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Topic: This is the way it is going to be. (Read 567 times) |
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Jobette
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This is the way it is going to be.
« on: Aug 25th, 2007, 4:01am » |
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I have been gone a while, but not always painfree. I didn't men to stay away so long, but I just didn't want to post. I just read and tried to learn in silence. I get really tired of complaining, and wondering why this happened to me. I really feel that most people don't understand what these things do to you. I AM thankful for this sight because I know that you all do, but in the same turn I feel like a burden when I come here, because it seems that I only come when things get to hard for me to handle, and I don't have anyone to talk to that understands what I am going through at home. I really don't like having to worry my family with this because it hurts them. Now ain't that silly, I feel like chopping, cutting, blowing, knocking my head off, yet I am concerned about others.
My doctor told me this week that this is the way that it is going to be, and I guess it got to me. After reading the many posts on this sight I had already come to that conclusion, but it is a little different when you hear it from the doctor. Even when you know that they don't know everything, or nothing about this demon that lives in our head. I guess the depression in trying to set it. Plus I am sick of and from the meds. DAMN, there I go again with the complaining. I was just wondering if anyone else has been told that "This is the way it going to be. We don't know what causes them. We can't figure out how to stop them, we can only try to help you control them." Does this mean that I will remain on these meds the rest of my life even though they don't stop the beast? Does it mean that I will have to live in fear of this pain that lives in my head?
Thanks for any help. Jobette 
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Who gave cupid those flaming arrows, and why is he shooting them into my right eye?
Where is his love?
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LindsayLoo
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Re: This is the way it is going to be.
« Reply #1 on: Aug 25th, 2007, 4:18am » |
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Jobette,
Wow! You just put into words everything I have been thinking and feeling. I am glad you posted this, please know that you are not alone.
I have never been told "this is the way it is going to be" by anyone, but you just made me realize that yes, this is how it is going to be and there is nothing that I can really do about it but not let it consume me. It has been lately, I am at that "I don't know how much I can take of this anymore" point.
I DO live in fear. I'm afraid that my 2 yr old and 10 month old will later on suffer some how because they see me in pain.
I have so many questions and thoughts that I would like to post but am afraid I will look like I'm an idiot or that I am complaining or need attention etc etc.
I don't have ANYONE that I can talk to either at home, (and my dad is a doctor )they either think a) it's in my head (no pun intended) or b) it isn't as bad as I make it or I'm exaggerating the pain.
I know I am going to regret saying this here but, yes, at one point in my life, I was a hypocondriac but not because I made or thought things were wrong with me but because I desperately needed attention. So maybe it's me and my karma thinking people will react negatively to me.
See even now I'm going on about me.
If you EVER need to talk, PM me, email me or if you want my number, call me.
Thank you for having the courage, for posting this and putting words to how I feel too.
*HUGS* Lindz
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| « Last Edit: Aug 25th, 2007, 4:22am by LindsayLoo » |
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“The pain of the mind is worse than the pain of the body” -Publilius Syrus
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UN solved
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Re: This is the way it is going to be.
« Reply #2 on: Aug 25th, 2007, 5:05am » |
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True story:
Just today I was told "I'm sorry, but we have no plan B" 
Hang in there, there's gotta be something that'll help. Keep looking for it ! Never give up !!
Goodluck
UNsolved
PS. You can PM me anytime if you need someone to talk to, if you have questions, or if you just need to vent frustration. I'll get back to you asap !
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Jobette
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This too shall pass! If you don't passout first!
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Re: This is the way it is going to be.
« Reply #3 on: Aug 25th, 2007, 5:15am » |
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REALLY, What do you do when the doctors don't know what to do. We are all hoping and guessing, but We still have any answers. It is 2007 and there is no one out there to help my head to stop ruining my life and health and sanity! Really, what are we going to do?? How are you supposed to keep from being depressed when things seem so hopeless? 
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Who gave cupid those flaming arrows, and why is he shooting them into my right eye?
Where is his love?
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LindsayLoo
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Re: This is the way it is going to be.
« Reply #4 on: Aug 25th, 2007, 5:19am » |
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on Aug 25th, 2007, 5:05am, UN solved wrote:| Hang in there, there's gotta be something that'll help. Keep looking for it ! Never give up !! |
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This is what I said "I don't know what you do, I'm trying to figure that out too. Somedays it really, really gets to me and others i tell myself there has to be something else to do, that can't be all. Ya know? All, I do know is I cannot live the rest of my life with these demon's."
I tell myself this all the time, maybe it will sink in eventually and come true. I'm glad there is someone who hopes the same way I do.
on Aug 25th, 2007, 5:15am, Jobette wrote:| How are you supposed to keep from being depressed when things seem so hopeless? |
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If anyone has an answer to this I'd REALLY like to know it.
*hugs* Lindz
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| « Last Edit: Aug 25th, 2007, 5:21am by LindsayLoo » |
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“The pain of the mind is worse than the pain of the body” -Publilius Syrus
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michael
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Re: This is the way it is going to be.
« Reply #5 on: Aug 25th, 2007, 6:27am » |
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Hi Jobette
I have had this beast now for 40 years. For 30 of those years I lived not knowing what this was and had no medication that would even touch it. Never even heard of anyone else with it.
I have now found this site and it is a wonderful family. There is plenty of help here. Think what it was like 20 years ago when not even a single doctor seemed to have heard of it.
I feel your pain and I understand your depression but please take comfort that you are now in a caring family that will help you.
Read the info here, you may not be able to stop the beast, but there are plenty of meds that should help you.
Mike
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| « Last Edit: Aug 25th, 2007, 6:31am by michael » |
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Chillrmn1
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Re: This is the way it is going to be.
« Reply #6 on: Aug 25th, 2007, 7:11am » |
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Jobette,
I can very much relate to your post but this is not how it has to be. Keep exploring different treatments and read how others are finding relief. My previous cycles occurred on a 12 - 14 month interim, with the last most brutal cycle lasting 9.5 months. This desperation led me to try alternative treatments, and since then I have been cycle free and completely painfree now for 28 months.
I'm not trying to promote any particular treatment on anybody, but my point being is that this is not how it has to be. Keep exploring different treatments until you find one you feel comfortable with and affords you the relief needed. Don't accept the status quo.
Wish you well,
Bob
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EstieSA
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Re: This is the way it is going to be.
« Reply #7 on: Aug 25th, 2007, 8:45am » |
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on Aug 25th, 2007, 4:01am, Jobette wrote:I have been gone a while, but not always painfree...SNIP ...pain that lives in my head?
Thanks for any help. Jobette |
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+1
Well written!
I know how you feel...
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nani
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Re: This is the way it is going to be.
« Reply #8 on: Aug 25th, 2007, 10:01am » |
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on Aug 25th, 2007, 5:15am, Jobette wrote:| REALLY, What do you do when the doctors don't know what to do. |
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Well, this is what I did.
www.clusterbusters.com 
pf wishes, nani
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Others may come and go, but MY power is MINE.
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aceserve
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Re: This is the way it is going to be.
« Reply #9 on: Aug 25th, 2007, 10:13am » |
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Jobette,
The beast is scary and being hit by CHs day after day (or night after night) can turn you into something of a zombie, so you're not your normal self. This has happened to me (about twoweeks ago, in fact).
But...things can change for the better! In the early years, I suffered in agony with no relief. Then came a doctor who diagnosed the problem, then came cafergot, then came Imitrex, and the good folks here on the message board recommend oxygen (which I bought but haven't used, since my episode turned out to be weeks shorter than normal this time, or so it seems). Which brings up another point: Your condition may get better overall. Keep up the hope and try various treatments, and please don't despair.
I believe that my using melatonin before going to bed helped knock out my nightly CHs, because the melatonin rebooted my hypothalamus, and shook up the body clock. I think Red Bull also helped. I learned about both treatments here on clusterheadaches.com.
Most people don't know our condition, and they can't imagine the pain. Last night I was describing CH to two friends, and they had never heard of it, but were interested, especially one lady who has migraines. When I told her a CH is considered to be 100 times stronger than a migraine, she really listened and wanted to know about CHs. So it is not everyone in the world who thinks the pain is imagined or you are exaggerating. And those of us who have CHs know first-hand, and can relate to you.
Best,
Andrew
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Ahhh, what a relief to be pain free. Hang in there. Good times are comin'.
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2late
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Ride Free..Pain Free
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Re: This is the way it is going to be.
« Reply #10 on: Aug 25th, 2007, 10:30am » |
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sorry to here your getting crushed,i cant stress enough the power of 02,its been a godsend for me and alot of people around here. a great abortive that is mostly benign, look into it.
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starlight
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Re: This is the way it is going to be.
« Reply #11 on: Aug 25th, 2007, 1:31pm » |
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Jobette,
I am not sure if you are chronic/episodic, because I feel kind of dumb giving you advice if you are chronic because I am episodic (but have been for 20 yrs. since age 14). I went through a period where I was incredibly anxiety-ridden and depressed years ago. As a teenager I had docs refuse to refer me to a neurologist, refuse to diagnose or misdiagnose as migraine as well as give wrong medications for migraine and another who gave me a referral to a psychiatrist telling me that the headaches were from being crazy. It was a horrible feeling.
This may sound stupid, but oxygen with the right O2 flow and right mask (went through all that with cycles with wrong flow/masque) combined with using melatonin which allows me (thankfully) to fall pretty easily back to sleep after using O2 (even if O2 needs to be used multiple times a night--melatonin gets me the sleep I need) has made a profound difference in my emotional state. I felt like it gave me control back, like I had a weapon that worked.
I'm sure your doc is well intentioned, but I would personally caution you against letting anyone tell you "this is how it's going to be". Even with someting as insidious as cluster headaches, you want to try to get the power back--not give it away to the headaches so to speak. By finding something that works for you.
Depression will set in if you accept that that is how it must be forever. My advice is to get O2--it's a powerful weapon against CH--the ironic part is sometimes you have to INSIST on getting a prescription for it--well, that's OK--INISIST--because people with CH NEED O2--that's one thing I've learned in 20 years. Star
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Jobette
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This too shall pass! If you don't passout first!
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Re: This is the way it is going to be.
« Reply #12 on: Aug 27th, 2007, 12:00am » |
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I have O2 and it is probably what has save me so far. It doesn't always stop it, but it does help keep it at bay. I am currently on a Predinzone tamper and she upped the Verapimil and the Neurotin. I also am using Imitrex I use the pill IF I feel something other than a shadow (you can tell the differance, and I have nasal and shots for what I know is the real thing. She also suggested the Melatonin, which I tried to use, but I am a shiftworker and my sleep is already a wreck. I take a .25mg Xanax at MY bedtime to try and put HIM to sleep with me. My doctor told me that I treat this condition asthough IT were alive and that I shouldn't do that, but I said that IT is alive and IT knows my every move.  I choose to use Flonase because I think that it helps ME. I can't speak for anyone else. I have been dealing with this for quite so time now and am trying to find ways to help myself and keep my sanity. As you all know this thing can be and most times IS a booger, not only on you but your family as well. I just get tired of the contol that it seems to have on my life, the uncertainity of it all. I can't seem to get use to it although I am thankful that I am not chronic and my heart DOES go out to those who are. More power to us all!! Jobette 
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| « Last Edit: Aug 27th, 2007, 12:04am by Jobette » |
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Where is his love?
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southwalessunshine
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Re: This is the way it is going to be.
« Reply #13 on: Aug 27th, 2007, 1:26pm » |
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I know exactly how you feel. My cycle changed around 10 weeks ago and in that time I've been PF for only a couple of days. I had couple of days at the end of last week where I gave in to the "depression" of it all and started to give up my fight and that scared me as much as rthe battle with the beast does! My biggest fear is not being able to go back to work and that drives cold fear into me, but I've come to the conclusion that it prob is gonna be this way from now on.
I also think that we as CH sufferers don't like to admit we're really struggling purely because of the struggle we've already had being diagnosed and understood by others. Many here have been told, as I have that it's only a headache, take a paracetamol and lie down! Being told this time and time again wears you down and hgets you to a point where you start to belive you're making it up.
We all understand what you're going through and feel free to PM any of us for a good old moan, I know I'd love to have someone to moan to 
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keep your face to the sunshine and you will never see the shadow.
Alone we can do so little, together we can do so much.
Walking with a friend in the dark is better than walking alone in the light.
Helen keller
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michael
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Re: This is the way it is going to be.
« Reply #14 on: Aug 27th, 2007, 3:19pm » |
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I saw my doc last week, the one I have been seeing for CH for the last 4 years. He asked me if I'd ever tried pain killers. WTF
Mike
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Sandy_C
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Re: This is the way it is going to be.
« Reply #15 on: Aug 27th, 2007, 4:11pm » |
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Jobette,
Having CH sucks, to put it mildly. Most docs, hospitals, even neuros, don't have the knowledge, training, or expertise in treating this afflication.
About the only thing I can say to you is, take what meds your docs prescribe, but do your own research. You and only you are the one who knows what is happening, how if affects your life, how much pain you must live with. Never ever let a doctor, no matter how glorious he/she may think he/she is, tell you otherwise.
Live for the PF moment, if that morphs into a hour, live for that hour, morphing in to a day, live for that day, etc, and on and on.
Try not to focus on the Ch hits, the duration of those hits, the days, hours, times of those hits. Try to focus on the times BETWEEN those hits.
This is when life is good.
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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