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klruiz

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Orange Grove, Texas
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4 Month Cycle and still counting!
Jul 12^th, 2010 at 12:34am

Started taking verapamil (80mg, 3x day) since March 14th. It seemed to be extremely effective. I was only have a few breakthroughs and it felt amazing not to have these constant shadows. Dr. wanted me to taper down to 2 a day on May 26th. After 10 days, I started getting some pretty hard hits. (I also broke out with a rash on my face that I have finally recovered from.) Dr. agreed to go back to 3 a day. However, the verapamil doesn't seem as effective as it was before I tried to taper. I'm having 2-3 hits a day and lingering shadows. I'm going to call the Dr. Monday, but wanted to hear what some of you have to say.

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Batch

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Control The Beast With
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Re: 4 Month Cycle and still counting!
Reply #1 - Jul 12^th, 2010 at 7:12am

Ask for a prescription for oxygen inhalation therapy when you see your neurologist. Ask for a flow rate of 25 liters/minute but be prepared to settle with one for 15 liters/minute.

See the following link for the "How To" obtain a properly written prescription for oxygen therapy.

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

This link contains some suggested downloads you can print out and take to your neurologist.

Take care,

V/R, Batch

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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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wimsey1

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Re: 4 Month Cycle and still counting!
Reply #2 - Jul 12^th, 2010 at 8:42am

O2 rules! And read around the site for alternative preventatives and abortives. Also, make sure you're clear (and have written documentation available here and elsewhere) that a therapeutic level of Verapamil for CHs can be in the 400-960mg range-much higher than usually prescribed for high blood pressure. What works only a little bit on low doses can work more effectively at a higher dose if you're heart can take it. Blessings! lance

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Skyhawk5 CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 1320 Ypsilanti, Mi. USA Gender:	Re: 4 Month Cycle and still counting! Reply #3 - Jul 12^th, 2010 at 8:55pm That is a low dose of Verapamil for CH treatment. I take 480mgs/day, I weigh 155lbs. Like Batch says, I use O2 (oxygen) to abort 98% of my attacks. Good luck, Don
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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: 4 Month Cycle and still counting! Reply #4 - Jul 12^th, 2010 at 9:19pm Ditto on oxygen...the miracle elixir for many of the ch crowd. If the verapamil doesn't cut it talk to your doc about lithium. Has been a very effective prevent for me for many years. I'm 50, episodic for about 32 years. Lithium will block up to 60-70% of my hits. Joe
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klruiz

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Re: 4 Month Cycle and still counting!
Reply #5 - Jul 12^th, 2010 at 10:27pm

Ok, Dr. is out of the office this week, but his nurse called me back. He wants me to increase the verapamil to 400 mg/day and see how it works. He is willing to prescribe the O2 and agrees on its effectiveness; however, I am changing insurance companies at the end of the month. We're going to work on the O2 with the new company.
Joe, how does the lithium make you feel? What is your dosage?

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Guiseppi

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Re: 4 Month Cycle and still counting!
Reply #6 - Jul 12^th, 2010 at 10:46pm

I take 1200 mg a day while on cycle. I recently retired from law enforcement after 30 years. I took that dosing of lithium while working and even my beat partners couldn't tell when I was on it.

You pee a lot the first 2 weeks while your body adjusts to this new salt. It gives me a mildly lethargic feeling which I easily combat with a cup of coffee. On cycle I drink a lot more coffee during the day anyways as this seems to help keep the beast at bay for me. Some people suffer mild hand tremors I haven't experienced those yet, but we're all different.

Here's hoping the increased dosing of Verapamil will do the trick for you. It has worked for many on the board, but as someone else mentioned, some go as high as 960 mg a day to get relief.

Joe

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"Somebody had to say it" is usually a piss poor excuse to be mean.

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klruiz

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Re: 4 Month Cycle and still counting!
Reply #7 - Jul 13^th, 2010 at 3:42pm

OK, I increased the Verapamil. I first increased the last dose last night to 160mg.
I was up all night--I just felt miserable. At 7 this morning, I took another 160 mg. However, I noticed a little shortness of breath and palpitations. I had a normal BP, but very irregular heart rate. I called the Dr. (of course he is still out of the office), but the nurse didn't seen too concerned. She said she would get back with me. (She hasn't yet.) At about 9:30, I started feeling better, had a regular pulse rate, normal BP. I'm not sure if I can handle an increase in Verapamil. Now I'm just reading through the posts to gather more info while I wait for a return call.

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klruiz CH.com Newbie Offline I Love CH.com! Posts: 10 Orange Grove, Texas Gender:	Re: 4 Month Cycle and still counting! Reply #8 - Jul 13^th, 2010 at 4:20pm I just got the call. Dr wants me to go back to Verapamil 80mg 3/day and add Topamax 25mg twice a day.
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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: 4 Month Cycle and still counting! Reply #9 - Jul 13^th, 2010 at 4:51pm Hoping the Topomax does it for you, it has quite the loyal following on the board. Joe
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Callico

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Re: 4 Month Cycle and still counting!
Reply #10 - Jul 13^th, 2010 at 4:57pm

I wouldn't wait on the O2! Why put yourself through it for the remaining time on your Ins? I find it to be very effective @ 25 lpm. Can knock out a hit witing 5-8 mins if I get right to it.

If the Verap doesn't do it for you, and if you don't tolerate the Topomax as I don't I would suggest you research Kudzu here on the board. I've found it to be as effective as Verap and Lithium and without the side effects. Some don't have issues w side effects as I do, and that is GREAT! I hope you are one of them, but if you do have issues don't forget Kudzu.

Jerry

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