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Showing content with the highest reputation on 02/10/2022 in Posts

  1. Empire', Sorry you are experiencing all this. Yep to what all the other folks said -- unpredictable, often shifting, who knows what effects meds have. Damned thing will fool you every time. Over many years, some people have identified what seem like consistent patterns in how their cycles end. For example, my daughter's typically end with a few days/nights of very severe attacks, and then suddenly they're gone. And sometimes that's not the case and they just taper down, and sometimes she has a few days of severe attacks and thinks it's ending but it isn't, which is a big bummer. It's good to be attentive to these things (you can't really help but be), but trying to figure it out is a risky game if it gets your hopes up. The most important thing is to have your treatments in place -- D3 levels up; O2 with all the proper system components; nasal or injectable triptan for breakthroughs; busting if that's something you want to do. . . . Then you're better able to handle the Ali shuffle and the rope-a-dope when they come your way. Have you tried drinking down an energy shot (such as 5-Hour Energy) or an energy drink (such as Red Bull) or even a strong cup of coffee or some other source of caffeine (spiny likes V8 Energy things) at the first sign of an attack? Generally, these are used along with oxygen, but can make a difference in severity or duration on their own. (And they don't keep most people up at night.) Incidentally, although your verap dose is probably too low to make a difference, it is the general experience (or belief) here that the instant release is more effective than extended release (ER). If you're only taking it once a day, you almost certainly have the ER.
    2 points
  2. I found that taking the verap at the times I was going to get hit worked better for me. As a nocturnal, I took mine afternoon, evening and midnight. It helped better that way. I do not understand how a medico would prescribe once a day verap????? Extended Release is twice a day and Short is three! IE: You are taking it in the am when you don't normally get hit, correct?
    1 point
  3. A few here, including me, experienced a drastic shift in ch behavior coming off topirimate aka topomax.
    1 point
  4. I would second this, when I was on it, it was at doses that concerned the pharmacist, requiring heart checks every couple weeks. They did increase it over time, so not a massive dose all at once. The general thinking or use is generally prednisone taper while the verapimal gets onboarded iirc. As to changes, mine tend to in essence cycle forward through a month. like getting hits from 6pm to 6am then have them ease off, then about a week later it is like from noon to midnight. With some outliers like keeping me up for 24 plus hours, they will rotate forward like that in a fairly predictable pattern.
    1 point
  5. It's so different for each person but for me it ramps up before it tapers down. You may be at the beginning of stage two of three etc.
    1 point
  6. They switch all over the place time wise. Usually it's a couple weeks of right on time three times a day starting at 9pm then they go to every time you fall asleep all night then switch to random day hits. Early on in my cluster career they were like clockwork for the most part but it just keeps changing. Oh, and I have never used pharma for CH but I was trying to bust so many that was a factor.
    1 point
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