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SophiaK
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Neurotin information
« on: May 7th, 2006, 3:59pm » |
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I saw a blurb on TV this morning that said 'if you were prescribed neurotin and contiplated or attempted suicide' to call 1 800 law firm. Reason I'm writing this is because someone very close to me was being treated with neurotin and indeed became extremely depressed and was taken to the ER because he was thinking suicide.
Now, knowing that we have what is called 'suicide' headaches it's pretty dam frightening to think what possibly could happen. My neuro wanted me to take neurotin and I have not done so. I cannot use any kind of pain killer or med until the enzymes of my liver go down and even then I'm not sure I will be able to use anything. The liver problem was caused by Topamax and depakote and advil. I'm screwed. O2 didn't work for me. The aches are coming back to back, the nights are rough.
I am starting accupunture, cross your fingers for me. I will be getting herbs at some point.
Hugs to all. S
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chewy
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Judging by the results others have had with accupuncture, myself included, you will need a whole lot more than crossed fingers.
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SophiaK
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Re: Neurotin information
« Reply #3 on: May 8th, 2006, 9:33am » |
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Biker: Our Newsday reported recently that Harvard Medical school is doing a study on Rooms as a treatment for headaches. I went on their site and couldn't find anything on it. That doesn't neccessarily mean anything they aren't. Thanks for the important info, I passed it on.
Chewy: Nothing ventured nothing gained. My options are limited. I cannot afford not to try it. There maybe other methods he can try. It beats the hell out of eating up my liver with the meds the doctor gave me. I wonder how many sufferers aren't aware of the damage being done to their livers. I never would have found out if I didn't have another problem and the damage was discoverd from blood work. Cirrhosis of the liver is the eventual outcome of high enzyme count out of control.
I do know of someone being successful with accupunture. Maybe I'm one of the lucky ones.
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nani
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Re: Neurotin information
« Reply #4 on: May 8th, 2006, 11:38pm » |
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Sophia, read up on kudzu. Here's some links to start:
(there are links to other threads in this one)
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1110584362
In Chinese medicine, kudzu is used to treat angina, high blood pressure and is used as a liver "tonic". It can also be a pretty effective CH preventative. Print out this page and show it to your doctor. It may be worth a try (?)
http://med-owl.com/clusterheadaches/tiki-index.php?page=Kudzu
About Neuronitn... for a while doctors were prescribing it for too many off label uses, including depression. There were lots of problems in doing so. That's the basis of many of the lawsuits that are pending.
pain free wishes, nani
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Jasmyn
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Re: Neurotin information
« Reply #5 on: May 9th, 2006, 1:46am » |
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Sophia, like Chewy acupuncture did not do a thing for my CH and I do hope that for you it works. Different strokes for different folks.
There was a time when I was totally without meds and here are a few tips in coping:
9mg Melatonin an half an hour before bedtime.
Sleep at a 45 degree angle with an icepack under your pillowcase, a fan at the top of your head and a bottle of ice cold water next to you.
Swirling the ice water in your mouth during a hit can be excruciating but it sometimes do lessen the severity of a hit. When you feel a hit coming on try Red Bull or extra strong coffee, if you catch it in time you may abort the hit.
Very deep breathing in front of a cold aircon can also alleviate the pain.
Hope this will be of some help. Charlie also has a method that is very good at the start of a hit when you can still concentrate.
I'll ask him to place it here or you can look through some other threads, it is there somewhere.
Good luck to you and I hope you get a break soon.
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Jazz 
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clarence
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Re: Neurotin information
« Reply #6 on: May 9th, 2006, 7:31am » |
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I have been prescribed Neurontin two different times, the most recent is right now. The first time, it seemed to help as a prevent. Now, nothing.
Neither time did it intensify depression. That may be because I also take Prozac for depression, and it counteracts the Neurontin? Who knows.
I think they are prescribing it now for Hepititis. Go figure.
Casey
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SophiaK
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Re: Neurotin information
« Reply #7 on: May 9th, 2006, 3:56pm » |
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Nani, great info, thanks, I will use it.
Jasmyn, unfortuately, cold will trigger a HA for me. Cold air does the same thing. I have to make sure I have a hat on if I go outdoors in cold weather. Strangely enough Melatonin doesn't work for me. It will give me strange dreams.
I like strong coffee but it doesn't work either. It does increase my heart beat, which is not good as I have A Fib.
It's freakin frustratin is what it is. The only thing that gives me some relief is a heating pad. I know that there is something or way and I will do my darndest to find it. Thank you for taking the time to suggest ways to cope, I appreciate it. S
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Jasmyn
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Re: Neurotin information
« Reply #8 on: May 9th, 2006, 5:26pm » |
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Sophia look under:
Topic: circulatory technique by Charlie
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Jazz
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rjl
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Re: Neurotin information
« Reply #9 on: May 10th, 2006, 1:56am » |
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So is it wrong to use neurotin off label even though its effects have been studied on the human body no matter what it is used for. As compared to kudzu which has no label. It might have side effects too. Who keeps track of them?
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Gator
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Re: Neurotin information
« Reply #10 on: May 10th, 2006, 2:30am » |
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rjl, seeing as how there are no medications specifically for cluster headache, everything we take is used "off label." Well, except for imitrex injections. As long as it works for you and does not cause worse problems than you are trying to fix, then I see no reason for you and your doctor not to try anything and everything.
You should do your homework on any treatment. Ask the doctor how long the med should take to start working and what effects/side effects to expect, talk to your pharmacist and research treatments on the internet. Google is a great tool for finding info on just about anything.
CH is an odd animal and can be hard to treat. What works for one person will not necessarily work for another. What works this cycle may not work next cycle. What never worked in the past may work next cycle. We are in a constant state of experimentation with this disorder.
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chewy
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Re: Neurotin information
« Reply #11 on: May 10th, 2006, 4:41am » |
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Quote:| Chewy: Nothing ventured nothing gained. |
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Its been ventured countless times with little or no gains.
Lost time when you could be putting your energies into proven treatments.
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mynm156
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Re: Neurotin information
« Reply #12 on: May 10th, 2006, 12:54pm » |
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on May 10th, 2006, 4:41am, chewy wrote:
Its been ventured countless times with little or no gains.
Lost time when you could be putting your energies into proven treatments. |
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I'm still waiting for a PROVEN treatment if it does not work for ME they have not PROVEN $hit! Keep us posted Sophia
MYNM156
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clarence
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Re: Neurotin information
« Reply #13 on: May 11th, 2006, 11:00am » |
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Just a note - discontinued Neurontin.
The $hit doesn't work for my headaches...and maybe it does make me more depressed. My wife told me this morning that she has noticed me slide into a deeper and deeper depression over the last month. I have started to realize it over the past few days. I have NO IDEA if it is related to the neurontin, but if it doesn't work for the headaches, why even continue it?
On another note...
A good friend of mine who is a neurosurgeon asked me to try Indomethacin. I told him that I didn't really want to because it works for CPH, and not Clusters. He asked me to humor him (he really does care, and is not using me as a guinea pig). Then I thought, Well, I said I would try anything once to get rid of this pain. So, I will try it, though I expect little. One of its side effects is to increase depression though...so, who the hell knows. I am sick of this.
Casey
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nani
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Re: Neurotin information
« Reply #14 on: May 11th, 2006, 3:30pm » |
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on May 11th, 2006, 11:00am, clarence wrote:
A good friend of mine who is a neurosurgeon asked me to try Indomethacin. I told him that I didn't really want to because it works for CPH, and not Clusters. He asked me to humor him (he really does care, and is not using me as a guinea pig). Then I thought, Well, I said I would try anything once to get rid of this pain. So, I will try it, though I expect little. One of its side effects is to increase depression though...so, who the hell knows. I am sick of this.
Casey |
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Casey, do you remember Renee? (I wonder what happened to her?) Anyway, her neuro had her on it because it supposed to work for chronics. Maybe it will. I tried it but found the rebounds excruciating... and I still got hit...
but, you never know. Feel better, sweetie. And try to keep your chin up. Sending love (the noun )
nani
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clarence
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Re: Neurotin information
« Reply #15 on: May 11th, 2006, 3:36pm » |
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on May 11th, 2006, 3:30pm, nani wrote:
Casey, do you remember Renee? (I wonder what happened to her?) Anyway, her neuro had her on it because it supposed to work for chronics. Maybe it will. I tried it but found the rebounds excruciating... and I still got hit...
but, you never know. Feel better, sweetie. And try to keep your chin up. Sending love (the noun )
nani |
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Took the first dose of Indomethacin this morning. I don't think I have ever felt so ill after taking a med, so quickly. Within about 20 minutes I felt a little dizzy. Over the next 2.5 hours I was lightheaded, nauseaus, and very very dizzy - with a headache (though not a full-blown cluster, thank god). That's 1 x 50mg pill. Couldn't handle it. I won't take the next one.
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Gator
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Re: Neurotin information
« Reply #16 on: May 11th, 2006, 3:55pm » |
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Sorry you had such a rough time with the indo. Did the doc tell you that you should take an antacid with it? I was told to take OTC Zantac to cut down on the stomach problems. It didn't work for me even up to 300mg.
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clarence
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Re: Neurotin information
« Reply #17 on: May 12th, 2006, 4:27am » |
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on May 11th, 2006, 3:55pm, Gator wrote:Sorry you had such a rough time with the indo. Did the doc tell you that you should take an antacid with it? I was told to take OTC Zantac to cut down on the stomach problems. It didn't work for me even up to 300mg.
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He didn't mention the antacid. But, I felt so horrible with it I think I won't take it again.
Thanks for the suggestion Gator,
Casey
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mynm156
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Re: Neurotin information
« Reply #18 on: May 14th, 2006, 12:12am » |
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Sorry I am done with the Drug. It has given me HORRIBLE NIGHTMARES, messed with my brain. I guess that me and the beast are in for the long haul!!!
mynm156
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Seed
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Re: Neurotin information
« Reply #19 on: May 31st, 2006, 4:11pm » |
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I think I can confirm the Neurotin information at least in my case. It's something I have been dealing with the last few weeks. I had good success on 300mg 3 times a day but I am now to 1200mg 3 times a day and efect but plenty of bad thoughts.
I only post to say that based on my experience so far, please be careful with this drug. After reading this post, I am discontinuing its use.
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Ueli
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Re: Neurotin information
« Reply #20 on: May 31st, 2006, 7:17pm » |
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Sophia,
I would like you to keep one thing in mind: The liver not only has to degrade the products of the pharmaceutical industry but any chemical stuff foreign to the body. This also includes any active ingredients of herbs. Natural products, unless they help only through a placebo (like acupuncture), are not by nature easier on the liver than pharmaceuticals.
I hope you'll soon find something that helps.
Ueli 
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