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Topic: Cluster specific? help me figure it out (Read 1325 times) |
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lionsound
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Cluster specific? help me figure it out
« on: Sep 12th, 2004, 11:18am » |
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Please do not meeegraine me out of here.
I really need some help figuring this out....
I've been given two different lines of defense for treating my Ha's (clusters and migraines). Been trying 02 for both with some success. Last night I took maxalt to try to banish something that's been lurking for days. It didn't work. I wonder of I'm treating the wrong thing. If I sound confused it's because I am.
As I've read many posts here I noticed that what I sometimes describe as a migraine..... lots of you describe as a shadow. My neck starts to hurt, my eye hurts to the touch, one side of my head always feels stuffy and it seems like there's some sort of imaginary sometimes painful line from my ear to my eye to my nose. The pain fades in and out. Last night there was another from my shoulder blade in back to back of my neck to the top of my head down to my nose and my hair felt wierd ...like it was standing on end sort of buzzing.
oh. I've been given indocin to treat if O2 doesnt work for clusters and maxalt, decadron, stadol, migranol for the other. My thought is to try the indocin(which I've never taken before) and see what happens. If it works I have my answer, but somehow I don't think that's entirely true. I see the doc in week so I'm going to ask there.
Maybe my prevents are working.......Maybe I'm just special.
any thoughts or ?'s.
thanks in advance,
lionsound
*******To be VERY clear : I'm NOT saying you all have migraines. I'm saying I may be mislabeling something as a migraine that isn't.
edited to add the ***part
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| « Last Edit: Sep 12th, 2004, 11:41am by lionsound » |
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pubgirl
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Re: Cluster specific? help me figure it out
« Reply #1 on: Sep 12th, 2004, 11:51am » |
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Lionsound
Indocin may be worth a try, but it isn't often much use for CH or migraine (there have been a few people it helped)
It is a fantastic,almost miraculous drug for the short-lived HA's like CPH, Idiopathic stabbing etc etc. but that doesn't sound like your symptoms.
Most good neuro's give it a try though in the early stages of treatment.
If it hasn't worked in a few days though, stop taking it or it may well really mess your stomach up.
Sorry, I can't remember what your prevents are so can't comment about this other than Decadron (are you taking anything other than this to prevent?)
Also more importantly, are you taking migranol, maxalt, decadron AND stadol. This is a bit of a worry if you are as that sounds a bit like none of them are working so the Doctor has just layered on more drugs, most of which are not the best drugs for CH OR migraine. In addition, if you are taking all of them you may even be causing some of your headaches.
Stadol is a narcotic painkiller, not usually recommended for CH OR migraine
Maxalt is not the triptan of choice (Imigran is)
Decadron is not the steroid of choice (Prednisolone is) and Migranol (DHE) I didn't think was supposed to be used when you are using triptans (may be wrong here but I know when people have IV DHE they need to come off the triptans for several days beforehand)
In truth, your cocktail sounds way off beam to me for CH or migraine, but of course, I'm not a doctor!
Wendy
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pubgirl
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Re: Cluster specific? help me figure it out
« Reply #2 on: Sep 12th, 2004, 11:57am » |
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Lionsound
Sorry 'nother question 
When you say the pain fades in and out, are you saying you have pain, then are pain free, then pain again.
If so, how long does the pain bit last?
Wendy
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Jonny
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Re: Cluster specific? help me figure it out
« Reply #3 on: Sep 12th, 2004, 12:05pm » |
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Indo supp's worked great for me as an abortive.....then they stopped making it in that form....Bastards!!!!
.................................jonny
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IndianaJohn
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Re: Cluster specific? help me figure it out
« Reply #4 on: Sep 12th, 2004, 12:17pm » |
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Hi Rori,
Your "migraines" sure sound like hard shadows to me. Mine fade in and out as well. I havn't figured out if they're disappearing or lessening in intensity untill they really don't bother me. Also sounds like some tension HA's (sholder blade and neck pain) thrown in. I get those too. Ibuprofen helps me with the tension HA's, who wouldn't be tense at having to suffer with CH?
I have to agree with Wendy - your prescriptions don't seem to be the best combination. I take verapamil as a preventative, and Imitrex nasal spray as an abortive. Sometimes I get prednisone at he beginning to knock the cycle down until the verapamil can take effect or during a cycle to get a break when things are really bad.
Wendy's also correct in saying not to take DHE within 24 hours of any triptan. I think things could get really dangerous in you do.
I hope you get a break soon, you surely deserve it.
John
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Did my brains fall out or is this headache over?
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lionsound
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Re: Cluster specific? help me figure it out
« Reply #5 on: Sep 12th, 2004, 12:25pm » |
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Wendy...all good questions....
My prevents are verap 240mg/day and Keppra 1500mg/day(in two doses)
The drug layering is a scary,but it is explained...I have a chart to fill in with all of these if/then statements. I live kind of far (about 5hrs) from the doc so he gave me enough to deal with until saw him next. I've only seen him once so far.
IF the maxalt doesn't work, then I go to the decadron (only once a month) and then if that doesn't work, then the migranol instead of the ER. Imitrex doesn't work for me anymore. I have yet to try the injections, I hate needles. Relpax and zomig didn't like my body.
I'm actually trying to be rid of the stadol which used to be my aviod the ER drug. But it's a known quantity so I keep it around.
And the pain...sometimes I'll get a couple of good jabs all by themselves and my hand will relexively go to my eye/nose and .....and sometimes it will last up to half an hour or more. Any longer and I'm trying the O2.It's very strange. Kind of a guess.I don't keep really good track though...hence the "fading in and out"
BTW, I know your not a doc and I LOVE the way your questioning mine who is a great doc and one of the best in this country. It will give me some good questions to ask him. He may be good, but no one is above questioning. 
-lionsound
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| « Last Edit: Sep 12th, 2004, 12:44pm by lionsound » |
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pubgirl
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Re: Cluster specific? help me figure it out
« Reply #6 on: Sep 12th, 2004, 12:33pm » |
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Understand now
but as for questions....Ooopss. Here I go again!
Did he explain why he is giving you a corticosteroid only once a month.
Don't understand that at all
Wendy
Added on: Lionsound, I use the 02 for shadows as well. Maybe you should try hitting the 02 sooner rather than waiting.
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| « Last Edit: Sep 12th, 2004, 12:41pm by pubgirl » |
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lionsound
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Re: Cluster specific? help me figure it out
« Reply #7 on: Sep 12th, 2004, 12:43pm » |
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on Sep 12th, 2004, 12:33pm, pubgirl wrote:Understand now
but as for questions....Ooopss. Here I go again!
Did he explain why he is giving you a corticosteroid only once a month.
Don't understand that at all
Wendy |
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Well, it might be because all of these are new to me and my next appt was a month away. I can actually take three of the pills(dose is downstairs), within 24 hours and probably by that time I would have called his office. ???? They are very reachable.
Other than that I have no clue.
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unsolved1
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Re: Cluster specific? help me figure it out
« Reply #8 on: Sep 12th, 2004, 12:57pm » |
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You two still talking about the Decadron ?
It is a steriod that I use it often.
Check out this page:
http://www.globalrph.com/corticocalc.htm
PS. Decadron is Dexamethasone.
Unsolved
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lionsound
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Re: Cluster specific? help me figure it out
« Reply #9 on: Sep 12th, 2004, 2:13pm » |
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Ah. now I understand why Dexamethasone might be only once month(for now)....very long acting and more umph per mg according to that conversion chart.
thanks unsolved.
This is getting very interesting.....
If I have been treating the wrong thing it might explain why I've been so unsuccessful at it.
-L
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unsolved1
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Re: Cluster specific? help me figure it out
« Reply #10 on: Sep 12th, 2004, 9:38pm » |
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Decadron also comes in a "Dex Pak". It is a 'taper' schedule thing. It is a 6 day steriod treatment.
Medrol dose packs are almost the same. They come in a 'taper' pack lasting 11 days.
Unsolved
Glad the link I provided was useful 
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JohnM
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Re: Cluster specific? help me figure it out
« Reply #11 on: Sep 13th, 2004, 10:17am » |
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I usually get tension headaches and a sore stiff neck and shoulders during a cycle. It's hardly suprising when you are so tensed up with the pain of CH!
Lion - I suggest you bite the bullet and try an imitrex injection to get rid of the nagging "shadows". The needle is nothing to be worried about and is painless with the autoinjector. It maybe just the thing to help you out. The imitrex pills and nasal spray are useless compared with the injection in my opinion.
John
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lionsound
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Re: Cluster specific? help me figure it out
« Reply #12 on: Sep 13th, 2004, 11:35am » |
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on Sep 13th, 2004, 10:17am, jmorgan52 wrote:
Lion - I suggest you bite the bullet and try an imitrex injection to get rid of the nagging "shadows". The needle is nothing to be worried about and is painless with the autoinjector. It maybe just the thing to help you out. The imitrex pills and nasal spray are useless compared with the injection in my opinion.
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I hear you, but I REALLY HATE NEEDLES. Really hate them. I am a needle chicken. My anxiety level about them is enought to cause a HA.
I was taking up to three 100mg pills of imitrex within four hours and that didn't help. I understand the injects are different. I wonder if the injections would help if that much imitrex wasn't working anymore.
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Superpain
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Re: Cluster specific? help me figure it out
« Reply #13 on: Sep 13th, 2004, 4:02pm » |
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As much as you hate needles, I'd think that you hate CH's worse...
Believe me, after the first one and the relief it brings, your fear of needles will dissapear.
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Chris
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lionsound
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Re: Cluster specific? help me figure it out
« Reply #14 on: Sep 13th, 2004, 4:20pm » |
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Okay......going to the doc next week......I'll ask about it.
but I'm warning you that it will take half of you to hold me still and the other half to hold my hand. My husband will do the injection.....
and get your minds out of the gutter!!!!!!!!!
Fall foliage season is just around the corner...any takers?
edit: to dredge out your filthy brains(lol)
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| « Last Edit: Sep 13th, 2004, 4:25pm by lionsound » |
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unsolved1
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Re: Cluster specific? help me figure it out
« Reply #15 on: Sep 13th, 2004, 10:53pm » |
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Just wanted to add that the pills and nasal sprays won't touch my CH attacks, but the injections work everytime !!
Unsolved
<Hey, I don't really like needles either. The auto-injector makes it easier, although it's too big of a dose for me. I have to take it apart and use only 4 mg of it. It's better than a CH !>
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JohnM
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Re: Cluster specific? help me figure it out
« Reply #16 on: Sep 14th, 2004, 2:35am » |
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lion - I really hated needles too and I had a sample twin pack of imigran (imitrex in the USA) given to me by a neuro "only for very dire emergency" in his words, that I kept from 1 "CH cycle" to the next, and was scared to take them. He also gave me the tabs and the nasal spray and neither touched my CH so I doubted that the inj would either.
Anyway at the start of the next cycle I was in a conference and got a really big one come on during the lunch break. Very embarassing with my crying red eye, the sweats and clutching my right temple in agony. I lived nearby so decided to go home, got halfway and had to pull the car over to puke I was so bad. I had decided to try the inj as soon as I got in the house where it was in my bedside table (stupid place to keep it in cycle!). It took me a while to pluck up the courage but I did it (it was much easier than I had imagined it to be) and then lay on the bed and 5-10 mins later the CH just faded away and left me clear headed and totally PF, even the normal "soreness" in the temple/eye that I normally get for hours after an attack was not present . It felt like a miracle! I went back to the conference just as it restarted after lunch and all my sympathetic workmates who knew about my CH affliction where amazed.
I am now pretty fearless about the inj and even use the "imitrex tip" to split my dose to save meds and money.
Just give it a Lion Roar and do it!
Good luck
John
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