Thank you

[Newbie13]

Hello Cluster world, I'm new here. Currently eperiencing my first cycle (28yo female), misdiagnosed for 4 weeks as sinus headache, getting into a neurologist before December due to a cancellation. I've had migraines for 15 years but wow... This is a whole new level. I thought I was losing my mind, the pain didn't seem real or the patterns logical... Anyways, I wanted to say thank you all for sharing your stories and insights. I've been digging into the forum and I feel so encouraged by this community. I'm terrified and processing this new reality, but it helps to read about everyone's experiences, and know I'm not alone. Thank you all!

[CHfather]

Newbie13, from your reading you probably understand that the #1 thing you want from your neurologist is oxygen -- and you probably also have read about what a challenge it can sometimes (or often) be to get that prescription.  So you might do all you can before the appointment to make sure that will happen.  To me that would mean at least printing out the major research showing the effectiveness of oxygen so you can bring it with you, maybe calling the office to ask whether this doctor prescribes O2 for CH, and getting yourself psychologically ready to advocate for O2.  Maybe have someone come with you.

You can get a sense of the landscape of pharma and non-pharma options from this post: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

[Newbie13]

Thank you @CHFather, oxygen was the first thing my neurologist recommended, and I've got an order in process. Thankfully she seems to be right in line with what I've seen recommended on here - she even mentioned the vitamin D3 regimine once I get my blood test results. 

[spiny]

While sorry that you have CH, we are very glad that you found us. 

Read and ask as many questions as you can or care to. 

By reading the Forum, I think you have some good background info for your Neuro visit. Like Verap is the most often given daily med for CH. It lowers blood pressure. And you want the short acting, NOT extended release formula. It just works better. And you will want to keep an eye on your BP if you increase the dose. EKG's are often done with an increase in dose. Need to keep an eye on cardiac function.

Often you will be given a Prednisone Taper Pack to bring relief while the Verapamil gets into your system. While a miracle drug in terms of pain relief for most, it cannot be taken long term due to joint damage. A short burst here and there is about all that your can body handle without risking damaged hips.

Most other drugs are considered second tier. Not the best to use and often 'added on' by some neuros. If you are offered Imitrex, you want the injections. Some get by with nasal spray, but it does not work as fast as the injection. Pills are about worthless due to the time it takes for them to work.

Take the O2 information with you too! Not all are up to date on how to use it and when to use it. They normally do not tell you how to use it, but for that you have us.   CHF is the O2 pro when it comes to covering the subject! 

And read up on the D3 Regimen. It is awesome for many sufferers. Lowers pain and slows ramp up to allow a better abort if you hit your O2. It is all good for you vitamins. A blood test for a baseline of your D levels and such is stressed when you first begin the regimen. Some start the vitamins and get tested a bit later due to doctors and such. We tend to have low D levels when in cycle or even year round for some. This regimen has really helped a lot of CHers. Some go completely pain free with that alone! 

ATB!!

 

Your reply to CHF just popped! Sounds like you have your ducks lining up nicely!!!  

[Newbie13]

7 minutes ago, spiny said:

While sorry that you have CH, we are very glad that you found us. 

Read and ask as many questions as you can or care to. 

By reading the Forum, I think you have some good background info for your Neuro visit. Like Verap is the most often given daily med for CH. It lowers blood pressure. And you want the short acting, NOT extended release formula. It just works better. And you will want to keep an eye on your BP if you increase the dose. EKG's are often done with an increase in dose. Need to keep an eye on cardiac function.

Often you will be given a Prednisone Taper Pack to bring relief while the Verapamil gets into your system. While a miracle drug in terms of pain relief for most, it cannot be taken long term due to joint damage. A short burst here and there is about all that your can body handle without risking damaged hips.

Most other drugs are considered second tier. Not the best to use and often 'added on' by some neuros. If you are offered Imitrex, you want the injections. Some get by with nasal spray, but it does not work as fast as the injection. Pills are about worthless due to the time it takes for them to work.

Take the O2 information with you too! Not all are up to date on how to use it and when to use it. They normally do not tell you how to use it, but for that you have us.   CHF is the O2 pro when it comes to covering the subject! 

And read up on the D3 Regimen. It is awesome for many sufferers. Lowers pain and slows ramp up to allow a better abort if you hit your O2. It is all good for you vitamins. A blood test for a baseline of your D levels and such is stressed when you first begin the regimen. Some start the vitamins and get tested a bit later due to doctors and such. We tend to have low D levels when in cycle or even year round for some. This regimen has really helped a lot of CHers. Some go completely pain free with that alone! 

ATB!!

 

Your reply to CHF just popped! Sounds like you have your ducks lining up nicely!!!  

@spiny - thank you, really appreciate this info. The more I hear/read, the more faith I have in my neuro (which is so encouraging). On Prednisone and pain is gone, beginning to taper down yesterday and noticed some shadow pain .. hoping the verap will do it's job as I decrease the pred. 

 

Question - how do I know if a cycle is ending? Because of the sinus diagnosis, I was on Prednisone twice for a few days at a time, and pain came back with a vengeance after the last dose each time. I'm nervous that the same thing will happen with this round.

[CHfather]

4 minutes ago, Newbie13 said:

Question - how do I know if a cycle is ending? Because of the sinus diagnosis, I was on Prednisone twice for a few days at a time, and pain came back with a vengeance after the last dose each time. I'm nervous that the same thing will happen with this round.

Cycles seem to end differently for everyone.  For some, there's an increase in severity/duration before a cycle ends, for others it's a more gradual tapering.  Unfortunately, it is likely that your attacks will return after the pred taper, unless your cycle has actually ended. Sometimes it does seem that the pred will end a cycle, but that seems rare (and there's no way to know in most cases whether it was ending in any event).  I would suggest starting on the D3 regimen as soon as possible. There is about an 80% likelihood that your D is too low just by normal medical standards, and a nearly 100% likelihood that it's too low to treat CH.

Wonderful that you have such a capable and caring neuro!  

[spiny]

That is the 64K question. We are the same, but different too. For me, I wake up one morning and realize I had only three hits during the night, not the standard four. Then, one morning, I wake and realize I did not get hit at all. I do have some issues with continuing to wake at my standard 'hit' times for a week or more. But, they are painless awakenings.

What dose of Verap are you taking now? Two or three times a day? Chers can go pretty high on that stuff. Your BP may be a limiting factor. 

Yes, that last day or two of Pred often finds the beast rising again. It sucks! Hopefully your Verap kicks in soon. 

[Newbie13]

42 minutes ago, spiny said:

What dose of Verap are you taking now? Two or three times a day? Chers can go pretty high on that stuff. Your BP may be a limiting factor. 

Yes, that last day or two of Pred often finds the beast rising again. It sucks! Hopefully your Verap kicks in soon. 

40mg 3x per day for the next few days, then up to 80mg 3x for 3 months assuming I can tolerate it. I have low BP generally so keeping a close eye on it.

I had a painless awakening this morning - it was such a weird feeling. Trying to describe this to loved ones is so strange. My heart goes out to everyone who has dealt with this for years... holy crap it's bizarre. 

[MoxieGirl]

Hi Newbie13,

Welcome to the forum, really sorry you have to be here. But there are some amazing and truly fantastic people here, as you're already learning, as well as bucket loads of hope and advice. 

Do you drink alcohol? For a lot of people it triggers a cluster attack (not everyone though). But, I do know some people who'll have a drink a week or so after they think their cycle is ended to test it. Also a good way to know if it's starting. 

I have chronic daily headaches, migraines and chronic clusters (although my clusters are pretty trivial lately). I recently found out I'm allergic to cats, so sent my cat to live with my son. My headaches and migraines had since dropped by 75%. I went from having 12 a week to 3. And yes, making it through the night and waking up without a migraine is strange, but refreshingly so.

I always say, life is what happens between the pain. 

In regards to the pain level in a cluster vs migraine, I think that if a headache were the Moon, then the pain of a migraine would be the Earth and a Cluster the Sun. I mean, none of them are fun by any standard, but a cluster will always dwarf the others.

Mox

[Newbie13]

8 minutes ago, MoxieGirl said:

 

Do you drink alcohol? For a lot of people it triggers a cluster attack (not everyone though). But, I do know some people who'll have a drink a week or so after they think their cycle is ended to test it. Also a good way to know if it's starting. 

 

Hi @MoxieGirl - thank you for the welcome! I appreciate you sharing your experience, I completely relate to the sun/moon analogy and will try it out!

I typically drink 5-6 drinks a week (usually weekends) but stopped once I read about it on this forum. Interesting that it can be used to gauge whether the cycle has ended - I'll try that out once I get further along. Right now I'm scared to touch the stuff at the moment, as I'm sure others can relate... 

I'm so encouraged by this forum, and happy to know that there is a community that gets it... Though I hate that we have to 'get it' at all. 

[MoxieGirl]

Hi,

Alcohol isn't a trigger for everyone. Doesn't affect my clusters at all, and 9 or so shots of vodka will abort a migraine. So that's handy for when the pills don't work.

This forum very much saved my life when my clusters were at their worst. I was literally putting a date in my calendar for when I was going to exit planet Earth. Then came here, created an account and it turned my life around. There be good people here.

xx Mox