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Topic: The beast is back :( (Read 496 times) |
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Moridin2002
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I love YaBB 1G - SP1!
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The beast is back :(
« on: Apr 22nd, 2007, 5:50pm » |
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Well as the topic says he is back.
I can start to reintroduce myself.
My name is David im 22 years old and i live in Stockholm,
Sweden. First time i got these awfull headaches (shouldnt be called headaches they should be called something frightening) was when i was 16 years old and
since then i have had them every spring in march
except for 1 year when i was pf.
I thought i was ready for the pain but apparently i wasnt. I hoped maybe it wouldnt come this year since it usually comes in march and when im in cycle i usually get
like 5-7 attacks per week but this cycle is just awfull.
This cycle i get 1-2 attacks just in the morning/lunchtime
and then i am really sore the whole day. I havent had a
pf day since the cycle started (1 week now) and if
i use the o2 i abort the attack but then it will just show
up 1-4 hours later.
Redbull doesnt work for me. The injections gives me
more attacks and i rather not taking pills.
About the o2 im only using 7lpm and a standard mask but my doctor will call me tomorrow and hopefully he
will subscribe me a non-rebreather mask and a
15 or 10 lpm tank.
Anyways the thing that makes me wanna cry or laugh is that you think you remember the pain but when it hits
you, i wonder how people with chronic cluster manage
to work and stuff. I have called in sick from work
now and i will be home for atleast 1 week (so i can play wow and be close to my precious o2 tanks  ) and i
just wanna say that im really happy ive found this place.
Everytime i told my family or friends about the pain and
they just said "its because u sit infront of the computer
to much" Yeah right. I thought i had a brain tumour but
apparently not. When i have an attack its almost that
i wish i had one. Anyways i would be gratefull for some
answers what u guys are doing when u get an attack @
work or what o2 setup you use  .
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BB
CH.com Alumnus
New Board Newbie
I love YaBB 1G - SP1!
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Re: The beast is back :(
« Reply #1 on: Apr 22nd, 2007, 6:51pm » |
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Hello Moridin and welcome,
Sorry to hear you are having a high cycle. Hang in there, it will ease off then stop, and hopefully soon.
Regarding the oxygen, make sure you use higher flow, more like 12-15L/min and with a NON rebreather mask. Once the attack has eased off, turn the flow down to say 8L/min and stay on it for a few minute more. Slowly reintroduce room air, that way you are less likely to get rebound attack.
With the trex injection, stick to 2 only per day, and use the "imitrex tip" that DJ suggested, from the link on the left hand column here. That way you will be able to treat more than 2 attacks per day and still keep the daily dose to the maximum recommended dose. This way you will make the meds last longer and reduce risk of rebound also.
Failing that, you may want to try Zyprexa tablet as abortive. Yes amazingly they work really well and really quickly for many of us. It takes between 5 to 7 mins to work for my husband who is a suffferer. Its much much quicker than the trex tablet.
If you get night hit, melatonin supplement before bed can help, the average dose is from 6mg to 12 mg. Others here also take taurine, magnesium and calcium supplement and they all seem to help. Drinking lots of water and energy drink such as Red Bull also helps with the smaller hits and shadows.
Take time to read the board and you will learn a lot more about the condition, the treatments and the people too.
Take care and painfree wishes to you.
Annette
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ClusterChuck
CH.com Alumnus
New Board Hall of Famer
The BEAST rises again, and again, and again, and .
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Posts: 3181
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Re: The beast is back :(
« Reply #2 on: Apr 22nd, 2007, 10:20pm » |
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The ONLY way to beat the beast, and CONSTANTLY win, is in your own head!
In purchasing real estate, the three most imprtant points, in selecting the right property is (in order):
1. Location
2. Location
3. Location
In dealing with, and beating the beast, the three most important weapons to win (in order):
1. Attitude
2. Attitude
3. Attitude
NEVER let the beast take control of your life. Enjoy your painfree time, between hits. Don't dwell on the hits. Don't let it destroy your life. Live your life, as you always have, with slight adjustments to set time aside for the hits. Don't ignore, or push aside your family or loved ones. Keep them fully informed.
For your oxygen treatment, order yourself the absolute best mask available. It is designed by a fellow clusterhead, and sworn to, by most of us users of it. It is called a ClustermasxTM and can be purchase at www.clustermasx.com ... It is the best $25 (USD) you will ever spend!
Good luck, and ask any questions that you may have.
Chuck
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"No man can be happy without a friend, nor be sure of his friend till he is unhappy."
Thomas Fuller
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Guiseppi
CH.com Alumnus
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Re: The beast is back :(
« Reply #3 on: Apr 22nd, 2007, 10:39pm » |
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Howdy and welcome to the board. If I use only oxygen to abort my headache it will be back within 20 minutes of shutting the tank off. I now take 1-2 oral cafergot tablets as soon as I get that first twinge, then fire off the oxygen. The 02 keeps it at bay while I absorb the cafergot. That'll buy me up to 12 pain free hours.
Sorry ti hear he's back, and I know exactly what you mean. My wife says it's like labor pains, you think you remember how bad it hurts but it really suprises you. Take care guy hoping you have a short cycle this go around.
Guiseppi
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Why are all sensors, seeking intelligent life, pointed AWAY from earth?
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CHater
New Board Newbie
I hope sex is not a trigger, hehe...
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Re: The beast is back :(
« Reply #4 on: May 1st, 2007, 8:06am » |
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Too bad to hear it got back Moridin....
Actually I also got back in the very same day as you, after being PF since december 2005.
I had 'only 3 ' lighter (kip 3/4)attacks since then, but I feel that frequency is increasing.
Don't have my OČ yet and it is public holiday here today, will at least have to wait untill tomorrow. I hope to get through the night with my melatonine and Cafergot.
When in cluster, I also take melatonine 9 mg and a cafergot before falling asleep. Most of the time it works.
But Oxygen still is the best and most relaxing therapy.
I usually also get help from my Osteopath (fysiotherapist), he helped me out of my cluster within 2-3 days for several times now. I hope he'll get me an appointment real quick. I might be able to stop this cluster before it really hits hard.
Try a good fysiotherapist, it is harmless and worked fantastic for me. But be sure he knows what CH is, to get the right manipulation.
I wish you all strength possible !
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It hurts..but relax and stay positive.
Our life isn't in danger by CH, only life-quality is somehow affected.
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chrisw
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I love bunnies
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Posts: 119
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Re: The beast is back :(
« Reply #5 on: May 1st, 2007, 9:23am » |
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Sorry youre having such a hard time. I just broke my none month cycle, I started taking cafergot before bed(I was getting nightime hits), the very same day I started it the beast ran and hid. Maybe you could ask your doc for some preventative meds , maybe prednisone, verapimil(which works wonders for so many clusterheads), cafergot, melatonin, etc. there are alot of preventatives out there, and your doc should be working to try and find the best solution for you. If he isnt you may have to do your own research, and go to your doc and demand better treatment. Also, maybe you should read the info on clusterbusters.com.
Good luck,
chrisw
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EstieSA
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Posts: 63
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Re: The beast is back :(
« Reply #6 on: May 3rd, 2007, 9:17am » |
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on Apr 22nd, 2007, 6:51pm, BB wrote:| ... you may want to try Zyprexa tablet as abortive. Yes amazingly they work really well and really quickly for many of us. It takes between 5 to 7 mins to work for my husband who is a suffferer. ... |
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Can you please elaborate on this ???
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