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godsjoy777
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Just wondering-Are the drugs making us chronic?
« on: Feb 19th, 2005, 10:40am »
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OK.....I am a 15 year sufferer.....51 years old.....been through many of the meds...started with the abortives....used to be medrin...then Trex....Later discovered O2 and Maxalt and they tried some prevents like Verapamil and now on Zonegran along with the rest......
 
I didn't like Verap as I couldn't wake up ( I have a low BP to start with....then in an article I read Verap and Zocor are a bad combo....I don't think my pharmacy or Dr caught that!!!).....
 
Anyway........My cycle started out I think.....if I can still think......after all these meds and headaches....only a couple of weeks long waaaaaaay back when....After I started to get meds....and by meds I mean hard core Pharmaceuticals (sp?)....the cycles have increased in length.....so now I have a full 5 months....wow.....especially after starting the Verap last time....I jumped from 3 months to 5 months...
 
I have a theory....I think that pharmaceuticals are kind of like white bread.....OVER processed...They do the trick....BUT.....have some bad side effects.....I really want to have a natural God given cure....DON'T wWE ALL?????? I think the Neuro's like everybody just jump to the next med without thinking about the side effects...I got completely off the Maxalt a couple of weeks ago and carried my O2 around and just dealt with the night hits again with the O2.....at least it was natural.....
 
Any thoughts????? We need someone to help!!!!
 
Love you all,
Karen
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Re: Just wondering-Are the drugs making us chronic
« Reply #1 on: Feb 19th, 2005, 10:54am »
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As far as the original question, no I don't believe the meds aren't what makes us chronic.  At least not in my case.  To make a very long story short, my medical records point to my being chronic (by IHS standards) for at least 3-4 years prior to official diagnosis.  I was on NO meds at all but for trying everything everything OTC I could get my hands on, and coping techniques that I only THOUGHT were helping.  I only started meds close to a year ago when a GP recognised this hell, did what he could to help and failed, and sent me to the HA specialist.  
 
To the best of my knowlege and experience this disease is progressive in nature for the most part, however it manifests itself differently in everyone.  
 
So at least for my particular situation, the answer here is I don't believe so.  YMMV
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Re: Just wondering-Are the drugs making us chronic
« Reply #2 on: Feb 19th, 2005, 11:11am »
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I know....I mean I don't know....I mean....who knows.....we're all so frustrated out here.....I had a 2 week reprieve....then ZAM!!!!!! I got hit like never before....after 4 months of my cycle....I started getting at least 6 to 8 hits in a 24 hour period....I felt like I could be rocket (wo)man.....just strap the O2 on my back....'cause I was afraid of forgetting it either at home or at work.....My new dentist caught me sucking O2 one day....He's cool....but what a strange look in his face....Here I am at the fromt dest looking like Darth Vader.....(Luke I am your father....errr....Mother...)....I usually could get to the break room....but it was a casual Friday....
 
Anyway....I thought it might be the triptans causing me to get hit sooooooo many times....so it was reeeeeeally hard....but I got off Maxalt and back on O2 only .....at least for now......I now have some empathy for a herion addict.....except for anything to kill the beast in my head...
Karen Embarassed
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jasckorohod
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Re: Just wondering-Are the drugs making us chronic
« Reply #3 on: Feb 19th, 2005, 11:30am »
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I became chronic without being on any medication.  Have you tried a pain clinic?  I found that to be the most effective way to get treatment that works; usually you will be prescribed narcotics, but believe me the side effects are minimal and the relief is better than any of the other myriad of medications that I've been on.
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Re: Just wondering-Are the drugs making us chronic
« Reply #4 on: Feb 19th, 2005, 11:34am »
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on Feb 19th, 2005, 11:30am, jasckorohod wrote:
I became chronic without being on any medication.  Have you tried a pain clinic?  I found that to be the most effective way to get treatment that works; usually you will be prescribed narcotics, but believe me the side effects are minimal and the relief is better than any of the other myriad of medications that I've been on.

 
Narcs are not usually effective on CH, and just leave you addicted in the long run.  Many times over the years I've used the narc pain killers for the arthritis in my spine in hopes it would tame the beast to no avail. I'm sure there will be others who will relate the same effects, (or lack there-of).
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Re: Just wondering-Are the drugs making us chronic
« Reply #5 on: Feb 19th, 2005, 12:55pm »
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They don't work for everyone and they won't kill the pain if it is bad (7-10), but in my case I've been able to work using them.  regarding your spinal pain, I have arthritis in my knees and the narcs don't work on that, but motrin does.  Like anything else with CH pain, some things work for others and some don't.  Like chicken soup, if nothing else works, give it a try=couldn't hurt.  With a good pain clinic you will be strictly monitored and it will be part of a program that includes counseling to help with the emotional problems associated with chronic pain as well as continued tx by a neurologist.  There is a difference between addicted and developing a dependence; one does develop a dependence and tolerance with opiates over time, but that can be managed by the doctor; addiction involves a whole other set of behaviors and most people who use opiates, under medical supervision, do not become addicted.
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godsjoy777
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Re: Just wondering-Are the drugs making us chronic
« Reply #6 on: Feb 19th, 2005, 1:03pm »
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I guess I am having a bit of a problem trusting most Drs....even my neuro these days.....Pain management is not the only thing I want....maybe I'm a dreamer.....
 
I am sick and tired of having to manage the "side effects" as well as the pain....
 
Sick and tired of the pain....sick and tired of the side effects of the meds....Get me off this cycle.....I feel like a gerbal....and all the Neuros have to offer is the next expensive tripton or God forbid.....prednizone....and gosh darn it... I don't wanna be on steroids!!!!
 
Just venting.....Dr doesn't like me right now...I want a miracle...
 
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firebrix
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Re: Just wondering-Are the drugs making us chronic
« Reply #7 on: Feb 19th, 2005, 2:44pm »
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"I really want to have a natural God given cure."
 
Have you considered
  www.clusterbusters.com?
 
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nani
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Re: Just wondering-Are the drugs making us chronic
« Reply #8 on: Feb 19th, 2005, 2:53pm »
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I don't think meds make us chronic, but I believe the triptans can cause rebounds. It may be time for you to get off the meds and try clusterbusters or look here for something that seems to be working for some of us(read through the whole thread)  
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1107368408
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Re: Just wondering-Are the drugs making us chronic
« Reply #9 on: Feb 19th, 2005, 8:18pm »
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Like those above, I don't think meds make us chronic, but I do believe they can prolong your cycles a little.  They make you feel better, but it's almost like the beast is just outside the door waiting to get back in and complete his job.
 
My last cycle was significantly shorter in terms of the number and frequency of HA's (thanks to Verapamil), but it took me 5 months to wean off the Verap without those little twinges and kip 2-3's.
 
Like Nani, I'm really watching the Kudzu thread.
 
Kris
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godsjoy777
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Re: Just wondering-Are the drugs making us chronic
« Reply #10 on: Feb 19th, 2005, 11:23pm »
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Yep....I've been watching that thread too and have it ordered at my local health food store....
 
Hope to try it soon....
 
love y'all,
Karen
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sandie99
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Re: Just wondering-Are the drugs making us chronic
« Reply #11 on: Feb 20th, 2005, 5:52am »
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Goodness, I hope not! Shocked
I'd give meds us as soon as possible.
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Re: Just wondering-Are the drugs making us chronic
« Reply #12 on: Feb 20th, 2005, 7:36am »
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on Feb 19th, 2005, 11:11am, godsjoy777 wrote:
I know....I mean I don't know....I mean....who knows.....we're all so frustrated out here.....I had a 2 week reprieve....then ZAM!!!!!!

 
Exactly!!!!!
 
Had a 2 week break at the end of JULY....ZAM!!
 
Had another "winding down period" right before my wedding in NOVEMEBER.....ZAM!!!!
 
Welcoming 10 months and although not getting 6-8 anymore, "our friend" still comes! Yesterday had 2 bad ones back to back!
 
Go figure? No answers, plenty of questions but not as frustrated as I used to be.....Try to be positive!!!
 
Just found out I also have 1 arthritic disc in cervical spine as well as another that is bulging.....could this be adding to activity??? Who the hell knows? I don't & unfortunately they (docs.) don't either....
 
Mtg. With neuro on thursday and we'll see what's next....Increase meds? Detox? I waffle day to day???
 
Wish I knew but for now hey .....hugs to you and all!!!
 
LIVE!!!
 
Eric
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Re: Just wondering-Are the drugs making us chronic
« Reply #13 on: Feb 20th, 2005, 9:17am »
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I knoooooooooow!!!!!! This thing keeps morphing into something worse it seems.....and then who knows what is next....THAT is when it dawned on me that my cycle might be turning into ......god forbid.......I don't want to say it.........chronic...... Embarassed Embarassed Embarassed
 
Well....even my wonderful husband is feeling the frustration....he is the best hubby ever....We are definately planning to come to the Dallas meeting this Summer....I'm so glad he will come....He doesn't quite understand my need to come onto this board....but he will.....you all are so great for me....
Love you,
Karen
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Re: Just wondering-Are the drugs making us chronic
« Reply #14 on: Feb 20th, 2005, 9:32am »
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Of course meds turn people chronic.  Of course the people dependant on meds cannot admit that this is the case even to themselves.
 
My preferred treatment options are:
 
A) Shrooms.
B) Nothing.
Z) Meds.
 
I've found that not taking meds equals less pain, shorter episodes, and longer remissions that taking meds which do exactly the opposite.  Never mind keep the money rolling in.
« Last Edit: Feb 20th, 2005, 9:34am by Flash » IP Logged
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Re: Just wondering-Are the drugs making us chronic
« Reply #15 on: Feb 20th, 2005, 10:20am »
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I totally agree with Flash!
It seems many people on this board have respect for Prof. Goadsby as someone who knows what he is talking about when it comes to CH. He thinks that both verap. and imigran/trex can extend cycles and I for one am not going to disagree with him.  
I do accept however that there are some people who were chronic before they had any meds.
 
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Re: Just wondering-Are the drugs making us chronic
« Reply #16 on: Feb 20th, 2005, 12:08pm »
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Quote:
Of course meds turn people chronic.  Of course the people dependant on meds cannot admit that this is the case even to themselves.

 
Quote:
I do accept however that there are some people who were chronic before they had any meds.  

 
Chronic well before correct Dx or any meds for my case.
 
I appreciate Flash's opinion, however there is a host of us out here that never knew what the hell was wrong with us for years and years and Doc's who did everything from treating for TMJ to migraine, sever allergies and Chronic fatigue, to suggesting the pain was a somatic manifestation of psychological stress.  
 
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Re: Just wondering-Are the drugs making us chronic
« Reply #17 on: Feb 20th, 2005, 10:16pm »
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I didn't realize that the big Prof Goadsby believes that Verap etc....extends cycles.......Where do you find that?
 
So....I am on to something....not alone in my skepticism.....but not so sure yet about shrooms either.....I have been Cluster free for 3 days after a very long 5 month cycle....used to be much shorter.....but it seems my time clock is remembering what Verapamil turned it into last year.....exactly 5 months.....
 Shocked Shocked Angry Angry
Karen
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Re: Just wondering-Are the drugs making us chronic
« Reply #18 on: Feb 21st, 2005, 7:22am »
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Good news about the PF days, hope it continues! Prof. Goadsby was asked by a member of the audience at the OUCHuk London meeting [June 2004] about this issue. He was first asked whether verap could possibly extend cycles to which he replied "probably" and the same person asked the same about imigran/trex to whch he replied "probably".
I know i've posted this before -sorry.
 
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Re: Just wondering-Are the drugs making us chronic
« Reply #19 on: Feb 21st, 2005, 12:35pm »
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I guess I knew it had to be too good to be true....3 day of pain free and one very very hard night of clusters last night....CRAP!
Karen
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