need your help with verapamil usage

[Jimmy Martinez]

Hi friends, I hope this is the right place to post this question. I am in the midst of a cycle right now. My doctor told me that Verapamil is mostly used to help prevent daytime attacks. 85% of my attacks occur late at night about an hour or 2 after I fall asleep, so like 11pm or 12am, I get hit. With this said, should I take the verapamil in the early evening (one 80MG pill) in the hopes of preventing the night time attacks or should I just take 3 pills a day with the hopes that the verapamil with be in my system strong enough to prevent an attack whether it happens at night, day, or whenever?

I really don't like taking verapamil because it makes me feel lousy but I would rather take it and have a good chance of preventing a nighttime CH attack.

I'm also doing the vitamin D regimen.

Last Sunday I busted but I did it with maxalt in my system so I don't know if it was entirely effective.

I'm working on getting oxygen and should have it on Monday.

I also have maxalt and naratriptan which I use to kill a painful attack when nothing else (like advil) works.

Verapamil in the past has helped me manage a cycle. I wish it could help shorten a cycle.

I sincerely appreciate all of the help and support and kindness I have received from everyone on this forum.

I will do my best to help people as i learn more about how deal with this condition.  if there is anyone if los angeles, please let me know.

Thank you,

Jimmy

[BoscoPiko]

Hi Jimmy,

The 240 a day is most likely to low to help much. I am on 480 and take two in the am and two in the pm but I usually have day time attacks. Many on here have mentioned that the rapid release is more effective than the extended. If you are on the ER you may want to talk to your doctor about swapping to RR as it seems like that may be more effective taken in the evening to keep the night attacks at bay. 

[Jimmy Martinez]

Thank you BoscoPiko for your help and great info. My prayer is that you never have a CH attack again and that is disappears forever. 

[spiny]

Hey Jimmy! 

I am nocturnal too. My verap worked best if I took one at noon, then bedtime (9-10pm), and the last one in the, middle of the night when I woke up.

I have NO idea why your doctor said it is for daytime attacks only! If you are nocturnal, you will get most of not all of your hits at night. That does not preclude using Verap at all. 

Since you are to take them three times a day, you are already on the Short Acting Verap that is best for us. So, no need to change your script.

Verap, at the 240 you are taking, worked for me. It killed the first cycle I was having when I started it with a Pred Taper added at the beginning of my treatment. It prevented the next cycle, Then my dentist told me to stop taking it due to a gum issue caused by the medication. I did and a cycle started that fall that was not stopped, even when I went back on the Verap. Due to low blood pressure, I could not take a higher dose, so I just stopped taking it altogether. 

Now that you have your O2, do you have a good mask? Non-rebreather? That is the one you need and no concentrator either! When you head to the O2, are you hitting some caffeine? Any kind will help a lot! Iced coffee, Red Bull, Energy Shot, V8 Energy. Most of us are not kept up sucking it down at 2am either. I would not down a full Red Bull personally, but some do. The idea is to down the caffeine quickly and huff your oxygen till the hit has passed. Then stay on the O2 at a lower, comfortable flow for another 5 minutes or more so the hit does not come right back. 

And as a nocturnal, I slept in a recliner to get any sleep at all. Just laid it back partway, kept my head above my heart and piled pillows around for support. It made sure that I woke early in the hit and the treatment worked faster and better.

Hope this helps.

 

[Jimmy Martinez]

Wow thank you so much Spiny. I am grateful to you and all of the information/guidance you have shared with me. I have a terrible mask. I have a to get the non-rebreather. What is a "PRED TAPER"? is that prednisone? I wish one day I could talk to you on the phone because I understand easier verbally instead of reading text. Right now I am still in my cycle but it is far less frequent and far less severe. I've had like 3 nights straight of no attacks but then I get some "pings" of pain like an attack is coming and then I hit the oxygen and take 2 advil and I'm okay. I think the mushrooms helped me decrease the power of the cycle. I did the mushrooms about 2 and a half weeks ago. My hope is to learn more and more hope to not only manage a cycle but ultimately to prevent a cycle. If you are ever up for a phone call, just a few minutes, I'd love to talk to you since you have lots of experience. But mostly, I wanted to let you know I am praying for you, me, and all of the people who are dealing with this insidious affliction. I hope right now you are pain free and I hope and pray that you never even get a mild headache ever again in your whole life. Like gone forever and that you can be one of the lucky one that are 100% rid of any type of headache. I pray every day and I pray for you, CH Father's daughter, and all of us in this forum and around the world who battle this demon. Thank you so much for helping me fight and hopefully win against this enemy. I feel like the answer or cure is out there and it's fairly simple. I think all of us get them for different reasons and if we can just prep our systems in advance of when we know a cycle is coming, we can avoid the cycle entirely. Take good care and please tell me how you are doing. Thank you, Jimmy 

[OldArn]

On 6/29/2023 at 5:09 PM, Jimmy Martinez said:

What is a "PRED TAPER"? is that prednisone? 

I haven't given advice here, just received it... so take this answer with a grain of salt! My neurologist recently ordered prednisone for me and the instructions on the scrip bottle were to take 5 for 5 days, 4 for 5 days, 3 for 5 days, 2 for 5 days, 1 for 5 days, and finally .5  for the remainder. I think that is the taper.

Learning here requires learning a new language, much of it cryptic. Warning: for me, prednisone has bad side-effects like mood swings and generally being a pain in the ass to those around you.

[spiny]

Yes, Pred is Prednisone or Prednisolone. 

There are many ways that physicians 'prescribe' a taper. There is a Pred Taper Pack, that you take for a week. This is standard treatment for many issues that need Pred to overcome inflammation. 

Your doctor might give you a two week taper or a month. But it is a drug that you want to use with caution and only when needed. It will buy you pain free time to regroup if needed at times. Just be judicious with the use of it. 

Thanks for the very kind words. 

[ColinCandles]

On 6/10/2023 at 8:19 PM, Jimmy Martinez said:

Hi friends, I hope this is the right place to post this question. I am in the midst of a cycle right now. My doctor told me that Verapamil is mostly used to help prevent daytime attacks. 85% of my attacks occur late at night about an hour or 2 after I fall asleep, so like 11pm or 12am, I get hit. With this said, should I take the verapamil in the early evening (one 80MG pill) in the hopes of preventing the night time attacks or should I just take 3 pills a day with the hopes that the verapamil with be in my system strong enough to prevent an attack whether it happens at night, day, or whenever?

I really don't like taking verapamil because it makes me feel lousy but I would rather take it and have a good chance of preventing a nighttime CH attack.

I'm also doing the vitamin D regimen.

Last Sunday I busted but I did it with maxalt in my system so I don't know if it was entirely effective.

I'm working on getting oxygen and should have it on Monday.

I also have maxalt and naratriptan which I use to kill a painful attack when nothing else (like advil) works.

Verapamil in the past has helped me manage a cycle. I wish it could help shorten a cycle.

I sincerely appreciate all of the help and support and kindness I have received from everyone on this forum.

I will do my best to help people as i learn more about how deal with this condition.  if there is anyone if los angeles, please let me know.

Thank you,

Jimmy

Hi Jimmy , I've just had relief with 240mg verapamil at 7am and 7pm but also indomethacin 100mg twice daily at same time. Verapamil has reduced HR to 38 resting 80 Max so a bit of a chore doing much but im booked for Occipital Nerve block on 14th August 23 so looking to reduce off these meds then.  Tried both these meds separately over the years with no effect but together im on day 3 with no attacks ( I was having around 8 full blown attacks per day)