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Title: Newly diagnosed too... Post by tfg229 on Sep 26th, 2003, 11:27am Hey everyone: I was diagnosed with Cluster headaches last Friday. I'm 24 and a female. From what I read - it doesn't effect too many women - of course I'd be one of the few. ::) It just came one day out of the blue - this horrible pain like my eye ball was gonna come bursting outta it's socket. After that - it didn't happen for another few days. It was so debilitating though. Then it started - every day - 2 or 3 times a day, always at the same time. My body was completely shot from being so tense, expecting the "devil" to come - **i'm learning the terminology**. I missed a few days of work, I can't work out (that seems to make them come on worse), i can't go out without getting extremely tired within an hour or so... I waited for about a week and a half and went to see my doc. I was on Wellbutrin to stop smoking and was coming off that so I thought maybe i was suffering withdrawl. My doc said that didn't happen normally. As the days went by - the HA's grew more and more severe. I went to see a neurologist: told him my symptoms and he gave me some verapamile and prednisone. They've been working and I've been headache free (for the most part) since last Friday. I feel the shadow though, esp now since I'm starting to reduce the amount of prednisone. I stopped smoking, got off birth control, no alcohol or chocolate...and am not missing any of it... After reading all your stories - I'm scared to death of what I may potentially go through for the rest of my life. The worst part is - I never heard of these Cluster headaches before - and no one i know has either. They all think I'm being a big baby and it's like a migraine. I've had migraines and I'd take one of those any day over a cluster. I'm going for an MRI on Tuesday and I'm just tired of worrying about this already. I know some of you must be like, she's been doing this for a few weeks - try doing it for a few years. My heart goes out to you in the biggest way possible. I guess I'm just feeling a little overwhelmed. Well that's my story. I'm sure I'll be in touch - it's nice to know that there's someplace I can turn to where people truly know what this is like. |
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Title: Re: Newly diagnosed too... Post by cathy on Sep 26th, 2003, 11:33am Hi tfg.....sorry to read you've been diagnosed with CH, you have found a great site here, it has a wealth of information and an even better support network, it truley does sux to know you've got this, but with help from those here you will learn to survive it! Welcome aboard.... Let us know how the MRI goes. Cathy :) |
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Title: Re: Newly diagnosed too... Post by Eraserhead on Sep 26th, 2003, 11:39am Ah the two new kids lol. I'm just 33... I guess I should be greateful that they didn't start earlier like they did for some people. When I was diagnosed I thought they must be mistaken. I'm not a hypochondriac by any means... but I went into the doctor's office preparing myself for the "you have a brain tumor" speach. I mean what else could possibly do that right? When you make yourself wish for someone to punch you out to make the pain go away... it has to be more than just a headache. In the last 24 hours, I've been very educated on the evil Cluster. This is a great place to feel welcome :). Eraserhead |
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Title: Re: Newly diagnosed too... Post by BarbaraD on Sep 26th, 2003, 11:52am Ahhhh yes I remember - I had a brain tumor too -- then the doc said Cluster Headache and I said, "What the heck is that?" Seems like a lifetime ago. Been through all the "Oh I had one of those one time and they're just AWFUL!" I now carry a baseball bat! LOL! I just compare migraines to CH as a goldfish to a shark and let them draw their own conclusions. I dont' even apologize anymore when I get hit. Most people who know me know to GET OUT OF MY WAY and those who don't LEARN QUICKLY. Welcome to Clusterville. This is the best place to be. Vent, cry or laugh - whatever you feel like - we're here to support and you can't say or do anything we haven't already done or said. We UNDERSTAND.... Hugs BD |
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Title: Re: Newly diagnosed too... Post by Lori on Sep 26th, 2003, 12:47pm Welcome tfg, We are sorry you have to be here but this is the best place to be if you have clusters. Try to read as much info as you can here. Be sure to check out the oxygen button on the left and the OUCH button (right under oxygen). When you click on OUCH, then click on Cluster Help, then click on Medications. Read and print this info. The OUCh site has a great deal on it, including a searchable library. Knowledge is power with these clusters. Keep us updated. |
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Title: Re: Newly diagnosed too... Post by taraann on Sep 26th, 2003, 12:50pm Terribly sorry you have CH! Stick around here this place is a great wealth of Info and support 24/7! |
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Title: Re: Newly diagnosed too... Post by Callico_Kid on Sep 26th, 2003, 1:04pm Welcome aboard. :'( Glad you found us after being diagnosed so soon. At least you are in the position to learn what you have and what to do about it early on. The easiest thing to do is to allow having CH to depress you. Don't allow that to happen. This is not the end of life, although you will wish for it at times. You just have to learn how to adjust and to compensate for the times you are not able to live as you would wish. You will find a lot of support here as well as information. Read the buttons to the left and as Lori said, go to OUCH. Join OUCH and learn all you can there. There are a couple of surveys there that you should fill out. They are to help compile information that then can be used in developing research programs to try to end this nightmare. THis is a new family you have joined. We may squabble and fuss, but you cannot find another group of people that are more willing to help and support you when you need it. |
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Title: Re: Newly diagnosed too... Post by tfg229 on Sep 26th, 2003, 1:28pm Thanks everyone for your helpful suggestions and your words of encouragement. I'm determined to not let the CH's get the best of me. Good luck to everyone else and I hope anyone who may have one today - it passes quickly....I'm sure i'll be in touch... |
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Title: Re: Newly diagnosed too... Post by Cerberus on Sep 26th, 2003, 3:34pm tfg229, Sorry this is going to be so short , feeling a visit coming so I gotta go get my meds and O2. WELCOME .........you're in the right place, Info on the left, always support for you here. learn and inform alike. PF, Ramon |
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Title: Re: Newly diagnosed too... Post by vig on Sep 26th, 2003, 3:36pm "it doesn't effect too many women" psst, don't tell that to the women here. It's not true anymore anyway. |
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