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Cluster Headache Help and Support >> Medications, Treatments, Therapies >> 4 Month Cycle and still counting! http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1278909266 Message started by klruiz on Jul 12th, 2010 at 12:34am |
Title: 4 Month Cycle and still counting! Post by klruiz on Jul 12th, 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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Title: Re: 4 Month Cycle and still counting! Post by wimsey1 on Jul 12th, 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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Title: Re: 4 Month Cycle and still counting! Post by Skyhawk5 on Jul 12th, 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 |
Title: Re: 4 Month Cycle and still counting! Post by Guiseppi on Jul 12th, 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 |
Title: Re: 4 Month Cycle and still counting! Post by klruiz on Jul 12th, 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? |
Title: Re: 4 Month Cycle and still counting! Post by Guiseppi on Jul 12th, 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 |
Title: Re: 4 Month Cycle and still counting! Post by klruiz on Jul 13th, 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. |
Title: Re: 4 Month Cycle and still counting! Post by klruiz on Jul 13th, 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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Title: Re: 4 Month Cycle and still counting! Post by Guiseppi on Jul 13th, 2010 at 4:51pm
Hoping the Topomax does it for you, it has quite the loyal following on the board.
Joe |
Title: Re: 4 Month Cycle and still counting! Post by Callico on Jul 13th, 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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