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Topic: WELCOME! (Read 49305 times) |
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Kellie
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Re: WELCOME!
« Reply #50 on: Sep 19th, 2004, 6:47pm » |
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This is my second round with cluster headaches. The first time I went off work on disability, this time I have an 18 month old and I have recently started a new job. How do you manage?
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PerryGR
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Re: WELCOME!
« Reply #51 on: Sep 20th, 2004, 6:33am » |
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Hello Kellie,
I'm glad you found the board- welcome- sorry you have to be here though.
There is some great info here- read all you can and try to be proactive about your condition- but there's also tons of support. Talking to people that understand your pain can offer some great relief and it's also a way some of us manage. It is also of great importance that you find a doctor that knows how to treat clusters and build with his help a defense line against these things.
I would suggest that you start a new thread where you could share some more information about yourself ( like how long you've been in this cycle, what medication have you tried, if something had worked in the past etc) so that you'll get more responses from more experienced sufferers than myself.
Again welcome to the board,
Perry.
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Haven't posted in a while so let me re-introduce myself... Male, 25y.o., CCH sufferer for a little bit more than 5 years. Verapamil and Lithium seem to work well at the moment.
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Bodge
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Re: WELCOME!
« Reply #52 on: Sep 26th, 2004, 1:39pm » |
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Hi everyone,
I was happy to read your comments on this post, Im new as of today 9/26,0n my first post I was attacked verbally by member "Johnny" and then he was defended by others for his rude and bigot comments that came from no where other than his own sexual insecurities I have to assume
since it was my very first post I felt this is def not the site for me... I was under the impression it is was a friendly site and I found myself in defense on the first sentence I posted..
Sad that a few can change the impression for many others..
an apology would have been just fine, but I have to judge only by his comments, I would think that the moderator wouldnt allow that behavior....
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Jonny
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on Sep 26th, 2004, 1:39pm, Bodge wrote:
an apology would have been just fine, but I have to judge only by his comments, I would think that the moderator wouldnt allow that behavior.... |
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If you look at your thread you will see there is an apology, savior in it cause it dont happen often my friend 
.....................................jonny
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nancyt
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Re: WELCOME!
« Reply #54 on: Oct 5th, 2004, 9:02pm » |
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im sorry i guess i posted my message in the wrong place but this site seems like it will be helpfull right now im just very unsure of everything and i am scared its a horrible think to watch your loved one go thru
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Phil L
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Re: WELCOME!
« Reply #55 on: Oct 6th, 2004, 1:42pm » |
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Getting to know the site and marvel at all the support and information. It's truly amazing and of considerable help. Have a friend who lost his left arm in VN and has suffered with what sounds like CH for the last 32years.
Never really understood until now. I see my MD again
this Friday morning loaded with knowledge gleened from this site. Thank you, Thank you, Thank you.
Phil
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When I get up in the morning and have to look down to see the grass
I know it's going to be a great day.
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Sisyphus
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At least when its over you can have a beer!
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Re: WELCOME!
« Reply #56 on: Nov 16th, 2004, 11:19pm » |
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Seems I have found the site on the same day as a load of others. I have been up for hours (dreading going to sleep) and have just been rummaging about the site.
It is fantastic but really wierd to think that I am so happy to found loads of people who have the same pain experience as I have. It does feel like Aussie Brian said to me, welcome home, but I am seriously concerned about my work as I may end up spending too much time on this site!!!! Love to you all. jack.
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The gods had condemned Sisyphus to ceaselessly rolling a rock to the top of a mountain, whence the stone would fall back of its own weight. They thought there no more dreadful punishment!
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writer
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Re: WELCOME!
« Reply #57 on: Nov 20th, 2004, 8:24pm » |
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TO "WELCOME," the woman who is trying to help her husband and asked about Sansert.
I took it for a while, and indeed it aborted the cluster attacks. However, for me the side effects were too much to keep on with it. However, of course, everyone is different, and your husband may tolerate it well.
He should know, however, that periodic blood work is necessary when taking Sansert, because it can cause fibrosis of various organs. The drug is a (very) close relative of LSD.
Sorry you and he have to be here, but welcome anyway, and many wishes for the pain to end.
Writer.
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jdiggity
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Re: WELCOME!
« Reply #58 on: Nov 20th, 2004, 8:57pm » |
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I'm new to message boards, so I hope I'm doing this correctly.
I'm just glad to find a site where people understand what I've been going through for way too many years!
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tbradley3663
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Re: WELCOME!
« Reply #59 on: Dec 6th, 2004, 7:18pm » |
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Hello...Finally! After reading some of these letters from the home page, I have have found home. My name is Toby. I'm from Hickory, NC. I'm going on my 5th week of attacks. I'm exhausted.
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nani
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Re: WELCOME!
« Reply #60 on: Dec 6th, 2004, 11:11pm » |
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Welcome Toby- sorry you're here. Look around the site and post questions...there's lots of folks to support you here. Pain free wishes...
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Others may come and go, but MY power is MINE.
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rob
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I've been a member since 2002.never relied much on this forum,even though I watch it intensly.But now I need help.I've been released from my position at my job for filing disality due to ch.I've been offered to stay with my company with a 2/3rd cut in pay.They didn't outright say it was because of my ch's but due to "lost time & lack of performance"Come on lets get real.I need legal advice.Is there any lawyers that you know of who can help me? I'm still under disability.But financiley I can't hang on much longer.Any help would be appreciated.
Thanks.
I wish I could find spell check on this message board.
Happy Holidays
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BangYourHead
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This Site needs a higher google rating
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Re: WELCOME!
« Reply #62 on: Dec 24th, 2004, 9:53am » |
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Hi All,
I'm new to the site , and I'm in.
As for the time of year. yes I saw my second nuero on the winter solstace. Based on my experience and readings. there is a problem with my clock....The good news is eventualy it will get reset.I would be interested in seeing the list of non cronics as a % by latitude...
Anyway..Hi All.
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nani
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Re: WELCOME!
« Reply #63 on: Dec 24th, 2004, 10:01am » |
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Welcome, bang your head, and I'm sorry you're here. I'm glad you found us. We're a nutty bunch that really understands your pain. 
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Others may come and go, but MY power is MINE.
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Cece
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Re: WELCOME!
« Reply #65 on: Dec 27th, 2004, 3:27am » |
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Hey, WOW...glad to have found this site so far. I am a female CH sufferer...have been for about 25yrs. I had been CH free for 3 years until just a few weeks ago....just on time for christmas!!! I thought I was over this hell. Has anyone else had long absences only for the monster to return? I am sooo depressed! Is there a chat group on this site?? I really need someone to chat with..........
thanks!!
Cece
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nani
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Re: WELCOME!
« Reply #66 on: Dec 27th, 2004, 9:15am » |
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Welcome Cece, sorry you're here. When I was episodic (oh how I miss those days) I often had very long remissions. It's terrible when you think you are finally rid of it and it returns. Look at the links to your left. On the headache links there is a mention of Elaine's support group for all types of headaches. Go there in the evening (usually after 7pm Eastern time or later) and there are usually a few clusterheads there. Use the message boards here to read and get info and also to ask questions. This is an awesome bunch of folks who are sincerely interested in helping other clusterheads. Pain free wishes to you.
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Others may come and go, but MY power is MINE.
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Much2Much
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Re: WELCOME!
« Reply #67 on: Dec 30th, 2004, 2:27pm » |
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Hi Everyone,
My name is Steve and my wife is Doreen. My wife is the one with the curse of head pain.
My wife has had head pain since August this year. Originally the pain started on her right side (she describes it as pain deep within her ear). At first it came in the afternoon and got to lets say a 5. We went to an oral surgeon specializing in head pain. He gave her shots of Lidocain all the way in the back of her mouth which gave her temporary relief for a few hours.
It increased in its intensity and I admitted her to the hospital. None of the pain meds that they gave her worked, morphine. The only thing that at that time brought any relief was a shot by a dental resident in the mouth. They released her after three days and after taking MRI's catscans, X-Rays etc. of the head and brain. Everything showed negative.
A week later we were back at the hospital. Same result and this is now the 1st week in October and NO ONE has diagnosed what this damn pain is. We went to ENT's, a Pain Center who prescribed fentanyl pops and duragesic patches etc. and neurologists one of which recommended a nurosurgeon in NY who specializes in head pain and is supposidly well known (Lawrence C. Newman M.D. ,St. Luke's-Roosevelt Hospital. We saw him on 12/20/04 and within 15 to 30 minutes he said she had Cluster Headache. He prescribed a medicine Indocin which ripped up her stomach and made the pain worse and she vomitted for 36 hours ending up with Gastritis and in the hospital that night. We called back and he then said she had to take it and to take sucralfate to keep it down. That worked to keep it down but the pain within 35 mins got worse. The latest script was for Verapamil -120mg. Well this was taken this past Tuesday and 4 hrs later her head pain exploded to a level which left her screaming.
If this is Cluster it has to be a mutant form of it or something else or both. I think from what I have read the next form of treatment should be the Oxygen. I did get a prescrition for Imitrex spay but I'm hearing that it should be monitored while taking it....I don't know anymore. Help us with any thoughts you may have if you can guys!!!
Thanks in advance for any help you can give.
Steve (Sorry to be so longwinded)
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nani
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Re: WELCOME!
« Reply #68 on: Dec 30th, 2004, 2:39pm » |
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Welcome, Steve and so sorry you had to find us. The Indocin will not likely help CH, but it can be used to rule out Chronic Paroxysmal Hemicrania, which presents like CH. Oxygen is probably her best bet. The verapamil dose is kind of low, talk to her doc about increasing it and maybe adding lithium. Verap and lithium together have helped many of us. They both take awhile to get to the proper levels in our systems. If your wife does not have heart problems, I would get the Imitrex filled and she can use it to abort the really bad headaches while she waits for the verap combo to kick in. She needs to take it the moment she feels a bad one coming on. I find a cold pack helps me, too. Oxygen has to be 100% and breathed through a non-rebreather mask. Call her dr and ask for a prescription for it. Look around the boards here and look at the OUCH site (link at left) Feel free to ask us any other questions you may have. Have her come here too. This is an awesome bunch who will offer her much support. Good luck and pain free wishes to her.
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Others may come and go, but MY power is MINE.
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mykemyke
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Re: WELCOME!
« Reply #69 on: Dec 30th, 2004, 8:29pm » |
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Hello everyone this is my first time on this site and I am and happy that i found people that crawl on the floor and yell Like i do (a way to go!) On a more serious note I just came back from seeing my neurologist and he prescribed predisone, have that worked for anyone, i know i haven't had a bad one since i took them, maybe they do work, I not going to jump up and down yet, then i might be dissappointed. I need some feed back and for each one of you that are a clustie- God got your back. Keep prayer. write me someone!
Myke Myke -Philadelphia
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Kris_in_SJ
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There's no place like home.
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Re: WELCOME!
« Reply #70 on: Dec 30th, 2004, 8:39pm » |
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Hi Myke,
Welcome, but so sorry you had to find us.
Prednisone can be a true miracle-worker, especially for those of us who are episodic sufferers. Generally though, it only knocks out the HA's for a short while. It's usually prescribed along with a preventative med like Verapamil (in fairly high doses). By the time you're weaning off the Prednisone, the prevent is kicking in - that's the theory anyway. It works for me, but I still have the fairly regular head-banger that requires Imitrex injections (a true miracle).
Take a look at this link. It was a God send to me and my doc. Best wishes and keep posting!
http://www.future-drugs.com/admin/articlefile/ERN020304.PDF
Kris
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I'm a small woman in small town being chased by a VERY BIG BEAST!
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kitlulu
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Re: WELCOME!
« Reply #71 on: Jan 5th, 2005, 10:33pm » |
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Hi everybody!
Been checking out the site since last week - learned so much about my 'problem' - signed the guestbook- was surprised and moved when one of you wrote to me.
Today, I finally cruised this message board and learned so much about you!!
Although I don't feel very social right now - 'strong threatening shadows' when I thought it was over - it's a relief to know that you great people are here!
I sure hope I can make somebody else feel this way someday.
Kitlulu (Kathy)
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nani
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Re: WELCOME!
« Reply #72 on: Jan 5th, 2005, 11:08pm » |
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Welcome, Kathy. I'm glad you found us, sorry you had to. Stick around, learn a lot, ask questions...join in when you feel up to it...pain free wishes to you. nani
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Others may come and go, but MY power is MINE.
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nuknfutts
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Re: WELCOME!
« Reply #73 on: Jan 23rd, 2005, 6:40pm » |
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Hi, i'm 39 and female from WV and new here, my CH's just started this past week. ( I think they are CH's) At first, it really freaked me out, after the 3rd CH hit, I thought i was having an aneurysm, after extensive research, i'm hoping it is CH. I've had five espisodes in the last two days, and dreading the next one. I tried to explain to my husband what the pain was like, but i couldn't put it into words. Just that it hits out of nowhere. My "episodes" only last 10 to 25 minutes, always over my right eye. I'm nausous and I can actually feel it throbbing if i place my hand over the area. Does this sound like CH?
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Grandma_Sweet_Boy
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Re: WELCOME!
« Reply #74 on: Jan 23rd, 2005, 8:29pm » |
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Hi there - sorry you have to be here but you will at least get some helpful information. Check out all the links to the left, please be sure to do the cluster quiz - that will help you to determine whether this is CH or not. There's a lot of information there - print out what you think is pertinent and perhaps go over it with your physician.
I always hesitate to tell people what I think they have - I'd rather know you've sought medical attention.
Hope your find some answers soon.
Carol
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