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Topic: personal description - from Brazil (Read 377 times) |
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Edu_Martins
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...just a fear of sleep...
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personal description - from Brazil
« on: Feb 2nd, 2005, 12:43am » |
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Hi there, people.
Im from Brazil, and i read this forum for about 6 months, i think, and now im registered finally, and ready to talk about this Clusters...
Im from Brazil, and i dont know anyone here with this kind of disease and problem. In about 8 years or more, i passed through 10 doctors or more, and nothing were found.
So, a friend of my mother told her about a Headache Clinic close to my house. And at this time, i was already searching on Internet about my pain. I discovered this site and many thers, and as i could read, i knew i had Clusters Headache. So i gone to this Headache Clinic and GOAL! They gave me this terrible diagnosis.
I was using injectable sumatriptain to finnish this pain, but there about 4 months this medicine production was stopped here in Brazil. I cant find it anymore, so my problems begun again...
Im using now only oxygen at 100%, and a nasal version of the sumatriptain i used. As prevention for the crisis, im using another medicine, Verapamil (i dont know the english version of this name).
Its really painfull to me, and i have lots of stuff that i cant do anymore, like driking beers with friends and have a good sleeping time.
I just wanted to write something about me and my pain, as i cant find anyone here in Brazil to talk about and exchange some experience...
Really sorry for being here, and many of you, and i must ask sorry for my poor english. I hope you understand all lines of my loooong text. 
See ya around...
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[]s Edu Martins
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nani
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Re: personal description - from Brazil
« Reply #1 on: Feb 2nd, 2005, 1:02am » |
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Welcome Edu and I'm sorry you have to be here. You have found people who share your experience and understand your pain. I urge you to continue to read all you can here and at the OUCH site (link on the left). You will find what treatments have worked for others. I hope you have some answers before you are no longer able to get your medication. Pain free wishes, nani
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sandie99
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Re: personal description - from Brazil
« Reply #2 on: Feb 2nd, 2005, 2:52am » |
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Welcome, Edu...
I am so sorry that you have CH... 
Your CH family will be here, so do come to visit us & let us know how you're doing. Here's always people, who understand.
I'm using verapamil, too. It has made my CHs milder. I hope you'll find meds which work. It takes time sometimes.
Best wishes & PFdays,
Sandie
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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Bob P
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Re: personal description - from Brazil
« Reply #3 on: Feb 2nd, 2005, 7:29am » |
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Edu..
Dania is from Venezuela but this sight may help
http://civilizacionweb.com/cluster
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floridian
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Re: personal description - from Brazil
« Reply #4 on: Feb 2nd, 2005, 9:30am » |
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Misdiagnosis and lack of knowledge among doctors about CH is common everywhere, maybe more so in some places, but there is no Utopia for clusterheads. This is the only article I found on cluster headaches in Brazil - maybe some one at that university can put you in contact with locals that are knowledgeable.
Quote: Cephalalgia. 1999 Jun;19(5):520-4.
Primary headache care delivery by nonspecialists in Brazil. Brazilian Headache Care Cooperative Group.
Vincent MB, de Carvalho JJ. Department of Neurology, Hospital Universitario Clementino Fraga Filho, Universidade Federal do Rio de Janeiro, Brazil.
Headaches are common disorders usually examined by nonneurologists. In order to assess how primary headache patients (IHS groups 1, 2, and 3) are generally managed by nonspecialists, 414 patients were asked about their previous headache care. Correct diagnosis had previously been made in only 44.9%, 6.7%, and 26.7% of the migraine, tension-type headache, and cluster headache patients, respectively. The patients underwent 501 investigative procedures motivated by the headache, averaging 1.21 examinations per patient, mostly EEGs. Preventive treatment was largely overlooked irrespective of the headache type. It is concluded that scientific improvements in headache care may be ineffective unless educational programs improve headache knowledge in general. |
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RichardN
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Re: personal description - from Brazil
« Reply #5 on: Feb 2nd, 2005, 2:57pm » |
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Welcome Edu (short for Eduardo?)
Sorry you're here, but you just joined a great big family of folks who know and understand your pain.
I also use 02 as abortive (can't take triptans) and Verapamil (240 mg) as preventative. I've used as much as 360 mg and there are many here who use much higher doses and combinations of other meds . . . but I'll let them tell you about those.
Melatonin is being used successfully by many here to help with the nighttime hits. Comes in 3 mg tablets and is an over-the-counter med. I use 6mg nightly and it really seems to help reduce frequency and intensity .
Alchohol is also big trigger for me. Quit drinking real alchohol Feb, 02, but have an occasional non-alchoholic beer (.05%) without triggering an attack.
Keep reading, keep posting (your english is fine), let us know how you cope . . . . lots of caring/sharing/info here
Welcome to the family,
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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Edu_Martins
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...just a fear of sleep...
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Re: personal description - from Brazil
« Reply #6 on: Feb 10th, 2005, 3:03pm » |
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Hey all!
I was travelling due to work vacations and Carnival here in Brazil. Not a big surprise: I had my crisis in the middle of the parties. That means: no sleeping time on carnival.
Thanks a lot for the welcome here.
Im using currently Oxygen at 8L and Sumatriptain (nasal) to stop the crisis, and Verapamil (360mg/day) between the crisis. It isn't working as injectable Sumatriptain used to work, but i cant get this version of the medicine now, unfortunatly.
do you all know somone in this Forum from Brazil?
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[]s Edu Martins
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