Just need to talk to…

[erick.peck396]

I don’t know if I’m using this forum right, and I feel real weird being like, “hey strangers, someone please talk to me…” but … I don’t know what else to do.

i used to get terrible headaches as a kid, maybe a couple times a week for awhile, but then they’d disappear for awhile and come back after a couple years. Now I’m in my 40’s and am learning that these are cluster headaches. This “cycle,” however, is BRUTAL. Instead of 1-2 a week, I’m getting 3-7 a DAY. The Dr has me on SIX different meds. The Rizatriptan works great, but I can only use it a few times a day (and supposed to only use it a couple days a week… but I’ve been using it 7 days a week). I’ve been to the ER three times this week.

is this just life now (the Dr can’t tell me)? Since this cycle is so different, did I go chronic (the Dr can’t tell me)? What can I do (the Dr just keeps throwing more drugs at me)?! 

Sorry if this isn’t the right forum - I’m mostly just purging… but it would be great to talk to someone who knows what this is like.

Erick

[Craigo]

Hey Erick. It's not strange at all - I get it, we get it - I actually travelled from New Zealand to Dallas this September just to meet other cluster headache patients. We hear you, we see you. Welcome and I am sorry that you find yourself in the midst of a particularly tough cycle. 1-2 a week would be nice, 3-7 a day is more in tune with my cycles which run annually Nov-Mar.

I would say this isn't your life now and there are options available to you and you are in the right place to learn about those.

There are 3 types of therapies for CH, abortive, bridging and preventative.

For the abortive I hear your thoughts re triptans, they come with side effects, you can only use so many within a 24 period and they can cause rebound attacks. I would recommend investigating high flow oxygen via a non-rebreathable mask like the cluster o2 kit or looking into a DMT vape pen (there is a recent thread on this from one of our active members maybe worth checking out). Once you find you are able to abort effectively and quickly you'll hopefully find you get a bit less dread and anxiety for the next attack.

Bridging therapies are used temporarily to offer relief whilst you wait for a preventative therapy to start working, sometimes a short tapered course of prednisone is enough to break a cycle or buy you 10-14 days pain free bliss and hopefully when you taper off, a preventative medication has started to work.

You haven't mentioned what preventative meds have tried, you could share that info - perhaps we could offer our thoughts. I would just leave you with my experience being that I am now in the 10th season of successfully preventing my CH using the patient led treatment protocol the Vitamin D3 Anti-Inflammatory Regimen for Cluster Headache. If you immediately thought yeah, right - tell me another one then I'd encourage you to put that preconception to the side and just learn a little more to see if it resonates with you. It has been so effective for me I consider myself lucky but I am one of thousands since circa 2011 that has seen similar benefit. I also like that it is natural, safe (when followed as documented), accessible and affordable - I buy the supplements for less than $1 USD per day. www.vitamindregimen.com or I am sure you will find the protocol here on this site as well.

There is the option of busting and I am sure others would be able to offer solid advice over and above the resources available on this amazing website.

Importantly hang in there man, I hope pain free days are around the corner for you - this will pass. PFW, Craig.

[CHfather]

For an overall guide, you might look here: Basic non-busting information - ClusterBuster Files - ClusterBusters.  At the end of that file is the same concise description of busting that appears under the button "New Users -- Please Read Here First" near the top of each page. ("Busting" -- using psychedelic substances to treat CH -- is the reason this site was created, but we cover everything you might need to know if busting doesn't appeal to you.)

This is most definitely NOT how your life will be!!  CH is manageable.  Craigo has told you many of the ways (all discussed at the above link).

Your overuse of the rizatriptan is understandable, but it is also almost certainly worsening your attacks and extending your cycle.  OXYGEN is a necessity.  (And rizatriptan is probably fifth or sixth among triptans in effectiveness for CH.  I'm gonna say that by throwing meds at it and (as far as we can see from what you've said) not prescribing what works best, your doctor probably isn't great.  A headache center is best if you can get to one (but many people here only see doctors now for filling the prescriptions they know they need, such as oxygen, and getting tests for the D3 regimen).

Did you get relief at the ER?  If so, what were you given there?

A lot of people worry that they have become chronic.  It's at least 90% likely that you have not. 

You are going to be okay. You might get the kind of fabulous preventive effects that Craigo and others (even people with chronic CH) have gotten, so that you are actually pain-free for long periods -- years, even -- but even if you aren't that successful, you will know how to manage your cycles and your attacks so they do not define your life.   

 

[charles87sf]

Hey Erick,

Welcome to the family... and we get it! Just know that you're not alone here and there are ALOT of people here that can help. Many, myself included, hop on here regularly during cycles just to talk, vent, express anger, ask for guidance and ... well, just about anything else you can think of. My worst cycle i've ever had was back in 2018 and I was averaging 6-7 a day. It was brutal!! ... Cycles have been easier since then, but they pain is still debilitating. I'm in a current cycle right now having 2-3 a day currently. I take triptans at night. I was also taking Emgality until my insurance company stopped covering them. Ask your doc about Emgality. It has helped me previously. it seems to lessen the frequency of attacks... and I was JUST recently prescribed oxygen and I received my first tanks last night... i'm experiencing cluster "rebounding" now. I have a forum that I just posted today asking for more info and advice. 

Overall, we're here for you brother! Reach out anytime if you just want to BS.