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        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> Frustrated!
        
(Message started by: kimmiedawn81 on Jun 12^th, 2004, 12:33pm)

Title: Frustrated!
Post by kimmiedawn81 on Jun 12^th, 2004, 12:33pm

Ok, I don't know if you guys feel the same as I do. I just get frustrated that my friends, family, coworkers, etc. have absolutely no idea what I'm going through and the pain that I endure. I just want them to understand and to know how it feels, and how debilitating it is. I don't want people to say that they understand or that they wish they could help. I just want them to KNOW. I'm not sure if anyone else feels the same as I do, but I just needed to vent. Thanks for reading this!
Kim

Title: Re: Frustrated!
Post by Rock_Lobster on Jun 12^th, 2004, 1:15pm

You are doing the right thing... vent to us. Few others can relate.

That said, I am a wuss when it comes to the pain. I am aggressive on the preventatives, and have the needle in the arm when the temple starts to twitch. So the pain is kinda a done deal for me.

You doing meds? They working?

Rock!

Title: Re: Frustrated!
Post by kimmiedawn81 on Jun 12^th, 2004, 1:21pm

When I'm in the cluster, which normally lasts about 2 months, I take Lithium 300mg about 2-3 times a day. I also take Verapamil and Inderal LA once a day. As for when I actually have a "headache" (meaning the most horrible pain imaginable), I usually get sick, so pills don't normally work, I have taken Maxalt, Zomig nasal spray, imitrex nasal spray, I think that maybe it as far as pain meds. I go to a new neurologist on Monday in St. Louis, I hope he can give me something useful.
By the way, I used oxygen a few yrs ago, but it was the nostril thing instead of the mask, I'm beginning to wonder if I should try that again, but with the mask this time.
Kim

Title: Re: Frustrated!
Post by Rock_Lobster on Jun 12^th, 2004, 1:40pm

Never tried Maxalt.
The Zomig NS and Imitrex NS should leave you PF in 5-10 minutes.
For me, pills just suck as an abortive... too much owwie for too long before they kick in, if they bother to kick in!

Go with the o2 mask described on the link on the left... the non-rebreather. That nostril thing is only good for pissing you off during the CH.

Rock!

Title: Re: Frustrated!
Post by Superpain on Jun 12^th, 2004, 5:03pm

Yeah, that's one of the hardest parts of having ch.

There's an article to give to co workers that someone posted a while back that conveys the situation pretty well.
Does anyone know where that article is?

Title: Re: Frustrated!
Post by Roxy on Jun 12^th, 2004, 5:06pm

If you go to the OUCH website http://www.clusterheadaches.org/, click on OUCH on the navigation bar, you will get a drop down menu. Click on Colleagues Letter. It will immediately go into download (no way to put a link here for you).

Just print that off, and let your family and friends read it....it might help.

T

Title: Re: Frustrated!
Post by Little Deb on Jun 12^th, 2004, 9:00pm

K-

We all feel the same way.
All we can do is try to educate people, and hope for the best....and print out that letter that Roxy mentioned.

Good luck....Little Deb

Title: Re: Frustrated!
Post by kimmiedawn81 on Jun 13^th, 2004, 1:22am

Thank you so much for telling me about the Colleague Letter. I really appreciate that. I don't want people to think that I'm bitching that those people in my life don't know what I go through, I truly don't want them to have to endure that. However, at times I just feel so alone and isolated. Anyhow, thank you very much for the information, I appreciate it!

Title: Re: Frustrated!
Post by BlueMeanie on Jun 13^th, 2004, 2:14am

Hi KimmieDawn,

Sorry you're another victim of this horrific pain we endure. Glad you found the site. Anytime you need to vent that's o.k We understand. The mask and the 12-15 lpm regulator is a must to knock out the beast. It doesn't always work, but the tubes in the nostril never work. Ask your neuro about Imitrex shots. Read the info to the left. If you do try it, the shots can be taken 1/2 at a time and are just as effective. Saves big bucks.

Good luck to you. Hope you have a neuro that understands and is willing to help you. You may want to print some info to take with you.

Title: Re: Frustrated!
Post by kimmiedawn81 on Jun 13^th, 2004, 7:27pm

Thanks for the info. The only thing that scares me about the Imitrex injections is the fact that I would have to give myself a shot. What kind of stuff should I print out?
By the way, I've done Imitrex NS before, I'm kind of immune to Imitrex at this point. Anymore pointers, please let me know!!!
Thanks again!
Kim

Title: Re: Frustrated!
Post by Superpain on Jun 14^th, 2004, 2:44pm

Believe me.... After the first time you jab yourself in the arm and you bitchslap the beast back to the hell in which he came from, you will get over the whole "fear of needles".
It's really easy and not as bad as it sounds.

Title: Re: Frustrated!
Post by Superpain on Jun 14^th, 2004, 2:45pm

And you won't be immune to a shot....

Title: Re: Frustrated!
Post by Allen_A on Jun 14^th, 2004, 8:46pm

I HEAR YOU!!! I missed 2 days of work in last 2 weeks. Been averaging 3 hours of sleep in same period. Been eating cafergot like crazy. YAA, we all get frustrated too. We totally understand. I tell my boss I cant make it in and he tells me "hey this job gives me headache everyday, I still come to work. What, you a girl thingy or something?" If he only knew how many times I sit there running backhoe while my head is exploding inside.... Today I got my first tank of oxygen.... Saying a prayer as I type.... been fighting this beast for 30 years and would never have found out about oxygen if not for this site and the people here...I told my doctor about this site the other day. Hope he checks it out.