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Topic: the large list of preventatives (Read 853 times) |
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mrnice
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i imagine that when I get to my neurologist she is going to present me with the same overwhelming list of drugs available for treating clusters.. many overlapping with the list i've already seen which was to treat migraines...
I hate the meds doctors give and the side effects they have and even worse how shitty you feel when you decide you need to get the hell off of them,
if you all could choose one preventative to try first which would you go with and why?
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chewy
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Re: the large list of preventatives
« Reply #1 on: May 14th, 2006, 8:45pm » |
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Verapamil because it works.
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Dave
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Re: the large list of preventatives
« Reply #2 on: May 14th, 2006, 9:01pm » |
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Verapamil is usually the first line of defense.
It seems to be regarded as the most effective and has few side effects at the typical dosage.
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floridian
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Re: the large list of preventatives
« Reply #3 on: May 21st, 2006, 5:26pm » |
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Melatonin - seems to work for me when I start it immediately on going into a cycle and before the headaches start. A small dose (1.5 - 3 mg) at the same time every night, only side effects are a little groggyness in the morning, but my other makes me get out of bed and into the shower.
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marlinsfan
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Re: the large list of preventatives
« Reply #4 on: May 21st, 2006, 8:31pm » |
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Melatonin works for me too. Also, I watch what I eat/drink as I've found many triggers in my diet.
From all I've read in the year I've been coming here, I believe (my belief only, not necessarily factual) that verapimil will extend a cycle, and is hard to stop taking it.
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Lizzie2
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Re: the large list of preventatives
« Reply #5 on: May 23rd, 2006, 12:52pm » |
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Everybody who knows me will probably drop their jaw when they read what I write here, but I would have to say a combination of verapamil and a prednisone taper would be my first choice!
The pred taper will beat the beast back long enough for the verap to start working if you work with your doctor on a quick enough ramp up schedule.
However, pred isn't for everyone and I'll be the first to admit that it's caused me long term damage. But I also am chronic and took taper after taper...every 6 weeks or so. Used properly only at start of cycle while giving a true prevent a chance to work, pred can be our best friend. 
Best of luck, either way!
Carrie 
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Katherinecm
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Re: the large list of preventatives
« Reply #6 on: May 23rd, 2006, 11:15pm » |
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I'm convinced that Verap is what made me go chronic. I'd still probably try it first, combined with a prednisone taper, as it is supposively most effective for most people, but watch it. If you get weird (non cluster) headaches within 20 minutes of taking it, stop immediately. Journal your symptoms religiously. If you don't see some results within 3 weeks, stop taking it. DO NOT make the same mistake that I did and let your doctor talk you into staying on it and increasing the dose for several months when it is clear it's not helping and has bad side effects (headaches, exhaustion). INSIST your doctor honor that you understand your symptoms better than they do. If they argue, find a different doctor immediately. When it comes to CH, no one will know better than your own instincts, not even doctors.
Good luck!
(edited for typos)
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| « Last Edit: May 23rd, 2006, 11:16pm by Katherinecm » |
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"We are not human beings having a spiritual experience. We are spiritual beings that have a human experience." Teilhard de Chardin
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Bob P
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Re: the large list of preventatives
« Reply #7 on: May 24th, 2006, 9:49am » |
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My choice would be the pred taper for the first few weeks (not the Medrol that only lasts 3 or 4 days). After that I'm going with O2 and cafergot for abortives with no preventatives to see if the verap is what made my cycle last 5 months last time.
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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Jimi
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Re: the large list of preventatives
« Reply #8 on: May 24th, 2006, 10:06am » |
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I think that it is just our age Bob. My last 2 cycles were 5 mos and 6 mos. As opposed to 2-3 mos as before. The good news is that instead of yearly during those long cycles, I went 3 years in between and my last cycle (the 6 mos one) was 5 years ago. Have I finally "outgrowed it"? I don't know. BTW, my last two cycles, I used no preventatives and only used 02 and cafergot. Go figure. See you in a couple of months.
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I am convinced that life is 10% what happens to me and 90% how I react to it.
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Bob P
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Re: the large list of preventatives
« Reply #9 on: May 24th, 2006, 4:25pm » |
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Quote:| See you in a couple of months. |
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Sorry plans changed. My daughter announced her engagement a few weeks back. Now have to figure out how to finance a $30k wedding in October. Cancelled my hotel reservation last week. Was looking forward to seeing everyone and visiting my city of birth (not to mention the Harley factory).
You are right about the remissions. Mine get longer each time. Last one was 3 years 3 months. Maybe this one will be 5 years.
I'll bet you did outgrow them (since you're so much older than me).
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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Jonny
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Re: the large list of preventatives
« Reply #10 on: May 24th, 2006, 5:41pm » |
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on May 23rd, 2006, 11:15pm, Katherinecm wrote:| I'm convinced that Verap is what made me go chronic. |
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LMMFAO!!...Thanks for the laugh
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
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lashultz
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Re: the large list of preventatives
« Reply #11 on: May 24th, 2006, 7:25pm » |
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Well here I go again. After a couple of months of "getting better", they are starting. I think the summer has a lot to do with it. I have increased the verapimill and started with the prednisone. I was previously chronic for several years. Which maybe I still am. I was hoping not. I also use kudzu and zomig as preventatives daily. Oyxgen also helps for an abortive along with imiterx. I do not use a prednisone tapper. I just use 10 mg. once or twice a day. My doctor is very stingy with steriods and doesn't believe in the tapper theory. I tend to agree with him.
lashultz
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tommyD
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Re: the large list of preventatives
« Reply #12 on: May 25th, 2006, 6:36am » |
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I would start with the preventive that works best for me, but your neuro is not going to write you a script for tryptamines.
Done properly, tryptamines such as psilocybin can prevent entire cycles. The side effects, if you are careful with the dosing and are not insane, are just about non-existant, except maybe for a case of the giggles.
The cost is low, there is no hassle with doctor appointments, insurance coverage & etc. and you take your medicine once a week for a couple or a half-dozen weeks.
Problems: still illegal, still have to grow them yourself (for best and safest results), must NOT use any of the hallucinogens if you suffer from inherent mental illness. Do not drive or operate heavy machinery while under the influence (Heavy, Man!). There may be a moderate increase in heart-rate & blood pressure.
Another tryptamine, seems to be effective with even fewer psychedelic side effects, but it is still early in the investigation. LSA is a much-milder cousin of LSD and is found in the seeds of certain flowering vines. The seeds may contain other alkaloids that can cause bad reactions, and one must proceed with caution.
And one must educate oneself fully before considering the use of any tryptamines: www.clusterbusters.com
-tommyD
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