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Weatherman
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Sorry...Just Got More to Say
« on: Jul 1st, 2006, 1:16am » |
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Hi Again All,
I know I have only been a member for a few days and I've already talked a lot but I've never had anyone to talk to about this demon so please just, bear with me.
I'm sure I won't say anything that you havn't all heard a thousand times. One thing I'm finding though...after 15 years of these things, this site...all of you people and all of the info...it's the best treatment I could ask for. Hell, I felt like I was heading toward an attack when I started writing this and I already feel better just babbling on. 
Anyway, I'm in my second week of what is usually 6 or 7 weeks. My last cycle was the first time I had successful treatment...varapamil, prednisone and O-2. I was probably 3 weeks into my cycle then but after a few days of treatment, I was pain free. I had all the bad prednisone side effects but it was well worth it. By the way, my HA's are usually 4 to 8 per day...worst at night... Kip 5 to 8 with an occassional 9.
That last cycle was 2 years ago. I've never had a 2 year break. I thought I was cured!.....NOT!! So yes, I am in another very bad cycle. But instead of going straight to the prednisone and varapamil I tried some of the other ideas I learned in here. I'm on day 4 of kudzu and tonight will be night 4 of melatonin. I went pain free the night before last and all day yesterday!! I really thought I was on to something. Unfortunately, I got hit hard last night and this morning...I think 5 HA's all together...killers. I'm not giving up on kudzu and melatonin but I had to start on some prednisone today.
So far, no major pain since my first dose. I thought I felt one coming this evening but I O-2'd it away. Thanks to you guys I now have the right O-2 regulator and mask. It worked great....Thanks!!
So, so far pain free. The damn prednisone has me very edgy again but like I said before....fair trade. I probably should have stayed more patient with the kudzu/melatonin but that was a very rough night. Guess I won't know until the next cycle if kudzu/melatonin alone can do the trick.
Well, here's to a successful prednisone future and here's another to all you wonderful people....my new friends. You can't imagine how much you all have helped me cope.....Thanks for listening!
I wish you all the best.
Doug
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E-Double
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Re: Sorry...Just Got More to Say
« Reply #1 on: Jul 1st, 2006, 2:38am » |
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I never used Kudzu , however I swear by melatonin, though I don't use anything at te moment........
you can take your pred taper and still use melatonin.
Good luck and enjoy hurricane season 
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spidey426
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Re: Sorry...Just Got More to Say
« Reply #2 on: Jul 1st, 2006, 4:25am » |
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I dunno, I have some theories on the Melatonin.. supposedly it works by not allowing your body to hit REM cycles, which is what triggers the CH. That's good and all, but REM is pretty important.. I'm sure after a few days of Melatonin laced sleep you're body's gonna overpower it and hit REM no matter how much melatonin you take. When I was trying the melatonin it seemed to work in spurts- worked for a few nights, then didn't, they did.. etc..
anyways.. don't feel bad about repeating, just let it out, that's what we're here for: ) How were the travels?
pfw from ny
spidey
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Sean_C
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Re: Sorry...Just Got More to Say
« Reply #3 on: Jul 1st, 2006, 8:24am » |
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We're all part a huge family here Doug and your part of it  Its our little house of pain sort of speak
You can ask all the questions you want, thiers no limit on someones questioning.
Glad you've gotten some relief, nothing better than a pf day when in cycle
Sean......................................
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Richr8
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Re: Sorry...Just Got More to Say
« Reply #4 on: Jul 1st, 2006, 9:58am » |
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WM,
My treatment iis similar to yours and I can't argue that pred tapers break my cycle, however, as I get older my recovery takes longer each year due to issues with my joints, sleeplessness etc. After my last cycle, it was two full months before I could walk without pain or discomfort or sleep a full night.. The stuff is brutal. For that reason, I'll be looking for an alternative approach next season.
No sense in accelerating the aging process any further.
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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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ShaneM
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Re: Sorry...Just Got More to Say
« Reply #5 on: Jul 1st, 2006, 12:30pm » |
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Hey Rich,
I too am using preds to break my cycle. I am noticing this time that I have some snap snap crakle pop things going on. Is this what is happening with you or is it real hard pain in the joints?
Shane
P.S. WM - I get hit sometimes during flight.
P.S.S. My parents live in Jax and I watch you whenever I'm in town.
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Linda_Howell
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Re: Sorry...Just Got More to Say
« Reply #6 on: Jul 1st, 2006, 1:15pm » |
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Quote: You can't imagine how much you all have helped me cope.....Thanks for listening!
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And that is why DJ started this site.
If I didn't formally welcome you before, I do now.
Linda
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catlind
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Re: Sorry...Just Got More to Say
« Reply #7 on: Jul 1st, 2006, 1:22pm » |
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Doug,
When I first found ch.com 4 years ago I cried like a baby. No one had been able to give me any real help for treatment and I was pretty close to being suicidal.
My hubby had just returned from a deployment in Afghanistan and was about to leave for a deployment to Bosnia. I was on my own with a 2 year old, 8 and 10 year old. Through the folks here I learned how to cope and found multiple treatment options.
This site saved my life and most definitely saved my sanity. I found validation here that can't be found anywhere but with other clusterheads. When I started whining too much and having too many pity parties, the crew that was here gave me a swift kick in the a$$ and it was just what I needed to get over it and get on with my life. This site lets you know you aren't crazy, that you aren't alone, and provides a safe haven from the pain the beast dishes out.
There is nothing in the world like having the validation and support that only other sufferers can give.
You will find this site and the people that frequent it are always there and willing to lend a supporting ear and shoulder.
I hope you find many more pain free times ahead.
Cat
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Weatherman
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Re: Sorry...Just Got More to Say
« Reply #8 on: Jul 1st, 2006, 2:02pm » |
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Thanks for responding everyone. Had another wicked night last night, even with the prednisone. MAN! It was only my first day of prednisone though...keeping fingers crossed that I'll see better results.
Anyway, I'll try to respond to everyone.
E Double- I am still on melatonin too and Kudzu
Spidey- My melatonin results are not good so far. I take 9mg before bed and it puts me out but so far only 1 pain free night. It's quite a pattern now. I get hit about an hour and a half after I go to sleep. I hit the O-2 and wrap my head in an icy towel. 15 to 30 minutes later it's gone. Go back to sleep. Hour and a half later, here we go again! Frustrating to say the least. This cycle is different that way. I've never had so much night time trouble before.
All- This is the first time I've heard about all the joint and bone trouble with prednisone. I've only used it once before and don't remember any of that kind of trouble. Sure hope to avoid that.
Rich- What alternative treatments will you try next time?
Shane- Thanks for watching when your in town. Drop me a line next time you are coming. Maybe we can get together. Golfer?
Linda, Cat, Sean- Thanks for the very kind words and support!!
Are all you guys in cycle right now or just here to support?
OK, day 2 of prednisone. Bad night last night. Major shadows so far all day today but no big hits yet. Wish me luck as I wish all of you luck.
Thank You!
Doug
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Richr8
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Re: Sorry...Just Got More to Say
« Reply #9 on: Jul 1st, 2006, 2:20pm » |
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on Jul 1st, 2006, 2:02pm, Weatherman wrote:
Rich- What alternative treatments will you try next time? |
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Kudzu or perhaps CB. I'm not in cycle now, just here to support. I'm an episodic with typically Fall/Winter cycles.
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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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ShaneM
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Re: Sorry...Just Got More to Say
« Reply #10 on: Jul 1st, 2006, 3:16pm » |
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Doug,
I am on everything that you are except for the kudzu. But I am really interested to see how it works for you. I just spoke to the Doc about giving it a go the next cycle. And he is really willing to do some research into dosage levels for me before then. Pkease, keep me informed. You can always find my e-mai through my profile. I have been back on my taper for 3 days and have been PF for 2. I really hope you get some relief soon. I have to go to San Diego for a week next month and am kind of aprehensive myself on how the flight will effect me. I am at the end of my normal cycle so hopefully it will be no prob. I have not be hitting the links as oftens as I would like the last year or so. Only 3-4 times a season. Mostly because of scrambles (beer feast). But I do enjoy getting out there. Next time in town is planned for the end of the year. So, if you don't mind a real relaxed round... 
Take it easy,
Shane
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Linda_Howell
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Re: Sorry...Just Got More to Say
« Reply #11 on: Jul 1st, 2006, 3:34pm » |
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Quote:| Are all you guys in cycle right now or just here to support? |
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Lots are in cycle.
Less of us are chronic and are always in cycle.
even less haven't had a CH in a long time.
ALL are here to support.
Linda
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marlinsfan
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Re: Sorry...Just Got More to Say
« Reply #12 on: Jul 1st, 2006, 6:48pm » |
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on Jul 1st, 2006, 2:02pm, Weatherman wrote:
Are all you guys in cycle right now or just here to support?
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My last cycle ended July 12th 2005. Been coming here almost daily since I found this place in May of 2005 after my cycle started up in April. Thanks to this place I talked to my neuro, got diagnosed, found Oxygen & Melatonin, and most importantly, retained my sanity.
I live in Hollywood, FLA. If you come down here, we can play some golf!
PF wishes. Stick with the melatonin, don't give it up. It took 6-7 days for it to kick in for me.
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marlinsfan
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Re: Sorry...Just Got More to Say
« Reply #13 on: Jul 1st, 2006, 7:49pm » |
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WM, I'm not sure if you've read up on triggers yet, and if you've identified what yours are. For me, I'm strictly a night-time clusterhead if I watch what I eat and drink. Before finding this site, I would get hit at all hours of they day while in cycle because I didn't know that some of the foods and drinks I ingested would trigger an attack.
My wife is a chef, so I have an advantage in that she can help me identify common ingredients in different foods that may trigger a hit for me. What I've found so far is that 100% of the time when I eat/drink the following I get a hit: alcohol, aspartame (the sweetener in Diet Coke, Equal, etc), anything citric (lime, lemon, oranges, lots of crap out there with citric acid). Additionally, I will get hit once in while when I eat: nuts, milk chocolate (dark is OK), tomatoes, spicy food, and I'm sure there are others which I don't remember now.
If you haven't kept a dietary journal, you may want to start. For me it helped keep virtually all of my daytime hits at bay.
Also, I used to avoide caffeine as when I was misdiagnosed as Migraines I was told that the caffeine was bad for it. I'm sure you've read already, a strong black coffee at the first sign of an attack may help abort it quickly.
PF wishes.
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Weatherman
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Re: Sorry...Just Got More to Say
« Reply #14 on: Jul 1st, 2006, 10:50pm » |
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Thanks Marlins fan. I'll keep with the melatonin for sure.
Thanks for the foos info. I was wondering if that might be part of it. I've been on the south beach diet for a couple months. Lost 25 pounds! Then my cycle started. Now I'm sure the prednisone will bring the weight back and I'll end up starting over  If you know anything about that diet you know it's NO SUGAR so aspartame is big for me. No aspartame would suck! The rest of that stuff is no problem to avoid for me. I have been wondering if I may have a problem with dairy though. Seems like I've had hits if I eat dairy at night. Guess I ought to avoid it just in case.
Man, I was just in south Florida for a few days of golf. Sorry we didn't meet sooner. we needed a 4th each day. I've got a good friend down there so I get there often. With hurricane season here I probably won't be down soon, unless it's to cover a storm. I'll be sure to get in touch when I plan to come. You too if you ever get up this way.
Thanks
Doug
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marlinsfan
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Re: Sorry...Just Got More to Say
« Reply #15 on: Jul 2nd, 2006, 7:00am » |
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on Jul 1st, 2006, 10:50pm, Weatherman wrote:| If you know anything about that diet you know it's NO SUGAR so aspartame is big for me. No aspartame would suck! |
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I switched to Splenda. It's not as sweet, but is CH approved!
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Sandy_C
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Re: Sorry...Just Got More to Say
« Reply #16 on: Jul 2nd, 2006, 1:00pm » |
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Hi Doug, and welcome. Isn't this site wonderful! Just when you think you've come to the end, and can't take it anymore, you find this place, and life becomes worthwhile again, despite the pain.
This family can be, let's see, how can I phrase it, "a little odd". We argue and fight among ourselves, we laugh at each other (and ouselves), we cry with each other, - we each have our own lives - but we're always there for each other. I'm an episodic, currently between cycles. My cycles will run anywhere from 8 to 16 weeks, with 1 1/2 to 2 years PF time between cycles, so I'm one of the very fortunate ones here. There are so many "family" on this board who are chronic have no relief at all - and they absolutely amaze me.
Stay with us, ask questions, read, and keep the faith. Every time you ask a question, you are not only helping yourself with information, you are helping others.
Welcome aboard!
Sandy
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Charlie
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Re: Sorry...Just Got More to Say
« Reply #17 on: Jul 2nd, 2006, 1:00pm » |
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Glad you are having some success anyway and feel free to rant. We all have.
One or two things: When I slept in a recliner rather than bed, most of the time I'd have one fewer hits at night. Also, mine have been gone for 14 years and although I have yet to explain it, the one variable is that I began drinking icredibly strong coffee in 1991. I'm afraid to stop now.
If you haven't run across it, here is the technique that helped me:
Dr. Wright’s Circulatory Technique:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.
I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.
Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.
This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
Charlie
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Charlotte
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Re: Sorry...Just Got More to Say
« Reply #18 on: Jul 3rd, 2006, 1:44pm » |
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Hi and welcome.
I use liquid kudzu extract and maxalt mlt. I'm chronic so I think my standards of relief are geared more towards functional/non-functinal rather than pf.
Welcome aboard.
Charlotte
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JeffB
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Re: Sorry...Just Got More to Say
« Reply #19 on: Jul 3rd, 2006, 2:25pm » |
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I stared getting hit at age 25, 3-4 cycles a year for about 3 years, then pf till I was 30. Again with 3-4 cycles a year 6-8 weeks each time for 5 years then pf for 5 years. Had 3 cycles last year and am pf now. I have type 2 of that dreaded diabetes crap and was put back on verapimil about 2 years ago by my nuero when I was diagnosed with type 2.
Anyone else go such a long time without getting hit??
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chewy
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Re: Sorry...Just Got More to Say
« Reply #20 on: Jul 4th, 2006, 9:38pm » |
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Quote:even less haven't had a CH in a long time.
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Haven't entered a cycle in 4 years now.
Are you using a prevent with that prednisone. You may already know this but without a preventative there is a high likelyhood the CH will return when you start tapering from the pred.
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Weatherman
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Re: Sorry...Just Got More to Say
« Reply #21 on: Jul 4th, 2006, 10:29pm » |
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Hi Chewy
The first time I was on preed the doc also did varapamil and it worked very well.
This time I was already on a beta blocker for some very high blood pressure when my cycle started. Doc didn't want to add varapamil fearing it would slow my heart too much. He did say if I started rebounding during the taper we would consider getting off the beta blocker and switching to the varapamil. My blood pressure was very high and the beta blocker has been doing an excellent job of keeping that down. With that kind of success the doc doesn't want to change unless absolutely needed. I found it hard to argue with that so we'll see what happens over the next few weeks and take it from there. By the way, I'm also taking kudzu and taurine supplements on my own. Doc isn't big on me doing that but said it was fine.
Thanks
Doug
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chewy
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Re: Sorry...Just Got More to Say
« Reply #22 on: Jul 4th, 2006, 11:26pm » |
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Quote:| He did say if I started rebounding during the taper we would consider getting off the beta blocker and switching to the varapam |
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Good plan and a good Doc.
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ShaneM
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Re: Sorry...Just Got More to Say
« Reply #23 on: Jul 8th, 2006, 7:24am » |
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Doug and Chewy,
I was on 240 verap when I started on my latest and increased to 480. Also started topamax to 100mg and then finally did a pred taper from 60 mg over 2 wks. It broke in 2 days and then returned after two days when ending the taper. Also, had terrible shadows... After 2 more weeks we decided that maybe I just was not on the pred quite long enough so, decided to try again. Now, taper worked within hours and although I am on day 5 of the new round, no new HA. And no shadows at all. Also still taking the other meds plus 12mg Melatonin. I will say that before the first taper the amount of HA a day were 6 a day. And between prednisone courses they were 2a day which leads me to believe that I may have been at the apex of my cycle. But I am curious as to what connection is between the verapamil and prednisone.
Thanks guys,
Shane
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Weatherman
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Re: Sorry...Just Got More to Say
« Reply #24 on: Jul 9th, 2006, 1:47am » |
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Hi Shane,
Varapamil is a calcium channel blocker and has had good success for some in breaking a cycle. But it can take a couple of weeks to really kick in. So the plan is to do the pred. taper which kicks in right away. Then as you taper off pred. the varapamil takes over to keep the cycle broken.
It seems to be the first plan of choice these days and it's worked very well for me in the past. But as I said earlier, my doc isn't going with varap this time because I'm on a beta blocker for my blood pressure. He's hoping the beta blocker will keep the cycle broken. We'll see. He's willing to switch to varap if the CH comes back as I taper the pred.
By the way, my pred taper is 3 weeks. 1 week 60mg, 1 week 40mg and 1 week 20mg. I'm in my 2nd day at 40mg and still no CH's!
I am doing some things different this time around though. I take 1000mg of taurine per day. I take 9mg of melatonin before bed. But the one I'm counting on is the 6 Natures Way kudzu's I take per day.
If I've read correctly, kudzu also acts as a calcium channel blocker like varap. And my doc said I was ok taking it with my beta blocker. If the kudzu does what I'm hoping it will do, it will keep the cycle broken after the pred taper just like varap would. I guess I'll know if the plan is working in a week or so as I get off the pred. That's also when I have to fly so I sure hope it works or I'm in for a hell of a rough trip.
So far so good!! I'll keep you posted.
Doug
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