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        Cluster Headache Help and Support >> Cluster Headache Specific >> Morphing SOB!
        
(Message started by: purpleydog on Aug 27^th, 2007, 2:59pm)

Title: Morphing SOB!
Post by purpleydog on Aug 27^th, 2007, 2:59pm

Vent:

Since I've been getting hit with these things, I've always switched sides. When I was episodic, one cycle, it would be on one side, next cycle, it would be the other side.

When I went chronic, they pretty much stayed on the left side, but rarely would suddenly switch sides. Same thing is happening now, I'm getting hit on the right, but this time, not only is it flaming down my right nostril, and burning my skull around the right side of my head, it's tracing a line to the "lump" in my neck, and going right down my back and over into my shoulder. I can feel it all the way there. It's almost like I should go to the chiro, but I know he can't stop them. And he knows too.

Last week, hits were coming every 60 minutes... they'd taper off after the trex shot, then start up again, and the O2 wasn't working, then the trex stopped working. I was frantically trying to find a stash of pred I had... took me 3 hours and 3 major slams to figure out where it was.

I took the pred, and the hits magically stopped in an hour. Pred is my friend, but I can't take it forever. The taper was done yesterday, and today, here we go again. I'm at work, giving myself shots of trex, so my boss won't see me and I called the neuro. I don't know if I'll get another taper or not, but I told him if I couldn't, I'd probably be in the hospital tonight. I need a refill on the trex, and it's barely controlling them right now. Plus, I'm using more than I should be, and I told them that.

What is it with this fucker? Lately, when I start to get into another "cycle", I'm REALLY getting whacked. Forget shadows, these just start up, and they are 9's and 10's on the Kip scale. Not the usual 6's and 7's. I can barely talk to anyone at work, and forget civility at home. I've bitten one head off already. I have NO idea what's triggering these.

Damn beast. >:( I can't take zyprexa at work, it will knock me out. And I sure as hell ain't leaving. This &#@!!. Bullshit!

Thanks for listening. I will now move on... nothing to see here, folks. :(

Title: Re: Morphing SOB!
Post by Ray on Aug 27^th, 2007, 3:42pm

I feel your pain brother. Sometimes I wish I had a magic wand that would make the beast go *poof* out of existance.

Are there some tools (treatments) you haven't tried? Are there some that you didn't have success with in the past that you might be willing to try? Is there a possibility that you could go inpatient at a major headache center for DHE or Histamine desensitization? Clusterbusters?

All I really know is that you cannot let the beast win.

My thoughts and prayers go out to you.

Ray

Title: Re: Morphing SOB!
Post by Redd on Aug 27^th, 2007, 4:00pm

Awww man sis....

I'm so sorry the bastage just doesn't want to give you a break. If you and Kirk need to call it off for the weekend I totally understand.

Check your PM's.

Title: Re: Morphing SOB!
Post by Sandy_C on Aug 27^th, 2007, 4:02pm

Honey, I am so sorry you are having such a rough time now.

Just know that all of us are sending vibes and hugs to you.

Hang on, and hang in.

[smiley=hug.gif] [smiley=hug.gif] [smiley=hug.gif]

Sandy

Title: Re: Morphing SOB!
Post by Bob_Johnson on Aug 27^th, 2007, 4:11pm

If trex has stopped working then continuing it is a waste. Have you ever tried olanzapine? If not, get a sample from the doc. You will know with one or two doses whether it's an option for you.
========
Headache 2001 Sep;41(8):813-6

Olanzapine as an Abortive Agent for Cluster Headache.

Rozen TD.

Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. The initial olanzapine dose was 5 mg, and the dose was increased to 10 mg if there was no pain relief. The dosage was decreased to 2.5 mg if the 5-mg dose was effective but caused adverse effects. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and two patients became headache-free after taking the drug. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. It alleviates pain quickly and has a consistent response across multiple treated attacks. It appears to work in both episodic and chronic cluster headache.

--------------------------------------------------------------------------------

Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.

Title: Re: Morphing SOB!
Post by Redd on Aug 27^th, 2007, 4:43pm

Bob,

She mentioned that she can't use that while at work because it knocks her for a loop.

Quote:

I can't take zyprexa at work, it will knock me out

Sis...get thee to an Aldi's and stock up on some Red Thunder. Slam one when you feel a hit come on. It's worth another shot at this point.

Title: Re: Morphing SOB!
Post by purpleydog on Aug 27^th, 2007, 4:46pm

Yeah, Bob, I do have some zyprexa (olanzapine), trouble is, I can't take it at work, I'll literally fall asleep. Which at the moment doesn't bother me a bit (doing that). The trex is working now, but barely. I appreciate it Bob, I'm gonna hit it as soon as I get home from work.

And thanks Sandy, and Ray too. Ray, I've done about every drug there is for CH, and either they don't work, or I can't tolerate them. I can't take the time off work for anything right now, at least not voluntarily. The frustration level is pretty high right now. Here comes another one... >:(

Pegg, we'll talk later sis...

Title: Re: Morphing SOB!
Post by gore2424 on Aug 27^th, 2007, 4:53pm

Chris all I can do for you is send you all my spare pain-free vibes plus some extra hope you get to feeling better
Terry
((((((((((([[[[[[[[[{HUG]]]]]]})))))))))))))

Title: Re: Morphing SOB!
Post by Rosybabe on Aug 27^th, 2007, 6:37pm

Purpley all my best vibes for pain free days are in your way

(((((((((((((((((((PAIN FREE WISHES)))))))))))))))))))))))))))))

Title: Re: Morphing SOB!
Post by Karla on Aug 27^th, 2007, 9:05pm

I am praying that you get the much needed break real soon. Big Hugs to you. If you do go to the hospital I hope they can help you.

Title: Re: Morphing SOB!
Post by HeadhurtinMama on Aug 27^th, 2007, 9:15pm

Chris, big hugs!!! Let me know if you need anything, I'm just up the road... Thinking PF thoughts for ya

Bridget

Title: Re: Morphing SOB!
Post by nani on Aug 27^th, 2007, 11:42pm

:( [smiley=hug.gif]

Sorry, Chris. Maybe switch hitting at it with your meds might help?

You know, trex or energy drink at work...zyprexa at night?

With busting, I often have to change up the treatment and/or combo to keep things working well.

I hope you catch a break very soon.

hugs, nani

Title: Re: Morphing SOB!
Post by sandie99 on Aug 28^th, 2007, 4:37am

Lots of PF wishes are headed your way, sis! [smiley=hug.gif][smiley=hug.gif][smiley=hug.gif]

PF days,
Sanna

Title: Re: Morphing SOB!
Post by Lotus on Aug 28^th, 2007, 6:14am

Sorry Chris to hear that you are having a hard time :(.

If the pain is radiating down the to the lump in the back of the neck and the shoulder, it seems to be following the cervical sympathetic nerve roots. Have you tried applying ice directly on the lump and on the shoulder? You may try moving the ice around a bit and see which spot is the most hot/painful and try putting ice there.

Have you tried Neurontin? If the beast is activating those nerve roots then Neurontin maybe worth a try, even Depakote as they reduce nerve activities. You might want to ask your neuro about them and see what does he think.

Sending vibes and prayers that the hits will ease soon.

Hugs

Title: Re: Morphing SOB!
Post by barry_sword on Aug 28^th, 2007, 7:08am

Sorry you are having a very tough time with it Chris. I hope you find something that gives you some relief. You will beat this!

Barry

Title: Re: Morphing SOB!
Post by BarbaraD on Aug 28^th, 2007, 8:36am

Chris,

Have you tried taking the Zyprexa at night instead of the daytime? I take topamax, but I take the dose at night instead of in the morning like the directions say and don't have the side effects of the dopey feeling. You might try this. Also you'll find out if it's working. If not try something else. Topamax has worked for me quite well. (But when I hit a cycle like yours I have to take up to 300mg to break the cycle).

Annette suggested neurotin (it works for some). The pred taper will work while the aborts are getting into your system.

Also, if the trex quits working -- have you tried cafergot (ergotomine)? I got off trex years ago and ergotomine has been my abort of choice. Takes a little while longer to work, but it seems to last longer also.

Talk to your neuro about some options. Sounds like you need to try something new.

Hugs BD

Title: Re: Morphing SOB!
Post by purpleydog on Aug 28^th, 2007, 11:43am

I got majorly whacked right before I left work. The person I need to talk to on my way out everyday noticed, I was having trouble talking.

Stopped at the pharmacy, they apparently have a problem, the refills I sent in online never made it to the doc due to a prob in their system.

I got home, took another shot of trex, and a zyprexa. I was out in an hour. Fell asleep in my chair about 6:30 and woke up this morning at 5 am with a hit. Had another shot of trex, took it's sweet time to work, but it finally kicked in. Right now I feel pretty good.

Barb, Neurontin is one of those things I can't take, it makes me stupid, and I really can't function, especially at work. I may give the ergotamines a try, and call the neuro. Thank you.

Time for more trex.

Thank you all.

Title: Re: Morphing SOB!
Post by E-Double on Aug 28^th, 2007, 11:49am

Reply to your email and PMs ;)