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Topic: Changing the Dance.... (Read 272 times) |
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Jill
CH.com Alumnus
New Board Old Timer
"Life is a series of goodbyes and hellos" Billy J.
  
 
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Posts: 352
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Changing the Dance....
« on: Nov 26th, 2002, 9:36pm » |
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I have ranted and raved to you, poured my heart out to you and have exposed my soul to anyone who would listen. The support that I have received has been enormous and I cannot begin to thank you enough but you are right, I need to help myself too. I need to try and get myself out of this hole but I still cant do it alone, something that I am not afraid to admit.
I am not sure how I think that you can help, why you may want to or even if you can or will. I am lost in this mess, I am confused in where to turn next, I have no clue in what to do now. I cry now as I write this, I try to get by how helpless I feel, how hopeless this all seems, it is all so much.
This beast has been thrusting his sword into my head so much lately and the pain has left me exhausted, weak and just in despair. He hits me more than eight times aday and leaves shadows to remind me that he has not left. I am not allowed to sleep, maybe an hour a night, almost two if I am lucky. It is no wonder, I suppose, that I am in such a dark part of my life.
I have begun to hide away from the world, seems easier than to face those that do not understand and that are just going to run away anyway. I have missed so many classes that it is a challenge to just finish the last two weeks of school, I can only imagine how my finals are going to play out. I have lost a countless number of friends, family has turned away and loneliness has taken hold of me. I know that you are there, sometimes it is hard to see and a reminder is needed, sorry. I need relief, sleep…just a little would be nice.
I have taken so many meds and none of them have worked, there seems to be no relief in sight. I was on 360 mgs of verapamil and 600 mgs of lithium but now that my lithium levels are off, I have to change my meds completely. The verapamil and lithium did not seem to be doing any good but now that I have changed meds, the beast has been hitting me harder. I am now taking Indocin but I don’t feel that it is going to work, besides making me sicker. My doctor doesn’t know what else to do now, my options are running low, as I have tried so many medications. Oxygen doesn’t bring relief, though I am going to try again and the imitrex shots only reduce the pain to a manageable level, never aborting it and I can only get two shots per month.
I am telling you all of this but I am not sure what I am expecting or thinking that is going to happen, maybe nothing or maybe a miracle. I am so tired right now; I just want relief, even if just for an hour. The tears continue to flow, will relief really come?
Thanks for listening and helping, I am still reaching for you, I am ready to dance with another, and though I am tired and weak, I want to beat this beast just as he has me, to make him cry, plea and beg for his life, kill him just as he is slowly killing me. That is a bit rough, sorry, I just want him out of my life....
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"If you learn from your suffering and really come to understand the lesson you were taught you might be able to help someone else who is now in the phase. Maybe that is what its all about after all.."
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OneEyeBlind
New Board Hall of Famer
Yea, I can do this
Posts: 574
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Re: Changing the Dance....
« Reply #1 on: Nov 26th, 2002, 9:51pm » |
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Jill, perhaps you should try no meds with the O2. O2 has no side effects and perhaps all the meds you are on are giving you rebound headaches. I know it's brave to go bare faced up against the beast but none of the meds you have are working anyway.
Step back and start over. At least with out any side effects from the meds you are taking you might find some blissful sleep between the attacks. Use hot towels, use cold peas, use the O2 and see where you get.
You need to pull on that savy that you have and try one last time to fight !!!!
You know I am always here.
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One cannot step twice in the same river, for fresh waters are forever flowing around us.
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Opus
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(Insert witty comment here)
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Re: Changing the Dance....
« Reply #2 on: Nov 26th, 2002, 9:54pm » |
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I lost my friends just telling them about CH. Keep relying on your friends here. I'm still praying. PJB
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Zed-Zed-nine plural-Zed alpha,
There is no place like home.
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fubar
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Re: Changing the Dance....
« Reply #3 on: Nov 26th, 2002, 9:54pm » |
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OneEyeBlind has a valid suggestion. It defies logic, but pure oxy (and no pharmi) could make Jill a happy girl. It works for me, and I still don't believe it.
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"He who has a why to live for can bear almost any how." -- Friedrich Nietzsche
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Jabeen
New Board Veteran
What doesn't kill you, makes you stronger.
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Re: Changing the Dance....
« Reply #4 on: Nov 26th, 2002, 9:58pm » |
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I can not offer more than my sincerest wish you can find relief soon. I am blessed that my experience with the beast has been mild in comparison. After being a part of this board, I live in fear that mine might someday escalate and I could be in your shoes. Are you episodic? Are there ever any breaks? Hope so-and hope one is soon...hang in there.
Jabeen 
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OUCH member since 9/5/02
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rumplestiltskin
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sometimes the best intentions just aren't enough...an sometimes we just gotta have help of the professional kind to sort out ourselves. You may be there...I don't know...butt the smart person will seek council and those around them who see this "need" in those they are trying to help will at least suggest it....
to everything there is a season
...as in every field there are good ones and bad ones. There are some talented councilers out there. When the shitstorm can't be stopped...we gotta get the tools to deal with it....tools that we aren't born with....or ...just seem to loose along the way.
Walk in the sunshine
den
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SommelierCH
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I’m awed by the amazing resiliency that we possess
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Re: Changing the Dance....
« Reply #6 on: Nov 27th, 2002, 1:09am » |
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Jill,
This is not my area, but I read other posts that said the Verapamil could go up to 960 mg., small increases until it worked. I assume that Verapamil is less toxic than Lithium, so maybe you should try that. Since you can only get 2 injections of Imitrex per month, after that’s done, why don’t you try another triptan like I use. Maxalt MLT 10 mg. is my favorite and it comes in 6 packs (like beer) but I am now using Zomig ZMT 5mg. and it also works (but I feel a little like a hangover in the morning), the ones I got are in a 3 pack (like magnums of Champagne).
Love you,
David J.
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Wine is a little like love. When the right one comes along, you know it!
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Murazza
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just keep on walkin'...
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Re: Changing the Dance....
« Reply #7 on: Nov 27th, 2002, 3:46am » |
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Jill,
I know there's nothing I can do, just wish you strength and relief.
Keep posting ok?
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A Fool with a Tool is still a Fool...
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suzy617
CH.com Alumnus
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Love is friendship set on fire
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Re: Changing the Dance....
« Reply #8 on: Nov 27th, 2002, 5:04am » |
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Jill, Some people here have tried OTC drugs, i'm not really sure what they are, but if you search you'll find the info here but anyways they are to prevent you from going into rem sleep when the beast usually attacks. It allows them a couple nights sleep but cannot be taken more then 1 or 2 nights. I think it might be draminine or benedryl but not sure. Can't help you with your pain but maybe a nights sleep will clear your head a bit. Please seek other professional help also. Your in my thoughts,
suzy
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When God measures men, He puts the tape around the heart, not the head.
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Stampertje
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Re: Changing the Dance....
« Reply #9 on: Nov 27th, 2002, 5:33am » |
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Hi Jill,
I don't know much about medicines, because I have just started trying some meds. So far nothing is working yet, so I won't give you any advice about it.
I have to agree about the help. Everyboy needs somebody to listen to their crap and to help them sort themselves out. The people here will certainly listen to you, but if that is not enough to get you through it... Try a proffesional then.
I wish I could offer you my shoulder and my ear, but there is a little distance problem. I am thinking about you.
I'm glad you haven't lost your fighting spirit, because that will help you get through it.
Wishing you PFDAN and a night's sleep.
Stampertje
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Jill
CH.com Alumnus
New Board Old Timer
"Life is a series of goodbyes and hellos" Billy J.
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Re: Changing the Dance....
« Reply #10 on: Nov 27th, 2002, 7:48am » |
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I have been battling this beast now for a total of eight months with no true breaks in the months. This beast has never been this cruel to me before, never slammed my head as much as he has now. Used to be at night, after I fell asleep and sometimes during the day. I could handle this, didnt want to, but it was so much better than this hell that I am being forced to live in now. Nine weeks of pure torture, agony, hate and I am losing my spirits and my fight.
Indeed my fighting spirit is not gone but is lacking in strength and courage. As much as I want to, as much as I try to hear my music, my beat, my thoughs, he is much stronger. He is so strong that he can overtake me in minutes, leaving me powerless to his ways. I cry, plea, beg, bargain with him and everyone but nothing. This beast, this beast is the devil stomping in my head, this is just not fair.
Sorry, that was my little rant for today after a long night of dancing. This beast has no mercy at all..
Now, the oxygen was first tried when I was on no meds but I am willing to try again. I am not sure that it will help, dont have much faith in it, but I have absolutely nothing to lose at this point. I just hope that I can reborrow the tank, I cant get my own.
Yes, two imitrex shots a month are nothing and seems so pointless to even have, takes both of them to knock down that killer hit of the night. I thought about divying up the doses but I fear that that is not going to be affective, especially if it takes 12 mg to just make one more bearable. I asked my doctor for maxalt or any other abortive but he wont prescribe them, would rather look for a preventative that me using abortives everyday. That is great but not right now, I mean really...I have already tried so many abortives such as the zomig, nasal spray, imitrex pills and have gotten no relief. I am beginning to think that it is not out there, not to be discovered by me..
As for sleep, that seems to be an entirely different issue and has caused me to become this horrid person, not that the CH hasnt helped that at all. Still, I have tried both dramamine and the benedryl in hopes of getting atleast a tid but of rest. The beast thought otherwise and instead of just screaming in pain, I had to add pure exhaustion on top of that. If only I could get a night, is that so much to ask?
So for now, until I can get things figured out, I still have no relief. I am afraid that changing my meds was not such a good idea, the beast has really been on a rampage now. Seems like I just opened the invitation to him and he has accepted with much excitement.
I thank you for your help, so many times kind words can mean the world, to me they do anyways. I hope that everyone has a pain free holiday, maybe the beast will take a vacation from everyone....
Looking for the sunshine
Jill
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| « Last Edit: Nov 27th, 2002, 7:53am by Jill » |
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"If you learn from your suffering and really come to understand the lesson you were taught you might be able to help someone else who is now in the phase. Maybe that is what its all about after all.."
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Riccardo
New Board Old Timer
Serial kisser... and Stetsons lover...
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Re: Changing the Dance....
« Reply #11 on: Nov 27th, 2002, 9:02am » |
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Jill, I agree with Sommelier.
Try to rise to Verapamil doses.
Some of us get relief with 960 mg/day!!!!
And no side effects increase.
Ciao and kisses, daughter
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Riccardo OUCH-Italia
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