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Topic: Goodbye Everyone--Sorry For Being A Pest (Read 3549 times) |
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Superirish2005
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Goodbye Everyone--Sorry For Being A Pest
« on: Sep 6th, 2006, 1:52pm » |
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I realize I have been a pest here the last 2 or 3 weeks going through a very rough cycle,,,maybe my worst ever.
I admit I have been a pest and after reading many responses to my threads especially those from Brewcrew I realize I need to stop bothering others with my problems.
I have 3 Maxalts (of the 18 erscriped) thats all my insurance covers and that will last me another day or 2 max. Not sure what to do but I will not bother everyone here again.
thanks for everything........
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Brew
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Re: Goodbye Everyone--Sorry For Being A Pest
« Reply #1 on: Sep 6th, 2006, 2:01pm » |
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One you decide to grow up, admit your pigheadedness to yourself, and start taking some sound advice from people who have been dealing with this beast for much longer than you, c'mon back. We really don't want you to suffer.
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starlight
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Re: Goodbye Everyone--Sorry For Being A Pest
« Reply #2 on: Sep 6th, 2006, 2:07pm » |
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Superirish,
I am sorry if you are deciding the leave.
Keep in mind though (and I am not trying to be a wiseass) the beast is a stubborn bastard and your best weapon (while you're trying to figure out what works) is O2.
Cause some people don't find meds that totally work and some even choose to fight the HA with O2 alone.
Not trying to be a wise guy at all--if I had to send someone into a battle with the beast and I could only give them one weapon it would be O2.
In other words, take anything from me that I use to fight the beast--but not my O2. Take care, STar
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Margi
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Re: Goodbye Everyone--Sorry For Being A Pest
« Reply #3 on: Sep 6th, 2006, 2:22pm » |
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I don't understand, either, why you refuse to try oxygen when so many people HAVE told you that it's the best thing out there. You never really have answered that question and I'm just really curious as to why....?
How old are you, Superirish? Are you young?
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Charlotte
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Re: Goodbye Everyone--Sorry For Being A Pest
« Reply #4 on: Sep 6th, 2006, 3:19pm » |
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If your cycle is 4 weeks, you only have another week before it's over. What have you learned that you can use next cycle?
Do you have the ability to read instant messages on your computer?
Charlotte
ps If your cycle is over now, you dont' need us anymore.
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seasonalboomer
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Re: Goodbye Everyone--Sorry For Being A Pest
« Reply #5 on: Sep 6th, 2006, 3:30pm » |
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Hey Superirish,
Quit being a drama queen.
You've had weeks of sound advice provided to you to just about every question you've posted. I've yet to see anyone really tell you that many of the questions you've asked have been addressed on the website links or in previous or other threads, sometimes at the same time you were posting your specific question.
Why, because these folks provide info to you on as needed basis. Ask it and they're going to give you HONEST and experienced advice. Sometime better than you might get from a neuro.
But we're not your doctors. We're not with you to make the decisions you choose to make for your care. We aren't with you when you are getting hit. But we get hit too, and we've experienced the confusing times, the scary times, the psised off times. And, many of us, have found a way to emerge after each cycle, or after each hit, to find sanity and direction.
Give us a bit of a break maybe. You haven't been attacked. You just got a reply that you didn't like. Get over it and get on with listening to the advice you're getting.
The time you have spent trying to find other answers than the ones you've been given could easily have been used to make arrangements for an Oxygen prescription and delivery. And, then you wouldn't have to worry about your Maxalt's running out.
you've still got time.
Scott
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Superirish2005
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Re: Goodbye Everyone--Sorry For Being A Pest
« Reply #6 on: Sep 6th, 2006, 5:05pm » |
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unbelievable, the attacks just keep coming. You guys amaze me. I came to get help and this happens.
MAN
as for my cycle ending, it started AUGUST 18TH, it has not even been THREE WEEKS.
My cycle lasts between 4-8 weeks. Thanks anyway everyone! I am outta here.
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Margi
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Re: Goodbye Everyone--Sorry For Being A Pest
« Reply #7 on: Sep 6th, 2006, 5:13pm » |
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seriously....you are NOT being attacked. But you are avoiding direction questions. Why WON'T you try oxygen? It's probably the safest, effective and most affordable treatment out there.
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BB
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Re: Goodbye Everyone--Sorry For Being A Pest
« Reply #8 on: Sep 6th, 2006, 6:18pm » |
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SuperIrish,
I am sorry you felt that you are not being supported. You are and the people here do care that you are suffering.
I have seen my DH going through similar things. He was only diagnosed with CH on 03rd August and his cycle is still going. Looking back he had had cycles previously but they werent bad then, he could cope with them and used OTC meds for the pain. But not this cycle, the pain was horrific and the number of attacks were up to 8 a day.
I saw how he panicked, how he became scared of the pain/the attack itself. I saw the desperate look in his eyes when the pain was at the peak and he felt he couldnt go on anymore.
The thoughts of seriously quitting life itself as in suicide was there almost daily during the worst 2 weeks. And we tried everything! Prednisone taper didnt work, Deseril didnt work, Red Bull didnt work, hot/cold showers didnt work, Valproic didnt work, Imigran works but occasionally doesnt , 02 works most of the time but not all, he had needed morphine injections several times then ended up with horrible rebound headaches and dependency which took a whole week to wean off.
Every time he tried something new he got all excited, hoping that this would be the magic bullet that will stop the beast. And every time it failed it crushed him and his spirit. We had to try so so so very hard to not give up and to keep going, keep searching, keep trying.
So I can understand how you frantically looked for the one thing that would simply stop the attacks. The only thing that you know works consistently is Imitrex, while everything else you tried didnt seem to do much.
Its most important though that you realise that things like redbull, hot cold showers, melatonin etc are not first line treatments. They are there as compliments to the mainline medication. They dont work the same for everyone.
The only things that are most likely to work are tried and proven medications such as Imitrex, 02, Verapamil, Lithium, Valproate, Topamax etc, even then you need to try various ones at various doses to see what works for you.
Please dont be dishearten that most of the things you have tried didnt work. I am sure that there are things out there that will help you but you need to keep looking and keep trying.
The people here are not doctors. We can only share with you our own unique experience and what works for us, in the hope that it may work for you. So its up to you to discuss the various options with your doctor and to decide whether or not to try each and everyone method.
You are welcome here and you can continue to ask as many questions as you need to, we are only trying to help. Sometimes the best love is tough love where things are said simply as they are, no sugar coating, that way the real message can get through.
I wish you all the best and that your cycle will end soon and you will enjoy many many painfree days and nights.
God bless.
Annette
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MJ
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Re: Goodbye Everyone--Sorry For Being A Pest
« Reply #9 on: Sep 6th, 2006, 8:31pm » |
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Some good questions were presented Irish.
Hope you got some good answers all the same.
Sounds like the CH is making you a little withdrawn and irritable. Its a part of the battle we all fight. Aint no big deal and what Brewcrew said "c'mon back. We really don't want you to suffer"
What works for one doesnt allways work for another and nothing worked for me untill recently. It only took 30 years to find it.
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Katherinecm
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Re: Goodbye Everyone--Sorry For Being A Pest
« Reply #10 on: Sep 6th, 2006, 10:29pm » |
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Superirish,
I'm sorry you don't feel you're being supported. When I first started here I didn't feel very supported either. But I'm glad I stuck with it- I have gotten more knowledge here than from my neuro. Keep in mind that many of the senior members of the board are chronic, and constant hits can leave anyone with a bad temper. Give everyone some grace, and don't take anything personally. You might find, like I did, that the people who you feel are criticizing you most now become some of your strongest allies later.
There's something I suspect you don't understand. There are no magic pills with CH. I thought, when I first went back to my family doctor a few years after my first cycle, that I could take something and it would end the cycle for me. That's what the doctor seemed to think. But that's not the case. It's very important to understand that.
The point of preventative medicines are to reduce the number of hits you have, not to get rid of them completely. If verapamil is a preventative that works for you (and it's the one you should try first because it's the one that helps over 90% of CH sufferers, if you believe Mayo Clinic studies), then it will knock out maybe half of your hits. This may mean your hits will be less severe, or it may mean that you will have less of them. Hopefully both.
There are things to help manage the hits, and there are trade offs to everything. Maxalt is a triptan, a drug that no one here wants to see you overuse. There are several reasons for this- in the short term, while it will make one hit go away, it may cause rebound headaches later. MANY of us have made our CH worse by overusing medications, and none of us want that to happen to you. In the long run, triptans have not been studied for long term safety but it is suspected that they cause heart, liver, and kidney damage. Risking your long term health is ONLY wise if you are getting hit so hard and so many times that you have to overuse triptans to preserve your mental health. Also, they are expensive.
The reason brewcrew and others have been encouraging you to try oxygen is that you can take it instead of the maxalt when you get hit. For most people it works well and fast. It is cheap, natural, not addictive, and poses no long-term risk to your health (except for possibly looking like a dork if you become one of us who totes a portable tank with you everywhere). It may take care of another 40% of your hits. For the really stubborn, awful ones that oxygen doesn't help for, that's when you take something like Maxalt.
You still might be left with shadows or a time when you are away from your oxygen tank or can't get to your maxalt. That's when things like red bull or applying heat or cold to your head (whichever works for you), help a little. No, they may not relieve an attack completely, but if they knock a KIP-8 down to a KIP-6, or delay your attack for 20 minutes while you get to your oxygen, it is worth it.
You can also combine the ice, redbull, oxygen, maxalt, etc for the really bad hits. Nothing is going to work 100%, at least not yet. Maybe in 20 years some new research will be done that will be the cure for everyone, but at this point, no such thing exists. We are here to support you. Don't forget that.
Katy
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Re: Goodbye Everyone--Sorry For Being A Pest
« Reply #11 on: Sep 6th, 2006, 10:38pm » |
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"Farewell, sweet prince!"-Shakespeare
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Paul C
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George_J
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Re: Goodbye Everyone--Sorry For Being A Pest
« Reply #12 on: Sep 7th, 2006, 12:42am » |
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on Sep 6th, 2006, 5:05pm, Superirish2005 wrote:| unbelievable, the attacks just keep coming. You guys amaze me. I came to get help and this happens. |
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OMG.
What attacks?
We've specifically told you many times that you--are--not--being--attacked. Questions are not attacks.
There's been plenty of good advice given here. We'd like to help you, but we're not going to wring our hands over your situation and play patty-cake and make nice-nice. If we think you're listening, we'll give it everything we have. If we think you're not listening, we'll tell you that as well.
EVERYBODY here knows what it's like to get hit. I'm not sure you comprehend that. This isn't the outside world where you're trying to explain this to "normals". You're talking to real people who really understand what you're talking about. Some of us have been fighting these things for twice as long as you've been alive.
What's offered here is better than tea and sympathy. It's REAL HELP with these horrible things. We can offer that. But we ain't your mother.
You've got to make decisions on your own, based on the most complete information you can get. We can help provide that information.
As has been said already, if you came expecting a magic bullet to end these, you won't find it. I don't care how many things you try. It doesn't exist. Deal with it. We've had to. You can too.
As I've said before, as far as I'm concerned, you are welcome here. Come back if you wish. Again, YOU ARE NOT BEING ATTACKED.
I'm not sure how much clearer we can be. If you leave, I'll regret your decision. But it's yours to make.
George
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Re: Goodbye Everyone--Sorry For Being A Pest
« Reply #13 on: Sep 7th, 2006, 12:59am » |
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"Methinks the (lad) doth protest too much!"-Shakespeare
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Re: Goodbye Everyone--Sorry For Being A Pest
« Reply #14 on: Sep 7th, 2006, 7:15am » |
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Been reading these Irish threads.
Seems to me, Super pushed every button:
laying down,
light'
vomiting,
etc.
Me thinks your Irish is the dogman.
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chopmyheadoff
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Re: Goodbye Everyone--Sorry For Being A Pest
« Reply #15 on: Sep 7th, 2006, 7:43am » |
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i think your taking the p1ss if i may be so blunt.
the people who you are criticising are not paid to be here for you. they are sufferers same as yourself.they do not owe you anything.
i am truly sorry for you that you are in pain and will help in any way i can. same as everyone else here though all i can do is let you know what has worked for me and suggest some things that maybe you havent heard of.
if they dont work for you then tuff. try the next thing.
what i am greatly offended by is the way that you seem to belittle everybody else.
You are moaning that you still have a week or so left in your cycle. BIG F#CKING DEAL
TRY A SEVEN YEAR CYCLE MATE -
remember - there are always others worse off than yourself.
be grateful that people on here actually care enough to ignore their own pain for a moment and offer you help.#
you ungrateful idiot.
good riddance to you i say. you obviously only here to take and not give.
byeeeeee 
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BigCoffinHunter
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Re: Goodbye Everyone--Sorry For Being A Pest
« Reply #16 on: Sep 7th, 2006, 10:09am » |
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It's definitely hard to accept that in this age that there just is no 'cure'. Most people just don't get it and say 'why don't they give you something for that?' You basically have to learn to deal with the fact that you are going to have to try a variety of different preventatives and abortives until you find combination that lets you live a decent life through your cycle.
I haven't followed the whole thread, but an abortive like Maxalt is a very tiny part of the equation. You and your doc will need to argue with insurance companies, and try a lot of options. If you are at the end of your rope, a simple run of steroids may provide you with a week or two of relief while Verapamil or another preventative builds in your system. Trust me when I say that a week or so of being pain free will allow you to regain your sanity. Again, not a cure, but a temporary break can make a big difference.
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JeffB
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Re: Goodbye Everyone--Sorry For Being A Pest
« Reply #17 on: Sep 7th, 2006, 11:31am » |
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Sorry for this, but this person needs to look to the left and do some research rather than asking a million fucking questions. Obviously this person just wants to waste everyones time and reject their advise then ask more stupid fucking questions. Again, sorry for the rant!
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Superirish2005
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Re: Goodbye Everyone--Sorry For Being A Pest
« Reply #18 on: Sep 7th, 2006, 1:35pm » |
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HEY, I HAVE BEEN READING THE RESPONSES AND I AM NOT VERY HAPPY WITH WHAT I HAVE SEEN,
ONE GUY CALLING ME AN IDIOT
ANOTHER GUY WAVING GOODBYE TO ME
ANOTHER GUY TELLING ME I AM WASTING EVERYONE'S TIME
ANOTHER TELLING ME I ASK TOO MANY "FUCKING QUESTIONS"
thanks for the support guys and if anyone cares I had a kip9 last night because I refused to take my last Maxalt and am home from work today in major pain!!!!!!!!!!
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Charlotte
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Re: Goodbye Everyone--Sorry For Being A Pest
« Reply #19 on: Sep 7th, 2006, 1:40pm » |
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Irish, call your doctor. It is not anyone here's fault that you had a kip 9. You need to talk to your dr.
You only responded to 1 of my emails and that was to blame someone else for your trouble. You have not responded to me, personally.
You have a script for Verapamil. Fill it. Use it.
Ask your doctor about O2.
Charlotte
People care about you.
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| « Last Edit: Sep 7th, 2006, 1:44pm by Charlotte » |
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Brew
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Re: Goodbye Everyone--Sorry For Being A Pest
« Reply #20 on: Sep 7th, 2006, 1:44pm » |
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The help is here if you're willing to accept it.
I have had you in my thoughts and prayers since we had our little run-in. I'm not taking back anything I wrote, because I believe it to be sound, experienced advice. The negative vibes you are sensing from others is their frustration with your refusal to heed what we're telling you.
If you a hell-bent on leaving, then leave. If you really want to do something to address the pain in your head, then stay. Stay or go. Those are your choices. But soon people will just stop responding to the drama.
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seasonalboomer
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Re: Goodbye Everyone--Sorry For Being A Pest
« Reply #21 on: Sep 7th, 2006, 1:57pm » |
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on Sep 7th, 2006, 1:35pm, Superirish2005 wrote:HEY, I HAVE BEEN READING THE RESPONSES AND I AM NOT VERY HAPPY WITH WHAT I HAVE SEEN,
thanks for the support guys and if anyone cares I had a kip9 last night because I refused to take my last Maxalt and am home from work today in major pain!!!!!!!!!! |
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we do care dude. believe me, more than anyone other place in the world, the people here care.
but, we're not here to make you happy --- we're here, volunteering input that can help you experience less pain from cluster headache. and maybe give you a little empathy. and some times, in this case, a little kick in the ass to get going.
scott
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Re: Goodbye Everyone--Sorry For Being A Pest
« Reply #22 on: Sep 7th, 2006, 3:44pm » |
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Superirish,
I hope you can get more Maxalt. It worked well for me too. As for feeling put off by some here, you should have seen my first few posts. I got called all kinds of names and given some very unpleasant remarks. (Of course I had intentionally irritated some folks). My point being, don't be put off. Have thick skin and stay around. I got through, and now I try to help others occasionally while out of cycle. This is the best place for it. And I know you can take some abuse, afterall you are a cluster sufferer!
Best pain free wishes and prayers for you, Rich
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BigCoffinHunter
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Re: Goodbye Everyone--Sorry For Being A Pest
« Reply #23 on: Sep 7th, 2006, 5:04pm » |
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Just calm down and start taking advice from people who all go through the same thing you do. GET THE VERAPAMIL. It helps a lot of people. It takes time to build up in your system, so every day you don't take it is another day of CH. Keep in contact with your doctor, let him know what is working and what is not. Ask your doc about oxygen. Stock up on coffee and red bull. There are things you can do to improve your situation, but if you don't do them, there's nothing any of us here can do. All we can do is tell you what works for us and how we cope.
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Sandy_C
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Re: Goodbye Everyone--Sorry For Being A Pest
« Reply #24 on: Sep 7th, 2006, 5:15pm » |
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on Sep 7th, 2006, 1:35pm, Superirish2005 wrote:HEY, I HAVE BEEN READING THE RESPONSES AND I AM NOT VERY HAPPY WITH WHAT I HAVE SEEN,
ONE GUY CALLING ME AN IDIOT
ANOTHER GUY WAVING GOODBYE TO ME
ANOTHER GUY TELLING ME I AM WASTING EVERYONE'S TIME
ANOTHER TELLING ME I ASK TOO MANY "FUCKING QUESTIONS"
thanks for the support guys and if anyone cares I had a kip9 last night because I refused to take my last Maxalt and am home from work today in major pain!!!!!!!!!! |
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Irish - yes, we do care that you had a kip 9. We've all experienced the lovely Kip 9 hits, so don't for one minute think that you are alone there.
I see from your post, quoted above, that you are unhappy with several people for what they posted to you. What about all the others who have done nothing but post helpful information, suggestions of things you could try to ease your pain, posted just plain old caring support? What about those people?
Do you not understand that we are here only to help each other, as well as to possibly learn something new that might help ourselves? Do you not understand that we suffer just as much as you do with this disease/affliction, whatever you want to call it. Do you not understand that many here have had a lifetime of experience dealing with CH. Do you not understand that there is no cure - no magic bullet, and that all you, or any of us can do is get through it using whatever weapons are available to us, and whatever weapons work for us.
We don't want to see you suffer if you don't have to. We want pain free days and nights for you, just as we want them for ourselves.
All we're trying to do is share our weapons with you, but you don't seem very enthusiastic about trying any of them. That is frustrating to us. So, after a period of time, and many posts, we get the impression that you are not really here to learn about CH and find ways to help yourself, but that you are only here looking for that magic bullet, and here to bemoan your plight in life.
Only you can help you! All we can do is offer our suggestions and experiences. You can take it, or you can leave it. The decision is yours to make. I sincerely hope you decide to stick around and really try to help yourself.
Sandy
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