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gonztx
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I feel very alone
« on: Nov 22nd, 2004, 4:05pm » |
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I am 24 years old and have been having cluster headaches for about 6 years. I feel unlucky to be such an atypical CH sufferer. I was told that it is usually males later in life that have headaches and I am a young female. I feel like I am having to live my life in increments of 2 to 4 hours, constantly waiting for the next headache. I feel like a failure as a mother and wife, because I cant complete simple tasks like giving my daughter a bath, or even eating my own supper. I hate being this way, but I dont have anything to really be mad at. My husband tries to be nice about it but I know he gets frusterated at me for having them. I just wish that people could understand what it is really like. I dont feel like the word "headache" does a good job of describing what this is like. I literally feel like I could die during the pain. It is excruciating and I want help, but the meds I am on dont seem to be working.
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nani
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Re: I feel very alone
« Reply #1 on: Nov 22nd, 2004, 4:13pm » |
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Welcome and I'm sorry you're here. As you can see, you are not alone. I know it's frustrating to have CH, but there are ways of treating it. You don't say what meds you're on or have tried. Look around the site here and the OUCH site and you'll find tons of helpful info. Have your hubby look at the posts in the supporteres section of the message board. Ask us questions and maybe we can help. Pain free wishes to you.
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lionsound
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Re: I feel very alone
« Reply #2 on: Nov 22nd, 2004, 4:32pm » |
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YOU ARE NOT ALONE!!!!!!
We are here.
So sorry you're suffering. It's completely okay to feel this way. I'm a mom and wife too and feel the same way sometimes.
Are you seeing a doctor for them? Does anything work for you?
Have you tried going from a hot to a cold shower or ice on your head? (sometimes these things can help a little). This place helps too! Read, read, read!
Be well and Pain free,
lionsound
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Kris_in_SJ
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Re: I feel very alone
« Reply #3 on: Nov 22nd, 2004, 9:27pm » |
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Welcome. So sorry you have to be here, but glad you found us. It's a wonderful family here.
Clusters make many of us feel alone, mostly because it's so rare. It's only places like this that you can find others going through the same thing. It will help. Keep posting and read, read, read! And ask questions too!
Hugs,
Kris
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Jayne
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Re: I feel very alone
« Reply #4 on: Nov 22nd, 2004, 10:43pm » |
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we can help you. Start by telling us what meds you are on and what dosage etc....the more you tell us the more we can point you in the right direction. Clusters can be controlled.
Talk to us!!!!!
Love Jayne
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Testy1
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Re: I feel very alone
« Reply #5 on: Nov 23rd, 2004, 3:24am » |
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gonztx
Sorry you're here but good to meet you. I'm new as well but the people here are friendly and supportive and their advice is usually good. There is also a HUGE amount of info on things to control and abort your HAs. Not everything works for everyone but some of the tips and tricks and meds will probably help you a bit.
Welcome again
Jack
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Ronny
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Re: I feel very alone
« Reply #6 on: Nov 23rd, 2004, 1:29pm » |
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Hi,
You're not alone, we are all here and we do understand.
And: yes, it can be controlled with the right medications, so fill us in, what are you on now? Maybe we can help.
ronny.
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Redd
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Re: I feel very alone
« Reply #7 on: Nov 23rd, 2004, 8:20pm » |
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Atypical is just a word....don't fret it at all....
Please let us know what you have and are taking, and a some details on your symtoms...we are not doctors, but the collective insight amoung all of here will help point you in the right direction....
as you can see there a few of us other "atypical" females here too.... 
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cschick
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So sorry you are here. Was only a little over a month that I found this site and it has quite literally been a lifesaver. It is a wonderful place to be. Please tell these guys what meds you are on and they will be able to point you in te right direction to go with your dr. I actually printed out info from this site and took it with me to my dr. to help him understand better what I was going through and where to start.
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Spike266
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Re: I feel very alone
« Reply #9 on: Nov 24th, 2004, 1:25am » |
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You are without a doubt not alone, their are tons of very helpful and concerned people to rely on on this site. They are also very informed group. Please use them for information and get the hubby on board. Good to meet you bad way to meet. Take Care of You.
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becky8
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Can't say anything anyone else hasn't said, except your post touched my heart. I hate when young people have CH. I had it when I was young but didn't know what it was and in some strange way it was better for me anyway. But we are glad you found us and we can help. So strap in and read and read and research and you will find what you need here. And come just to vent. Hang in there.
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serendipity
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Re: I feel very alone
« Reply #11 on: Nov 24th, 2004, 1:47pm » |
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Gonztx,
I am a mom and wife, too, and like you, started having cluster headaches early (I was 20 when I had my first cluster). Atypical, yes. Alone, no.
Like the others have said, these things are very treatable. Since most doctors are not very familiar with cluster headaches, your current treatment regimen may not be the best. Let the people here help you to find something that works for you!
I understand your frustration, as I've felt this way many times myself, but we are here to help, and you're not alone.
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Sisyphus
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Re: I feel very alone
« Reply #12 on: Nov 24th, 2004, 1:49pm » |
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gonztx, get your husband to look at the site especially look at the section in the left coloumn entitled 'the devil'. Get him to read that. The guys on this site are the best remedy for feeling alone, once you have met this lot not only is it possible to smile again but you end up with the feeling that things can get better. You are young and you have been under pressure and most of the people here know that. Post messages on the boards asking for their help and advice, its all out there and you just have to ask them. Believe me, things have just got better for you since you logged on here. Here's wishing you some smiles. Sisyphus.
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thebbz
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Re: I feel very alone
« Reply #13 on: Nov 24th, 2004, 7:35pm » |
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Hope ya dont feel so lonely no more. Hang with it. My wife is a savior when Im all in a cluster. Knows just what to do and supports alot when the source is also your other half. Get your mate to check it out!!! I'm sure he feels your pain.
BB
Never alone!!!
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Redneck
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You are never alone
Now you never will be again!
Listen to the above advice, a good doctor is the key.
So sorry you have to face the hated beast.
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| « Last Edit: Nov 26th, 2004, 6:32pm by Redneck » |
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karma
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Re: I feel very alone
« Reply #15 on: Nov 27th, 2004, 8:35am » |
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gonztx You still there?
The colletive experiences and knowledge of the poeple that have answered so far surpasses most doctors. These are only a very small part of all the people ready and willing to help with your CH and your outlook on life.
Come on back and sit for awhile. Ask all the questions you want answered. No one can really seriously help unless you let them know a few more details. Chronic or episodic? What medications have you tried? There are preventative medications. There are abortive medications. There are nonmedicated therapies. There is a whole lot of crap that is sometomes prescribed by docs. that doesn't work at all.
There is help. There are ways to relieve the pain and make life managable but we can't really help unless you let us.
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gonztx
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Re: I feel very alone
« Reply #16 on: Nov 29th, 2004, 11:14am » |
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Thank you all for your support. It is nice to know that others have felt the same way I do. I am nearing the end of a cycle of headaches now that started Oct. 25. I have had 2 pretty good nights sleep and am only having 3 or 4 headaches a day now. Therefore, my outlook is a little better. I always begin to get hopeless during a cycle. It is hard to imagine an entire life this way. But I know I will make it, and maybe it will just make me stronger. I am taking 480 mg Verapamil daily and amitriptylene and I always take way too much Ibuprofen, thinking it may work. Maybe that part is just psychological, but I feel like they may be worse (if that is possible) if I dont take the Ibuprofen every 4 hours. When a cycle begins, I begin taking tapering dose of Prednisone. The prednisone seemed to break the cycles each time, but I was getting it every month (sometimes more). I began to worry about side effects of prednisone, so with this last cycle I was thinking maybe if I just let it go, I would have a longer break in between, Still waiting for the break, and this cycle has now gone on longer than a month. Does anyone use the prednisone this much and if so, have there been any side effects? Should I worry, or just do it because it may work?
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nani
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Re: I feel very alone
« Reply #17 on: Nov 29th, 2004, 11:41am » |
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I've never tried Pred because I don't like steroids. Long term use can be very bad for you, but I couldn't tell you how long is too long.  I'm glad you're starting to feel a little better. Be careful with the ibuprofen, too, it can cause rebound headaches...
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| « Last Edit: Nov 29th, 2004, 11:42am by nani » |
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gonztx
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Re: I feel very alone
« Reply #18 on: Nov 29th, 2004, 12:59pm » |
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Really, I have never heard that about Ibuprofen. So should I not use the Ibuprofen at all when the cycle begins?
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nani
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Re: I feel very alone
« Reply #19 on: Nov 29th, 2004, 1:36pm » |
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I can't tell whether to continue using it, but if I were you I'd start weaning off asap. You have to be careful of any pain med, even analgesics because of rebounds.
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gonztx
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Re: I feel very alone
« Reply #20 on: Nov 29th, 2004, 3:18pm » |
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So, NANI, what seems to work best for you?
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kimmiedawn81
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Re: I feel very alone
« Reply #21 on: Nov 29th, 2004, 3:21pm » |
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Trust me gonztx, I know exactly what you're going through. I'm 23 and I am a female as well. I also know that my boyfriend tries his best to understand, but sometimes that's just not good enough. Feeling alone is very real, but this website is amazing and filled with people who do understand what you are going through. If you ever need anything, just let me know.
~Kim
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nani
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Re: I feel very alone
« Reply #22 on: Nov 29th, 2004, 3:22pm » |
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I'm a chronic, with some bad episodes, so I may be different from you...
I use verapamil, lithium and Neurontin as prevents. I used to use Imitrex as an abortive but my dr says I can't use triptans at all. Now I use oxygen as an abortive. I use a cold pack when I'm hit, it helps a little. I can't say I get total relief at all...I still get hit everyday, just not the high kip hits. I've had ONE PF day this year.
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