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Topic: Who is who here to the newcommers (Read 24347 times) |
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sawomble
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Re: Who is who here to the newcommers
« Reply #300 on: Apr 8th, 2007, 5:12pm » |
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Hi all, I'm Sasha. I'm new to the board and new to cluster headaches. I can't remember having any before I was 28, when I had a headache wake me up at 3am for a week straight. Never had any pain like it, went to the doctor and after a couple of days of steroids, migraine meds and blood pressure meds, I was ok. The doc was reluctant to say it was cluster headaches because I'm a woman, but after an MRI, he confirmed it. That was about 3 months ago and now I'm afraid I might be about to start another cycle. I just have this feeling...starting with a dull pain in my neck, always the left side. It's the same way this other one "started". Not like a muscle ache...just wondering if anyone else here "knows" when they're coming on?
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ClusterChuck
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Re: Who is who here to the newcommers
« Reply #301 on: Apr 8th, 2007, 5:50pm » |
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Welcome to your new home!
No one can tell you if you have a new cycle starting. If it happens, it happens. No one, not even you can predict it.
What you need to do is arm yourself with the proper meds. It will be hard, as you don't know what will and won't work. The two, abortives, I recommend is oxygen and imitrex injectors. Read the tab on the left side of your screen "oxygen info" to learn what you need. Get these two, and if you start a cycle now, or in a year, they will be there and ready for you.
You might also have a sixpack of Red Bull on hand, too, as that works as an abortive for many.
Good luck, and don't be afraid to ask questions. I am sure you have plenty. Don't enter your questions here, start a new thread, and then we will have a better chance of seeing it, and others, who may have the same question, also have a better chance of seeing it, and learning at the same time you do.
Good luck, and keep us informed.
We DO care,
Chuck
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kshodges
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Re: Who is who here to the newcommers
« Reply #302 on: Apr 9th, 2007, 4:42pm » |
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Are you keeping a diary with the times/durations/kip levels of the hits? Oh, Yes. many years worth of logged entries.
Taken the cluster quiz on the left? Yes
Taking this info as well as some other CH related info may help your Neuro in their diagnosis. 15 years is a long time with no proper diagnosis. I have a diagnosis, it's the treatment I am still working on. Tried lots of things - have a diary/log for everything, had an MRI, the whole 9 yards.
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Zeitgeist
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Re: Who is who here to the newcommers
« Reply #303 on: Apr 10th, 2007, 5:19pm » |
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Hi, I'm living in Norway. Male, 35, episodic. CH since I was 19. In my 12. cycle now. Correctly diagnoed at first shot, but it took some cycles before I seeked medical assistance.
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ClusterChuck
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Re: Who is who here to the newcommers
« Reply #304 on: Apr 10th, 2007, 6:17pm » |
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on Apr 10th, 2007, 5:19pm, Zeitgeist wrote:| Hi, I'm living in Norway. Male, 35, episodic. |
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You have an EXCELLENT resource in Oslo!! Svenn!!
Will I see and meet you in Trondheim in September? There is a big headache symposium then. I will be there. You should go. A lot of good information, and fellow sufferers to interact with. Meeting other clusterheads is a MUST!!!
Chuck
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"No man can be happy without a friend, nor be sure of his friend till he is unhappy."
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Guiseppi
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Re: Who is who here to the newcommers
« Reply #305 on: Apr 14th, 2007, 5:18pm » |
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To Sawomble, I know exactly what you mean! I get this "oh sh%$ they're back feeling at least a week before I get my first twinge. I'm a man so of course I ignore that and hope I'm just imagining it. I'm always wrong, they're always back, but being a man I also refuse to learn anything from it! (Being a man is much harder then it looks!)
Guiseppi
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Rosybabe
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Re: Who is who here to the newcommers
« Reply #306 on: Apr 17th, 2007, 7:57pm » |
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Welcome Sasha and Svenn!! 
Hoping your cycles end pretty soon!!
if not...we are here to give a helping hand and an understanding ear . 
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DannyV
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Re: Who is who here to the newcommers
« Reply #307 on: Apr 17th, 2007, 10:04pm » |
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Hi. I am Danny V,from Boston. GO SOX. 37 yrs old. Had em since 19. Went untreated for years . My life is screwed up from it to this day. I am lucky though for many reasons. Friends, Family.and now this sight. [Thank you Deej] Can someone tell me about this symposium in September? Chuck? Anyone?
P.S. Ill try to get a pic up here. The Boston Globe once described me as an "Andrew Dice Clay lookalike." On the other hand, The Boston Herald saw me more as a "Saviore-fare Jimmy Olson" In the mid 90's I was singer for an award winning 9 peice "Jump Blues" band.
I used to roll a keg into the clubs and they would say, "Hey, you can't bring your own beer in here! It's illegal!" I'd say "Oh, thats just my oxygen. Don't ask."
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My life is like water, swirrling down the drain.
Gonna get me a shotgun, and disconnect my brain.
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ClusterChuck
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Re: Who is who here to the newcommers
« Reply #308 on: Apr 17th, 2007, 11:28pm » |
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on Apr 17th, 2007, 10:04pm, DannyV wrote:| Can someone tell me about this symposium in September? Chuck? Anyone? |
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The symposium in September, is in Trondheim, Norway.
There is a MUCH closer gathering in July, in Richmond, VA. Scroll down, and you will see a section dedicated to RichCon. Check it out, and join us!!! There is nothing like meeting fellow clusterheads! Lots of good people to meet, and information to learn at the lectures.
Chuck
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"No man can be happy without a friend, nor be sure of his friend till he is unhappy."
Thomas Fuller
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DannyV
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Re: Who is who here to the newcommers
« Reply #309 on: Apr 18th, 2007, 12:22am » |
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Why thanks for making me feel welcome. I would thuroghly enjoy something like that. Not only do Ch's terrify me most of my life,but I have always found them incedibly facsinating. I truly believe that the answer is a simple one, but the world is not yet meant to know it.
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My life is like water, swirrling down the drain.
Gonna get me a shotgun, and disconnect my brain.
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FFR_Chris
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Re: Who is who here to the newcommers
« Reply #310 on: Apr 19th, 2007, 9:47am » |
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Hey Gang/Sufferers,
My name is Chris and found this site this morning after one of the MOST PAINFUL and DEBILITATING cluster head aches I have had thus far! I was ready to bang my head against my garage floor as opposed to putting it through a wall which I have done before.
I am 38 and have had these for as long as I can remember and always diagnosed as having migraines. Till. . . I actually found a competent DR. who said "You have cluster head aches my friend." It was ironic because I was picking up my Imitrex that same morning and the pharma. said it sounds like cluster aches.
The head aches come on like someone just shot me in the head! However I rarely get woken up from a sleep because of the meds I take for bipolar (I could sleep through a bomb blast). I also take lithium which does SQUAT too.
Sex. . .FORGET IT!  Any type of physical exertion is also out of the question. As of now, those are the only 2 triggers that I know. I can't pinpoint any others because they come on so fast and so hard that I can't remember what I was doing pre-head ache.
I've been hospitalized twice for these and the DR's thought I was looking for drugs till I finally grabbed him by the lab coat, brought his ear to my mouth and told him "I am not looking for drugs and find out what is wrong with me or I will make sure you do not walk without a limp again." All I want is relief.
After that, besides getting a new ER. DR. and quickly too, I got and MRI and cat scan. They said it was nothing. What get's me is an ER. DR. looked at my cat/mri scans and not a neuro.????? That's like me looking at someones head and trying to decide what kind of hair cut I should give them (to a lesser degree of course) . . . I have not a clue. They did give me morphine which did SQUAT!!!
This last round I was given percocets and they helped a VERY little. I am also pretty tolerant of pain meds because of a VERY broken leg and skin grafts. I was on pain meds for almost 9 months.
These attacks last for weeks if not months, With a day or 2 of total relief in between. But always scared to make the "wrong move." If you all know what I mean (which I am sure you do)!
Pain mostly effects the left side of my head, with the droopy eye, nasal congestion, teary eye(s) and sometimes, what feels like paralysis of the left side of my face.
I think that that is it.
At witts end guys.
Chris
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DannyV
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Re: Who is who here to the newcommers
« Reply #311 on: Apr 19th, 2007, 10:03am » |
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Hi Chris.
Are you using Imitrex INJECTIONS? Any other form will not work. For me at first it was a Godsend.
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My life is like water, swirrling down the drain.
Gonna get me a shotgun, and disconnect my brain.
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Guiseppi
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Re: Who is who here to the newcommers
« Reply #312 on: Apr 19th, 2007, 3:40pm » |
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Welcome to the board Chris, sounds like you have a full plate. Curious as to what your dosage of lithium is. Lithium dosages for most other conditions tend to be at alower rate. Just for comparison, I'm male, 47, weigh 190 pounds, and take 1200 mg a day when on cycle. It's a very effective preventitive for me. Might be worth running by your doc. Again, welcome to the board I sure hope you can find some relief soon!
Guiseppi
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kshodges
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Re: Who is who here to the newcommers
« Reply #313 on: Apr 19th, 2007, 11:13pm » |
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Hey Chris,
Sorry you're having such a rough time. Have you considered trying Oxygen when having an attack? I have heard it works for many people at higher flow rates (and sometimes a special mask). I just got my fancy new clustermask today, so when I get back into my next cycle, I can try it out and share if it worked for me, or not.
Are you episodic or Chronic?
That might help your doctor prescribe a preventative that will be most effective for you, personally.
There is a lot of good information out there and people have so graciously shared their experiences on this message board. So, go grab yourself a snack and get ready to read lots and lots of stuff. And then read more and more.. there's never too much information about cluster headaches!
Kelley
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ahhpoop
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Re: Who is who here to the newcommers
« Reply #314 on: Apr 21st, 2007, 5:26pm » |
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piddle, i posted my intro a a sepreate post, "horse of a diff. color". my bad.
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Jackbilly
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Re: Who is who here to the newcommers
« Reply #315 on: Apr 24th, 2007, 10:38pm » |
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Hi there, I'm Rosie, and this is my first post. I'm a 21 year cluster head! have had a lovey 2 year break and of course like many thought I had finally beaten the beast !!! but 4 weeks ago the beast came back!!! woke me up out of a lovely pleasent sleep. Dam!! I'm on Zomig spray, topomax, and oxygen, hot cloths on the face and lots and lots of swearing!! Came across this website the other day, and have just been checking it out, it's a fabulous site and I KNOW I will be here over and over again, it's just so nice to know that there are people here who get it!! who understand that a) no I don't have migraine and b) it's not just a headache and c) I'm not making it up. For God's sake just look at my face!!! I got these headaches right before I left Ireland to come to America and actually thought I had a brain tumor (think the doc thought I had also) many docs later I've finally found a great doc who is really working hard to try to find the right combination of drugs that work, when I'm in the middle of a cycle I will try anything!! I do drink a lot of water anyway because of the topomax, it seems to help but again, just knowing that there are others who understand really helps a lot. so hello everyone and get used to seeing my name because I WILL be here a lot!!
Thanks for listening
Rosie
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Jackbilly
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Re: Who is who here to the newcommers
« Reply #316 on: Apr 24th, 2007, 10:46pm » |
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I just read my post, and it sounds like I'm saying I'm 21 years of age.................... I wish !!! I'm 41 years old and have been suffering with these dam headaches for 21 years !!! sorry for the confusion
Rosie 
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Rosybabe
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Re: Who is who here to the newcommers
« Reply #317 on: Apr 26th, 2007, 9:16am » |
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on Apr 24th, 2007, 10:46pm, Jackbilly wrote:
I just read my post, and it sounds like I'm saying I'm 21 years of age.................... I wish !!! I'm 41 years old and have been suffering with these dam headaches for 21 years !!! sorry for the confusion
Rosie |
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Hi Rosie!
My name is Rosy also, don't worry about your post, you can be any age you want to be  ..
Sorry to hear you are having to deal with the beast 
But you are in the right place, read a lot and you will find people here than can help you, maybe with advise on medications or just a shoulder to cry on...
Hang on and hope you start feeling better soon
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MR_FLOOR
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Re: Who is who here to the newcommers
« Reply #318 on: Apr 29th, 2007, 5:36pm » |
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Hi all I'm a newbe I've been getting CH for 27 years 17 untreated. I used to smoke pot cronicly. about 24 weeks ago I quit almost as soon as I quit the CH stopped.I thought I was cured for over 12 weeks not even a sign of a CH Then all of a sudden as fast as they went away they came back.And boy o boy did they come back up to 5 a day now. To make matters worse my insurance company decided they were not going to pay for any more Imitrex YAH.I called them yesterday they told me I had two more left on my perscription and I could have them if I wanted to pay for them $760.00. There must be a small markup on those ya think???? Well I know this don't help my pain but at least I can get it off my chest to people who understand me thanks for listening
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johnnypatrick
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Re: Who is who here to the newcommers
« Reply #319 on: Apr 29th, 2007, 5:53pm » |
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Well by way of introduction;my name is Johnny Patrick Hixson from St. Louis, Mo. USA . Cluster headaches just reinforce to me the idea that life sucks and then you die. There is no way in hell people should have to suffer with this kind of bizzaro affliction. In many ways this is harder to go through then , say, a crippling disease because doctors and people understand those better. I've had to run through 4 general practitioners as well as 2 neurologist before I could get help. The damn doctors would not listen and continued to prescribe meds that were no good for cluster headaches! They would not give me prednisone because I'm diabetic and steroids raise your sugar.I could treat this myself if I could just walk into a drug store and grab what I need. I used to go 2 to 3 years between attacks but now it's every year. If God came down and said, " I'll make a deal with you John, I'll take the cluster headaches away but you will have to spend the rest of your life in a wheel chair I would say, "let's go for it! Anyway I don't know how to put a picture on this thing. I have dial-up and this thing is real bad and slow for dial up. I wouldn't even care if life ended tomorrow except for my kids. I'll stick around till they get older at least. We cluster F*$%& have nothing to look forward too. Just get older and sicker everyday anyway but we can add clock work friggin orange type headaches on top of that. Headaches that torture us and won't let us sleep or work in peace. Wish I could buy Imetrix on the black market! Oh gee let me plan a vacation with these headaches. Anyway I hope you guys can find a silver lining
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friends and wine are best when they've aged
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Rosybabe
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Re: Who is who here to the newcommers
« Reply #320 on: Apr 29th, 2007, 9:06pm » |
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Hi Johnny!
Sorry to hear you are going through this, but the moment you give in to the beast , she wins!!!
Have you tried Oxygen? It is the first thing most of us use as an abortive and works a high percentage of the time.
Talk to your DR to see if He can prescribed it for you, if He doesn't there is always welders Oxygen (check out for topics about this type of Oxygen, plenty of guys use it and its a lot cheaper).
There are other preventatives other than prednisone, I heard about Topamax and Lithium. I personally do not take preventatives but I take Cafergot at the beginning of my cycle, when the hits are weaker and I have enough time to take it because it comes in pills and do take time to start working.
Imitrex can be found in cheaper versions (look for Sumatriptan, they come in pills and as nasal spray) These ones come from New Zealand.
Of course there is also Red Bull but I do not know if it is safe to take for the sugar content, maybe strong coffee with taurine pills will work for you.
Please do not give in Johnny, This site is great for the information you can get, read, read a lot and ask everything you want and you can also vent if you need to, We are here to help and hear you and give you a shoulder to cry if that is what you need.
YOu will find people here ready to help. Hang in there and be strong, YOu can beat the beast!!
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johnnypatrick
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Re: Who is who here to the newcommers
« Reply #321 on: Apr 29th, 2007, 9:54pm » |
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Thankyou. Well I do you use the O2 at night when at home. Works pretty good for those but not the daytime ones. Imitrex? Well I can only get 9 pills a month and I have that many headaches in two days! Or six nasal inhalers or two injections. Topomax? Don't know much on that. Lithium? My doctor had a stroke when I mentioned that. "Oh no, he exclaimed,that is dangerous , I'd have to monitor your liver. yadda yadda yadda. Thanks though. Hopefully I'll be done in a week or two.
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Old Italian Proverb
Amici e vini sono meglio vecchi
friends and wine are best when they've aged
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jimyhertz
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Re: Who is who here to the newcommers
« Reply #322 on: Apr 30th, 2007, 11:14am » |
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H i all,
I'm Jimmy,
I am 45 and just saw a neurologist for the first time about a week ago. She told me I had cluster headaches about five minutes after I walked in. I had never heard of them.
I've had headaches for about 5 years and attributed them to breaking my nose several times. Had surgery for a deviated septum and scar tissue repair last year in March, because they were lasting 2 or 3 hours. They were gone for a year and I thought I was free.
Got hit again in February this year, saw the nose Dr. and did a few weeks of steroids etc.
Shortly after that I got slammed with the wickedest bout I've ever had. 3 days of no sleep and then for a kicker on the fourth day a K 9-10 that lasted for 5 to 6 hours. I almost went nuts. Called the nose Dr. after 4 hours or so and when I was told there were no openings, I literally burst into tears. An appointment miraculously opened. I had to call my wife (who has always been there for me), still crying/sobbing uncontrollably, to come home from work and take me there. What a drag.
Any way by the time she got to me it was all but gone. The Dr. told me the sinuses were good and not to take so much tylenol (10 or 15), because it'll wreck my liver. Like I gave a crap at the time. He gave me Hydrocodone and a month later I saw the Neurologist. She gave me Imatrex pills, Naproxen, and said take the Hydrocodone if needed. I have only fealt the need to use them once since then, but I took all three and they worked in about fifteen minutes. I guess at 3:00 AM I just didn't feel like experimenting or having to tolerate an extra 15 or 20 minutes. I will next time.
I am sorry you're here, but I must admit that I am almost ecstatic to find out I'm not alone. I was starting to think I was going mad.
Thanks,
Jimmy
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Rosybabe
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Re: Who is who here to the newcommers
« Reply #323 on: Apr 30th, 2007, 1:58pm » |
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HI Jimmy!!
Welcome aboard!!
I think you need to try Oxygen. Talk to your DR about it.
Good Luck and hope you get to feel better very soon!
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Guiseppi
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Re: Who is who here to the newcommers
« Reply #324 on: Apr 30th, 2007, 3:32pm » |
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Hey Johnnypatrick, welocme to the nut house. I've been using lithium as a prevent for many years when I go on cycle. My GP had a heart attack too when I told him my neuro wanted to try it. It does take a half dozen blood tests when you first go on it to monitor how fast your body gets to a therapeudic level. After 2 weeks you don't even notice you're on it.
I drinks a bit, I like my dark beers and blended whiskies when I'm off cycle. I'm 47 and so far the lithium and the drinking haven't done anything to my liver functions. Compared to other sied effects of available meds I'm okay with the lithium for now. Hoping you have a short cycle and then stick around the nut house anyways!
Guiseppi
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