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Topic: WELCOME! (Read 49310 times) |
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cazman
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Re: WELCOME!
« Reply #150 on: Jun 4th, 2005, 10:58am » |
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welcome here and im sorry you are here cause we all know what brought you here and its not a nice thing but for the day i found this site was the day thing started to get better, as they say knowing is half the battle , for me i went years not knowing what i did to deserve such a horrible punishment, i thought all kinds of scary things , is it a tumor, do i have brain cancer, did i do to many drugs when i was younger,did i get this from a bad bang to my head, hell mabey im possesd , .
i cant even count how many times i sat in the er at the hospital in tears begging to be knocked out, while everyone kept saying im over reacting , its just a headache it will go away, ect ect.
today thanks to a click of my mouse on a link on a news web site i foung this site ,when i read the discription of a ch i started to cry and this feeling of relief came over me and for the first time after years a sheer hell i know what it is , i know its workable , im not dying from some strange brain disorder , and single most important thing IM NOT ALONE, today im still a ch head , but i have an arsonal of things to battle this evil heartless beast, and i can help others with what ive learned , in the last yuear ive met two other people that have this and didnt know what it was today they know and we share and talk on the phone when things get bad.
welcome to everyone that is just getting stay aroung the people here my be the only true people youll meet that truly understand what it means to live in hell and they will help you anyway they can to teach you how to fight back and get some sorta piece of mind hang in there and just know your not alone god bless you all and my you have a pf day
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carolyn05
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Re: WELCOME!
« Reply #151 on: Jun 24th, 2005, 7:20am » |
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hi all hows your heads,mine is bad just injected imigran again brilliant stuff,i usually get 3 a day,they came back may 16 without warning.still anouther 2 to go today oh well. keep your chins up there is light at the end of the tunnel i hope cu later carolyn05
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carolyn
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LeLimey
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Re: WELCOME!
« Reply #152 on: Jun 24th, 2005, 9:18am » |
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Hi Carolyn nice to meet you!
Did I read that right? Are you using 3 imigran injections a day? The maximum recommended dose is two. I know how easy and tempting it is to go overboard though  Have you ever tried O2? It is a brilliant abortive and works really quickly.. and no side effects either! Are you on any preventatives such as verapamil either? Take a look at OUCH UK.. specifically under the Treatments button at CD Oxygen and ask your doctor about it. I promise you it will make things alot better for you! You could also give the OUCH UK helpline a ring. Its manned by sufferers (ansaphone, leave your details and they will call you back)
Let us know how you are doing okay?!
Take care
Helen
OUCH UK website
http://www.clusterheadaches.org.uk/home/index.cfm?address=../home/txt_we lcome.cfm&added=Dec2001&code=AD
OUCH UK helpline no 0161 2721702
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paul_pero
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Re: WELCOME!
« Reply #153 on: Jun 30th, 2005, 7:18am » |
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Hi to all
This site has brought about the first pain relief I have had for these headaches in 14 years. All the doctors I saw could not help. They gave me all sorts of stuff. I found this site, got info on oxygen, and after going to a couple of doctors finally got the script for O2. Have used it successfully 4 times so far in 2 days. I have never felt so empowered and happy. I know I will keep on getting the HAs, but now I can at least fight them.
The guys here are so helping and caring. If you are new to this site I suggest you read and read and print up the info that is available and go to your doctor and demand Oxygen.
Paul
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hughb
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Re: WELCOME!
« Reply #154 on: Aug 11th, 2005, 1:45pm » |
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Hi, all...
New to the board. Unhappily, headaches have returned after a 5-year hiatus. During that hiatus, I took verapamil 240 mg SR every day, and exercised regularly. Perhaps this kept them away (I used to get 1-2 month cycles every 6 months or so). Now I've increased verap to 480 mg/day. I don't think its abortive effects have kicked in yet.
Last cycle I did acupuncture and don't think it did any good.
This cycle I'm using injectible Imitrex for the first time. It's a godsend. Headaches disappear within 1-2 minutes after shooting myself up. Normally I get 2 HAs a day (4 a.m. and noontime), so I'm at the Imitrex limit, although my internist said I could take 3-4 injections a day if I really had to. I'd prefer not to.
When I was headache-free, I would run 6 miles a few times a week. When the HAs first came back a few weeks ago, it was always at the end of a run. Needless to say, I have stopped the 6-mile runs. I find, however, that if I do a lesser duration of cardio exercise at a lesser intensity, the headache doesn't come on. Weird. Does anyone else experience this?
This board is great because most people I know don't know a thing about this strange malady. Thanks for running it.
Hugh
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seasonalboomer
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Re: WELCOME!
« Reply #155 on: Aug 11th, 2005, 2:13pm » |
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on Aug 11th, 2005, 1:45pm, hughb wrote:
When I was headache-free, I would run 6 miles a few times a week. When the HAs first came back a few weeks ago, it was always at the end of a run. Needless to say, I have stopped the 6-mile runs. I find, however, that if I do a lesser duration of cardio exercise at a lesser intensity, the headache doesn't come on. Weird. Does anyone else experience this?
Hugh |
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In the past I've been able to narrow it down to activity with prolonged increase in heart rate, over 35 minutes in length when in cycle. Tends to take me a lot of nerve to get out running when in cycle to test further. This time of year, I think that changes somewhat to include exercise of any type that gets you up to that point of feeling red-hot flushed in the face. Simple answer, yes I do. Some others however find exercise helps them abort. Go figure, that's CH for you.
Scott
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seasonal boomer
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jcmquix
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Re: WELCOME!
« Reply #156 on: Aug 11th, 2005, 3:02pm » |
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on Aug 11th, 2005, 1:45pm, hughb wrote:
This cycle I'm using injectible Imitrex for the first time. It's a godsend. Headaches disappear within 1-2 minutes after shooting myself up. Normally I get 2 HAs a day (4 a.m. and noontime), so I'm at the Imitrex limit, although my internist said I could take 3-4 injections a day if I really had to. I'd prefer not to.
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Hi Hugh..
Nice to meet you, sorry it has to be here, but glad you found us, Welcome aboard....
Have you looked at the TREX inj tip to the left... and the other tips there... They are all pretty good.
Be careful with how much TREX you do take in a 24hr period... The tip might help you cut down that 24hr amount, I can abort a HA with 1/3 of 1 shot..
I use the O2 to abort about 90% of my HA's now, but everyone is different...
Wishing You Pain Free Days & Nights
Charlie
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Sandy_C
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Re: WELCOME!
« Reply #157 on: Aug 11th, 2005, 4:32pm » |
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on Aug 11th, 2005, 1:45pm, hughb wrote:Hi, all...
When I was headache-free, I would run 6 miles a few times a week. When the HAs first came back a few weeks ago, it was always at the end of a run. Needless to say, I have stopped the 6-mile runs. I find, however, that if I do a lesser duration of cardio exercise at a lesser intensity, the headache doesn't come on. Weird. Does anyone else experience this?
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Welcome Hugh. Sorry you have to be here but glad you found us. I've been episodic since 1999, with one cycle every year but not all cycles were really bad ones(which is lucky compared to others on this board). It never made any difference during my earlier cycles whether I exercised or not - until this last one. Just getting to the point of sweating and I would get hit -big time. But I also found out that just sitting down to watch a little TV after dinner in the evening, I would also get hit - big time. So, I had to keep busy and active all day (and most nights) without ever really getting enough exercise to get my body heated up, and without being able to relax even just a little at night. Wierdest cycle I have ever had! Can't explain it - just the beast doing his darndest to keep me off balance.
:-/ Hang here. There is a wealth of knowledge and experience with the people on this board. Sending you vibes and hugs [smiley=hug.gif] for PFDAN.
PS without the exercise, I've also gained a pound or two
Sandy :(
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Lean on me when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
Till I'm gonna need
Somebody to lean on
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Jasmyn
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Re: WELCOME!
« Reply #158 on: Aug 14th, 2005, 1:15am » |
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Hi to all the new people and the old!
This is the best site in the world for everyone around the world with CH and CH families.
ALL FOR ONE AND ONE FOR ALL!
Against the BEAST we ALL stand TALL!
PFDAN's to everyone! 
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Jazz 
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JimV
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... Re: WELCOME!
« Reply #159 on: Aug 16th, 2005, 3:37pm » |
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Hi all, New here, will post more later but wanted to introduce myself. I get headaches about 2-3 times a month, Dr. say's they are clusters... I use Imitrex when I get them... This looks like a very supportive group... can't wait to read more but since I'm at work I better get back to work b4 they catch me
Jim in Phoenix
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E-Double
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Re: WELCOME!
« Reply #160 on: Aug 16th, 2005, 4:21pm » |
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Welcome Jim,
Head pain sucks like no other!!
There is plenty to learn here so please do so. There are a few HA that present themselves similar to CH but differ in location, duration and sometimes intensity.
You mentioned 2-3 per month. Do you mean MAJOR BAD ONES and the rest are under contol with preventative meds or really 2-3?
I ask this because Most of us are lucky to get that per day for a certain amount of time if episodic and for those of us who are chronic may get that daily without break for yrs.
I am not a doctor yet here you will find over a milenia worth of CLUSTER and other HA expertise that can help.
Take the cluster quiz located on the menu and see what comes up.
MAny go yrs. misdiagnosed or undiagnosed as something other than Cluster and there are several people we have met that get diagnosed with CH but do not have.
We just want to guide you regardless.
So take the quiz and ceck in again!
Warmest wishes,
Eric
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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JimV
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Re: WELCOME!
« Reply #161 on: Aug 16th, 2005, 5:27pm » |
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TY Eric,
Well, I've had 2 different Docs tell me 2 different things. One said I have Migraines, the other said they sound more like Clusters?? I go through cycles, sometimes I get 2-3 headaches every day (usually in the afternoon) sometimes I can live thru these without taking imitrex (usually take Excedrin or Naproxen sodium followed by Tylenol followed by another dose of Naproxen), they are what I call low-grade headaches... they don't go away but they don't become unbearable during these periods. at other times, they become unbearable and I can usually tell when they are going to get to that point. When they get bad (if the naproxen/tylenol/naproxen doesn't help) I then take Imitrex. They don't go away on imitrex, I just weather them out so to speak. I guess I'd say it this way; I rarely go thru a day without headaches but I only have the bad ones a couple of times a month. My headaches are always behind my eyes and I always get a bad one when cloudy weather rolls in which is one of the reasons the one doc says they are clusters. So, let me know what you think? Thanks again for the welcome and warm wishes!
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E-Double
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Re: WELCOME!
« Reply #162 on: Aug 16th, 2005, 5:34pm » |
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It sounds like it could be a number of different HA types.
If you want to learn about any and all identified HA read through this......the International Headache Societies Frameset:
http://216.25.100.131/ihscommon/guidelines/pdfs/full_form_watermarked.pd f
We are definitely a rare breed and I sure as hell hope it is not what you have.
Pain sucks regardless!!
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Baked
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Re: WELCOME!
« Reply #163 on: Sep 30th, 2005, 9:00pm » |
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Hello all,
You guys are all awsome and great people. You all have made my life and my wifes a little easier to deal with.
Big Hugs
PS
any conventions or get togethers planned?
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niteowl
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Re: WELCOME!
« Reply #164 on: Oct 1st, 2005, 1:36am » |
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Hello to you all. My name is Scott, 35 years young. I am new to this site, but all to familiar with the monster. Been fighting them since I was 18. Sitting here late on Friday night, afraid to lay the head on the pillow. I figure I get them when I'm awake, but much worse at sleep hours. Anyway I guess you all know that, which is a relief, because that way I don't have to explain it to you like I do to everyone else. (they probably think I am a faker or a whiner) So just a little info for you all. Married, two boys 5 & 8, work as a Case Manager for the department of corrections. ( lately I'm the case, due to the cycle starting again) But I'll quit rambling on about that. I look forward to getting to know you and I amhere to help or listen if I can. Talk to you soon.
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nani
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Re: WELCOME!
« Reply #165 on: Oct 1st, 2005, 10:53am » |
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Welcome Baked and niteowl. Sorry you had to find us, but this site has tons of info and support to offer. Read all you can, and ask questions.
Baked, there is a meetings board on the index, look there for local gatherings. There is also our bif OUCH convention every summer. Next years will be held in Milwaukee.
Pain free wishes, nani
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Kim_for_Todd
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Re: WELCOME!
« Reply #166 on: Oct 13th, 2005, 6:12pm » |
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Hi! I'm Kim and my hubby Todd has suffered from ch for 14 yrs. We are both so grateful to find your website and all of the info on clusters! I've been reading EVERYTHING on here for five days now. Thanks to this site, I went with Todd today to the doctor's office and was armed with printouts. He now has oxygen and new meds. I wrote quite a bit about it on the top ch thread under "O2 question" topic.
Thanks to your site, Todd's parents, my family, and some of our friends now know more about ch and have a small glimpse of what he's going through. No one, other than myself, has ever seen him during an attack.
We've been married for over 16 yrs, have a 14 yr old son and an 11 yr old daughter. Todd is an adult probabtion officer and I'm a teacher.
Thanks again for all of the info and the support!
Kim
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LeLimey
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Re: WELCOME!
« Reply #167 on: Oct 14th, 2005, 3:22am » |
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Hi Kim, what a lovely story! I'm so pleased you were able to arm yourselves with info to get better meds for Todd.
O2 sometimes takes a while to get a handle on, don't be afraid to ask for tips on how to use it if you don't feel you are getting the best results okay? The mask is the key issue and you need a non rebreather mask (the one with a resevoir bag) at least.
Let us know how you are both getting on okay?
Regards
Helen
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alchemy
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Re: WELCOME!
« Reply #168 on: Oct 14th, 2005, 5:04am » |
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hi kim nice letter glad the info you found here helped, the people here are great and they're support is wonderful. keep posting and let us know how you're making out.
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ngd
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Re: WELCOME!
« Reply #169 on: Oct 19th, 2005, 2:48pm » |
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Hello all, my name is Neal. I wanted to introduce myself, say thanks for the info, and chime in on my CH experiences.
I began having CH nine years ago at age 21. And have experienced roughly 4 cycles since then. Presently I am enduring a quite intense battle that prompted me to seek out more information on this beast!
My main medication is Maxalt. It does the job if taken before my HA starts, but that doesn't help me much at night. I spoke to a Nuerologist friend of mine who says that the Maxalt may not even be helping me at all. Who knows...My own father is a Internist, and even he claims no cure at this point!
Anyhow, I had a legitimate KIP 9 last night and made it, I am sure they'll get worse, but it is true "misery loves company"
Thanks all!
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Sandy_C
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Re: WELCOME!
« Reply #170 on: Oct 19th, 2005, 3:41pm » |
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Hi, Neal. Welcome to our funny farm. Sorry you have to be here, but glad you found us. This website has probably the most in-depth, comprehensive information on CH than anywhere else in the world. Be sure to read everything you can here because there is so much information that will be helpful to you. Start with the buttons on the left. Take the cluster quiz, check out the Kudzu threads under medications, ask questions. There is no such thing as a dumb question on this site, believe me! I've asked just about all of them.
If you are getting hit at night, try a little cocktail that seems to be helping a lot of us. 9 - 12 mg of Melatonin, plus a Benedryl. Melatonin is OTC, and can be found in the health supplement sections of your drug store (I found mine at my grocery store.)
Jump right in. Someone is here 24/7/365 so you will never be alone.
Sandy
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Lean on me when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
Till I'm gonna need
Somebody to lean on
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ngd
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Re: WELCOME!
« Reply #171 on: Oct 20th, 2005, 1:47pm » |
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Thanks Sandy! I will try that combo!
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kyt
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Re: WELCOME!
« Reply #172 on: Oct 29th, 2005, 10:26pm » |
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I am such a dunder head. I sent a comment and after the comment was sent I find out how to register. Okay I am a fellow sufferer for many years now...too many to count anymore. I am Kathryn but most people call me kyt. I never considered the water treatment but I do drink almost 2 gallons a day so I might float away if I drank anymore. I was on Imitrex injetions for 2 years and one day I clipped a nerve and that was enough for me. They didn't help much but instead of the pain being 200% blinding itdropped it down to about 175% blinding. Well, I am glad I found a group who suffers as well. One thing I would like to share with you is my bboss is a nit wit when it comes to these things. All she tells me is take an aspirin and get over it. Well.... I braved it all this week I actually went to work with a booger of a cluster and she actually told me her sister in law who works there too braved work with a migraine the day before. I yelled at her to look at my face..so she said I could have smeone do my run (i am a bus driver) with me riding along....oh how swell of her... well we all know the outcome i don't want to ramble
oh well once agan I am Kyt and thanks for being here
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tanyae
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Newbie!
« Reply #173 on: Nov 25th, 2005, 10:19pm » |
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Hi everyone! What a great place. I am in the first round of CH, but going on week 5. I had no idea what was happening to me and why everynight I woke in excrutiating pain. Took a week of these before I went to the Dr. He diagnosed migraines. Then I ended up in the ER, and that Dr. said CH. When I asked my Dr. on a followup he said, "Dr's used to seperate migraines and CH, but basically they are the same. Just different symptoms!!
I have watched my husband and daughter suffer from migraines for years, but they were always able to function. I felt like such a weenie that this "migraine" was totally devistating me. Now I know!! There is a difference.
My Dr. prescribed Maxalt. Any responses to that med? I appreciate any advise. Are they going to get continually worse every bout that I have? Will they stop all of the sudden or do they start tapering off? I have 1 and sometimes 2 per night. What are the shadows that I hear people talking about?
Sorry for being so long winded, but I have alot of questions and fears.
Looking forward to getting to know all of you. Just wish it wasn't because of these CH's.
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zanychef
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i'm busting with a masx cant really go wrong can i
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Re: WELCOME!
« Reply #174 on: Nov 26th, 2005, 3:31am » |
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hi Tanyae!!
welcome aboard  sorry you had to find us but be glad as hell you did
best place for you to find out about CH
if your doc say that CH and meegranes are not seperable i would say to stick a hot poker in his eye whilst asking ' got a meegrane?'
i've never taken maxalt so cant say about effectiveness.
try getting him to prescribe oxygen with a non rebreather mask and then get yourself a clustermasx from clustermasx.com
the best thing to do now is read read read ,ask questions read some more then go to the doc armed with an armful of printouts!!
Yours
Ian
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plenty of time to sleep now me headaches aint too bad
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