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3 Weeks Down (Read 1095 times)
barenibar
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3 Weeks Down
Dec 25th, 2011 at 9:30am
 
Well, 3 weeks down and I thought I'd provide a summary of this interesting week.  After having one of the worst days I've ever had this past Saturday, I wasn't about to suffer like that again.  It hit me first thing Monday morning and came on hard, so I went to the hospital and let me tell you about the wonderful world of military hospitals; they don't know much which somewhat worked to my advantage.  I went in with the headache and they saw I was in pain.  Once they saw that I was diagnosed with cluster headaches I seemed to be the patient everyone wanted to see because I was the second patient ever to go in there with cluster headaches.  Nobody knew how to treat it, so I, not realizing that they'd take my word for it, told them that they treated me before with Oxygen and Cafergot.  Two minutes later I had a prescription for Cafergot and a referral for Oxygen.  Then they took me into the treatment area and gave me a double shot of Imitrex and put me on oxygen.  I know now that Imitrex is useless to me because it didn't help at all.  Neither did the Oxygen because they only had it on 2, but I didn't know what the exact flow was supposed to be so I couldn't tell them what to raise it to. 

So, now that I have the Cafergot, which mind you, it didn't seem to work years ago when I got it, works wonderfully.  I don't know if it has anything to do with the fact that it's the brand version and not the generic version that I received last time, but I'm hooked.  Cafergot is a mixture of ergotamine and caffeine 1/100mg.  I'm supposed to take 2 at onset and then 1 every 30 minutes after.  Unfortunately, my aura is only about 5 minutes and it takes about 10 minutes for the Cafergot to kick in, but when it does there is no pain for the rest of the day.  If I can't get to the medicine before the headache sets in then I have to take 3, but that's it.  I am now in a weird cycle where it comes at exactly 4:30 in the morning and I wake up the instant I feel the aura and go take the medication.  It means I have to stay up from 4:30, but the cost is insignificant compared to the benefit.  I have not seen a full attack since Saturday.

Now just a few odd things I've discovered during while I am in the initial stage of an attack.  This is just an interesting thing that happens, but when I walk into a brightly lit room I can see and feel my left eye go in and out of focus and switch back and forth between dark and light while the right eye is just fine.  Odd huh?

The other thing I've noticed is that at any time during the onset I cannot look left or keep my eyes closed or else it will trigger the headache into full mode.  I found that if I look right and blink slowly but don't focus that it never sets and gives me the buffer I need for the medication to take affect. 

Well, I hope I've helped a little bit and will continue to provide as much info as I can.  Take care.
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Guiseppi
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Re: 3 Weeks Down
Reply #1 - Dec 25th, 2011 at 9:41am
 
I used to use cafergot, it never worked by itself for me, but if I took one when I started my oxygen, the 02 would kill it within 6-8 minutes, the cafergot would buy me up to 12 pain free hours.

The oxygen needs to be at least 15 LPM, some must go to 25- 45 LPM, using a Non Re Breather Mask, and it's critical to get on it as soon as the attack starts. Once an attack is firmly established, 02 won't help me much.

Same with trex, if I let the attack get really established, trex will take the edge off but won't kill the attack completely.

Glad you're getting some relief. Keep pushing hard on the research, the more you know, the less you hurt. Wink

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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AussieBrian
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Re: 3 Weeks Down
Reply #2 - Dec 25th, 2011 at 5:56pm
 
Many years ago a neuro screwed up badly and I ended with a serious cafergot overdose and things were not good at all. Long time before I could have a beer, among other things.

If you find you've suddenly an unexplained sprained ankle or the like, talk to your pharmacist immediately.
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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
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Bob Johnson
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Re: 3 Weeks Down
Reply #3 - Dec 25th, 2011 at 6:54pm
 
Forty-years ageo when my Clusters first appeared ergotamine was the only abortive to be had. It was erratic, at best, and quickly disappeared when other abotives came on line.

The one thing I recall is the necessity to use it at the very first signs of an attack, even before the full symptom package developes.

The PDF file, below, gives current thinking on treatments. You may wish to print out and file away in case there is a change for you.

That Imitrex doesn't work for you puts you in a very small minority! If, however, you have only used the pill or spray vesions, the odds change much to your favor by using injection.

Number of us have had excellent response with this med. Anothe one to put in the file....

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.

PMID 11576207 PubMed

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


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.
=====
Since this abstract was first posted Zyprexa has appeared in some lists of recommended meds for CH. [BJ]
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Bob Johnson
 
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moga
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Re: 3 Weeks Down
Reply #4 - Dec 26th, 2011 at 3:01pm
 
Hey AussieBrian can you please elaborate about the sprained ankle statement.
I woke up with a swollen and bruised ankle last week and i cant think where i injured it.It might just be coincidence.
I am currently on Sumatriptan and its the only thing that gives me any relief so i hope it's nothing to do with that..

cheers Alan
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AussieBrian
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Re: 3 Weeks Down
Reply #5 - Dec 26th, 2011 at 6:13pm
 
G'day Alan, and I wasn't near sumatripan at the time, but I woke up one morning with a badly sprained ankle for no reason at all. I put it down to sleeping in a funny position but woke the next morning to find my other ankle was severely sprained along with one of my knees.

She-who-must-be-obeyed bolted to our pharmacist who was horrified to learn I was taking more than double the absolute maximum of cafergot and it was likely affecting blood flow to my extremities.

I stopped the pills immediately and it came good after a couple of days but I can tell you it's a long way to the fridge when can't even bloody walk.

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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
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moga
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Re: 3 Weeks Down
Reply #6 - Dec 27th, 2011 at 1:37pm
 
Cheers Brian, going along the caffein lines ,maybe all the rudbull i've been drinking had something to do with my ankle and my wrist feeling bruised  or it's probably just coincidence and i'm just paranoid...
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