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Topic: Who is who here to the newcommers (Read 24365 times) |
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Asia
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The only constant in the world is change.- I. Arie
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Re: Who is who here to the newcommers
« Reply #225 on: Nov 6th, 2006, 11:13pm » |
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So I'm not alone. Wow. Sorry this will be long, but please read!
I'm Asia, 33, I have a 17 year old son in college...
I've had CH since I was about 12. Mother and family thought I was "being dramatic" until later years when they got worse (my mother once asked if I had been using drugs when I was rushed to the ER). I didn't see a neurologist until I was in my 20's, formally diagnosed only about 5 years ago.
I have never had "consistent" insurance, except for Medicaid when my son was born, but I was so young, I didn't know how to go about seeing the right doctors. I almost wish I could have the space and your attention span to tell you about some of the things I've gone through, just to get them off my chest, but I won't.
I usually get them about 1-3 months out of the year, not always the same months. In each episode, it's on one side only, but can change sides on a "new" episode. After reading many posts here, for the first time I hear people saying that they're going through the same symptoms...even though doctors and my own research painted the CH picture, I've never met anyone with them. NOTE: The only thing I've still never heard being the same is that on the side of my HA, that arm and leg becomes sensitive to pressure sometimes, and it hurts to use them at the worst of the HA.
I'm in the longest cycle I've ever been in (4 months). I still don't have insurance, and even to get it now would make it a pre-existing condition. Trying to apply for Medicaid, but I just found out it will take a month (had it in New Orleans where I am from, but that does me no good here.)
I just practically begged an ER doc yesterday to give me Prednisone and painkillers, while I continue to try to get regular doc care. I am getting too close to feeling like there's no hope that they will end, even though my mind tells me they will.
I've been in restaurant mgmt for years...finally reaching the conclusion after many lost jobs and getting THIS broke that I can't do that work anymore. I don't leave the house, don't see friends, don't do anything but wait for the next headache. I have plans to finally try to start my own business...so that if I do have to live with this, at least I won't have to tell ME that I have to quit. I'm a poet and spoken word artist, with a self published book...when I'm not in the 'Ville, I perform a lot and do community work.
I know it's time for my life to change, do things differently, and I'm glad to have found this site. Thank you so much for sharing your lives...you just might be saving mine.
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| « Last Edit: Nov 6th, 2006, 11:59pm by Asia » |
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ferrie
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Re: Who is who here to the newcommers
« Reply #226 on: Nov 8th, 2006, 7:20am » |
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HiI am Julie, 56 from the UK. I found this forum just now as I was desperate and searching the net for some answers. I hope I find some as I am really down.
I have had CH for 6 years but only last year was told that was what I had. I get them every September for about 8 -10 weeks constant and sometimes in the Spring of the year. They never stop in that time, even when I try to sleep. I have tried various treatments but nothing seems to help so far. I dont even go to the doctors now as they just send me away.
Edited to add: I also have CFIDS, which doesnt help!
I am going to read through this forum to see if I can understand the CH better and then I might not feel so bad........................I am please that I found this place.
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| « Last Edit: Nov 8th, 2006, 7:23am by ferrie » |
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LeLimey
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OUCH-US - Less "ME" and more "WE"
 
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Re: Who is who here to the newcommers
« Reply #227 on: Nov 8th, 2006, 7:45am » |
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Hi ferrie, I've posted on your other questions - we'll get you sorted!
Helen
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The arsehole I'm divorcing needs to get a life and stop stalking mine
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ferrie
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Re: Who is who here to the newcommers
« Reply #228 on: Nov 8th, 2006, 7:59am » |
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Thanks Helen, no-one around me seems to understand what CH are all about and it makes me feel isolated.
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pattik
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Re: Who is who here to the newcommers
« Reply #229 on: Nov 8th, 2006, 8:04am » |
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Hi Julie, and welcome. You are definitley NOT alone here. There is more and more evidence of women getting their first onset of CH after the age of 50. There is much to learn on this site, as well as the OUCH site (link on the left). Please ask all the questions you need. PF wishes. patk
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The voyage of discovery is not about seeking new landscapes, it's about having new eyes--Marcel Proust
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ferrie
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Re: Who is who here to the newcommers
« Reply #230 on: Nov 9th, 2006, 3:33pm » |
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Thank you Pattik, I have learned more here since yesterday than I have in the past six years, brilliant site!
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aura
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Re: Who is who here to the newcommers
« Reply #231 on: Nov 16th, 2006, 10:48pm » |
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It was such a releif to find this web site. I have many people in my life who try to suport me through my headaches, but part of me always feels angery having to describe them the pain and know they still do not understand. After reading your postings I broke down in tears; I have finally found a place where people know how i feel. The dread we all have waiting for the next bout.
I get eposdic cluster headaches and have been head free for about 2 months now  In these times I try not to really think about them and kind of pretend that I do not get the headaches. Today though I went to see a neurologist who was more excited about what I do for living then about my headaches. He basically told me to take drugs and go home. It made me so angery to be sluffed off again.
I started getting these headaches when I was fifteen years old, at which time i was told they were stress headaches ( I am not sure what the doctor thought I was stressed about) so I began to self medicate. After a few more episodes I went to the doctor again and then they started to hand me drugs. I am tired of being handed the new drugs because none work without giving me horrible side effects. No doctor has ever recomended oxgen, but after reading about it on this web site I think that will be my next plan of action.
On the lighter side. I am now 24 and mom of a wonderful little girl whom I adore. Ofcourse she is the smartest and prettist child in the world  I have a wonderful job, and a wonderful boyfriend who worries about to much but can always make me laugh when I need one. My family is great they suport me as much as they can and understand when i need to go hide in the corner for awhile.
I want to thank you all for sharing. I do not feel as alone in this battle anymore.
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AussieBrian
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Got beer?
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Re: Who is who here to the newcommers
« Reply #232 on: Nov 16th, 2006, 10:53pm » |
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You're not alone, Aura. Welcome home.
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Vulcrania horrendus - twice daily, then two at night in lieu of sleep.
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galaxie500
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Re: Who is who here to the newcommers
« Reply #233 on: Nov 17th, 2006, 11:45pm » |
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Howdy all. I just discovered this forum after doing a Google search for CH. I HAD been CH free for the past 10 years, having quit cigarette smoking in 1996. 2 nights ago, I awoke with that dreaded burning behind the left eye pain I thought I was through with. I am also a frequent alcohol (beer)user which has always been a trigger for MOST of my CH episodes in the past. I am 59 years old, male, twice divorced, and currently living alone. I suffered most of my CH episodes from age 25-50. Blood type AB+ I see I have a lot to read in this forum! Best regards to all clusterheads....
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Tybo
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Re: Who is who here to the newcommers
« Reply #234 on: Nov 19th, 2006, 1:50pm » |
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Hi all. 
This is my first post,although,i've been lurking for a while.
I only seem to come on here when i'm in a cycle.
May sound selfish,but when there's no pain,i try to forget about it 
My name is Adrian (Ady).
I'm 33.
I started with CH at about 20.and was misdiagnosed for about 4 years  .
Oxygen is my main saviour,but after a bad time last week,i had another visit to the GP last Friday,and managed to get some Imitrex injections to try.
But since then i've been pain free,so unable to try them out.
Not that i'm complaining of course .
The GP i saw on Friday was the one who i had to convince to prescribe me the oxygen a few years back,and when i told him it works great,he was really shocked because he's never heard of it as a treatment 
Doctors eh...don't you just love em 
I live with my girlfriend of 11 years Sarah,who's great and probably the only one who really knows what i go
through.
Thanks for listening
Ady
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Jonny
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Re: Who is who here to the newcommers
« Reply #235 on: Nov 19th, 2006, 1:54pm » |
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Welcome aboard all,
Keep reading, it will only do you good! 
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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abbiedoll
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Re: Who is who here to the newcommers
« Reply #236 on: Nov 27th, 2006, 5:40pm » |
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Hello everyone! My name is Abbie, Im 27 years old and have had cluster headaches for about ten years now. I am so happy to have found this website because I have felt so alone for so long! Like no one could possibly understand. I have recently done alot of research regarding cluster headaches, because I seem to get no where with docters. I felt like a hypochondrriac because I am constanly at the urgent care crying..begging them to tell me whats wrong. Most of the time Im passed on, telling me "oh its just your sinus or that I have tension headaches". I often freak myself out, convinced I have a brain tumor pushing behind my eye, until I read up on the symptoms of CH. I hope to converse with you all and get some support as sometimes I feel like these headaches prevent me from living my life to the fullest.[img][/img]
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Linda_Howell
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Re: Who is who here to the newcommers
« Reply #237 on: Nov 27th, 2006, 6:46pm » |
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Check your pm's Abbie. They are at the top right hand side of the page.
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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Miserable_in_MS
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Re: Who is who here to the newcommers
« Reply #238 on: Dec 4th, 2006, 6:58pm » |
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Hello All ! I am 32 years old, married 7 years and we have a 3 year old little girl. My headaches began back in April of this year. I didn't know what it was other than I prayed for God to take me off this earth if that's what would end my pain! It began one night with a pain in my right cheek which at first I thought was a toothache starting. Then with in minutes the pain was in my eye, around to my ear, and the whole right side of my head and my neck. All I could I could do was lay in the floor and cry. The pain was so intense I even banged my on the floor. I can honestly say that at that moment I even considered suicide. My husband called my parents to come and get our baby and he took me to the hospital. They did some test and told me that it was a migraine, and gave me a shot of Demerol. I made an appointment with my dr and he ran a mri and cat scan and told me that it was cluster headaches. He gave me Imitrex and Depakote. Neither do anything for me!These headaches are killing me! When they start I can't function- at all. All I can do is roll around on the floor and hold my head and scream and cry which scrares my baby to death! Something has to give soon or I'm gonna loose what's left of my mind. The only thing that stops them is going to the E.R. and getting a shot of Demerol, and of coarse that takes hours to get seen! There has to be a better way! If any one has any suggestions for me I would be grateful for any advice offered.
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Richr8
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Re: Who is who here to the newcommers
« Reply #239 on: Dec 4th, 2006, 8:30pm » |
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on Dec 4th, 2006, 6:58pm, Miserable_in_MS wrote:There has to be a better way! If any one has any suggestions for me I would be grateful for any advice offered.
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Unfortunately, there are no known cures for CH. You can find a certain levels of relief by finding a treatment tha tworks for you. Please read all that you can here:
http://www.brightok.net/~mnjday/chtherapy.pdf
and share with your Neuro. If you don't have one, get one that is willing to listen and work with you in developing a coping plan. Also, read all of the information on the left panel regarding Oxygen. It works wonders for many of us.
Feel free to ask questions regarding any treatment over on the meds or general boards because chances are xomeone here has tried it.
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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war_eaglekd
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Re: Who is who here to the newcommers
« Reply #240 on: Dec 11th, 2006, 12:04pm » |
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Hi. I'm Karen from Auburn, AL. My headaches absolutely will NOT keep me from watching the Auburn Tigers play! War Eagle. kd
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sivik
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Re: Who is who here to the newcommers
« Reply #241 on: Dec 12th, 2006, 11:54am » |
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24 yo male, first diagnosed last year, having my second cycle right now. Seems to be a Winter thing.
So glad I found this website.
Taking Verapamil and Ultram...not doing too much for me.
Any other suggestions? I've read about oxygen as being helpful, but didn't know of any other medications as well.
Imitrex seemed to work the best, but since you can only take a certain amount in a specified period of time it only lasts about a week.
Suggestions?
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Tara Ann
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Re: Who is who here to the newcommers
« Reply #242 on: Dec 20th, 2006, 3:48pm » |
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on Nov 19th, 2006, 1:54pm, Jonny wrote:Welcome aboard all,
Keep reading, it will only do you good! |
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Yup definately! I've been a member here since
June 23rd, 2003 and I still read so much more than I post.
Oh I'm Tara, 29yrs old married to Sam for 8 yrs and we have two kids... Sammie, he is 6yrs and Antoinette, she is 5 yrs old. I started with Ch a yr or so before Sammie was born and was dx in 2001. Was episodic until a couple yrs ago when my cycle just never ended. I'm very med resistant and have tried many, many, many meds so mostly I go it medfree (for me so far it's better than crappy side affects with no good result) about the only thing that almost consistantly works for me are steroid tapers and now my teeth are suffering due to so many of those.
Welcome to CH.com and I hope you find help, support, understanding and friendship here.
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noranate
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Nora-N-Nate You Are My World
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SIVIKRe: Who is who here to the newcommers
« Reply #243 on: Dec 21st, 2006, 12:16am » |
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Sivik unrortunately with the Imitrex you have to be very selective as to wich two headaches you choose to use it for in a 24 hour period due to the risk of overdosing on it. Although if you were to take a third in under the 24 hour spacing say around 20 hours I have noticed no real major problems but that is how my body reacts. I have found that Verapamil and Neurontin seem to work fairly well for me when taken together so you might want to question your doctor about that. And as far as the oxygen goes that is supposed to be the best thing we all can do for these damn things but again it can work for some and not others. If Presribed you should push for 15 lpm and be sure to get a re breather mask or it will not work as well. And be sure to keep your self hydrated as it tends to dry your nostrils and throat out. If you are experiencing problems with anxiety or depression due to all this my docto put me on Lexapro which is working weel for me and i also tried Wellbutrin which had an added side effect of helping me to quit smoking. I wish you luck man and I hope you found an understandind doctor. Take it easy and just remember the pain eventually goes away. Happy Holidays.
Peter
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Peter Marchese
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Butch
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Re: Who is who here to the newcommers
« Reply #244 on: Dec 21st, 2006, 3:16am » |
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I just wanted to say hello this is my first time here i just found this site the other day and was able to learn alot of whats been going on with me, I am a 911 dispatcher have been for 10 1/2 years, Volunteer Firefighter and Instructor. i was also an EMT. I am married have been for 20 years, one son and three daughters. this is my second time of having CH, they came back last october.
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Butch
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Re: Who is who here to the newcommers
« Reply #245 on: Dec 22nd, 2006, 4:55am » |
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Well yesturday morning after i let that small note here about me I had got off from work and went home, right now I work nights 7pm to 7am, after i got hoome I stayed awake for a little while then I got a vist again for the beast this time it was just to let me know he was still around. I am tring to learn as much as I can about this I thought it was all over the last time I was getting all the headaches, I was headache free for so long I would like to know what iI did to keep them away but maybe I will never know.
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E-Double
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Re: Who is who here to the newcommers
« Reply #246 on: Dec 22nd, 2006, 8:13am » |
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Hi there and welcome to our family!!!
Much to learn and share!
PF wishes to you all!
E
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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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Pfunk
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Re: Who is who here to the newcommers
« Reply #247 on: Dec 24th, 2006, 1:02am » |
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Hello all. I guess since I'm back on as a newbie now I'll start over by trying to post a picture here with the message. Most of you know my situation as so amny of you kindly replied when I introduced myself last year. So her goes a shot at posting a picture within this post; if it doesn't work than I'll keep trying untill I get it:
Hell! Ican't figure it out here the cite if youwant to see a picture:http://i44.photobucket.com/albums/f34/pfunk15/leepat-1.jpg
Pfunk
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E-Double
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Re: Who is who here to the newcommers
« Reply #248 on: Dec 24th, 2006, 8:06am » |
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Coming to you directly from the Mothership
Top of the Chocolate Milky Way, 500,000 kilowatts of P.Funk-power.
Whattup brother and welcome back
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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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Tara Ann
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Re: Who is who here to the newcommers
« Reply #249 on: Dec 27th, 2006, 7:19am » |
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I must add....
I remember feeling that "oh wow I'm NOT alone!" feeling. Newbies ain't it great to know you truly aren't alone. I think that's why I cried so much when I first found this site and read, read, read, for days! It's amazing to the point of almost being overwhelming (in a good way)
(hey as for pics, how come even though I use a program to make mine smaller for a website they still look huge??)
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