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Topic: This KEEPS coming back to me.... (Read 435 times) |
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kimh
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This KEEPS coming back to me....
« on: Oct 16th, 2004, 8:13am » |
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Every time i read a post where someone is really having a bad time of it and then i read the list of medications they are currently taking, i CRINGE! Am i the only one who thinks that all the meds that docs pump into us can worsen and/or lengthen the duration of a cycle????
What would you do if you were currently taking Numerous medications and STILL the hits were coming with no relief in sight?
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vig
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Re: This KEEPS coming back to me....
« Reply #1 on: Oct 16th, 2004, 8:18am » |
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I'm with you on that one Kim.
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EmpressJMB
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Re: This KEEPS coming back to me....
« Reply #2 on: Oct 16th, 2004, 8:20am » |
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I agree kim. If they're not working, why take them? The dr's are all (most?) in cahoots with the drug companies.
J
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Renee
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Re: This KEEPS coming back to me....
« Reply #3 on: Oct 16th, 2004, 8:22am » |
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I was in that shape recently. Finally after 3 months of pure misery with lots of meds I went inpatient for DHE treatments. It seems to have sort of reset my head and now the o2 works for me again and the few ch's that I have are lower in kip level and duration.
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
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E-Double
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Re: This KEEPS coming back to me....
« Reply #4 on: Oct 16th, 2004, 8:22am » |
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I'm with ya Kim... but what choice is there other than to take a month or two off and hide.
I still don't know if my cycle was extended due to meds or if this is just the new journey the beast and I are taking.
I certainly don't want to be on thise stuff anymore but to be honest am a little scared to be off... not because of the pain but because it unfortunately seems to be a crutch. We spoke about this over coffee last week...
I forgot my meds (which has only happened once before) figuring that I would be home and something came up. So I took one of yours. Same dosage as mine however I thought about not taking it..remmeber but for me I don't want to tinker with my meds until after my wedding and that includes some real pushes at obtaining relief. I'd rather get hit here and there and deal with how things are at the moment thna risk things getting worse even if it might help get better.
Shitty decisions we have to make.
E.
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karma
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Re: This KEEPS coming back to me....
« Reply #5 on: Oct 16th, 2004, 8:29am » |
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Where were you guys last week when I was getting blasted for suggesting the same thing?
Being pain free is a mighty big incentive to try anything even if you know it may be making things worse.
Damn this things sucks.
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kimh
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Re: This KEEPS coming back to me....
« Reply #6 on: Oct 16th, 2004, 9:25am » |
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We are faced with "shitty" decision-making, i agree. Believe me, i'm a cluster headache fossil (lol) and i am STILL experiencing the same dilema, so don't think i'm being arrogant or trying to sway anyone. When you are desperate and in such pain you will do ANYTHING with the hope that it will stop the pain. That's the thing.....Stopping the pain. Right there in a nutshell. That's all we want. It's just that i really don't think the preventatives stop the pain from coming. Especially for episodics - it is SO difficult to pinpoint. 30 years ago i was willing to take ANY "preventative" and ANY "abortive" and ANY other "treatment". I just wanted it to end. I can't say looking back that they worked. The only thing to date that i have any definitive faith in is the oxygen therapy which i learned of here and the triptans. Maybe the melatonin. Not sure about that yet. IMHO the rest is a crap shoot and i don't feel confident with them.
I know for me if i was taking a bunch of stuff and still having really bad time, i'd get off the stuff and go a different route.
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clarence
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Re: This KEEPS coming back to me....
« Reply #7 on: Oct 16th, 2004, 9:39am » |
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on Oct 16th, 2004, 9:25am, kimh wrote:
I know for me if i was taking a bunch of stuff and still having really bad time, i'd get off the stuff and go a different route. |
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I would tend to agree with you, but in my experience it is not that simple. I haven't had this condition for 30+ years, just diagnosed about 3 or so years ago. And I had been having the HA's for a year before that. I will say that I was so happy to just have a diagnosis that wasn't what they originally told me (Shingles, and then Lupus), and that my MRI showed that there was not tumor in my head, that I was willing to do anything the Doctor told me because I thought he knew more about this thing than did I.
Since, I have learned that much of medical treatment is a crap shoot, as you say. I am more willing now to question my doctor, to insist on not taking certain things, and to push for adequete explanations of things. However, for me it is still difficult to get over the doctor-patient relationship, and that this person's experience far outweighs mine in the medical field. So, I trust my doctor, for the most part, and if things don't change, I ask for the meds to be changed.
All that rambling is to say that the issue might not be so simple. Especially for those newly diagnosed who are without a clue as to what is happening to their heads. It would have been REALLY difficult for me to believe especially after first diagnosis that the meds I was prescribed would make things worse. 1, I didn't believe it could get much worse, 2, I didn't believe that my doctor would give me something that would make things worse. Speaking with a little more experience, like I said, I am now willing to question more.
Experience is what grants a person the ability and confidence to question the doc and meds, at least in my opinion. And some people just don't have that yet. I'm still working on it.
Casey
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kimh
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Re: This KEEPS coming back to me....
« Reply #8 on: Oct 16th, 2004, 9:47am » |
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Casey, I know you just wrote all that so that i'd see the "Yankees Suck" sign - 
Seriously, i know. It ain't simple. Experience is our greatest teacher and we are all making that hike each at our own pace. 
Well wishes***
kim
PS: Man, i was BUMMED last nite  (Game Cancelled  Me and Brian ended up going to King Kullen and buying pig out food fer NUTTIN 
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| « Last Edit: Oct 16th, 2004, 9:49am by kimh » |
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clarence
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Re: This KEEPS coming back to me....
« Reply #9 on: Oct 16th, 2004, 9:57am » |
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on Oct 16th, 2004, 9:47am, kimh wrote:Casey, I know you just wrote all that so that i'd see the "Yankees Suck" sign -
Seriously, i know. It ain't simple. Experience is our greatest teacher and we are all making that hike each at our own pace.
Well wishes***
kim
PS: Man, i was BUMMED last nite (Game Cancelled Me and Brian ended up going to King Kullen and buying pig out food fer NUTTIN |
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About the post - I am just a little malancholy today. Sorry if I came off as a jerk. I am really tired of being on meds too. In all honesty, I just don't know what to do. My cycle of over 8 weeks "ended" only to come back worse less than 2 weeks later. At this point I am getting really depressed, and feel like I would take anything that might make my head stop hurting. In search of more experience I guess.
About the game - The damn thing doesn't come on here until 1.00 am, and I have to watch it on the internet. So, at about 12.30 I go down to the chip shop (fish and chips) and get a ton of fries and onion rings, and a big coke, just to watch the game. Keep in mind I have been praying all day for my wounded Sox. I get home, flip on the internet feed, rain delay. A reall disappointment. BUT - on the other side, this might bode well for the Sox, Schilling could be in it on Monday...
Thanks,
Casey
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Redd
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Re: This KEEPS coming back to me....
« Reply #10 on: Oct 16th, 2004, 10:04am » |
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"Crap Shoot" I like that term. If it wasn't for the fact that I have to pay for the roof over our heads, food on the table and clothes on our backs, I wouldn't be so fond of being part of the medication "experiments" in preventive drugs. But I simply don't have the luxury to do anything else at this point. The topomax didn't help last time around, but I didn't get started on that till half way into the high cycle and I was already peaking. This round, I started to taper up on it while on then prednisone, and (knock on wood) have not had to abort anything in two weeks. I get twinges here and there, but nothing I need to abort. I HAVE to keep my job, and the only way to do that is to not miss any time because of my head.
I'm aware that the topomax may stop working at any time. That the verapamil may stop working at any time. But it works for now, and if my high cycles are longer because of it, so what. Better a longer cycle where I can still function and earn a living than a shorter cycle without the meds, and be living at the Salvation Army Shelter.
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kimh
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Re: This KEEPS coming back to me....
« Reply #11 on: Oct 16th, 2004, 10:10am » |
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Hey Casey,
Lots and lots of us can relate sweets***When i read posts that reflect what you are feeling MY FREAKIN HEART BREAKS!!!!!!!!!!!!!! I HATE it what happens to us!!!!!! It breaks my heart and it makes me MAD! I hope you get a break soon and wish with all my heart i could give you a magic key, but alas, i don't have one 
As for the game, I can't WAIT
Listen, hang on to yer hat, keep ya sense a humor, and let the wonderful folks here help ya through Works fer me
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Lobster
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Re: This KEEPS coming back to me....
« Reply #12 on: Oct 16th, 2004, 10:17am » |
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Exactly what Redd said.
With my last major cycle, the meds that were 100% effective on previous cycles had little effect. That is the 'shit your pants' fear that you alluded to in your first post.
My reaction was to go a bit overboard with the meds. I experimented with new preventatives weekly. For ones that did not work I upped the dosage. Talk about overmedicated... my body was a mess. Then when I did finally get relief, I was not entirely certain which one (or which combo) did the trick.
The only bright spot is that I now have a new expanded list of what works, what kinda works, and what is a waste of time for myself. And I am fully epxecting my body to invalidate said list next time around.
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Kevin_M
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Re: This KEEPS coming back to me....
« Reply #13 on: Oct 16th, 2004, 10:39am » |
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on Oct 16th, 2004, 10:04am, Redd715 wrote:| I HAVE to keep my job, and the only way to do that is to not miss any time because of my head. |
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Ding ding ding...
That's where the insurance comes from.
Kevin M
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| « Last Edit: Oct 16th, 2004, 10:40am by Kevin_M » |
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Redd
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Re: This KEEPS coming back to me....
« Reply #14 on: Oct 16th, 2004, 10:58am » |
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on Oct 16th, 2004, 10:39am, Kevin_M wrote:
Ding ding ding...
That's where the insurance comes from.
Kevin M
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What is this thing called insurance?
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Kevin_M
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Re: This KEEPS coming back to me....
« Reply #15 on: Oct 16th, 2004, 11:09am » |
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on Oct 16th, 2004, 10:58am, Redd715 wrote:| What is this thing called insurance? |
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It helps, otherwise my "I could give a damn" attitude at work would appear daily.
Kevin M
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EmpressJMB
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Re: This KEEPS coming back to me....
« Reply #16 on: Oct 16th, 2004, 12:16pm » |
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Point taken Casey. I guess experience is the only way to know. J
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...sometimes at night I think I understand. Brother to brother, man to man, face to face, hand to hand, the shadow dance that never ends. Shadow boxing the silent war within...yet again. Weir/Barlow
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kimh
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Re: This KEEPS coming back to me....
« Reply #17 on: Oct 16th, 2004, 3:22pm » |
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There is no known cure for cluster headaches. To date, preventative medication won't guarantee a fucking thing. To date, the abortives available are not amenable to our disorder (as per insurance companies). To date, the ONE known advantage (o2 as prescribed here) is difficult to obtain even for those of us with GOOD health coverage.
Hmmmmm.....
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fubar
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Re: This KEEPS coming back to me....
« Reply #18 on: Oct 16th, 2004, 3:45pm » |
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I'm going on 25 years of dealing with this shit. One thing that has become very clear to ME is that medications are, for the most part, poisen. This is MY experience and I'm not trying to say that everybody will have the same experience BUT...
I went through all of the preventatives, all of the pain killers, a million lifestyle changes (don't eat this, don't eat that, get more excersize, blah blah blah). What I've found is the medications, EVEN THE ONES THAT WORK, all have a negative side. It's like even if Imitrex kills a headache for me, I'm going to have an even bigger/better one the next day if I take it. I am fairly convinced I became chronic as a result of going on all of those 'preventatives', and I'll NEVER do that again.
I have gone 100% med free for the last two cycles for two reasons. One, I feel a shitload better not having all that poisen in me, and two, the treatment I DO use seems to work only when I'm med free. I have successfully killed 3 cycles now, getting about 6 months PF time in between each cycle. When the cycle starts up again, I simply do the treatment again and hope for the best. I've had incredible success, but again, that's me not you. I do have to concur on the whole idea that the meds are, in general, just bad.
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pubgirl
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Re: This KEEPS coming back to me....
« Reply #19 on: Oct 16th, 2004, 7:38pm » |
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As I've posted before, when Prof Goadsby was asked if Verapimil could worsen the condition he said "yes", when asked if abortives could create more attacks he said "probably".
There is also credible research being published saying exactly what you are saying Kim (Floridian posted it recently)
We're fucked if we do, and fucked if we don't
My happy thought for the day
Wendy
P.S. Fu is alluding to, as far as I know, the only 'treatment' where there is no true evidence that it might make us worse in the long run
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| « Last Edit: Oct 16th, 2004, 7:40pm by pubgirl » |
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kimh
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Re: This KEEPS coming back to me....
« Reply #20 on: Oct 16th, 2004, 7:51pm » |
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I think our own bodies send a distinct message that signals us as to what step we shall next take. My OWN body has always warned me in a private and specific way. ERIC - that is why i CHOSE not to continue in the "preventative" ..........LOL, laugh i do, but i KNOW my inside eye was tellingme to let it go, or face the consequences...........i have been classic episodic for most of my lifetime. I humbly believe that ingesting all those "preventatives" would have brough me to a place i did not want and was seeking escape fromin its entirety rite from the start ...............i have no medical evidence to prove this but as i continue to read and share i gain more confidence in the failures than i have in success. And Wendy, thank you for being well-read enough to confirm what i already felt in my BONES for more than some time now
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clarence
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Re: This KEEPS coming back to me....
« Reply #21 on: Oct 17th, 2004, 12:03pm » |
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on Oct 16th, 2004, 7:38pm, pubgirl wrote:
We're fucked if we do, and fucked if we don't
My happy thought for the day
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You nailed it. My thoughts exactly.
Casey
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Jonny
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Re: This KEEPS coming back to me....
« Reply #22 on: Oct 17th, 2004, 12:39pm » |
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Anyone fucks with my meds will result in the death penalty....death by boot!
.............................jonny
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Redd
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Re: This KEEPS coming back to me....
« Reply #23 on: Oct 17th, 2004, 1:45pm » |
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on Oct 17th, 2004, 12:39pm, Jonny wrote:Anyone fucks with my meds will result in the death penalty....death by boot!
.............................jonny |
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Amen!
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BarbaraD
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Re: This KEEPS coming back to me....
« Reply #24 on: Oct 17th, 2004, 3:21pm » |
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I think we all have to do what's right for us. I've tried about every preventative and every abortative there is on the market today and finally settled down on topamax and trazadone. Right now they let me lead a fairly normal life and I'm grateful.
Yes, there are probably side effects, but the "normal" lifestyle outweighs the side effects in my book - for me.
But I'm chronic and just can't deal with NO LIFE at all again. (I spent two years like that and don't think I could handle it again).
But it all boils down to the fact that each of us has to do what's right for US. Personally I'd like to get off all meds and try shrooms and let them cure me like they have so many others, but I'm just too damn old to understand what kind and how to do it.
Hugs BD
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