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Topic: So Long, Farewell (Read 614 times) |
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Ozark_E
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So Long, Farewell
« on: Jan 5th, 2007, 6:02pm » |
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I am happy to let you all know that I have been med free, pain free and CH free for about 5 weeks now. I really tested my remission too over the holidays. I indulged in many triggers (beer, wine, chocolate) with no issues arising. So, I am officially done with my cycle.
I wanted to just summarize my treatment for this cycle, because it was relatively successful for me, minimizing pain as compared to all my past cycles. Much of this I may have posted before, but It went as well as a cluster cycle goes, so I thought I'd repeat just a little.
My CH began in 1993, I am episodic, and my cycles generally lasted 6-8 weeks. The usually repeat every 24-28 months. But my latest remission was 3.5 years! I have a few theories as to why the longer down time, but I'll cover that in a seperate thread (think Black Widows).
When my latest cycle arose, I saw a new neuro, who was great (Dr. Kaplan in Fayetteville, AR if any of you are from around here). He put me on 60mg of Prednisone per day for 10 days, then tapered off by 5mg per day until I was down to zero ( a total of 22 days on prednisone). At the same time as I started Prednisone, I also started Topamax at 50mg per day, and tapered up to 75mg per day by the timne my Prednisone taper ended. He also prescribed Imitrex jabs and pills, and Oxygen.
Imitrex injections warked 100% effective, usually within 3 to 5 minutes. Imitrex pills worked well to, but much slower, 20-30 minutes. But during this cycle, CH came on much slower than in the past, so pills were often a viable abortative. My sense is that this was because of the Topamax.
Prednisone had kept CH away pretty well. So once I tapered off Prednisone (the worst day of the whole cycle), the headaches rocked me once again. My neuro wanted me to escalate rapidly on Topamax to 200mg per day. I was hesitant, as the side effects seemed to be strong. But the CH was worse. So I went with his advice. I went from 75mg per day to 200mg per day Topamax within about 1 week. At 150mg per day I was still getting CH. But when I reached 200mg per day, this was very effective. And the side effects I thought I was getting from Topamax were actually from the Prednisone/Topamax/(caffeine) mixture. On just Topamax I could consentrate at about 90% and felt minimal other side effects.
So 200mg per day was very effictive. I only had to use imitrex maybe 3 times over the next month. All CHs at that point we induced by excercise, especially hiking with a backpack (tension on neck/shoulder). Oxygen was also very effective at wiping out little CH blips.
So after several weeks at 200mg Topamax per day, and very few headaches, I started to wonder if my cycle was over. I talked to the Doc about tapering off Topamax. He gave me a 6-week taper schedule. I didnt want to wait that long, so I tpered off in about 3 weeks. I climbed out of my med foxhole to find that the battle was over!
This is perhaps the most important thing I wanted to say. If the Doc's got you on Topamax or other preventatives, and you know your cycle should be over in terms of your usual cycle duration. Give med-free a try and see. It was worth it for me. At the end I realized that there were some other side effects from Topamax, primarily achey neck and shoulder muscles. Those aches would make me wonder if the beast was lurking around, but once I got off all Topamax, they were gone. I feel good, gained 11 pounds...
I hope my experience helps someone. Topamax works for some, especially at 200mg. Hang in there, I'll stick around and check the boards. It is a great group of folks here. I'll be posting one more thread about Black Widow bights, so LOOK OUT!
PFDAN to all and to all a Good Night.
E
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E-Double
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Re: So Long, Farewell
« Reply #1 on: Jan 5th, 2007, 10:59pm » |
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Glad you are PF!
Try sticking around and extending the support that was given to you to others who may not be PF.
You can surely provide a shoulder, an ear or guidance to those in need.
Good luck
E
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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MorDog
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Not Again!
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Re: So Long, Farewell
« Reply #2 on: Jan 6th, 2007, 11:49am » |
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on Jan 5th, 2007, 6:02pm, Ozark_E wrote:
My CH began in 1993, I am episodic, and my cycles generally lasted 6-8 weeks. The usually repeat every 24-28 months. But my latest remission was 3.5 years! I have a few theories as to why the longer down time, but I'll cover that in a seperate thread (think Black Widows).
E |
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I am interested in hearing more about this. My down times have been getting longer too, growing from 1yr. to almost 2yrs. However my cycles have been lasting longer when I have them also. I look forward to reading your "Black Widow thread"
Mike
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Everyone is entitled to their own opinion, but not their own facts.
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Ozark_E
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Re: So Long, Farewell
« Reply #3 on: Jan 6th, 2007, 9:41pm » |
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I forgot to mention that as part of my treatment, I had an occipital nerve block 2-3 weeks into my cycle. Also I swabbed the inside of my affected nostral twice daily with capzasin (pepper-based) cream, as prescribed by my doctor. And no, I'm not selling capzasin cream.
Ozark_E
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Salvelinus
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With Him, all things are possible. ><>
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Re: So Long, Farewell
« Reply #4 on: Jan 7th, 2007, 2:24pm » |
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on Jan 5th, 2007, 6:02pm, Ozark_E wrote:
This is perhaps the most important thing I wanted to say. If the Doc's got you on Topamax or other preventatives, and you know your cycle should be over in terms of your usual cycle duration. Give med-free a try and see. |
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That's awesome that it worked so well for you! Thanks for being so detailed about your treatment--it's good to know what works for others. I have a question related to your post--I don't intend to hijack your thread at all, but it is related to your main point . . . I'll delete this and repost on a new thread if you want. Just say the word.
My question is about the quote above--knowing when to stop the meds has always been a problem for me. I have fluctuated between chronic and episodic CH (more often chronic), and even during episodic periods I never knew how long I'd be in cycle. Only during my last cycle was I able to predict within a few hours when I would get hit.
So, how does someone like me know when to come off the meds? It has been either hit or miss for me, and maybe that is how it will always be. Any ideas would be appreciated.
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Namaste,
--Scott ><>
"When no one else knows how I feel,
You run to me, with outstretched hands,
and you hold me in your arms.
Again."
--Building 429
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Ozark_E
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Re: So Long, Farewell
« Reply #5 on: Jan 8th, 2007, 9:51am » |
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Salvalinus,
I would suggest starting a new thread. I think more people will see the thread with a new title, as opposed to this one.
It's a tough question though. I always had cycles that were 6-8 or 9 weeks. So after 12 weeks, I new I should be in the clear. I think the Topamax cuased some amount of achyness, and possibly even mild shadows. This could be the case with other meds as well. So it was worth seeing what med-free looked like for me. I don't have a good suggestion when the cycles are less predictable, other than at some point it might be worth seeing if you are clear. Hopefully others have some good advice on this one.
E
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mynm156
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Re: So Long, Farewell
« Reply #6 on: Jan 9th, 2007, 11:28pm » |
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"Half of the modern drugs could well be thrown out of the window, except that the birds might eat them."
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Mattrf
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Re: So Long, Farewell
« Reply #7 on: Jan 10th, 2007, 5:10pm » |
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I am so glad that that all worked so well for you and you are PF now, it is inspirational to a lot of us to heir about those who have fought and won against the beast. I hope you have another long remission, I’ll keep my fingers crossed for you.
Matt
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There is no stronger a person then one who can deal with brain pain and still function.
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Bond007
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Re: So Long, Farewell
« Reply #8 on: Jan 11th, 2007, 8:43am » |
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Great news, bro! I'm glad that the Topamax worked so well for you. I'm at the other end of spectrum where Topamax did nothing. In fact, I wound up with the most serious kidney stones I've ever experienced! It was not pleasant as I landed myself in the ER twice within 5 days and got one ambulance ride out of the deal as well. UGH!
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Sometimes life bites you in the ass -- that's what drugs are for!!
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