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txbeck
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Re: I can't do this anymore
« Reply #25 on: Nov 9th, 2007, 2:21am »
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Naka, remember too that what you DON'T take can be equally as important! Avoid anything with alcohol.  Alcohol is a CH trigger, even in small amounts, for most Clusterheads in cycle.  I saw that someone mentioned Nyquil, but that contains alcohol and probably exacerbates CH.  
 
Avoid codeine in particular, and probably any narcotic pain reliever.  Even those that don't make it worse don't help either.  That really sucks, doesn't it?  Aspirin and ibupropen did nothing good for my CH and created so many digestive problems that now I can't take them even for ailments they could help. Tylenol doesn't help, but it seems to do less harm anyway. CHers have enough pain without cultivating a garden of ulcers.
 
I keep 5 gel packs in my freezer at all times, but I also have heat packs handy.  I take Melatonin every night, in cycle or not. Energy drinks seem to work, though they taste awful, but effective medicine is supposed to taste awful I suppose.
 
Then, when you can, get a supply of O2 and a preventative that works for you and tame that beast!
« Last Edit: Nov 9th, 2007, 2:24am by txbeck » IP Logged

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Re: I can't do this anymore
« Reply #26 on: Nov 9th, 2007, 10:24am »
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  Can you believe the amount of help you've found here already?!?! The people here are amazing, for sure!!!
 
  Just had to say welcome to the madhouse, and keep us posted as to how things are going.
 
  As far as your doc telling you most insurances won't cover O2... He's dead wrong! A lot of them will require some persuading, but will cover it. And even on the RARE chance yours won't, you can get the script and pay out of pocket for it. You mentioned you've spent $400 on imitrex shots in a week, and lemme tell ya.... O2 will cost you a fraction of that for a MONTH!! Call around to medical supply companies, and compare prices. I found one that told me I could get on a program that would let me have as many tanks as I wanted each month for... get this... $50 per month!! Bring in the empty tanks, and they'd give me full ones. I'd usually exchange 4-5 at a time (sometimes twice a week, when my cycle was at it's peak), and they were VERY willing to help me out!
   As to your cycle changing... I used to get my cycle every year, like clockwork, from mid-November to mid-January. A few years back, they changed.. I skipped a cycle and thought it was over! Was sooo happy! But then..... I got hit in about May, and it lasted longer than before. Now my cycle runs about every 18 months or so, I'll get hit with a 6-9 MONTH cycle. At most, I go 12 months pain free (from the end of one, 'til the beginning of the next.) So you are definitely NOT ALONE in this!!
   Energy drinks!!! BIG help there!!!! I was almost "impossible" to treat. Never found a prevent that worked for me (until now, but that's another story), and imitrex didn't work either, so I had to rely entirely on O2. And O2 only worked about 60-70% of the time. Nice... But when you get 10 headaches a day, that means 3-4 of them were untreatable. Then I found the energy drink trick here. It's STILL amazes me how well and quickly it works. And you don't need a script for them! How cool is that?!?!
 
Man this turned into a LOOONG post! Sorry...
 
Best wishes, and glad you found us! Keep us posted!
Adam
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Re: I can't do this anymore
« Reply #27 on: Nov 9th, 2007, 12:31pm »
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on Nov 9th, 2007, 2:21am, txbeck wrote:
Energy drinks seem to work, though they taste awful, but effective medicine is supposed to taste awful I suppose.

Try NOS. Major amounts of caffeine and taurine, and it tastes like passionfruit. I kid you not.
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Re: I can't do this anymore
« Reply #28 on: Nov 9th, 2007, 4:36pm »
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  Naka, Here is another tip to use until you can get your 02 and get set up.
 
   Sit in front  an air conditioner and breath deeply and rapidly.  Almost like you're hyperventilating.
 
 At one point many years ago... I was out of 02 and it was a Friday night at about 2 am...I had my supporter  drive me around the block in the dead of winter with me sticking my head out the window.  I don't recommend this but it DID work.  I also never again let myself run out of 02 on a week-end.
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Re: I can't do this anymore
« Reply #29 on: Nov 9th, 2007, 5:15pm »
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Naka,
 
I'm new to the board.  Just wanted to tell you that you came to the right place.  Do whatever it takes to try the O2, but make sure you do it right.  I really think I lucked out here, being a fairly skeptical person, I was reluctant to try something new that might not work when I had my proven way of getting by (45 minute hot shower).  I've only used it for one night, but I was 4 for 4 with O2 last night in knocking back the beast.  I keep energy drinks on hand now as well, and would say they are effective.  I would have known about neither of these if not for this board and the people on it willing to help out those like us.  My best advice: stay natural, stay relaxed, and don't dance...
God Bless,
John
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Re: I can't do this anymore
« Reply #30 on: Nov 13th, 2007, 10:04am »
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Sorry I haven't been on all weekend. On top of the stress of my headaches, I bought my first house and have been trying to move in.  
 
Anyways. I tried the energy drink thing and I think I drank too much...  I was doing my dance and thought the energy drink was gunna come back out.  Eesh...  
 
My doc called me back on friday and gave me some samples of the shot and a script for Midrin...
 
Unfortunitly I used all the shots by sunday and the Midrin did nothing to help the pain. It just made me feel like I couldnt cry. Trapped inside myself with the pain. An aweful feeling.  So with 4 headaches a night I finally lost it and called the doc monday morning, he got me in while I was still having a headache.  So my mom drove me Grin    To make a long story short. They didnt have anymore shots to give me But they did give me some imitrex pills. And a script for Cartia..?  
AND I'm headed to the nuerologist on the 27th. Dent nuerology.
 
So being that I get my headaches at 12:30 on the dot every night. I decieded to take a imitrex pill at 12:00 hoping it would get into my system by the time the devil knocked on my door.  I also took a cartia around 8.
 
I woke up this morning pain free!!!!  No headaches..  
 
AHHHH what a relief to have a whole nights sleep.  
I just hope its not a fluke.  
 
 
Some of you have suggested sitting infront of an air conditioner. That has also been one of the things I swear by, (plus it keeps the washcloth cold)
 
I just bought some ice packs.. and Im keeping my apt with the nuerologist evan if the cartia seems to help my headaches.
 
 
LOL.. my post is all over the place here. I cant keep on one subject... My excitement overwhelms me
That being said.. I have also read somewhere on here that people can not "have had one of those once" (cluster headache)  No joke someone said that to me this weekend at my moms resturant. He 100% said  "yea, I've had one of those once. Worse pain ever. I know what your feeling"  I wanted to laugh..
 
 
Also does it tick anyone else off when someones says you have migraines?  
 
I love this place!!!
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Re: I can't do this anymore
« Reply #31 on: Nov 13th, 2007, 10:19am »
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You've been given some kind and good advice.
 
I am with Brew on this one........YES YOU CAN! None of that talk!!!
 
With regards to melatonin, many find that it makes them groggy at first and I like you felt so fuzzy that doing my dance was that much more of a pain.
However, I increased to recommended doses for CHer's which is much higher than for sleep= 9-12mg in fact they are now suggesting upwards of 18mg.
 
This helped knock out my night time attacks for over a year.
 
As far as Oxygen goes, if you can get a script regardless of what insurance or doctor says YOU NEED TO THEN CONTACT A MED SUPPLIER like APRIA!!!!
They make things happen!
They did it for my O2 and for something for my daughter when insurance wouldn't budge.
 
Good luck and welcome from a fellow NYer albeit downstate Wink
 
Oh yeah, by the map it look slike you are not far from our CHARLIE.
 
Eric
 
edit to add.........try to not be ticked of by migraine remarks. Pain is pain and though ours is documented as the most awful known to man....if someone has only ever stubbed a toe then to them THAT is the worst pain of all. It is important that you educate yourself on our condition but also others so that you do not make the same mistakes.  
 
Congrats on the new house. Now go kick a$$ with life Cool
« Last Edit: Nov 13th, 2007, 10:21am by E-Double » IP Logged

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Re: I can't do this anymore
« Reply #32 on: Nov 13th, 2007, 10:54am »
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I was givin Midrin in the early 80's when my doc was still in the "we'll throw everything against the wall and see what sticks" mode. It did nothing for me either. I know it sounds like a broken record, but really push hard for the 02. It's made me as close to "normal" as a spaz like me is capable of getting!!!
 
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Re: I can't do this anymore
« Reply #33 on: Nov 13th, 2007, 11:58am »
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on Nov 13th, 2007, 10:04am, naka425 wrote:
So being that I get my headaches at 12:30 on the dot every night. I decieded to take a imitrex pill at 12:00 hoping it would get into my system by the time the devil knocked on my door.  I also took a cartia around 8.
 
I woke up this morning pain free!!!!  No headaches..  
 
AHHHH what a relief to have a whole nights sleep.

If this worked for you, you might want to ask for another triptan to take before bed which is actually effective longer. It's called Amerge. When I'm in a bad way, I will take one of those before bed and it's almost a guarantee I'll sleep through the night.
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Re: I can't do this anymore
« Reply #34 on: Nov 13th, 2007, 12:04pm »
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I hope thats what worked... I will try it again tonight. If I have another headache free night I will call the doc and see if they can gimme some of that!!
 
Looking at my medacine cabinet I feel like a friggin druggie!!  LOL
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Re: I can't do this anymore
« Reply #35 on: Nov 13th, 2007, 12:30pm »
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  Glad to hear you got a good night of sleep! Just PLEASE keep in mind, that even if the trex or amerge are working for you, you should really have something else ready to go, too.
   I know it's been mentioned several times in this thread, BUT.... OXYGEN!! It's probably the number one abortive we clusterheads have at our disposal, and if you don't at least give it a try, you're only hurting yourself! When you get a breakthrough headache it's good to have it on hand! Sorry to bring it up again, but (unless I missed it), I haven't seen you post anything about asking your doc to get you a prescription for some. And yes... It's really that important!
   Ok.. I'm done nagging now.  Wink Please understand I'm just trying to help!
 
Take care!!
Adam
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Re: I can't do this anymore
« Reply #36 on: Nov 13th, 2007, 12:33pm »
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Hey Adam,
 
 Actually when I went to the doc on monday I did mention 02 but he said that the nuero will hafta prescribe that and that the insurance will be more apt to pay if it comes from the nuero.  
 
I will be there on the 27th and again ask for 02.
 
And thank you for naggin. It only helps. Smiley
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Re: I can't do this anymore
« Reply #37 on: Nov 13th, 2007, 1:16pm »
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on Nov 13th, 2007, 12:30pm, ski2k wrote:
  Glad to hear you got a good night of sleep! Just PLEASE keep in mind, that even if the trex or amerge are working for you, you should really have something else ready to go, too.
   I know it's been mentioned several times in this thread, BUT.... OXYGEN!! It's probably the number one abortive we clusterheads have at our disposal, and if you don't at least give it a try, you're only hurting yourself! When you get a breakthrough headache it's good to have it on hand! Sorry to bring it up again, but (unless I missed it), I haven't seen you post anything about asking your doc to get you a prescription for some. And yes... It's really that important!
   Ok.. I'm done nagging now.  Wink Please understand I'm just trying to help!
 
Take care!!
Adam

Oxygen is my "drug" of choice - when I'm awake. But when I need to sleep, I need to sleep. I'm sure many here can relate. It's more than silly to me to be hitting the O2 every 90 minutes while trying to get a good night's sleep.
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Re: I can't do this anymore
« Reply #38 on: Nov 13th, 2007, 4:58pm »
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I agree... I would give anything to ensure a 100% good nights sleep. Its hard to function everyday with CH alone but when you arnt getting any sleep either really messes up the day.
 
I feel so refreshed today from not having a CH last night. Although I fear tonight. I fear everynight. I struggle to stay awake.  So that it wont come. I've come to believe the anger I get when I wake up with a CH makes em worse. I can't help but to get ANGRY and curse the world.  I've read the Kip scale and I swear most of my headaches are 9-10's.  Rarely do I ever have less pain than that. (execpt for the first 2 months of my last cycle). But when I have my CH I scream and cry Everytime. I do the dance. I sweat, tear up, runny nose. Rock shake, Stand up, sit down, Lay down. Jump in the shower. stomp my feet. Punch my head in a hammer like fashion. Smack my neck. Kick. Throw a tanrum like a child. and again scream and cry Wander around the house like one of the diffrent rooms I enter may relieve the pain. Or a diffrent seated postion my relieve it. The soreness afterwards last the whole day.
 
I am exhausted... metally, Physically, emotionally,
I apologise to my boyfriend daily bc he can't get a good nights sleep either. I hate 'bothering" him with it. But I have to wake him up. I'm afraid to be alone.  
He asked me what I want him to do. I tell him just listen to me cry... Its wierd I know. But I dont want him to touch me. Or talk I just want him there. Luck for me he is a great support.
I feel aweful, I feel selfish.  
 
My new neighbors must think Im a nut... I hope they dont hear my screams at night.  
 
 Sorry I had to vent a bit. I've come here looking for help and never felt the need to explain the pain. But no one understands quite like you all.....
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Re: I can't do this anymore
« Reply #39 on: Nov 14th, 2007, 9:06am »
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Welcome Naka.
 
Just last week I was screaming the title of this thread..."I cant do this anymore!!"...and Im still doing it, and have been for fourteen yrs, and chronic.
 
I try not to scream that to family or friends because it scares the hell out of them....they worry I may do something drastic, it only took them over thirteen years to take me seriously, thanks to this site...and the info. I printed out from it.  I also printed out responses from other clusterheads....I cannot begin to express my gratitude for ch.com...and to DJ for starting it.
 
You are in a good place now...to arm yourself.  You will be ok.  Just hang in there, and do what you have to.
 
Best wishes to you.   Sherri
 
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Re: I can't do this anymore
« Reply #40 on: Nov 14th, 2007, 2:58pm »
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  Have you tried Melatonin yet for the night time hits? try about 6-10mg about 1/2 an hour before you go to bed... it stops or lessens the frequency of night time hits for a lot of us (myself included). Also, some are finding that Taurine tablets taken before bed seem to help too.  
 
Best wishes,
Adam
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Re: I can't do this anymore
« Reply #41 on: Nov 14th, 2007, 3:39pm »
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Meletonin didnt work much for me before.  Just made everything Fuzzy..
 
 BUT my doc did give me something called Cartia and imitrex pills.  I take the Cartia daily and the Imitrex pills half an hour before i normally get a headache and I have been headache free for 2 nights!!!   I hope its really working!!!  And not just a fluke.. Tricky lil suckers will prob surprise me with a visit tonight.  But I shall cross my fingers and pray...
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Re: I can't do this anymore
« Reply #42 on: Nov 14th, 2007, 3:42pm »
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Sounds like the Trex might be workin for ya!
 
Hope it keeps working!
 
Best,
Adam
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Re: I can't do this anymore
« Reply #43 on: Nov 15th, 2007, 11:40pm »
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I was just wondering if the Trex pills are still helping you get through the night...
 
Keep us posted.
Adam
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Re: I can't do this anymore
« Reply #44 on: Nov 16th, 2007, 10:41am »
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So far no headaches.. Yesterday was wierd though. I kept getting electric shock like pain on the right side of my face every min or so for about half an hour.  No other pain. Nothing Lingering.. Just the "shock". Then later that night. My eye started to hurt and my check bone. But I took a Trex pill right away.  And I didnt have a CH. Soo.. I guess so far so good.  I was skeptical on the pill bc I didnt think It would get into my system fast enough.  Thats Why ive depended on the shots the past 4 years.
 
But Cross my fingers and we will trug on!!
 
Thanks for caring!
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Re: I can't do this anymore
« Reply #45 on: Nov 19th, 2007, 9:27am »
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IT WAS A FLUKE   Cry
 
I had a AWEFUL headache Friday night.  I didn't have anything to abort it.  Soo I suffered through for about 2 and half hours.  
 
Then Saturday night....  It was a 10  and aweful 10.. A 12 if it could be...  I think I told my boyfriend to get a gun and shoot me.. At that point he thought he should take me to the ER. (which was probably a wise idea)  After what seemed like FOREVER. We arrived at the ER. Where my bestfriend joined me. She has been dealing with my headaches for years and was able to tell the doc things I couldnt.  Because I WAS SCREAMING out in pain!!!  Grabbing my head, kicking... I must've looked like a child throwin a temper tantrum..
 
The doc actually knew about cluster headaches and gave me my first expirence with O2.  My headache went away in minutes.  What a relief.  With my sanity intact.. I was embarrassed to see. I was still in my pjs..  donned with slippers.  Matted hair from the shower, and a droopy eye. Was I ever a pitiful sight.
 
We went to the store on sunday and bought 2 imitrex shots...  BUT i used them both last night.
 
I dont go to the Nuero untill the 27th...  I dont know what im gunna do untill then. I cant afford the shots anymore...  
 
I think I'm gunna call my doc today and beg agian for something to hold me over....
 
I heart O2.
 
I do NOT heart..  nights..
 
I hope all is well with the rest of you!!
 
 
Naka
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Re: I can't do this anymore
« Reply #46 on: Nov 19th, 2007, 10:57am »
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If the doctor saw the 02 work for you, will he prescribe it so you can have it at your home????? It's such an awesome feeling to have those little green tanks around your house just begging th beast to bring it on. Sorry about the weekend, sounds like it sucked. Embarassed
 
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Re: I can't do this anymore
« Reply #47 on: Nov 19th, 2007, 11:11am »
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I just called the doc and explained my weekend.. And told em how O2 worked. They are gunna call me back..
 
I did find Kudzu...  What do you suggest for the recomended dosage and when sHould i take it?
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Re: I can't do this anymore
« Reply #48 on: Nov 19th, 2007, 11:19am »
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on Nov 19th, 2007, 11:11am, naka425 wrote:
I did find Kudzu...  What do you suggest for the recomended dosage and when sHould i take it?

 
Read this:
http://www.mushys.com/kudzu/KudzuFAQs.pdf
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Re: I can't do this anymore
« Reply #49 on: Nov 20th, 2007, 9:26pm »
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  Just a suggestion... If your doc still doesn't wanna budge on the O2, maybe get ahold of the E.R. doc that gave it to you, and have HIM get ahold of your doc. He can tell your doc that he witnessed the attack and the results first hand. That might just help. If he STILL won't budge, see if you can have the E.R. doc write you out a prescription for it.  
   I'd also call around and see if any of the O2 suppliers in your area have any programs for you, if you need to pay out of pocket. I've found they can vary in their prices by quite a lot, so call as many as you can. You may get lucky, and find one like the one I did. They let me have as many tanks as I needed for only $50 per month. Since my insurance had a $2,000 deductable, I ended up having to pay for it anyway.  Undecided  Just something to consider.
 
Hope you find relief soon!!
Adam
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