Headaches changing time.

[EmpiresBurn]

Hey everyone,

It seems that this past week my headaches have gone from nightly to now nightly and afternoon. I have not changed anything with my routine other than started taking Verapamil about 7 days ago. 120mg every morning, once a day. Any reason why I'm now getting more headaches than previous? For the month of January it was just a nightly occurrence now between 130pm - 430pm I'm getting an additional one. Although slightly less painful than the nighttime ones. 

Is this due to the Verapamil? Does it mean anything significant?

[xBoss]

My cluster cycles vary all over the place with themes. couple weeks this, couple weeks that etc. 

[EmpiresBurn]

18 minutes ago, xBoss said:

My cluster cycles vary all over the place with themes. couple weeks this, couple weeks that etc. 

When they switch do they usually continue at the original time as well or switch from one time to the other?

[Bejeeber]

2 hours ago, EmpiresBurn said:

Is this due to the Verapamil? Does it mean anything significant?

I don't have an informed opinion on whether the verapamil could be a factor, but I have noticed that sudden changes to what had been predictable timing patterns, including time of day, are common.

[xBoss]

1 hour ago, EmpiresBurn said:

When they switch do they usually continue at the original time as well or switch from one time to the other?

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.

Edited February 10, 2022 by xBoss

[EmpiresBurn]

31 minutes ago, xBoss said:

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.

So this probably isn't a sign of a cycle coming to an end?

[xBoss]

7 minutes ago, EmpiresBurn said:

So this probably isn't a sign of a cycle coming to an end?

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. 

[CHfather]

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.

Edited February 10, 2022 by CHfather

[EmpiresBurn]

8 hours ago, CHfather said:

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.

Yea my Verapamil is definitely ER 120mg once a day. Supposed to be taking place of my Topomax as a preventative. It's hard to say if it's doing anything as right around the time I started my CH also switched up the timing and duration.

[devonrex]

8 hours ago, CHfather said:

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.

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.

[devonrex]

5 minutes ago, EmpiresBurn said:

Supposed to be taking place of my Topomax as a preventative.

A few here, including me, experienced a drastic shift in ch behavior coming off topirimate aka topomax.

[spiny]

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? 

[EmpiresBurn]

4 hours ago, devonrex said:

A few here, including me, experienced a drastic shift in ch behavior coming off topirimate aka topomax.

Really? It's been about a week off of it and switched to Verapamil. Maybe that's something to do with it. Was it temporary?

[EmpiresBurn]

4 hours ago, spiny said:

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? 

Correct. 

 

My attacks have almost always been middle of the night. But have recently turned to middle of the day as well. 

It says to take one 120mg per day by mouth. I guess I could take it whenever I wanted but I was just told first thing in the morning is good. 

[BoscoPiko]

10 hours ago, EmpiresBurn said:

Yea my Verapamil is definitely ER 120mg once a day

Hi there EmpiresBurn,

I am also on the ER and  240 a day is what my neuro started me on (one in the am and one in the pm)  120 seems very low. The verapamil never seemed like it was helping until I was around 480 a day. At one point I was up to 600 a day but was having heart palpitations at that dose. I would talk to your PCP and see what they think about a little increase also seems like since you are a nigh hitter you may want to take in the later afternoon. Hope your headbangers end soon! 

[EmpiresBurn]

2 hours ago, BoscoPiko said:

Hi there EmpiresBurn,

I am also on the ER and  240 a day is what my neuro started me on (one in the am and one in the pm)  120 seems very low. The verapamil never seemed like it was helping until I was around 480 a day. At one point I was up to 600 a day but was having heart palpitations at that dose. I would talk to your PCP and see what they think about a little increase also seems like since you are a nigh hitter you may want to take in the later afternoon. Hope your headbangers end soon! 

Thank you! I will look at taking it later in the day. Also will look to increase dose, I just don't want any Heart issues

[BoscoPiko]

I understand.  Im about 5"6 and a buck 30thy you will be ok..

[Shaun brearley]

 

8 hours ago, EmpiresBurn said:

Thank you! I will look at taking it later in the day. Also will look to increase dose, I just don't want any Heart issues

You should be having ECG every time you increase the varp ,just to make sure no heart problems buddy . I could only go up to 320mg a day then I started to get heart block , so came off it and was put on topiramate instead 

[EmpiresBurn]

1 hour ago, Shaun brearley said:

 

You should be having ECG every time you increase the varp ,just to make sure no heart problems buddy . I could only go up to 320mg a day then I started to get heart block , so came off it and was put on topiramate instead 

Is Verapamil that bad for your heart? I'm 5'8" 175 and relatively fit. 

[Shaun brearley]

41 minutes ago, EmpiresBurn said:

Is Verapamil that bad for your heart? I'm 5'8" 175 and relatively fit. 

Yes it can be , That's why you should be having an ECG every time you increase the dose , but your doctor should know that !!!!! . It's a blood pressure drug 

[BoscoPiko]

5 hours ago, Shaun brearley said:

ECG every time you increase the dose

This is true and I had to have one with each increase. Some doctors wont require it so you may have to ask for one.