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thomas
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Re: I can't do this anymore
« Reply #50 on: Nov 21st, 2007, 9:15am » |
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If you're afraid of going to sleep, try melatonin again, you might want to mix in some "time-release" melatonin with the regular type, take it about 2 hours BEFORE you want to go to sleep, and take a nice hot steamy shower before bed as well. I would try and get off the trex as soon as possible, if you are having more CH attacks, it is quite possible you are getting rebounds from the imitrex. I spent 8 years taking imitrex and those were the hardest of my 15 years dealing with this. Get some O2 and fast.
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| « Last Edit: Nov 21st, 2007, 9:19am by thomas » |
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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Brew
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Re: I can't do this anymore
« Reply #51 on: Nov 21st, 2007, 10:41am » |
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on Nov 21st, 2007, 9:15am, thomas wrote:| If you're afraid of going to sleep, try melatonin again, you might want to mix in some "time-release" melatonin with the regular type, |
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Or try mixing in 25-50mg of Benadryl (get the generic stuff - much cheaper, same ingredient).
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naka425
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Re: I can't do this anymore
« Reply #52 on: Nov 21st, 2007, 10:55am » |
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Well after my ER expirence I called the Doc and she sent me some free shots untill i get to the Nuero. She aslo told me to take 800 mg of I buprofin every 8 hours.. Ith i bu doenst seem to help.
BUT my aunt suggested I go to this doc who deals in Natural medicine. He said he has treated cluster headaches. So I am headed to see him today at 6. Wondering if anyone else has gone this route?
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thomas
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Re: I can't do this anymore
« Reply #53 on: Nov 21st, 2007, 11:22am » |
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Well, I am trying a "natural" route right now, and I suppose the last three years I've been pretty natural - preventives were melatonin and magnesium.
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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naka425
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Re: I can't do this anymore
« Reply #54 on: Nov 21st, 2007, 11:26am » |
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I have tried Meletonin before.. It just didnt work..
Are you still having Pain with the "natural route"?
I guess at this point I dont care if its natural or not... I just want something that works.
I guess this doc does alot in chinese medicine.
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thomas
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Re: I can't do this anymore
« Reply #55 on: Nov 21st, 2007, 11:34am » |
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Yes I am still getting attacks, but today seems to be better, I am doing the RC seeds method. How much melatonin were you taking, and when were you taking it?
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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naka425
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Re: I can't do this anymore
« Reply #56 on: Nov 21st, 2007, 11:54am » |
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I took whatever was suggested on the bottle. I took it before bed. I think.. It was a few years back that I had tried this. Amoung many other things.
If your still having attacks... what do u do? Just suck it up and live through the whole attack? Nothing to abort it? In 3 years?!?!?
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naka425
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Re: I can't do this anymore
« Reply #57 on: Nov 21st, 2007, 12:03pm » |
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Also I read in your who is who amoung newcomers that you felt like an imtrex junkie.. Thats where I am at.. I swear the pharmacy has some sorta conspiracy against me. They give me a hard time when i get shots every 2 days. And.. Sometimes I call to see if they have shots.. they ask my name then tell me no... I seriously am a imitrex adict. 
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thomas
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Re: I can't do this anymore
« Reply #58 on: Nov 21st, 2007, 12:16pm » |
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on Nov 21st, 2007, 11:54am, naka425 wrote:I took whatever was suggested on the bottle. I took it before bed. I think.. It was a few years back that I had tried this. Amoung many other things.
If your still having attacks... what do u do? Just suck it up and live through the whole attack? Nothing to abort it? In 3 years?!?!? |
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No, I've been using zomig. It gives you longer pf times between attacks than imitrex, BUT it can still cause rebounds. Also O2, but I've not done any zomig this cycle and haven't done O2 since Thursday (tank's empty), so yeah, I've been sucking it up this week.
As far as the melatonin goes, you want to take from 9-18 mgs 2 hours before bed, that should get you through the night. you have to play with the dosages, it has helped a LOT of people here. Don't pass it off, because it didn't work one time a long time ago. It can literally change your life.
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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thomas
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Re: I can't do this anymore
« Reply #59 on: Nov 21st, 2007, 12:18pm » |
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on Nov 21st, 2007, 12:03pm, naka425 wrote:| I seriously am a imitrex adict. |
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That's probably why this cycle is so bad too. I will never, EVER take that poison again.
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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Brew
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Re: I can't do this anymore
« Reply #60 on: Nov 21st, 2007, 5:14pm » |
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on Nov 21st, 2007, 12:18pm, thomas wrote:
That's probably why this cycle is so bad too. I will never, EVER take that poison again. |
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It's not poison, my friend. It helps a LOT of people. You may have an opinion about it, but there are many people around here who don't share that opinion. And for the record, I've never taken it, so my opinion is based only on my observation of others.
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thomas
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Re: I can't do this anymore
« Reply #61 on: Nov 21st, 2007, 5:23pm » |
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on Nov 21st, 2007, 5:14pm, brewcrew wrote:
It's not poison, my friend. It helps a LOT of people. You may have an opinion about it, but there are many people around here who don't share that opinion. And for the record, I've never taken it, so my opinion is based only on my observation of others. |
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Trust me there are MANY people here who share my opinion.
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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Brew
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Re: I can't do this anymore
« Reply #62 on: Nov 21st, 2007, 5:44pm » |
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on Nov 21st, 2007, 5:23pm, thomas wrote:
Trust me there are MANY people here who share my opinion. |
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That may be true, but poison, by definition, helps nobody and hurts all it touches. That cannot be said for trex.
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thomas
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Re: I can't do this anymore
« Reply #63 on: Nov 21st, 2007, 5:52pm » |
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on Nov 21st, 2007, 5:44pm, brewcrew wrote:
That may be true, but poison, by definition, helps nobody and hurts all it touches. That cannot be said for trex. |
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Well it's poison for me. All it does is give me more hits with greater intensity and longer cycles. Sound like a miracle to you?
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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Brew
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Re: I can't do this anymore
« Reply #64 on: Nov 21st, 2007, 5:57pm » |
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on Nov 21st, 2007, 5:52pm, thomas wrote:
Well it's poison for me. All it does is give me more hits with greater intensity and longer cycles. Sound like a miracle to you? |
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Look, I don't want to argue with you over what boils down to the definition of the word "poison." I get it that you hate the stuff. I get it that there are others who do as well.
The definition of a word isn't just about your experience, however. There are others whose lives have literally been saved by it.
That's all I'm saying.
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Kevin_M
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Re: I can't do this anymore
« Reply #65 on: Nov 21st, 2007, 7:58pm » |
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on Nov 21st, 2007, 5:57pm, brewcrew wrote:| There are others whose lives have literally been saved by it. |
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Yes, my days before any preventative saw a lot of daily Imitrex use when it was all I had, but needed. While still episodic, more frequent, all high intensity coupled with the longer abortive time of the nasal spray was a tough time. Now with a preventive med and oxygen, sparing use of Imitrex has been strictly very helpful.
Quote:| But the last 3 weeks they have been 9-10s. Just very irregular for me. |
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naka425: Sometimes with also a higher frequency, that could be because of using Imitrex very often. It's very important to add a preventative and oxygen. Ice packs were my only respite having just Imitrex.
Those higher doses of melatonin Thomas mentioned could be helpful until the neuro appointment.
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| « Last Edit: Nov 21st, 2007, 8:05pm by Kevin_M » |
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LukeAlberts
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Re: I can't do this anymore
« Reply #66 on: Nov 21st, 2007, 11:43pm » |
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I'm sorry you're suffering as you are, naka. My name is Luke Alberts and I too have suffered cluster headaches for a long time, always localized to the same side of my face, head, and neck, and usually during the same season (autumn). I'm convinced that they in part result from changes in barometric pressure. I've tried several medications including Ergotomine (too toxic!), Butabital (effective but addictive. It is a barbituate.), pure oxygen (somewhat effective). I'm afraid of Imitrex because it is so habit forming and expensive. Someone recently suggested what's known as Gamma Knife surgery. Has anyone tried this? Does it work? It's basically gamma rays fired into ones head. Terrifying! Didn't anyone read The Incredible Hulk comic book growing up? I'm back to taking Butabital -- SPARINGLY --and far too much caffeine.: 4 to 5 cups of coffee per day. The coffee helps regardless of what stage in the Kip cycle I am. If I can somehow yield all of my insane deliberations of drawing blood out of my temple with a syringe at the height of the cycle and somehow get some coffee in me I have a fighting chance of overcoming the cluster.. I really want to change this pattern and "treatment" as, I'm sure, do we all. I'm so grateful I found this site.
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LukeAlberts
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Re: I can't do this anymore
« Reply #67 on: Nov 22nd, 2007, 12:03am » |
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I meant to add that the other night I suffered a c.h. without any kind of medicine or access to it. I was on the subway here in New York. I ended getting off the train early and walking home almost 3 miles. Usually I can't get out of bed once in the throws of a c.h. but somehow I held it together to get home. I've lived with these monsters for almost 20 years and maybe now I'm just starting to defeat them.
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naka425
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Re: I can't do this anymore
« Reply #68 on: Nov 26th, 2007, 2:40pm » |
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I couldnt "quote" everything that was said about Imitrex. Bc my post would be forever long.
BUT I'm on both sides here.
Imitrex is the ONLY abortive I have at the moment. In the torture of a CH I will take it. It does work. BUT I do believe I am having rebound headaches from it. Knowing this does not stop me from grabbing my pen and injecting myself during a headache. Why? Because I KNOW it will go away with the shot. I also KNOW I will get another headache. But the relief I get seems worth it rather than sucking it up. After months of CH I dont think I could suck up another one without any abortive treatment.
Also I read alot about acupuncutre on here.
Unfortunitly when I went to the 'natural doc' he happened to be a acupuncurist and talked me into acupuncture. I WOULD NOT let him put them in my face. Which may or may not have defeated the purpose. Anyways I didnt notice a huge change in my headaches. Negative or Positive. I am going to try it one more time.
I am also headed to the Nuero tom!!! I feel like I'm Goin to Disney Land!! I cant contain my excitement! Wierd huh!
Last but not least. I have had 2 CH free nights..
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naka425
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Re: I can't do this anymore
« Reply #69 on: Nov 26th, 2007, 2:47pm » |
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on Nov 22nd, 2007, 12:03am, LukeAlberts wrote:| I meant to add that the other night I suffered a c.h. without any kind of medicine or access to it. I was on the subway here in New York. I ended getting off the train early and walking home almost 3 miles. Usually I can't get out of bed once in the throws of a c.h. but somehow I held it together to get home. I've lived with these monsters for almost 20 years and maybe now I'm just starting to defeat them. |
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I feel for you on that. I was in Hawaii about 3 years ago with my friends. We decieded to walk the strip and go bar hopping. ( I was unware that drinking was a trigger at that time). Our Hotel was about 1 mile or so away. out of no where a CH came on. ( I also didnt have any abortive meds at that time)
Being that we were in Hawaii and all I didnt want to ruin everyones night. Somehow I managed to walk back to the hotel without getting arrested as a drunkin crazy lunitic. I maintained composure untill I made it to the room. After that I lost it.
I also dont know how I kept it together. It must just be a mental thing. Not wanting the world to see you pain. So you suck it up? Idk.. But I hope all is well with you.
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Sean_C
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Re: I can't do this anymore
« Reply #70 on: Nov 26th, 2007, 4:25pm » |
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on Nov 21st, 2007, 5:14pm, brewcrew wrote:
It's not poison, my friend. It helps a LOT of people. You may have an opinion about it, but there are many people around here who don't share that opinion. And for the record, I've never taken it, so my opinion is based only on my observation of others. |
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When I first used trex, I called my doc in disbelief. I went 10 years in agony with literally THOUSANDS of clusters under my belt, and I took one shot of trex and my cluster was gone 5 minutes later, it was an unbelievable feeling, I remember it like it was yesterday.
Back to the original trex question, why don't you use syringes naka. I can get maybe 4 attacks out of one vial of trex. It takes a little longer to work, but you can abort more attacks with the prescribed amount per day. I also use my clustermasx with my 100% o2, and lots of ice bags. I also wait while using just my o2 and ice until my cluster is at a kip 3 and building before I take my trex. Sometime I can get lucky and the o2 works perfectly, other times it needs a little help.
Just for the record, I have no problems with anyones belief in any CH abortive or preventative. My only issue with any medication is when someone takes more than the prescribed dosage given by the doctor because someone here thinks its not enough.
Good luck with your choices naka, lots of experienced clusterheads here, but I honestly think you should discuss all options and changes with your doc. If you want to discuss an medication option, you both should decide, ultimately, he's in charge of your well being.
Cheers,
Sean......................................
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naka425
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Re: I can't do this anymore
« Reply #71 on: Nov 28th, 2007, 3:51pm » |
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UPDATE!!!
I just went to the Neuro yesterday, and I loved him! He upped my dose of Cartia. Wrote a script for O2, wrote a script for trex and I have a follow up in 2 weeks. At last I have some real weapons to use against the beast.
My only fear is I am becoming Chronic. My headaches have been going on since August. With only 3 or 4 pfn.
That would be hell.
Well I hope the rest of you are all having pfd and pfn.
I think about you all on a daily basis.
With love,
Naka
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Jonny
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Re: I can't do this anymore
« Reply #72 on: Nov 28th, 2007, 4:17pm » |
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on Nov 28th, 2007, 3:51pm, naka425 wrote:
My only fear is I am becoming Chronic. My headaches have been going on since August. With only 3 or 4 pfn.
That would be hell. |
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The good news is...is that you wont know if you are until August 08.
Hell?.....at first, managable?.....YES!
I did chronic for more than 30 years and im still here. I woke up one day two years ago and they were gone.
Will they come back?, I dont know....but I never tell the doc I am PF and I just keep stockpiling the meds for the day it does.
I had no fear when I was chronic because I always knew they would be there, and I was always ready for them.
Now, I fear everyday that they will come back!
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
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Rosybabe
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Re: I can't do this anymore
« Reply #73 on: Nov 28th, 2007, 4:24pm » |
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maybe your cycle is getting longer because you are having rebound headaches. Once you start the O2 you will need less and less trex and you will be able to see if this breaks the cycle.
Good luck to you and pain free wishes!
Rosy.
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naka425
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Re: I can't do this anymore
« Reply #74 on: Nov 28th, 2007, 5:54pm » |
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on Nov 28th, 2007, 4:17pm, Jonny wrote:
The good news is...is that you wont know if you are until August 08.
Hell?.....at first, managable?.....YES!
I did chronic for more than 30 years and im still here. I woke up one day two years ago and they were gone.
Will they come back?, I dont know....but I never tell the doc I am PF and I just keep stockpiling the meds for the day it does.
I had no fear when I was chronic because I always knew they would be there, and I was always ready for them.
Now, I fear everyday that they will come back!
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How Aweful... I dont think I could live with them everyday.... I get so mad now when I get them.. which only makes the pain worse..
I hope you never have to go through that again!!
Being prepared or not.. its just an aweful feeling to fear sleep..
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