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        Supporter's Corner >> Supporter's Corner >> Newly diagnosed--need spouse advice
        
(Message started by: Darsynia on Sep 1^st, 2005, 5:19am)

Title: Newly diagnosed--need spouse advice
Post by Darsynia on Sep 1^st, 2005, 5:19am

Hiya.

I...I gotta admit. I'm scared out of my MIND, here. When I was diagnosed two weeks ago, my doctor told me that these regularly come in phases no longer than three months. To hear that they last a lifetime is nearly putting me over the edge. I've only been experiencing these for roughly three months, and the only thing keeping me going so far is the knowledge that they would end soon...
I seem to be fairly lucky, though--tylenol is working (either that, or I *think* it works, and they go away in a half hour, a thought which just occurred to me and is making me MORE scared).

The real reason I am posting isn't about me, it's about my husband. I love him dearly, but he is unsympathetic at the best of times. He just...doesn't understand intense emotion or pain, really--and is only tolerant of such things when they come in small doses. In short, he is not very well suited to be the husband of a Clusterhead. I don't mean to paint him as cruel, it's more like he's so engrossed in the activities of the mind, that those of the body are confusing at best and at worst beneath his concern.

I'm not sure what to do.

Before my diagnosis, his reaction when I got an attack was usually 'DUDE! Go call a doctor!!' (I have a bad short term memory, and since my attacks come at 6-7PM I'd literally forget to call until the next day, and they close at 4:30) After diagnosis, it's usually 'what's wrong?' or something similar. Even after he knows I'm in the throes of an attack, he'll ask me why I'm making noise or pacing. He's been known to say 'do you have to keep saying ouch?' and the apt descriptions of the pain on websites I've sent him to don't appear to be making a dent. I want to throw him against the wall and shake him and scream in his face YOU HAVE NO FREAKING IDEA HOW PAINFUL THIS IS, but I know that wouldn't help. I used to think I was diplomatic, I used to think I was good at explaining (and I probably still am), but these talents fail me when it comes to having the patience to find the right way to make the man I love understand that this is NOT a trifle, this is excruciating, and making light of it and wishing I could stay silent if I get an attack in the car or someplace similar is not helpful.

Sorry for the rant, but I was so depressed about this subject (still am, kind of), and then I found this website...

Title: Re: Newly diagnosed--need spouse advice
Post by minnie on Sep 14^th, 2005, 9:36am

Hi sorry your going through this but I'm glad you found this place.first a couple of questions.What meds are you taking besides tylenol because it sounds like your just riding out the pain.Tylenol doesn't really work for clusters.first theres preventative just some examples verapamil and lithium are just starters try getting into a good neurologists to discuss your options.second abortives one of the safest with a great track record is oxygen (look at the links to the left it has to be a certains mask and amount) Triptans can be used by some people once again good neuro is important ,meletonin to help you sleep if attacks are nighttime many more to check into.check meds board and ask questions I am a supporter not sufferer and the above is just to give you an idea sorry if I'm telling you something you already know.
Now about your supporter sorry that you aren't getting the support you need.Its not the same but please remember to come here Rant,scream cry whatever someones usually here 24/7.Also theres a chat site usually theres someone there at night if no ones there sign in and wait people will come http://www.clusterheads.com/cgi-bin/gtchat/chat.pl
I can only speak for myself but it is really hard to see someone you love in so much pain and not much you can do.the feeling of helplessness is a different kind of pain to a supporter.
Some suggestions you might want to try.sit down when your not in pain and maybe give him some ideas on how you need him to help you.some examples are get you a ice pack,coffee your meds or whatever you finds brings some relief during a hit.some people want to be alone when getting hit some don't.have him go to the doctors with you .Show him the kip scale from this sight (made up by a clusterhead) so he sees that a regular pain scale doen't come close to what your feeling.I guess if all else fail grab him by his most sensitive spots (you know ;) ) and squeeze till his eyes poke out then show him the kip scale and say the pain your feelings only about a 5.sorry last part is jut to break the ice I'm just joking (kinda ;) )sorry I can't help more if you need to talk IM me or come here I got two ears for listening,a big shoulder to cry on and a million stupid jokes to pretend to laugh at.
Minnie
p.s. forgot an important thing invite him to come onto this site.The general board and here at the supporters corner .we'll do what we can for both of you.Let me know before he come here so I can get rid of the sensitive spot squeezing advice ;) also check the meet and greet sections .meeting a clusterhead or supporter is an amazing way to remember your not alone.there's also the O.U.C.H. site lots of info there.

Title: Re: Newly diagnosed--need spouse advice
Post by seasonalboomer on Sep 14^th, 2005, 10:00am

Hey Dars,

Welcome to the site, sorry you have to find us.

First AND MOST IMPORTANTLY, don't be scared. Many of us have found ways to manage our clusterheadaches and maintain a life outside of cluster-dom, and keep spouses. Keeping the element of fear at bay is a first step.

I'm hopeful that after your doctor told you about Clusterheadache he/she also offered something other than Tylenol (no matter how big the number after Tylenol). There are medications that many find quite effective, that git-er-done faster than 30 minutes. Hopefully your doc in passing mentioned Imitrex as an abortive, and if the doc was really on the ball, mentioned Oxygen. If your doc didn't even bring up either of these, quickly go to the links regarding treatments on the site. Pull them up and print them and immediately go to your doctor. You should, at a minimum, have access to these great tools. As a fellow sufferer, there are many of us that would like to put together a bone-breaking crew for doctors that fail to help their patients as they should with all the right tools.

Once you begin to actively manage your CH's you can then begin to focus on how to turn that supporter of yours around. Like most men (me included) we can be a little dense in the empathy department. Yours might be a tough nut but I assume he's young. I got marginally better as I got older with my wife and the circle of awareness was pushed out beyond the 1-2 feet I worried about in my 20's. My wife didn't start out as very empathetic either, but as I've carefully shared, not only in the middle of a CH but when out of cycle, and shared how these things "affect" me emotionally, physically and mentally, she's come around and is pretty good now. It'll probably be your job to bring him around though.

I'm rambling. But as I said. don't be scared. Hopefully your cycle will end soon and you can celebrate that and enjoy.

Scott