Leaderboard

Not much to add to all the post above. My wife will kind of be on standby in the background. check on my when she knows I am having a cluster just by walking by, if I raise my hand of make any type of movement in her direction she knows I need or want something. She has a idea of things I might want during a cluster and will just go through the list until I give a thumbs up or nod my head. It is very strange for both parties I guess. For me I don't want to disrupt anyone else life with my condition but at the same time I don't want to be alone. My wife does not want to bother me by sitting in a chair looking at me the whole time abut does not want to leave me all alone incase I needed something. It is a tight line we all walk on and you will just need to find a way to compromise and let it all go. Kind of like you said freeness of death goes away with the pain try to let everything associated with the cluster go away with the pain. Do not hold a grudge towards anyone trying to help in regards to how they reacted to your headache, if you didnt like it just explain how to make it better next time. Like Jon mentioned if you can not get that 02 script take up welding and give the 5hr energy drinks a try they work great for me. Best of luck to you and your family,

You need a new doctor.

It is very difficult for the CHer and the spouse/partner to grasp what we go through. Do not expect it! And actually be grateful they don't have this mess. My spouse wanted to be there to know about everyone that I had and try to 'help'. It about caused a parting of ways. For me, there is NOTHING he can do to help, just leave me alone till it is over please. That was the hardest part for him. 'How about I talk to you and you just listen?' Listening jacks up my pain. He was devastated to find out that the best thing he could do was leave me alone. And I finally got my tanks moved to another room so I could treat them in peace. If he hears me get up, he acknowledges it and leaves me alone. If I say I need a day off to treat this, he supports me in that effort. That is the best thing a spouse can do in my book - help you treat this disease. Showing him a man suffering with this solved my problem. He 'assumed' it was because I was a female and not able to take the pain 'like a man'. The videos proved my point and he stopped thinking I was a wimp and offered up all of his support because he now saw my strength. You need to understand that she can't really understand what you are suffering. You need to do everything that you can to get them under control - for yourself and your family. Where is your O2? Are you using it in the best way possible? What are you taking for your CH currently? There are many ways to reduce the pain or actually kill the cycle.Please, allow us to help you find your way back to life. What are you ding for your CH now? ATB!

...there isn't much at CB that isn't golden...the responses you've received above are among the best I've seen and should be in a text book...and I'm an old guy on these forums... ...whatever you need to do to get O2...DO IT!....if ya can't find a doc with the simple smarts enough to look up THE PRIMARY abortive (next to or along with triptans) as recognized in the literature and real world...then you're gonna have to take up a welding hobby.... ...the very first time you successfully abort a hit with OXYGEN, as the pain drains away like fricken' water down a tube.... you WILL cry with joy....and probably curse whoever stood in the way of getting it in the first place. 1982 was my first...I can still get teary remembering.. ...many of us find that an energy drink alone or in combo with the O2 is incredibly effective in aborting or lessening a hit... .....I am concerned with your listed drug cocktail...with the exception of Zomig, which is my abort of last resort and highly treasured...in the unlikely case that one of these "prevents" works you won't know WHICH one, and you'll ride the merry go round forever (especially if your cycle ends on its own anyway). ...pregabalin (Lyrica) has a very low success rate and some crummy side effects...propranolol is an old drug (first drug tried on me nearly 40 yrs ago) that sometimes works for migraineurs and rarely, if ever, for clusterheads......verapamil can be effective (was for me for a while) but SR is extended release with much fewer reports of effectiveness, you want the immediate release, and the sweet spot for most is 480 mg/dy in divided doses, some (my case) go up over 1000 mg to find relief in high cycle...(heart rhythm should be monitored)... ...put the D3 regimen and/or mm in your bag of tricks and the above may be moot.... best jonathan

Thank you all who replied for your concern, comments and suggestions. I cannot say how much this means to me, because I know I am not facing this alone. The commuinty on clusterbusters keeps me sane. You guys are out there. Only you understand. Thank you without end.

My wife shattered her back and I mean blew apart t5, fractured all the spinous processes down her back, so she does know chronic pain. Which is helpful. We have come to a bit of an equilibrium, i'll ask for say essential oils on my temple area or she will ask if I want them, it does next to nothing except maybe the scent is slightly calming, but she feels like she helped and I let her. We both know the truth but it gives her some control or input into "helping" she also did a crapload of research and funny thinking now, Lamaze breathing can help during an attack, something she found. She will also get my o2 ready, grab me a pill or ask, I just have to nod or shake my head, gives her a sense of helping, feeling not so helpless. That is one thing she has conveyed to me, how horrible it is to feel helpless to do anything, some of her fear and frustration stems from that. You have to accept she will never truly understand, she will have to simply believe you. Edit I have found meditation, guided, helps in between to stave off those "omg what is the next going to be" Headspace, on any device is a great app.

mike', I know this wasn't your question, but what are you doing to treat your CH? Maybe if your attacks were more under control it would help your frame of mind at least a little.

Clusters suck and are immutable part of our existence. I fully agree with advice given. There is no way in hell you can ever get anyone to appreciate the pain or come close to understanding unless its a fellow clusterhead. Even then our experience is our own. People think we exaggerate, embellish or plain seek attention. Of course thats not true at all. The bigger issue is anyone who has experienced the pain of childbirth, kidney stones, gout, a broken limb or othe painful event usually only has it once twice or a few times. We get way worse over and over and over. The way I deal is by trying to be my best self and carry on while in cycle as normally as possible. I do my best to not let the beast win. I do tell my staff when I'm in cycle so they understand my asshole self has a reason but I never expect anyone to understand; s\cause they can't. Yo must constantly work to be the best you and avoid self pity at all cost. Ignore the well intended suggestions of the essential oil, ibuprofen, gratuitous "i have that too", Forgive them for theres no way they can do anything but leave you alone

Yup...YESTERDAY!!!

@maskedmarvel the “what if’s” are always the worst. I have come to the realization, if I am in pain and something has helped I’m the past, I will use what I know works best. Many people do a bust once a month or 60 days to prevent future cycles. I haven’t read anyone saying that they triggered a new cycle. I am chronic so I can get about 3 weeks to one month pain free with MM.

Seems like a novel idea. Not really sure what the basis would be. One study showed maybe help in migraines. Looks like there is one study recruiting https://clinicaltrials.gov/ct2/show/NCT00184587 Seems like a reach

Its such a difficult thing, please don't beat yourself up.. I am not married and have no advice but I just wanted to say I feel for you and wish I could help

Hey you’ve come to the right place. Many people on the forum report that their significant others are great about helping them deal with clusters. I have yet to have a bad attack (knock on wood), I have been attacking them head on. I found that alternative methods have helped a lot with the anxiety and dread of this disease. You need to also realize that even though this is so unfair, it’s hard for someone to fully understand a level of pain if they themselves are not going through it. This is a life long affliction and significant others should be prepared to help their loved ones in any way they can. I really hope you find some peace of mind. Kat

If when you are able to travel, I would recommend this doctor, she was part of the champ program here and was my neuro for over a year but she returned to Montreal. She is now at Polyclinique Centre-Ville Montreal. She specializes on headache disorders and has authored several papers Elizabeth Leroux MD, FRCPC