Hi everyone.  I'm Drea & my husband is Tim.  We are both in in our 50's. He has suffered from CH for about 20 years.  It's just a coincidence that I suffer from regular migraines.  Right now we are both in a zone and really having a hard time.  Tim usually gets his CH every 3 years and they last several months, with him getting from 3 to 6 a day, with shadows in between.  We are worried though because he was in a zone only 3 months ago.  So this is a new twist with the beast.  

I think we've tried every med out there, all the triptans, narcotics, blood pressure meds,  DHE injections, steroids, anti seizure, anti depressants & Oxygen.  Nothing really helps much.  I found your site today, and wanted to reach out because sometimes I think he feels so alone.  Even though we sympathize with eachothers pain, each is unique.  He does the dance, paces, rocks, tears up and keeps saying he can't take it anymore.  I curl up in a ball on the bathroom floor in the dark.    I almost took him to the ER the other night, but didn't because I was too sick myself to safely drive.  Good Lord, if it wasn't so awful it would be funny.   Somehow we got though the night  with ice on our heads.  Later, we found out from the local urgent care center doctor that the hospital in our town is "not sympathetic to CH or migraine sufferers".  So, I'm glad we didn't bother with hours of waiting and then no help.  I'm sure they would have thought we were nut cases anyway.

Tim has an appointment with a new neuro next month.  We are hoping that maybe there is some treatment out there we missed during his remission.  Thanks for giving me a place to talk.  I told Tim all about you guys, and I think it gave him a bit of encouragement and hope just knowing he's not alone.  More Pain Free Days to you all!

Drea

Welcome to both of you!

I hope the new doc will be of some help. If I may ask, when O2 was tried, what type of mask and flow rate was used. Success with O2 can depend on these factors.

Bill

Hope your newest doc is a specialist in headache. Collectively, we have had so much dissatisfaction with general neuros because so many of them lack training and experience in complex headache disorders. (Get back if you are interested in seaching for a specialist.)

One med which is helping several of us:

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.



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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.
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Most current treatments:

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Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
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Michigan Headache & Neurological Institute for another list of treatments and other articles:

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Welocme to both of you! WOW, CH and Migrains...that's a tough double wammy in a marriage. A tip of my hat to both of you for making it work.

When you have an opportunity, read the oxygen info link on the left. Many have found by changing HOW they use the 02, they've dramatically improved its effectiveness. Using too low a flow rate, using re breathers instead of Non Rebreather masks...all have a significant effect on its effectiveness.

Wishing you both some pain free time.

Joe

I have to agree with both Bill and Joe (did I really say that?   LOL!) ... MANY of us, myself included, were convinced that oxygen did not work for us.  Once us stubborn ba$tards individuals were convinced to try it again, but following our new usage guide lines, most of us have become oxygen pushers, because it is SO effective, safe, and inexpensive.

Please convince him to try it again, at a minimum of 15LPM.  25LPM, and higher are even quicker and more effective!  There is even a beginning of a theory that the very high flow rates (25LPM and higher) work for migraine sufferers too!

If you have any questions about how to use it, please don't be afraid to ask.  Most questions are answered in the information behind the tab, on the left side of your screen, labled: oxygen info.

Good luck, and please keep us informed!  We DO care!

Chuck

Thank you so much to all those who replied!  Tim is resistent to try oxygen again because it didn't work 6 years ago.  I have no idea about the equipment we used then.  I just remember a big ol tank in the house with a mask attached.   I am trying to convince him we need to give it another try.  We will also take the info on the Zyprexa to the neuro when he goes next month.

He had a really bad night last night, but it finally let up enough for him to lay down for a while.  It seems when ever he lays down though it makes the CH come back, so I have him propped up this morning so he's not laying flat.  All our animals are worried about him too, so all 3 cats and 2 dogs are curled up next to him.  CH sure turns you life upside down doesn't it?  Thanks again everybody.

Drea

Ref. #5 & posture: We have had a couple of series of discussions on posture and CH. I, for one, could trigger an attack by sitting in a chair which put pressure on the kidney area or sleeping on my back. And, could abort development by changing posture within seconds of the pain starting to develop. Strange!

Dr. Rozen, of the Zyprexa article, is one of the more innovative CH docs in this country. The nice thing about it, besides working quickly, is that, on a per dose cost basis, is much less than the triptans.

Hi again all,  Tim's up now walking around like he's a bit dazed and says he still has a regular headache.  I'm trying to convince him to try the oxygen again.  I'm also thinking since that clinic doctor has been fairly good to him so far, we should go back and ask him for a script for it.  I'm having a hard time imagining another month with him like this until the neuro visit.  I personally haven't had much luck with any neuro, but I'm trying not to have a negative attitude about them for Tim's sake.  Seems to me like they order xrays and read them, then send you back to your regular doc, who either doesn't know what to do or isn't willing to help.

I read all the oxygen info, but found it all a bit...well intimidating.  I'm not a very mechanical person you guys.  It's all I can do to unclog the vacuum!

Drea, you ARE the boss in that household, RIGHT?  So, as you ARE the boss, go plant your hard firm boot, in his butt, and tell him he has NO CHOICE but to listen to you!  He should know by now, that he can't win a fight with you wimminz!  LOL!

MANY of us were stubborn (and I was one of the worst!), and kept swearing that oxygen did not work for us.  Once we got the right equipment, and the proper way to use it, we found out what a God send it truly is!

Talk to his doctor's office (behind his back, if need be) (you wimminz are GOOD at that sort of stuff!  LOL!) and get the oxygen prescribed!  Once you get the script, we will gladly help you teach ol Mr PigHeaded on how to use it.

I can't push the oxygen hard enough!  I KNOW how well it works, when done properly.  I will send you a PM with my phone number.  Feel free to call, and I will gladly talk with you about it.  OR, send me your phone number, and I will call you, as I have free long distance service.

I joke and tease with you, but in all seriousness, he NEEDS to try oxygen again!

Use the argument that it just MIGHT help YOU too!  Now he wouldn't deny YOU help, would he?

Please keep us informed, as we are nosy ba$tards DO care!

Chuck

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE  On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box.  Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

Do touch base with Chuck.  he may be strange as anything, but there is nobody more caring and willing to help.  (Geez, I complimented Chuck, even if backhanded.  Note to self:  See a Pshrink ASAP!) ;D

I am the opposite of Bob.  I cannot lie down at night until I know I am through with them for the night.  I often will sleep in my Lazy Boy with it nearly upright.

For the persistent HA's following an attack I use strong coffee, and a lot of it.  It also helps out with the shadows that usually precede an attack for me.  Sometimes I can even forstall a hit if I can get enough in me.  Another thing that works for me if I get it in the very early stages of a hit is an energy drink with Taurene.  Red Bull, Monster, RockStar, etc.  You can't drink it as a normal drink for it to be effective.  I've gotten to where I can down a full can of Monster or the like without a breath if it isn't to cold.  Often that will abort a hit, or at least knock it down to a manageable level in about 5-8 minutes.

hope this helps.

Jerry

Jerry and All,

Thanks for the tips.  I've been telling Tim to drink more coffee as it sometimes helps me with my with regular migraines also.  We'll try the energy drink too!  

You guys are all so great.  We are very blessed to have found you!  He seems more upbeat tonight, and I think just knowing you all are out there has made a difference emotionally.  We are forming a plan of attack, and if he is not better by Monday we are marching ourselves back to the clinic to ask for help.  This time we are coming armed with info.


Drea

I like your attitude Drea, remind that boy how lucky he is to have you in his corner! ;)

Joe

Ok, Drea - I'm with Chuckles (OMG did I say that?) Give him a CALL!!! He's a quirky old bat, but he knows his stuff about O2.

Last year we were at convention and I got hit during a seminar. The old bat grabbed his O2 and stuck his mask on my face and told me to "Breathe you old broad!" I did and in 3 minutes my hit was gone along with the shadow (someone in the back of the room was timing it). I found "true love" right then and there (with his O2 tank!). Later another chronic CHer got hit and he did the same thing to her - She fell so in love with his O2 tank (and I think him) that she even swore off calling him names for a whole year (and has kept her word). And we've both used O2 for years with not great results.... but things have changed.

For the past year (using Chuck's NEW equipment that Linda and I both went home from convention with) I haven't had to use any other abort except maybe once or twice (and that was when I got hit with a migraine AND a CH at the same time).

So you get that man of yours (baseball bat will get his attention if need be) to LISTEN to you and call Chuck and get some FACTS about the NEW way to use O2 and get him on it. It has CHANGED in the last 5 years!!!! And as Chuckles said - there's research going on as we type about it's use for migraines also. He can tell you about that also. It has something to do with a paper sack (they've been trying to explain it to me, but I haven't had one since they started 'splain' it to me  :).

Now, go and do your work - your orders are clear ;)

Hugs BD :-*

PS  Welcome to Clusterville and your NEW family of bossy relatives... ::)

Don't take the above oxygen suggestions lightly. There is a reason many, many abandoned it when they found that it "didn't work" - I'm one of them.

Breathing 100% oxygen at VERY HIGH FLOW rate for several minutes is critical to give it a chance to work - especially for those who tried the conventional lower flow and got no relief. If your husband tries again at the same old 8-10 liters per minute, it probably won't work this time either.

You two need to take control of the situation.