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Iggy
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Hey everyone, hope ur not in to much pain today. I have suffered with the beast for ten years. Has anyone else tried the drug FROVA. It definitely works for me to quiet the beast. Bets results are when its taken when the lurking begins, when you feel it coming. Even if you are in a full blown CH it usually stops it within an hour.
Iggy
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TxBasslady
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Re: frova
« Reply #1 on: Mar 12th, 2005, 8:44pm » |
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Hi Iggy,
Welcome to the board.
I use Frova. It has worked very well for me. I get hit at night, always an hour to hour and half after going to sleep. By the time I wake up....the CH has reached a Kip 8-10. The Frova does nothing for the pain level, but shortens the time of the CH down to 18-20 minutes for me.
I am currently trying the Kudzu....haven't taken any Frova for a couple weeks now.
Good luck....PF vibes,
Jean
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Bob P
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Re: frova
« Reply #2 on: Mar 13th, 2005, 4:24pm » |
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Jean,
Because Frova has a 22 hour half-life I'm curious, did you ever try taking one before going to sleep to see if it would stop the 1 hour later attack?
BTW - I always get nailed 1 & 1/2 hours after going to sleep. Even when not in cycle, I wake up 1 & 1/2 hours after going to bed.
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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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PCMCCK
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I highly recommend that before taking FROVA that one read up on it-quite a few conditions attached to taking it and it has not been shown to be effective for cluster headaches.
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Renee
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Re: frova
« Reply #4 on: Mar 14th, 2005, 5:01am » |
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PCMCCK,
There are alot of docs prescribing Frova for it to not be effective for clusters. 
It is my understanding that only Imitrex has been approved as effective for clusters. What about all the other triptans, prevents, etc. that are helping so many that have yet to be approved? 
Every med has attached side effects. IMO, if it brings relief for some than it is effective, at least for some cluster sufferers.
What a mess we would all be in if all we could take is trex. 
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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Bob P
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Re: frova
« Reply #5 on: Mar 14th, 2005, 7:48am » |
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I talked with the Frova manufacturer before the stuff hit the market. Asked them if they were thinking about trying it on clusters. The basic answer was that meegraines are were the money is. Not enough clusterheads to make the cost of getting it approved for clusters worth while.
I think all of the triptans do some good for clsuters. It's just this $$$$ thing that keeps them from getting an official approval for the treatment of clusters.
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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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PCMCCK
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Imitrex is the only "approved" medication for the treatment of clusters in England (along with oxygen), but that is due to their medical system; in the US anything can be used (and virutally everything has been tried on one person or another). Even in England other drugs are used, such as Verapamil, steroids, various anti-depressants, etc. As we all know, some meds work for some and not for others and in the long run I've yet to hear of any medication that has continuously worked on either preventing or aborting attacks over the long run-shall we say a 5-10 year period. I am cautious about trying something that has not been shown to be effective-I have had CH for 25 years and have been chronic for 9 years and desperate though I am at times, I won't take something based upon faith or because of some vague anecdotal tale of it being effective-might as well go to Lourdes-at least will have some good food and fine wine and damn he headaches that the wine might bring on! Frova appears to have some possibly nasty, potentially dangerous side effects, so I'd caution anyone who is going to take it (or any other medication, prescription or not) for CH to check with your treating doc first. It is all to easy to get all sorts of drugs over the internet these days or to travel to Mexico and other countries and buy them, perfectly legal, from doctors or pharmacists whose main interest is getting your money and not taking care of your health. Please don't let desperation lead to loss of intellect and possible harmful consequences to yourself.
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Roxy
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Re: frova
« Reply #7 on: Mar 14th, 2005, 1:27pm » |
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My neuro is Ninan Matthews at the Houston Headache Clinic. He prescribed Frova to me to use as a preventative for a period of about two months. I was working a 7 day a week, 12 hour a day schedule at the time. Relpax had stopped working for me, I refuse to go back to 6 or 7 imitrex injections a day........so we tried frova. I would have some small breakthroughs, but nothing to bad to handle.
I read everything I could find about frova, and there are some side effects, yes......but there are nasty side effects to almost all medications used to treat the symptons of ch (sorry, excluding 02 here). Clusterbusters seems to have to only answer to treating the disease and not the symptons.
From what I have read, and what different neuros have said.....frova is no better or worse than other triptans. It all boils down to what works for an individual. When one stops working, you try another.....and you try not to use too much, because they seem to become ineffective over a long period of use......and NONE of the triptans are good for your body in any amounts. But we know this already.
I am now using Amerge, and trying to use as little as possible. I am cutting the pills in half, and only using it when I know I have to have a few hours of not being hit (or at least not being hit too bad). I don't want to build a resistence to the drug.....but I also just don't like using triptans unless it's a necessity.
The main thing with triptans is...........DO NOT MIX THEM.
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I used to have a handle on life....but it broke.
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Karla
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Re: frova
« Reply #8 on: Mar 14th, 2005, 2:31pm » |
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frova only worked for 2 hrs to keep the beast away and then the beast would breakthrough and return once again. I found it as effective as imitrix except I could take the imitrix several times a day and the frova only once every 12 hours.
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Karla
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Iggy
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Re: frova
« Reply #9 on: Mar 14th, 2005, 4:40pm » |
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i`m just telling everyone of my experience with frova nothing more. I have taken up to 4 pills in a day. But I am episodic and do this under the care of a Dr. Silberstein at Jefferson Hospitol in Phila. This is also accompanied by being infused with 2000mg of depakote and 25mg of topamax. The dep and top I will take for up to 2 monyhs or until my cycle breaks. He assures me I take frova for the 3 months of a cycle and if it works to take it. I shouldn`t have any side effects from my use. The only answer is to use what works for you under dr. advice, and always remember they are practicing medicine.
Iggy
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zrmulcahy
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Re: frova
« Reply #10 on: Mar 14th, 2005, 5:16pm » |
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on Mar 14th, 2005, 4:40pm, Iggy wrote: The only answer is to use what works for you under dr. advice, and always remember they are practicing medicine.
Iggy |
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It's the "practicing" part that worries me 
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Bob P
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Re: frova
« Reply #11 on: Mar 14th, 2005, 5:30pm » |
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Quote:| Clusterbusters seems to have to only answer to treating the disease and not the symptons. |
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Not so sure I can buy that. It's still just a treatment, not a cure.
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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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chris_a_tn
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Re: frova
« Reply #12 on: Mar 20th, 2005, 12:37am » |
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I was given Frova to try when I was first diagnosed. I probably went 36 hours PF then they broke through and I had my first 2 nights with multiple headaches. Jumped off the next day onto Verapamil and Predizone....been PF for 4 days now.
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| « Last Edit: Mar 20th, 2005, 12:38am by chris_a_tn » |
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Pinkfloyd
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Re: frova
« Reply #13 on: Mar 20th, 2005, 1:56am » |
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on Mar 14th, 2005, 5:30pm, Bob P wrote:
Not so sure I can buy that. It's still just a treatment, not a cure. |
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She didn't say it was a cure. She said it "seems" to treat the disease and not the symptoms. I'm not sure I "buy" that (treating the disease) yet either but....IMHO, it does more than treat the symptoms. But why must you put words into people's mouths that they don't say or intend.
Treating a disease does not equal a cure. Ask the people with AIDS, or MS, or ALS or.....
If you don't "buy" that (treating the disease), explain one other cluster med that (ending the cycle prematurely not withstanding) will give people 3, or 5, or 7 days complete relief after one dose. The symptoms remain gone long after the psilocybin has left the building? (yes, I know not EVERYONE gets 3-7 days pain free from one dose)
Name one prevent that keeps preventing attacks after it has dropped below a therapeutic level in the bloodstream.
Name one abortive that keeps on aborting after it has cleared the system.
I've left spaces for your answers. Please use the back of the paper if you need more room to write.
Bobw
(and try to keep it civil...I am, honestly) 
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sandie99
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Re: frova
« Reply #14 on: Mar 20th, 2005, 4:04am » |
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I'm glad you've found something which works for ya! 
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CH happends, Live anyway! PF days to us all!
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TxBasslady
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Re: frova
« Reply #15 on: Mar 20th, 2005, 8:24pm » |
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on Mar 13th, 2005, 4:24pm, Bob P wrote:Jean,
Because Frova has a 22 hour half-life I'm curious, did you ever try taking one before going to sleep to see if it would stop the 1 hour later attack? |
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Bob,
Yes, I did try it before bed. It did keep the CH away.
However...you only get 9 pills on a Rx, I kinda hated using them as a preventative. Cost (in Houston) for these 9 gems is $186.00. My husband is retired from the Gov't and we have very good insurance....good on everything but the damn Frova.
When my doc gave these to me, he instructed me to take them when I had a CH. He never suggested that I take it before the onset. He did tell me that Frova is a med for migraines.....but so are all the other triptans.
In December, my CH was relentless.....I literally went without sleep, pretty much. That's when I took it as a prevent.
Have not taken any Frova since starting the Kudzu.
I had no side effects from the Frova....
BTW....think I saw on the net that Frova was approved in August 2004. Surely the approval was for migraines and not clusters. It has worked very well for me.
Course, I would probably eat dog shit if it would stop CH. 
Jean
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How lucky I am... to have known someone who was so hard to say goodbye too.
Take a kid fishin
www.takemefishin.org
I adopted a Vietnam POW/MIA from El Paso, Texas!
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