Jump to content
ClusterBusters
JANNIM

Boyfriend has cluster headaches

Recommended Posts

My boyfriend told me he has cluster headaches and has explained how he feels when they occur. I have not witnessed in in the 4 years we have been dating until tonight. It was very scary! He told me previously he has used oxygen and/or some type of epipen. He has neither of those things presently as he hasn't had this happen in several years, is there anything I can do for him to help ease the pain? I tried the pressure point at the base of his skull and an ice pack to his forehead. It seemed to help some. I just don't know if it's best to leave him alone or not? I felt helpless and sad that he was in so much pain. Any input would be great. Thank you.

Share this post


Link to post
Share on other sites

Well, the first things you can do are to help him, push him, whatever it takes, to get oxygen again and, at least for now, to get that "epi pen," which almost certainly was injectable sumatriptan, called Imitrex.  Sometimes, some people with CH don't advocate for themselves as well as they might, and they need help from others.

 

We have about a hundred answers for you, or him, here, for almost any question you/he might have.  I/we could suggest a whole bunch of things here for you/him to read, which would lead to things to do that he probably doesn't know about but that make a big difference for lots and lots of people.  Are you interested in treatment information that could help him?  Can you get him to show up here?

 

In the short run, he should get energy shots (such as 5-Hour Energy) or energy drinks (such as Monster or Red Bull), and drink one at the very first sign of an attack.  That helps lots of people.  Some people find that they get preventive benefits from drinking those drinks in advance of attacks (for many/most people with CH, attacks come at predictable times).  Even with this one topic, we could go on and on.  One prominent person here finds the V-8 Fusion energy drinks work well for her; there are many types and "strengths" of shots and drinks (a little 5-Hour Energy shot is actually stronger in caffeine than a big Red Bull, for example); some people find that a strong cup of coffee works well; some people like their energy shots/drinks icy cold . . . .Like I said, there's a lot of sub-info under a lot of different topics.    If you, or he, want answers or guidance, just ask.

 

As for your specific question, you just need to let him guide you about what helps.  A lot of people with CH -- most, I would say -- don't want anyone around during an attack; it's just another thing they have to worry about.  Some don't mind quiet company.  Some can figure out a way for another person to be helpful.  Some kinds of touch can be helpful to some people, but usually only toward the end of an attack, I think.   In my opinion, you have to let him know that whatever he wants is okay with you, and then respect that.  He might be afraid that he'll hurt your feelings by asking you to stay away or giving you only a limited role, but you have to let him know that it's not about you.  I am a supporter of a loved one with CH.  There is nothing worse for me than to not be able to be with her, or help her, when she is suffering, but it's not about me, and that's the way she prefers it.  Supporters have their own torture to live with in that regard, but it doesn't compare to a CH attack.

 

But like I said first, you can help him most by getting him moving toward getting the medical and non-medical stuff he needs, particularly and most urgently oxygen.  Others might say more about oxygen, but in essence he either needs to get a doctor's prescription for it or set up a system using welding oxygen. He will want to optimize the system in ways we can tell you about.

 

I think you can also help him a lot by getting him to come here, with people who understand.  But if he won't come here and you have to be the intermediary, then please keep asking questions (or just tell us you're interested in a list of key things to read or something), and you'll get information that can make a huge difference for him (and therefore for you). 

  • Like 1

Share this post


Link to post
Share on other sites

Thank you CHFather! You are so kind. He is a welder so getting oxygen is not a problem. I went back into the bedroom after my post and he had gotten over the worst of it. I messaged his neck and around the back if his ears and he said it made him feel better. I will do my best to have him get involved in this group. I think because it has been several years since he has had this type of headache he has let the epipen lapse and has not replenished his oxygen. He mentioned he thought he was going to be sick...dies that iliviate some of the pain? It is very difficult to get him to go to the doctors. I think he is mad that this happens to him if that makes sense to you. I will get some of the v8 drinks you have mentioned as I don't think he would drink the other types of energy drinks. He knows if he told me to leave him alone I wouldn't feel upset by that. I want to do whatever he wants to make him as comfortable as I can. Like I said that was the first time I have witnessed this first hand and I just felt so sad for him. He is such a hard worker and this absolutely debilitated him in a matter of a few minutes!

Share this post


Link to post
Share on other sites

Yes, it makes perfect sense that he is angry, especially if he thought maybe they were gone since it's been such a long time, but just in general because it seems so unfair and even cruel to have them at all.  They're not directly life-threatening, but they can wreck your quality of life pretty quick.

 

Being mad is one thing, but being so mad that you won't act is another.  It can become a form of denial, really.  One basic thing that has given many people a lot of relief is the vitamin D3 regimen.  You can read about that over in the ClusterBuster Files section of this board.  When he's ready, it will help him.  Many people feel that the "epi pen" (the Imitrex) has substantial downsides, even though it does help abort attacks quickly for many people.  There is evidence that it causes rebound headaches that are worse than the ones it treated, and surely there are short- or long-term side effects.  Also, a lot has been learned about oxygen since the last time he used it. You might want to look at this file so that if he sets up a welding-O2-based system, he'll be able to get it working at its best.  https://clusterbusters.org/oxygen-information/

 

Finally (for now, at least), if you go to the ClusterBuster Files section, you will see that this site was established by people who discovered that psychedelic substances -- often taken at low-enough levels that they have no hallucinogenic effects -- are probably the most effective, lowest-side-effect way to end cluster headache cycles, and often to keep them from coming back.  I also think that this site has the most generally knowledgeable (not just about psychedelics), and the most generous-spirited, people you will find.  But you should know of two other places. One is the Facebook group, Cluster Headaches (not Cluster Headache Support Group, although that is another group).  If you or he are more comfortable with Facebook, that might be a place to look.  Very good people there, also. Really, folks with CH are generally exceptionally good, because they know what the suffering is like while the rest of the world generally doesn't. You can talk about anything there, and the "pinned" post at the top of the page is about a psychedelic substance that is legal in many places and has zero "trip" effects, that many people have found relief from. But like I say, it's a very open group that discusses everything CH-related.  And the site www.clusterheadaches.com also has a whole lot of knowledgeable people, generally focused on the many, many pharmaceutical meds that are used to treat CH.   I hope you'll come back to us, because we worry about the people who show up here, but those other places are potentially helpful, too.

Share this post


Link to post
Share on other sites

Jannim, I was a welder until I retired, your boyfriend probably has access to everything he will need for a temporary O2 set up to abort CH until he can get the recommended protocol. I will be glad to walk him through setting it up and how to use it if he wants.

  • Like 2

Share this post


Link to post
Share on other sites

Hi Jannim,

 

You really made a good move by joining in here, and my prediction is that through what you and your CH'er boyfriend learn, his CH experience will be revolutionized and become dramatically more manageable, as it has for countless others.

 

A big reason for my prediction is you just connected with and got the attention of the ultra-smart CHfather who is incredibly knowledgeable about the most practical realities of how to quash CH ASAP, after spending years on end, pretty much every single day, poring over reports from CH'ers and interacting.

 

Lots of other good folk are here too, such as the voonderbar Tucker with his offer to do the O2 walk through.  :)

 

Now let's stop calling the imitrex injector an epi-pen ha ha.  :D

 

Our pal Hipshot was featured in a National Geographic segment on CH that is extremely pertinent. Viewing it has provided a shock to the system and put CH'ers the world over on the fast path back to pain-free status (with an especially high rate of success for episodic CH'ers, like your boyfriend).

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×