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        Supporter's Corner >> Supporter's Corner >> Is it true?
        
(Message started by: desertsunrise on Mar 17^th, 2006, 3:05pm)

Title: Is it true?
Post by desertsunrise on Mar 17^th, 2006, 3:05pm

Forgive me if am not doing this in the right place but I am not the best when it comes to computers and the internet.
My son told me awhile back that he got terrible headaches called clusters. I have migraines as my mother before me so I know something about head pain. I was visiting him not to long ago and witnessed him having one for the first time and it was nothing like what I know migraines to be. I couldn't believe the agony in his eyes, as you mothers know there isn't anyway your child can hide somthing like that from you. I have read quite a bit on this website to try to get an understanding of what he is going through but some of the descriptions are almost unbelievable. Can someone describe them to me as compared to a migraine so I can understand? Is it true that it hurts worse than childbirth? I read the page titled- Another kind of pain- is this what his wife faces everyday?
Lois

Title: Re: Is it true?
Post by Cathi04 on Mar 17^th, 2006, 9:36pm

Sunrise,
Yes, it is true. You experienced your son getting hit. And, yes, it is true that the pain of a hit is far greater than that of natural childbirth.
Not being sure if your son is chronic or episodic, I can't tell you what his wife see every day, but, what I can tell you is this, he and his wife SEEM to be coping well.
Please encourage your son to drop in and read everything, join in wherever, and the same goes for you and your daughter-in-law.......
Best wishes,
Cathi

Title: Re: Is it true?
Post by Linda_Howell on Mar 17^th, 2006, 10:02pm

Lois,

I don't know where in California you live but we are having a get-together in Sacramento the last week-end of the month. Detail below and I hope maybe you live close enough to be there. No agenda. No formalities...just a get together to share stories & info & laughs.

Quote:

--------------------------------------------------------------------------------
CalOUCH get together is a 'GO' for March 25 & 26, 2006 at the:

La Quinta Inn
Sacramento Downtown
200 Jibboom St.
Sacramento, CA 95814
Phone: (916)448-8100
Fax: (916)447-3621
AAA 3 Diamond Rating

http://www.lq.com/lq/index.jsp
type in Sacramento then select downtown hotel

Exit Richards Blvd off I-5 just north of downtown.

We have secured $100 rooms - discounted to - $75 for our small group. When making your reservation give the group name - "OUCH".

Early birds will gather in the lobby from 2:00 pm on. Sometime before 'hunger' we will take the shuttle (hotel free) to 'Old Town' and become street walkers. Anyone expecting to arrive later than say 5 pm should let me know so we can plan a meet up time and location.

I have a 'Word.doc' (2 pages) that I can email to anyone that wants a good map to the hotel and listing of the hotel amenities. Like I said before, this is an informal gathering with no adgenda. Just clusterheads getting together to talk share stories and laugh.

Bob, if you could mass E-mail to everyone like you said that would be great and I will post this on ch.com also.

See you there. Linda

Title: Re: Is it true?
Post by Redd715 on Mar 17^th, 2006, 10:05pm

Lois,

Yes, it's true that these headaches (what an awful and rather minnimizing term) are worse than natural Childbirth.

Regardless if he is episodic or chronic, yes this is what she goes through every day...while he is in cycle. I'm a sufferer. But I've recently become involved with a sufferer as well, though he's yet to be officially dx. I see the pain in his eyes and on his face and I feel what he feels when I get hit. I feel what my kids must feel when I get hit. I feel helpless, but being a sufferer myself I can deal I suppose better than the average person.

Please direct both your son and his wife to the site here, and to www.ouch-us.org

There is host of information and support. If I were to help you compare CH to a migraine,(and I'm probably not going to be too good at it) Take the migraine pain, multiply it by 100, and focus it so it feels as if your eyeball is ready to pop itself right out of the socket, while at the same time the nostril is burning as though there is a red hot knitting needle being shoved up into it, and the same into the ear, with the points playing sword-fight right behind the eyeball. For some, but not all, there is also the feeling of wood splitting wedges being hammered between the molars and teeth on the same side as the headache.

Thats the best description I can give you. You know migraine. With a migraine, were you to put a drill bit threw your hand you'd feel it. Jody has done so with a CH and it didn't phase him. The head hurts worse.

It's been called pure and exquisite pain. I agree.

I hope this helps.

Pegg

Title: Re: Is it true?
Post by desertsunrise on Mar 19^th, 2006, 10:53am

Title: Re: Is it true?
Post by nani on Mar 19^th, 2006, 11:04am

He probably wants to be left alone. I do. Yes, it's hard on a marriage, and yes, it's better for him if he talks to people who understand. Send him here. We understand.
Thanks for your concern for them. :)

Title: Re: Is it true?
Post by Redd715 on Mar 19^th, 2006, 11:09am

on 03/19/06 at 10:53:47, desertsunrise wrote:

Thank you for the description of one of these things, I had no idea that they were so bad. I feel so bad now, it hurts me knowing that he is hurting like this. I wish I lived closer to him so that maybe I could help. I talked to his wife and she said that he has them for a couple months in the sping and fall. I know they have been having problems lately and I wonder if it could be related to his cluster migraines?

I just want to clarify something. Cluster is Cluster, Migraine is Migraine. Related disorders, but not in the least can they be called ClusterMigraine.

Are they hard on a marriage?

They can be if a person isn't strong enough to separate the Cluster cycle from the rest of life. The beast as we call it creates within us a monster as well, as we have to fight fire with fire...physically, medicaly and emotionaly. It's ruined more marriages and relationships than I want to guess, however, it has brought many people even closer. Guess it all depends on the intestinal fortitude of the people involved to begin with.

Is it unhealthy for him to not talk about them? When I saw him have one he got up and went to the bedroom, she got a heat pad and an injection needle for him and left him alone and told me to do the same. Why would she want to leave him alone if he is hurting that bad?

When we get hit with an attack, all we can do is focus on dealing and coping with it. We WANT to be left alone. His wife is helping him in the way he WANTS her to. To let him deal and cope with the pain then get back to life when it's over.

I am sorry if I am rambeling but I am just trying to figure out what I can do to help him if I can.
Lois

Honestly, the best thing you can do is ask him, when he's not in an attack, what if anything he would want you to do should he get one while you are there. Whatever his answer, respect that, and do as he asks.

I hope this helps, Lois.

Pegg

Title: Re: Is it true?
Post by desertsunrise on Mar 25^th, 2006, 8:12am

My son is coming to visit and I would like to know if there is anything I need to do to prepare. Is there anything that I can do to make him more comfortable while he is here? I don't like being helpless or being a bystander. I want, or need is a better word to help.
Lois

Title: Re: Is it true?
Post by IpityU on Mar 25^th, 2006, 11:42pm

Lois,
I read your post this morning. While am new to these message boards, I feel I can give you some words as a Mother, and a wife of a CH sufferer. Your son is coming to visit you..he is well aware that an attack of Ch may occur during the visit, he will be prepared. His wife will also make certain he is prepared! His attack he had while you visited him is a good example of how to make him comfortable. Provide a private room where he can go and deal alone with his CH if it occurs. I would also suggest you read over these wonderful and MOST helpful threads throughout clusterheadaches.com and jot down the location of ones you think may be helpful to him. Perhaps you could even print the links out on paper for him to read at another time. Bring him to your computer and show him where we are!! My husband is not one to sit at a computer and search for info on messageboards. But, he will read them over my shoulder if I tell him, "Come and read this interesting post about oxygen usage for Cluster Headaches," or "here is something really interesting about the herb Kudzu and it's success for treating some sufferers with CH", or "Wow, your imitrex injections are so expensive! Here is a post on how to get a couple dosages out of one" I can not help but think he will be touched by your concern for him.
Prayers for a fruitful visit with your son!

Lizah

Title: Re: Is it true?
Post by desertsunrise on Mar 26^th, 2006, 8:33am

That is very good advice, at least I will be doing somthing, maybe if I can point him here he can find somthing useful and somthing that helps him. Thanks Lizah.

Title: Re: Is it true?
Post by marlinsfan on Apr 5^th, 2006, 2:07pm

Not sure if you're still checking in, Lois. If you are, tell your daughter in law to come here too.

Title: Re: Is it true?
Post by Garys_Girl on Apr 5^th, 2006, 2:44pm

Lois, again, don't know if you're still checking in here or not, and even though I'm new to the site, I'm not new to being a supporter of someone with CH.

CH can be VERY hard on a marriage. Especially depending upon the number of attacks a day, and it seems your son experiences clusters for several months at a time, it can be hard on every relationship in his life, work included.

It is horrible as a spouse to know there's nothing I can do to stop the pain. But if he were to shut me out in terms of talking about it afterward, or even more importantly, helping him cope with how it affects all aspects of his life, our marriage would be on the rocks. Fortunately for me (as I see it, anyway), we're partners in this as in everything.

My hubby went from episodic to chronic over a month ago. He gets on average 2 - 3 hours of sleep a night. He experiences these things from 3 - 5 times per day, on average now. Sometimes he has so many in a row it seems like he's being attacked for over 24 hours. He is EXHAUSTED. We work primarily from home, so naps, occassionally, are an option. But if we had an office job, it would kill him. He is so beyond exhausted, there would be nothing in his life if I couldn't help keep our relationships - family, friends, and professionally - going.

Talk to your son or his wife, depending upon your relationship with her. Recommend the resources here and that others have referred you to. CH sufferers should not suffer alone, even though they need to be alone at some times.