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Topic: Just got back from Doc (Read 1815 times) |
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DennisM1045
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Re: Just got back from Doc
« Reply #25 on: Jan 13th, 2008, 11:45am » |
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Hi Coach,
I'm glad to hear your relief continues. I agree with Barbara that this is probably due to the Pred. Unfortunately you have to taper down and can't stay on it forever. It's just not healthy.
With luck you'll have enough Verapamil in your system to keep the beast at bay. This is the trick of the dance your are involved in. When do you have enough Verapamil in your system to be of theraputic value?
Don't be surprised if you have some breakthrough HAs once you taper down. Let your Dr know so the two of you can work through this transition period.
I hope Verapamil is your magic bullet. PFDAN!
-Dennis-
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BaseballCoach
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Re: Just got back from Doc
« Reply #26 on: Jan 15th, 2008, 2:02pm » |
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Thanks Dennis....
I'm now on Verap 240....Doc said that's what I'll level off at for now.
I'm on Pred 10 mg and will start on 7.5 in 2 days.
After 7 days of that, I will go to 5 mg of pred and he said we will come up with a plan after that.
Crappy,
The longest I had previously gone is probably 7-10 days.....Today is my 25th day. I haven't went that long since my HAs have gotten really bad which has been the last 3 or 4 years.....
I'm think it probably is the pred every day that helped....and it kept me up at night and puffed me up....but coming down to 10 mg I can already tell I'm losing some weight by eating right and I feel normal again....Hopefully, notice I said hopefully, the 5 mg will hardly have an effects on me and I can then get off of them or taken them rarely....
For Everyones INfo, My mixture consist of,
Morning-
10 mg Pred
75 mg Topomax
500 mg Depakote
Night
240 mg Verapamil
75 mg Topomax
500 mg Depakote
Only thing that will change now is the Pred.
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Crappy
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Re: Just got back from Doc
« Reply #27 on: Jan 15th, 2008, 2:28pm » |
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Coach,
You sound alot like me. About 2-3 years really bad, longest PF I can remember was about 3 days when I had a really bad head cold (I loved having that cold!).
My mixture is similar:
Morning:
100mg Topomax
200mg B2
80mg Verapamil
Afternoon
80mg Verapamil
Night
100mg Topomax
200mg B2
80mg Verapamil
Interesting that your Verapamil is all at night. With this mixture my daytime hits have reduced significantly - they come every 2-3 hours like clockwork, but they're not bad, below kip 5, and I can beat them down with thermal biofeedback breathing techniques, red bulls, or O2.
Night time is my killer. 7 PM to 11 PM is purgatory, 11 PM to 2 AM is hell, and O2, triptans, ice, etc. don't do nothin' yet.
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BaseballCoach
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Re: Just got back from Doc
« Reply #28 on: Jan 15th, 2008, 10:00pm » |
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Well I will say in that one aspect we are quite different....the WORST mine have been have been when I've had a cold, lol. I thought it was because it cut off my O2 to my brain even more....probably the 2-3 worst Cluster Attacks I've had were when I was also sick with a cold.
I think the reason the doc prescribed all the verap at night was because he was worried that my bp would be too low??? I know he told to be careful getting out of bed in the am. It stays pretty normal though and I don't feel too bad. Maybe I could try some in the morning if this doesn't work. So far so good though.
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Crappy
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Re: Just got back from Doc
« Reply #29 on: Jan 15th, 2008, 10:42pm » |
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Yeah, colds and flue are usually the worst for me, too. There was just this one 3-4 day period where I had no symptoms but a nose that ran non-stop, constant sinus pressure, and nothing would make it stop. A few hoirs before it hit, my shadows stopped completely, and no ha until the day I woke up without the runny nose. It was odd, and I wish I could bottle that bug and find out why it stoppedmy ch dead, because nothing else does.
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Kevin_M
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Re: Just got back from Doc
« Reply #30 on: Jan 16th, 2008, 4:49am » |
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on Jan 13th, 2008, 11:45am, DennisM1045 wrote:When do you have enough Verapamil in your system to be of theraputic value?
Don't be surprised if you have some breakthrough HAs once you taper down. Let your Dr know so the two of you can work through this transition period. |
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I definitely work closely with the doc. For instance, verapamil at 480mg will suffice for me but there are fluxuating times we go to 600 or 720 for periods to get through tougher times, and decreasing gradually after things get under control for awhile, sometimes eventually tapering back to 360mg for a couple months.
Back when being an episodic, tapering up to 360 was fine in the beginning. The middle cycle worse, requiring a step up and then gradually tapering to 360 again until it was safe to slowly taper off at the end.
If verapamil is effective for you, the level that works can change as the cycle does. It works for me but is effective at different levels as the CH affects me differently. No constant level carries me throughout the year, tapering back when possible after difficult times.
I've not tried topomax but it perhaps might need to be similarly regulated, stay close with your doctor to get results. Regulating a combination of drugs can be more complex to see which is working or what combination works for you.
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BarbaraD
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Re: Just got back from Doc
« Reply #31 on: Jan 16th, 2008, 8:57am » |
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I've taken the topamax since 99 and have found that if you take the WHOLE dose at night before bedtime, you can eliminate most of the side effects (dopey feeling, memory lapses, etc) pretty well. I've seen no difference in the effects it has on daytime hits by taking it this way.
I agree with Kevin on the regulating of the dose of meds. As an old warrior of this disease, (chronic) there are times during the year when I take MORE topamax than at other times.
But over the years I've got my meds down to topamax, trazadone and O2 for the most part. I keep cafergot for the occasional breakthru that Red Bull or coffee won't abort, but don't take a lot of that. Melatonin at night is a must.
Everyone has to find his/her magic cocktail and then hope it continues to work.
Hugs BD
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BaseballCoach
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Re: Just got back from Doc
« Reply #32 on: Jan 17th, 2008, 8:07pm » |
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One other thing that I didn't mention is that I have changed my eating habits during this "miracle period". I have really cut down on the greasy foods. Actually my gf put me on a diet, lol, and refuses to cook anything unhealthy for me. I eat alot of whole wheat stuff, baked foods, and drink alot of water, no carbonated beverages.....Don't know if any of this correlates, but I know it makes me feel alot better.
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