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Topic: Who is who here to the newcommers (Read 24294 times) |
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MR_FLOOR
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Re: Who is who here to the newcommers
« Reply #350 on: Aug 5th, 2007, 2:30am » |
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Hey David,
Welcome aboard.You will find this site to be intoxicating.You will be drawn to it like moths to a flame.You will also make many friends here so far you have already found 1.If we could be of any help feel free,ask away.BTW good name.
Dave
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| « Last Edit: Aug 5th, 2007, 2:31am by MR_FLOOR » |
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rollingroscoe
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Re: Who is who here to the newcommers
« Reply #351 on: Aug 5th, 2007, 11:11am » |
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Thanks Dave! I appreciate the warm welcome. I think I'm addicted to this place already. KTSSU (also an old biker term). I had a fairly easy night last night, just 2 short ones. I'm trying the extra water thing with my herbal concoction. We'll see. Have a good one!
David
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Sympatico
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If i have to deal with pain, so be it!
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Re: Who is who here to the newcommers
« Reply #352 on: Aug 5th, 2007, 11:14am » |
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Hi to all the clusterheads,
Yes that's me in good times last year pretty much a week apart from this year! A week before getting hit...
I'm 33, diagnosed 3 years ago with CH but has been suffering in an out since i'm 18! Only episodic on Fall time now i was suffering twice a year when i got diagnosed Spring/Fall...but it seems something broke the twice a year cycle!?!
I was on the Canadian OUCH message board and i met a lot of nice people who helped me dealing with this condition...
Like i said to my best friend it's very nice to see i'm not the only one with problems in the head... 
See ya'll around...
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linaro
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Re: Who is who here to the newcommers
« Reply #353 on: Aug 5th, 2007, 11:53pm » |
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 Hi all. My name is Paulin Aro. Im 39. I'm brand new here. I'm with Cluster Headaches for the past 25 years. Attacks once every 3-4 years but the one attack means up to 5 weeks, daily, hourly brutal pain. I guess we're here all very familiar with pain.
I'm now undergoing my latest cycle of attacks since 1st week July. Was warded in hospital for one week last week and am now, hopefully, towards recovery.
I found this site earlier this month. Got so tired of trying to explain to others what I'm going through and thought there's got to be others like me who's having and/or have had this hellish ride before.
Any friends I can make here with cluster would be comforting. We all would agree that absolutely no one but us will understand what we go through, what we live with.
No painkiller works on me. Imigran helps sometimes but only for a very short time. Same with Oxygen. Pathedien too. When at one of its worst stages of pain, I'm that close to hurting myself, just so I can end the pain.
I'm so exhausted from fighting this for this past one month.
Would so love to hear from any of you guys...
cheers,
Paulin Aro
Malaysia
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SoCal
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Re: Who is who here to the newcommers
« Reply #354 on: Aug 6th, 2007, 10:03am » |
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Paulin,
You've come to a great place for information. Spend time looking around this site going through the message boards and other information here. It's helped me a great deal in discussing CH with my doctors and understanding the affliction. There are many who check-in who know much more than I do who will be able to assist you. Find the message threads specific to the questions that you have or start you own. Those seem to get more attention than the newcommer thread.
The people here are wonderful!
Good luck.
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Guiseppi
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Re: Who is who here to the newcommers
« Reply #355 on: Aug 6th, 2007, 10:30am » |
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Welcome to the board Paulin, you'll find we're a nosey bunch but we're also dying to help you!!!! Please let us know what you've tried, what has and hasn't worked in the past. Don't give up on something that didn't work once, often times success is found in a combination of meds, or in using the meds correctly.
You mentioned oxygen didn't work for you. It's very effective for many but must be used correctly. It has to be started at the first hint of a headache, and you must breathe pure oxygen, using a 'Non Re Breather Mask", at a high flow rate, up to 15 litres per minute. Nasal canulas and rebreather masks don't work.
Please give us a little more detail about yourself and see if maybe someone on the board has suggestions for something you haven't tried yet. We really do understand, welcome to your new second home!!!
Guiseppi
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mike4nu
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Re: Who is who here to the newcommers
« Reply #356 on: Aug 9th, 2007, 3:07pm » |
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Hi folks,
My name is Mike and I currently live in Fort Dodge, Iowa. As many of you were, I had been diagnosed with a bad sinus problem since I was a teenager. Fortunately a few years ago, my regular doctor was gone and his partner told me I might have cluster headaches and referred me to a headache clinic in Omaha where I was living then. I had an attack the night before I had my appointment. I was diagnosed with CH's and given some steroids, lithium, and veralin. The attacks stopped immediately. That was 2.5 years ago. This spring it felt like I was having another episode coming so I started again on the verelin. Even though I had been taking it, I had an episode start in the middle of June. I started back up on the lithium also. Within the last week the attacks have been coming daily, (day and night). My main problem is that I moved 3 hours away from my headache clinic, and i'm in a small town where they don't know anything about CH.
I feel very fortunate to have found this site. I have learned more from reading this site the past day than I have since I was diagnosed. I have an appointment with a local Neurologist tomorrow and I now feel comfortable telling him what I would like to try as far as treatment is concerned. Thank you all for your contributions to this site and I look forward to participating in all of it.
Mike
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GrandPotentate
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mmmmmmmmmm
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Re: Who is who here to the newcommers
« Reply #357 on: Aug 12th, 2007, 11:34pm » |
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Oh, the the good times I've had in Ft.Dodge! Business has taken me some interesting places over the years.
Sorry to hear you came looking, but glad you found this site. These folks have helped me through a lot. There isn't much that I've gone through that hasn't been experienced by others (other than a couple trips to Ft.Dodge). It took several doctors and a lot of time before they figured out my head. Fortunately, my kid's bartender turned me on to this site.
Read up! If you have questions, post them on the appropriate board and they will get pretty quick responses.
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Jon
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shanrich
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Re: Who is who here to the newcommers
« Reply #358 on: Aug 13th, 2007, 10:26am » |
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Hi everyone.... Just found this site after doing research on cluster headaches (As I do everytime a cluster period starts). Seems to be a pretty organized site; lots of information.
I am a stay at home mom of 4 beautiful children. I also attend college on-line to become a school teacher.
I am in toward the end of a cluster period right now. I have had clusters for about 13 years.
A week after I gave birth to my son, I ended up in the emergency room about 10 times in two weeks for the headaches. No one could tell me why at all. It took my 7 years to get diagnosed with cluster headaches (for it was considered a predominately male condition). I went on any drug they would give me at the time; steroids, calcium blockers, etc. Nothing worked at all. Imitrex worked, but not reading the dosage helped (2x's a day doesn't cut it when you get 4 or more a day). Script ran out in 3 days when it was supposed to last a month. Can you say ching ching $$. It was great while it lasted. Given the history of my mom dying from an anyurism and a stroke at a young age, my Dr. took me off it.
I have been dealing with the clusters medication free for 3 1/2 years now. White noise seems to help me cope with it and fall asleep right afterwards. Other than that I don't do anything in particular when one comes on.
+0.
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Rosybabe
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Re: Who is who here to the newcommers
« Reply #359 on: Aug 13th, 2007, 9:17pm » |
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Welcome aboard shanrich!!
I am like you a stay home Mom and hopefuly I will get back to the work force pretty soon  .
Have you try Oxygen??
it is a very good abortive and works for a lot of us and it does not have any side effects.
Read, read a lot in this site and in O.U.C.H. the more your read the better prepare you will be to fight the beast!
Hope you get to feel better soon and please stay with us. We love to get to know new people here.
Light is always on in here!!!
pain free wishes!!
Rosy.
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Guiseppi
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Re: Who is who here to the newcommers
« Reply #360 on: Aug 14th, 2007, 10:22am » |
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Hey Shanrich welcome to the board. I tip my hat to you for going the med free route, several people on the board go that route, not something I'll try!!!
That being said, have you tried oxygen. When i feel one coming on I break out my little e-tank, fire it off and can be completely pain free in as little as 6 minutes. It's been a life saver for me and for many. Which ever route you take, by all means stick aroun, we're an entertaining bunch if nothing else!!!
Guiseppi
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daweimer
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Re: Who is who here to the newcommers
« Reply #361 on: Aug 25th, 2007, 1:33pm » |
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Hi newbie 36yo Louisiana had CH on and off since 1995 (ON RIGHT NOW)  ............looks like a very helpful website! theres actually other people that know what I deal with excited to know theres people I can talk to that can relate to my problem!!
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Groov
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Re: Who is who here to the newcommers
« Reply #362 on: Aug 25th, 2007, 8:31pm » |
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RollingRoscoe:
KOOL CBR. I thought I wouldn't come here too much & bother people, but I saw the CBR and had to chime in.
Looks like you have some stuff in er'
What's it got? I can see lots of personalized touches, but I suspect there is more !!!
I retired my motorcycle shop a few years ago and my son still builds choppers for a mutual friend, so I still have a real interest.
Fast is it?
Cheers, Dave
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| « Last Edit: Aug 25th, 2007, 8:33pm by Groov » |
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PARABELLUM
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Groov
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Re: Who is who here to the newcommers
« Reply #363 on: Aug 25th, 2007, 8:57pm » |
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Ok, maybe I will go back on my word. I hope I am welcome to post my gibberish
I see we have other gearheads here. Maybe I can share a photo or two. This is my new X Runner. 6 speed manual trans. hi-perf. V6, 18" alloy w/Potenza tyres, gas Bilstein shocks, X-Braced frame, loaded with a bunch of good stuff. When I got this a few months ago, I thought it was very kool but needed a horsepower boost. Looked at a supercharger and rear gears. The trans gearing is close ratio, but wrong. That is to say that 1st & 2nd have too much of a ratio difference. With the additional 90 H.P. I might be able to compensate enough for my liking. Those two things would cost 6 grand and kill the resale value when I go to trade it in. So I'm thinkin' about dropping a small block Chevy in. 500 H.P. on pump gas would really put it where I want it. Same problem....it would be too modified for when I went to trade it in in 2 years. So I decided to leave it alone. I thought about all the options I had and what I would gain/lose if I started tweaking it.
Logically, I could just build something much faster and not ruin the X Runner. After a bunch of thought, I will just enjoy it as-is.
I know for non-gearheads this post is likely about as boring as a political speech 
But maybe y'all could post your bike/car for me if you like this kinda stuff.
Cheers, Dave
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| « Last Edit: Aug 25th, 2007, 11:01pm by Groov » |
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PARABELLUM
I do look like my avatar...But I swear to God I am not a bag of aqua colored french fries
Calling an illegal alien an 'undocumented immigrant' is like calling a drug dealer an "unlicensed pharmacist"
The Second Amendment is in place in case the politicians ignore the others!!
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Nienke
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Re: Who is who here to the newcommers
« Reply #364 on: Aug 26th, 2007, 5:24pm » |
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Hi everyone! I'm Nienke and I'm brand new here!
I'll introduce myself ... I'm 21 years old, living in Voorschoten, Holland. I'm still living with my parents, sister (who is going to live on her own within a month or 2) and 2 cats.
12th of July I graduated for nurse.. Now I'm working in a nursery home with people who have dementia. In April 2008 I'll go to Ghana for 14 or 15 weeks to work and travel.
I'm a chronic a-typical clusterhead for 3 years now. Thinking back I had the first episode when I was 14, but we never saw it as cluster headache. February of 2004 I had another episode, but also never saw that as cluster headache. July of 2004 the episode was gone, and August 2004 it was back... Since then it's never been away....
I don't know if al the names are the same in Dutch as in English, but I tried Verapamil, Deseril, Amytriptilline and a lot of other things (I forget and can't look for it now).
I tried acupuncture, natural physician, magnetizing and 4 treatments with heat (trying to confuse the nerve near my nose and the nerve at my C1-vertebra).
The C1-treatment worked for about 2 weeks and then it stopped...
At the moment I'm using Propanolol in combination with Taurine.. It's doing something, but not enough...
At the moment I've one attack at nights and besides that I have chronic headache.
Picture is coming later, don't have one now, because I'm not at home
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Annette
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Re: Who is who here to the newcommers
« Reply #365 on: Aug 30th, 2007, 9:57am » |
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Just realised that I have not posted our piccies on this board, so will do it now.
This is Daniel, me ( Annette ), Edwyn (11) and Andy (8 ), also our labrador puppy Happy
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DWAL
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Re: Who is who here to the newcommers
« Reply #366 on: Aug 30th, 2007, 11:53am » |
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THANKS FOR ALL YOU DO. EVERY ONE HERE IS SO HELPFUL AND KIND. I AM NOW HOOKED ON THIS SITE.
NEW TO C/H ONLY ABOUT 9 MONTHS AND AM STILL FINDING MY WAY TO CONTROL AND UNDERSTAND IT. I HAVE HAD A ROUGH TIME AND IF IT WERN'T FOR THIS SITE AND ALL THAT HAS HELPED I WOULD BE TOTTALY LOST.
THANK YOU,
DAVID
DAVID AND MY WONDERFUL GIRLFRIEND SARAH
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| « Last Edit: Aug 30th, 2007, 12:27pm by DWAL » |
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rtd88
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Re: Who is who here to the newcommers
« Reply #367 on: Aug 31st, 2007, 11:06pm » |
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Hello Everyone,
My name is Rick. Had ch for 28 years. My dad had them forever as well. Been coming to this site off and on for about the last 4 years of course when I'm in cycle. Found the most useful information here and I am incredibly grateful for everybodys input. I am Married 3 years (1st marriage) to a great girl. No kids (by design) but dogs and cats and fish. Probably should have done this before now so sorry. It is very amazing to know you all deal with the beast like me as I have never met anyone who has this except my dad. Anyhow very good to talk to you all.
P.S. Thats my little headache buddy spike
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| « Last Edit: Aug 31st, 2007, 11:09pm by rtd88 » |
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Beastfodder
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Re: Who is who here to the newcommers
« Reply #368 on: Sep 6th, 2007, 7:56am » |
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Greetings to All,
Whilst I've been posting for a few years now – never introduced myself. I'm not actually called Beastfodder and usually answer to Andrew.
46 years old living in the UK just outside Congleton in Cheshire, very happily married with two children. As for the CH it's an episodic thing usually in Autumn although I had a springtime debut this year.
Spent about four years misdiagnosed by my GP – leading to a sinus operation and a deep understanding of coping with being hit without any effective medication. After that life is good – alternatives and O2 have worked really well for me, certainly better than the prescription options which in my mind carry too much of an overhead.
Suppose this is less about me than the brilliant support I've had, both here and from Ouch UK in terms of getting O2 supplies – though I'd really like to see them lighten up a little on their policy on alternative postings!
Speaking of support I've got to mention and thank all those involved with Clusterbusters. Even when properly diagnosed with CH and using prescription meds my episode in 2004 was over 60 two hour plus hits over ten weeks. Since then it's been about 10-15 attacks over five weeks that have been hoovered up with O2 and a clustermask pretty quickly.
Given the above makes it easier to spare you any photographic evidence of me!
As for 'lifestyle' love my wine, Guinness when we're over at the in-laws in Ireland, the odd smoke and try to run up hills to counteract the drinking and smoking. Got a half marathon to do next month which should guarantee a couple of hours of 'quality time' to myself away from a very active 6 year old boy and little girl who's just started walking and is absolutely gorgeous.
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O2 and clusterbusters - naturally
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chandlerda
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Re: Who is who here to the newcommers
« Reply #369 on: Sep 6th, 2007, 4:08pm » |
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Hi All,
I have been perusing this site for the past couple of weeks, and figured it was about time to introduce myself. This site has done wonders for me in the terms of education on this condition and different ways to cope and make it through the tough days and nights... Thanks, it means the world to me!!!
I'm Dave Chandler from Chicago, IL. I have been an episodic clusterhead for 15 years now, diagnosed about 5 years ago. I am married to my wife Juli, and we have the most wonderful 2 year old daughter Dillen.
I am a SAN Engineer by profession and currently work with the Veterans Administration on different SAN related projects and day-to-day SAN operations/administration.
P.S. That is Saddams pool in the background, and yes I do have my 'Corona' pictures next to it.
Thanks All,
- Dave
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lorac
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Re: Who is who here to the newcommers
« Reply #370 on: Sep 6th, 2007, 5:56pm » |
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[i][/i]Hi my name is carol, but my friends have called me lorac for years.. I started having episodic Ch's in 1992, and was lucky enough to be pain free for ten years...
in 2005 they came back, and every other year is my time with the beast...
I am soooo glad to have found this site....What a relief to know others with ch...I have learned so much from these nice people.
I am 53, and now live in tennessee, with the greatest husband in the world. Together we have 3 children, and 8 grandbabies 
I hope together we can somehow bring more awareness about CH to the general public, because I believe there are a lot of misdiagnosed people out there that need our help...
Thank you Thank you Thank you to the person who started this website
LORAC
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DocCissou
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Re: Who is who here to the newcommers
« Reply #371 on: Sep 12th, 2007, 11:12am » |
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Bonjour!
I am Cecile, supporter to my 31 years old boyfriend Stan, who's been suffering from chronical CH for 16 years. Even if I have not seen him going through a whole crisis, since he is taking Imitrex everytime he's got one, just seing him making his injection makes me feel sick in the stomach - I guess all the supporters know the feeling of helplessness.... at the same time I am so grateful this treatment exists, blessed be all the physicians that work on CH!
I've been browsing lots of websites to find out information on how best to support him and understand what he's going through, and I just love the atmosphere of this one;
I have a lot of questions for you guys, but I think here is not the place to ask them, so now I think I'm gonna browse the message board to find a little place where I can post them
Thanks for your warmth and your help
Cecile
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wobwood55
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Re: Who is who here to the newcommers
« Reply #372 on: Sep 12th, 2007, 3:38pm » |
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Hi,
Im Robert, sorry no pic.
Im 27 and this is my fourth year with CH.
Mine start in Oct and go strong until March
the pain starts the second I wake and beats me down until I finally get to sleep.
Getting concerned as Oct is right around the corner.
Anyways, its nice to know Im not alone.
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Father_of_5
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Re: Who is who here to the newcommers
« Reply #373 on: Sep 13th, 2007, 9:07am » |
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New to the message board, but not new to the CH.com website and definitely not new to CH attacks.
We (me, my wife and 5 kids) have been in the Houston area for 9 years now. I've been fighting CHs since '88 or '89. I went misdiagnosed for probably 5 years before I figured out what I had on my own. I'm 43 now and my cycles have changed over the years. The first few years was twice a year, 6-8 weeks each, with each attack increasing in frequency and intensity during the course of the cycle until peaking midway and then regressing.
The good thing is now they come about once every 12-16 months but with no gearing up phase... I start with the bad ones and the cycles run for a couple of weeks. Still looking for the magic combination of meds to abort these monsters.
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DennisM1045
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Re: Who is who here to the newcommers
« Reply #374 on: Sep 13th, 2007, 1:11pm » |
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Hey Father. About time you said hi. I thought you were gonna stand out there in the street forever It's nice to see another guy with a large family here on the site.
Anyway, if you've been fighting this beast this long I'm sure you've tried a lot of things. What works best for me is O2 and energy drinks with Imitrex Injections as backup.
Good luck...
-Dennis-
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Dancing the dance since 1995 ... Family member since 2007 ... No longer alone
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