it.
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Linda_Howell
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Re: Brand spankin new
« Reply #10 on: Nov 5th, 2007, 11:26am » |
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LOL Please don't take MY word for it at all. I am not a chemist. Take it from the real chemists mouth.
In easier to understand wording.. Stadol is a synthetic Opioid. An Opioid is:
Morphine, Codeine, Oxycontin, Vicodin, Dilaudid or Demerol.
Hoping you give the 02 another try. Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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Rosybabe
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Re: Brand spankin new
« Reply #11 on: Nov 5th, 2007, 11:42am » |
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Welcome aboard Steve!!
Go a nag that Doctor of yours and tell him you mean business  .
Hope your cycle is a very short one!
Pain free wishes..
Rosy.
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JohnMcCloy
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Re: Brand spankin new
« Reply #12 on: Nov 7th, 2007, 12:49am » |
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Welcome.Yes it is always great to know you are not alone.
Try vigorous exercise as soon as you feel a shadow.
GL
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lorac
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Re: Brand spankin new
« Reply #13 on: Nov 7th, 2007, 7:53am » |
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Welcome Steve  lorac
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ski2k
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Re: Brand spankin new
« Reply #14 on: Nov 9th, 2007, 11:06am » |
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Welcome aboard, but sorry you need to be here.
Yup... Linda is right about the stadol. Before I found out about O2 therapy, that's the only thing I was given to "take the edge off" the pain. And it did help with anything under a kip 8. BUT.... After my cycle ended, I would have to try and detox from it! That was not pleasant! My doc gave me two choices... Go into a drug rehab clinic, or try to taper down off it. Since a clinic scared the hell outta me, I chose to taper down off it. It's not easy to do, but I did it. It's a very addictive synthetic narcotic.
Anyway... O2 MUST be used the right way for it to be effective, so I think it's worth trying again. You need to ask your doc about getting a script for 15 lpm (liters per minute) with the non rebreather mask. Some people find using it at even higher rates, like 20 lpm, seems to work even better. Either way... I hope you can get some relief!!
Best of luck, and keep us posted!
Adam
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tessistired
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Re: Brand spankin new
« Reply #15 on: Nov 9th, 2007, 8:20pm » |
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Hello to all! My name is Tess...short for Teresa. I am a 32 year old single mother of 2 and this is my first day here. Thank you for being here and thank you for having me here! I have had my ch's for about 6 years now. First episodic and turned chronic about 4 years ago. It's been especially hard to deal with because my children are only 10 and 6 and when I wake them up in the middle of the night with my sobbing and I scare them because I am begging the Lord to just please please make this end!! It's horrible! And then they look at me with those beautiful eyes and tell me how sorry they are for me having a bad ha. I am currently taking Topomax and Propranolol daily and just today started on Lithium in addition becasuse the other two alone weren't working. I do have a small supply of Imitrex and use it sparingly as well as a Rx for oxygen but cant find a place that will accept my insurance so I dont even know yet if oxygen works for me yet. i hope I get to find out. I didn't know where to start writng so I figured this was as good as any place. I just hope some one sees it right away. Does this site have a chat room? I would like to chat with people if it is possible because i think it is easier than the message board. Mayber its just because Im not sure yet how all this works. Well I am really glad to have found this site and I hope to make friends here. I am praying for the healing of everyone here as well as myself! May the Lord be with us all!
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Linda_Howell
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Re: Brand spankin new
« Reply #16 on: Nov 9th, 2007, 8:40pm » |
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Hey Tess,
I wish you had posted this under your own thread as maybe most won't see it here.
We all want to help. May I have your permission to start your own thread? I can help you with a few of the things you mentioned, but one of the best things about this place is the comraderie and the support.
One of the things I am going to say for you to do right now is to go to your local fire Dept. Tell them you suffer from Cluster headaches and need oxygen. They will and DO every time let you do this. It is at least one of the ways you can tell if it works for you.
I'm waiting for your permission to change this to another thread.
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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tessistired
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Re: Brand spankin new
« Reply #17 on: Nov 9th, 2007, 8:51pm » |
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Thank you for replying! I dont know how to stat my own thread nor did I know I should have...lol. But yes please by all means would you help me with that. I dont know if you caught my question b4 about there being somewhere to chat back and forth...if not would I be out of line to invite you to chat with me on yahoo?
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Linda_Howell
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Re: Brand spankin new
« Reply #18 on: Nov 9th, 2007, 8:58pm » |
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There is this:
http://www.clusterheads.com/cgi-bin/gtchat/chat.pl
Charlotte and Jennifer are there right now...or you can contact me throught a PM (up above) we can chat on msn messenger, my name is calientev8@assisna.com
In fact there are several ways we can talk so just pm me, sweetie. 
thanks for the permission. I will title it...uh...Tess needs advice.
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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voc417
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Re: Brand spankin new
« Reply #19 on: Nov 13th, 2007, 6:47pm » |
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I'm off the stadol. It wasnt hard to quit. just threw it out. I go see my doc tomorrow and I'll ask about o2 again. Maybe I was doing something wrong with it. I think my cycle is winding down too. I'm down to about a kip 7 at the worst now, and that isn't very often. I sure am tired of these damn things though.
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