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rbmb
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tried them all
« on: Mar 29th, 2006, 8:02pm » |
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For lo these many years (about 10 years actually) that I've been havings CHs, I've tried the following medications/treatments:
O2 - didn't help
prednisone tapers - helped somewhat until taper ended
verapamil - didn't help
zomig tablets - didn't help
migranal nasal inhalant - didn't help
melatonin - made them worse
magneseum supplements - didn't help
topomax - stopped the HAs for a while, then became ineffective
DHE injections - these work, thank God, but the time between injection and relief becomes longer if taken on a daily basis. I know that you shouldn't use DHE for more than 6 days in a row, but I've done it and haven't noticed any side effects other than that it takes longer to bring relief.
My neurologist has never given me imitrex, presumably because the DHE works.
Long story short, I've yet to find a preventative that works for more than a short time. I've just resigned myself that once a cycle starts, it just has to run its course and I'll have to rely on the shots to deal with the night time hits. Is there some medication that I've missed that really works for someone?
Rich
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Guiseppi
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Re: tried them all
« Reply #1 on: Mar 29th, 2006, 9:18pm » |
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Lithium. I'm a male, 46, weigh 190 lbs., I take 1200 mg of lithium a day while on cycle. I generally cycle 2X a year, 8-12 week cycles with breaks as long as 2 years. When I start a cycle I do a pred taper and start my lithium. It requires some blood work and it does cause a little lethargy, plus you pee a lot!!!(after all it is a salt) It blocks 80% of my headaches, I use oxygen and cafergot for the break thru headaches, occasionally imitrex injections if it's a butt kicker. (I hate needles)
Please don't get frustrated and give up hope, run lithium by your doc and see if it might be for you. With the exception of tpomax and DHE I've run thru many of the same drugs without relief. Now I'm a big lithium fan. Best of luck to you.
Guiseppi
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nani
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Re: tried them all
« Reply #2 on: Mar 29th, 2006, 9:36pm » |
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Hi Rich. As Guiseppi said, lithium can be an effective prevent for some. Usually it's taken along with verapamil. I used to be one of those "hard to treat" types. If meds worked at all, they didn't work for very long. Then I had terrific success with 2 alternatives. (one eventually failed me, but the one I'm using now still rocks!
Read about it at
www.clusterbusters.com
Kudzu worked really well for me for a while, too.
Read about it here:
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1110584362
One more thing....when you tried oxygen, were you doing it correctly? Link on left...
pain free wishes, nani
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thebbz
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Re: tried them all
« Reply #3 on: Mar 29th, 2006, 9:45pm » |
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You might want to revisit the 02..it has to be administered correctly or it will not work. Non-rebreather mask, 100% 02 , 12 to 15 lpm for up to 20 min. Get more information on the left. Study the condition knowledge is key. No prevent here either but I am not dead..27 years and counting....
The others will be along with more...
all the best
jb
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BarbaraD
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Re: tried them all
« Reply #4 on: Mar 30th, 2006, 6:46am » |
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I've got a couple of questions: topamax and DHE????
What strength did you take of the topamax? and how did you take the DHE?
1. topamax dosage can be upped to stop the headaches.. I've been up to 400mg a day when in a very high cycle (I'm chronic) and down to 100mg for maintance (I try to stay there - with 4-5s I can handle).
The DHE is usually given as "last resort" It's usually give every 8 hours for three to 10 days. It's best to give IV, but injections usually work (they just hurt like the devil and leave knots in your rear)
Cafergot works fairly well as an abortative. (with phenergan cause they make you sick at your stomach). Cafergot PB (and I stress the PB) supposotories work to abort (faster than the pills) BUT make sure they're the PB (phenobarbitol for the naseau) and NOT the plain cafergot cause the plain ones will cause naseau you don't need).
Melatonin takes a couple of weeks to get in your system, but has worked great for me (after about the third try) to help me get the rest I need at night so I can get thru the day hits.
Coffee or Red Bull work as abortatives if I catch the hits in the first stages (before they hit above a 4-5).
O2 is wonderful in the early stages of a hit most of the time (along with the coffee or Red Bull).
Hope you find your "formula" soon. It's out there - just takes a while to hit on it...
Hugs BD
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rbmb
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Re: tried them all
« Reply #5 on: Mar 30th, 2006, 11:47am » |
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Thanks for the responses folks. I left lithium off the list of things I've tried by accident. It seemed to be somewhat effective for a while. I had to keep having my blood levels checked and the doc could never seem to quite get me to an effective dosage........there is a pretty thin line between a theraputic and a toxic blood level. I think the highest topomax dosage I ever got to was 150mg and even at that, I could hardly function at work.....couldn't remember what I was doing from one minute to the next. I should try O2 again.......it would be great to find an effective alternative to the drugs.
Rich
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NotH20
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Re: tried them all
« Reply #6 on: Mar 30th, 2006, 12:59pm » |
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The only other meds that I've tried that aren't on your list was Maxalt (as an abortive), Depakote and Keppra. You may want to check these meds out and ask your doc about them.
Good luck to you....
Mia
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Roxygirl
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Re: tried them all
« Reply #7 on: Mar 30th, 2006, 3:29pm » |
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I know you said Zomig tablets but have you tried the Zomig nasal spray. It's supposed to get in your system faster. For me it works great. I usual get rid of the ch in 10 minutes. Just make sure you take it as soon as you feel it coming on. I have one on me at all times.
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Kris_in_SJ
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Re: tried them all
« Reply #8 on: Mar 30th, 2006, 7:56pm » |
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Did you try the Verapamil at therapeutic levels - meaning 480mg/day or above? Along with a Prednosone taper, it has always been effective for me. It's those high doses that are needed.
You might also want to talk with Unsolved about his experiences with Histamine therapy.
Hoping you find the right stuff .... Kris
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BlueMeanie
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Re: tried them all
« Reply #9 on: Mar 30th, 2006, 8:26pm » |
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Welcome Rich,
NO prevents have ever stopped my Clusters during a cycle. Gave up on those years ago. Funny, the ONLY one that has ever worked for me is the Imitrex which you said you never tried. Hmmm. Might be worth checking into.
Good luck, I hope you find something that works. Someone said to retry 02 with correct flow rate. That is worth another try for sure.
PF Vibes to ya.
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Richr8
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Re: tried them all
« Reply #10 on: Mar 30th, 2006, 8:38pm » |
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on Mar 29th, 2006, 8:02pm, rbmb wrote:
O2 - didn't help
prednisone tapers - helped somewhat until taper ended
verapamil - didn't help
melatonin - made them worse
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I have two questions. First, have yoo tried the O2 at 15 LPM with a non-rebreather mask, and what did your pred taper involve (dosage and duration)? I ask because both work for me. My pred taper varies on the response, but has worked in my last three cycles at 60mg held for about a week. While tapering, if I had a recurrence, I would bump back up and hold for a few days until things settled down again and then proceeded with the taper. O2 always worked, but there was a remarkable difference when I kicked up the flow to 15 lpm (doc had me on 10 lpm) and switched to the clustemask.
Just curious.
PF wishes,
Rich too
P.S. My preventve would be Verapamil at 480mg.
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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chewy
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Quote:| NO prevents have ever stopped my Clusters during a cycle |
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I dont know of any prevents that will stop attcks only reduce frequency and intensity.
RBMB.
Many times its not the med but rather how it is prescribed. When you did the pred. taper were you taking a prevent?
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LeLimey
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Re: tried them all
« Reply #12 on: Mar 31st, 2006, 7:04am » |
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RBMB how long do your cycles generally last?
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thebbz
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Re: tried them all
« Reply #13 on: Mar 31st, 2006, 10:32am » |
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Hope you are doing better...check back in.
You asked about alternatives to the drugs..
clusterbusters.com has a few if you haven't found them already. These have helped many find relief.
all the best
jb
Chewy brought up a very good point and that being more the dosage and adminitration being adjusted or used properly to be effective. 
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pfunk
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For the longest time, my doctors didn't understand my CH's. Every time I went to see them, they gave me imitrex and a bunch of other prescriptions for evrything from depression and lack of sleep to demorol and/or morphine for acute pain. I had taken verapamil in the past and had no success but I'm now convinced that dos were just keeping me doped up and I probably wasn't aware enough to take the right amounts. Plus the facts that I'm positive the pain killers increased the intensity and the number of attacks that I was having.
Both periods of remission that I have had in the 20+ years that I've had CH seemed to come when I was taking little or no medicine at all rather than the proverbial "cocktail" I was used to taking most of my life.
I recently wnet and told my doc that I wanted no pain killers and to be on as little meds as possible. I now take just 540mg of verap. and have been HA free since Feb. 23.
I agree with Chewy in that, I don't think most preventatives will completely eliminate CH but will decrease intensity and number of attacks. Every person reacts to meds differemtly and there are other prevent besides top. and verapamil. My suggestion would be to find one that helps if only just a little bit and stick with it for a while. Also, you may want to look into other supplementation such as Kudzu. I heard many people say great things about their success rate while on this. Much luv and PF wishes. 
Patrick 
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rbmb
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Re: tried them all
« Reply #15 on: Mar 31st, 2006, 12:37pm » |
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I tossed my old prescription bottle, but I think I was on a 60 mg taper for 10 days and was taking topomax at the time. I'm out of cycle now, but I'm not naive enough to think that they won't come back......they always do and I'm about due. My cycles used to last 6 to 8 weeks and I'd get 2 or 3 cycles a year. Now they last longer (3 months plus) but are farther apart.
I'm going to ask my neuro to set me up with O2 again when the next cycle starts. My first time with it I used a standard mask.....this time I'll get a rebreather mask and watch the flow rate.
Thanks again all for your responses......it is great to have somewhere to go for advice from people who understand how miserable these headaches are.
Rich
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Melissa
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Also a reminder that most preventative medications take at LEAST 2 weeks to build up in the body to become effective. I know it's hard when we're hurting, but patience is important with those.
Secondly, glad to hear you're going to give O2 another try with the correct mask and flow rate. You'll probably be pleasantly surprised.
Let us know how you're doing!
 mel
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Chillrmn1
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on Mar 31st, 2006, 12:37pm, rbmb wrote:...........this time I'll get a rebreather mask and watch the flow rate.
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Rich -
Make sure to get a Non-Rebreather mask. A rebreather will not help you.
Bob
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BlueMeanie
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Re: tried them all
« Reply #18 on: Mar 31st, 2006, 7:30pm » |
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on Mar 31st, 2006, 5:30am, chewy wrote:| I dont know of any prevents that will stop attcks only reduce frequency and intensity. |
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Sorry, gotta watch how things are worded. You're right, they have never stopped attacks, plus, never reduce frequency or lowered the intensity. Ahhh... much better. Remember, prevents may work for you, as they DO work for many. I'm just telling you my experience.
Definately check into getting the correct 02 equipment. 02 hardly ever worked for me until (with the help of this site) I got the right setup. At least it works sometimes now.
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MJ
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Re: tried them all
« Reply #19 on: Apr 1st, 2006, 2:25am » |
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on Mar 29th, 2006, 8:02pm, rbmb wrote:
Long story short, I've yet to find a preventative that works for more than a short time. I've just resigned myself that once a cycle starts, it just has to run its course and I'll have to rely on the shots to deal with the night time hits. Is there some medication that I've missed that really works for someone?
Rich |
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rbmb
It Took me twenty some years to find that nothing works for me.
For the next 10 years I found that no meds worked better than everything else.
And it was30 years before I found something that does work for me.
See Nani,s links and the clusterbusters site. RC seeds (LSA) are the first and only preventive, abortive and complete cycle buster I have ever found.
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MJ
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Melissa
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on Mar 31st, 2006, 4:43pm, Chillrmn1 wrote:
Rich -
Make sure to get a Non-Rebreather mask. A rebreather will not help you.
Bob |
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Right! Can't believe I missed that. 
Thanks Bob!
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Karla
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Re: tried them all
« Reply #21 on: Apr 1st, 2006, 7:27pm » |
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zyprexa and elavil have shown some prommising results on the board and in studies. Please note if you try the zyprexa you can't take any melatonin, seeds, shrooms, kudzo, etc with it due to interaction problems.
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| « Last Edit: Apr 1st, 2006, 7:28pm by Karla » |
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Karla
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