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Katherinecm

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please someone tell me to suck it up and deal
Aug 26^th, 2011 at 4:03pm

I am feeling ridiculously sorry for myself as I seem to be getting kip 8-10's 45 min on/45 min off all afternoon & evening. Today especially- as they started at 10am.

I'm feeling like a big baby because in the scheme of my history this is not even that bad! I've had weeks at a time where I didn't sleep more than 20 minutes and lately I've been getting 5 or 6 hours a night (at night!). WTF is up with my attitude? I can't seem to stop crying.

I know this isn't rational... I can't seem to snap out of it.

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"We are not human beings having a spiritual experience. We are spiritual beings that have a human experience." Teilhard de Chardin

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Batch CH.com Alumnus Offline Control The Beast With O2 & D3 You Must Posts: 3706 Bremerton, WA Gender:	Re: please someone tell me to suck it up and deal Reply #1 - Aug 26^th, 2011 at 4:15pm Have you started the anti-inflammatory regimen?
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Jeannie

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Re: please someone tell me to suck it up and deal
Reply #2 - Aug 26^th, 2011 at 4:27pm

Hi Katherine,

I'm sorry you are having a rough time. I think we've all been at the point that you are right now. CH sucks, plain and simple.
Sometimes I'm just sick of it. Sometimes I just want to be normal and not worry about o2, Trex, needing to dose and all the other crap that goes along with it.

Then I come here and I read of someone who needs a little help. And somehow, it helps me to reach out and try to be there for someone else. I never really know if the things I say or tips I offer are really any help to anyone but, just not focusing on me helps me to stop feeling sorry for myself.

Do you have 02? Are you using energy drinks? Taking your CH into your own hands is the key to finding what will work for you. There are so many things to help us live better lives.

PF wishes,

Jeannie

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"It's all a grand illusion when you think you're in control." ~ Kenny Chesney

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Bob Johnson

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Re: please someone tell me to suck it up and deal
Reply #3 - Aug 26^th, 2011 at 4:43pm

Of course you can't take it! Our minds and bodies are not "designed" to do so.

Question: who is treating you? I hope a headache specialist. If not, this is the area in which to be aggressive.
===
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. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Look for "Physician Finder" search box. 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.

6. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.

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Bob Johnson

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: please someone tell me to suck it up and deal Reply #4 - Aug 26^th, 2011 at 5:16pm Suck it up ya big wimp! High cycles suck, a little pity party never hurt anybody. Hang in there, we've all been there, we've all made it back out again. Joe
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Katherinecm

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Re: please someone tell me to suck it up and deal
Reply #5 - Aug 26^th, 2011 at 5:17pm

Thanks everyone... Yes, am sucking down the caffeine like crazy. Unfortunately traditional stuff like O2 & trex don't work for me.

My "good" neuro stopped practicing because of her MS. I've seen 3 others in the past year, one didn't believe I had CH because I'm female, and the others looked at my medical history and said the same thing the "good" neuro said: try pain management or surgery, because you've tried everything else and nothing else is available. One even suggested busting, but the seeds didn't work for me and due to government jobs & security clearances in the family I'm afraid to try anything else, at least here in the states.

Normally I handle this a lot better. IDK why I can't seem to right now. I did start the anti-inflammatory regimen last night... I'm actually feeling worse, but I'm not surprised--I spent a lot of time outside yesterday, the pollen counts are bad, and generally ANY exposure to allergens is a trigger for me for a few days. I didn't plan on doing that, but I got stuck in traffic & my car started overheating so I had to turn off the air & run the heater for probably 20 minutes until I got unstuck. It's a convertible so it wasn't as bad as it sounds, but...

Come to think of it... all those triggers I usually avoid at once (sudden increase in heat, allergens)... maybe something in blood chemistry after being exposed to triggers also makes me more emotional? It does seem like I'm always much worse when things are ramping up... maybe it's not just a matter of being "used" to it. Maybe whatever changes in the body's chemistry after being exposed to a trigger also makes you more emotional?

Thanks guys. Just thinking things through makes me feel a little better.

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"We are not human beings having a spiritual experience. We are spiritual beings that have a human experience." Teilhard de Chardin

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Potter CH.com Alumnus Offline Team MOOSE DROOL Stinky Stuff on a Hook Prostaff Posts: 3600 Blgs.Mt. Gender:	Re: please someone tell me to suck it up and deal Reply #6 - Aug 26^th, 2011 at 5:19pm Bust that cycle. Potter
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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: please someone tell me to suck it up and deal Reply #7 - Aug 26^th, 2011 at 6:39pm Quote: One even suggested busting, but the seeds didn't work for me and due to government jobs & security clearances in the family I'm afraid to try anything else, at least here in the states. Save your nickels and dimes and go to Jamaica or the Netherlands.
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B.Baer CH.com Veteran Offline I Love CH.com! Posts: 154 Northeast Pennsylvania Gender:	Re: please someone tell me to suck it up and deal Reply #8 - Aug 26^th, 2011 at 7:20pm Hi Katherine, Few years ago on Christmas Day, pounded every two hours, each lasted for at least 45 mins. I sucked it up, but it still sucked... and I vented so feel free to vent... We've all been there, and this group has always been here... to hear our complaints, failures and successes. Baer
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jon019

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Re: please someone tell me to suck it up and deal
Reply #9 - Aug 26^th, 2011 at 8:35pm

Katherinecm wrote on Aug 26^th, 2011 at 5:17pm:

Thanks guys. Just thinking things through makes me feel a little better.

Now then...that there is wisdom...that's why we are here...who else, but this family, would understand. A burden shared is a burden lessened.

You are thinking things through and we are thinking and praying for you Katherine....

Best,

Jon

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The LARGE print giveth....and the small print taketh away. Tom Waits

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Bob Johnson

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Re: please someone tell me to suck it up and deal
Reply #10 - Aug 27^th, 2011 at 9:09am

If the usual abortives are not working, consider ask the doc for a sample of this one. You will know with 1-3 uses whether it works for you. Advantage is that it's an entirely different class of meds (when used for CH) and, on a per dose basis, is much less than the triptans.

It's starting to get some good reports here.

Suggest you print out this abstract for the doc.
=========
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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« Last Edit: Aug 27^th, 2011 at 9:11am by Bob Johnson »

Bob Johnson

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bejeeber

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Re: please someone tell me to suck it up and deal
Reply #11 - Aug 27^th, 2011 at 12:52pm

Hi Kath,

Just freekin' suck it up and deal and quit WHINING.

Ha. 100% joking of course - I think I remember your severe case - exacerbated by a concussion is that right? Your pity party (which is really just some healthy venting) is pretty dang subdued compared to what mine would be in your situation!

GLAD that you are starting that anti-inflammatory regimen! Yay for that!

And I would certainly give the Zyprexa that Bob mentioned a shot if you haven't tried it and could get a prescription.

If I'm also remembering correctly that your environ hampers busting possibilities, I'm wondering if you could at least order the RC seeds and try some before bed?

As far as surgery is concerned, at the OUCH conference in July Dr. Goadsby discussed some new really small implant that sounds like it could be promising (I think they're still waiting for approval on that). And incredibly there's a technology that I believe is supposed to be in trials right around now, where there is NO implant - you just place a handheld thing near your trigeminal and it emits something that provides a long lasting abort. Wouldn't that be sweet if true!!?? Not that you can be waiting around, thrumming your fingers, la dee da dee da, for trials and krap right now.

Ahem....any others who were at that conference please correct any errors in my recollections/descriptions of these contraptions.

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« Last Edit: Aug 27^th, 2011 at 12:58pm by bejeeber »

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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Katherinecm

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Re: please someone tell me to suck it up and deal
Reply #12 - Aug 28^th, 2011 at 11:11am

Okay everybody... Not last night but the night before I didn't sleep at all, got hits 45 min on- 45 min off all night long. But what was almost worse than the CH was the shadow of pain all over the side of my face, which usually at its worst is maybe a Kip-6 but yesterday was a Kip-8 nonstop. By 6am I woke up my boyfriend & had him take me to the hospital- where they didn't believe me that imi & oxygen didn't work, left me on it for more than an hour (long enough that the first headache passed, the waiting period passed, and I got a second headache by the time they came to check on me again.. I really think they didn't believe me & thought I was having a migraine.

Anyway, they finally gave me a shot of something they said was benadryl & an antiemetic (hello? NOT nauseous!) but at least I slept for about 4 hours when I got home.

By the time I woke up, my boyfriend, who knew I'd been putting off a root canal on a broken tooth (not completely irresponsibly, I have a temporary filling), asked if I was sure the constant pain wasn't being caused by my tooth, because that side of my face was swollen!

My dentist called in an antibiotic, a painkiller, and told me to take 4 advil, then 3 hours later a painkiller, and repeat every 3 hours. And last night I slept much better, no breakthrough hits, the shadowy pain is now down to a 2!

And so now I'm thinking when I have this kind of bad shadow again I'll never know whether it's a bad root canal or just a shadow (clearly the infection was acting like a trigger for me, or the irritation on the nerve was a trigger or something)...

I'm strongly considering forgetting the root canal & just yanking the tooth... OTOH, I'm only 32, so having an empty spot in my mouth, bridge or not, isn't perfect either....

What do you guys think? Root Canal a good/bad idea?

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"We are not human beings having a spiritual experience. We are spiritual beings that have a human experience." Teilhard de Chardin

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bejeeber

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Re: please someone tell me to suck it up and deal
Reply #13 - Aug 28^th, 2011 at 1:58pm

I don't know about the advisability of a root canal at this juncture, but if it's a top front tooth, just having it pulled with a hole left there might look kind of humorous. Cheesy

SORRY. In mischievous mood today.

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« Last Edit: Aug 28^th, 2011 at 3:35pm by bejeeber »

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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Katherinecm CH.com Sponsor Offline Posts: 432 Des Moines, IA, USA Gender:	Re: please someone tell me to suck it up and deal Reply #14 - Aug 28^th, 2011 at 2:50pm hehe.... no, it's a first molar. and as no one has ever asked about the tooth that's been broken with a temporary filling for about a year now, I suspect it's not very visible.
Back to top	"We are not human beings having a spiritual experience. We are spiritual beings that have a human experience." Teilhard de Chardin IP Logged

Bob Johnson CH.com Alumnus Offline "Only the educated are free." -Epictetus Posts: 5965 Kennett Square, PA (USA) Gender:	Re: please someone tell me to suck it up and deal Reply #15 - Aug 28^th, 2011 at 3:31pm At your age, pulling the tooth and not having a replacemnt will lead to the reamining teeth drifting toward the gap. A bridge will work but, if you can spring the $, an implant is permanent, neat; especially attractive for front teeth. (Thirty years from now the cost will be forgetten <bg>.)
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wimsey1

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Re: please someone tell me to suck it up and deal
Reply #16 - Aug 31^st, 2011 at 8:26am

I can't tell you how many of us had teeth pulled on the off chance they might have been triggering the hits. NOT! Make your decision on keeping or not keeping the tooth based on something other than CHs. I think someone once wrote they had all their teeth pulled and still got hits. Could be urban legend. Just curious. When you went to the hospital did they suggest DHE IV? That can sometimes work when trex won't. It did for me. And just to reassure me, you are using the proper flow and masks for O2? Cuz hospital flow rates and masks are not necessarily what works best. Get em under control girl and God bless. lance

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Katherinecm

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Re: please someone tell me to suck it up and deal
Reply #17 - Aug 31^st, 2011 at 6:00pm

yeah, I think that was johnny who had his teeth all pulled.

I'm leaning towards yanking it, and I'm pretty excited about it actually. My hits in the past couple of days since I've been on antibiotics have been cut, in number and intensity, by probably 75%. Even yesterday's thunderstorms left me with only 4 shadows. Which tells me the tooth infection is a trigger for me, and if it comes back & I go for a root canal I'll have no idea if it was a failed root canal or just CH again. If I yank it & still have bad trigeminal pain, clearly it won't be the tooth. Probably will have it replaced with an implant... though I may wait 6 weeks for that just to get a new baseline.

I'm SO excited about feeling better. I really feel better than I have in MONTHS. I haven't been working & have been dragging my feet about getting back on Social Security because doing so would feel like defeat, but if the past few days are any indication getting this tooth yanked will be SO much better I can go back to work! I can finish the projects I've not had the energy to work on! YAY!

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"We are not human beings having a spiritual experience. We are spiritual beings that have a human experience." Teilhard de Chardin

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Katherinecm

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Re: please someone tell me to suck it up and deal
Reply #18 - Aug 31^st, 2011 at 6:03pm

oh- I can't do DHE because I'm allergic to ergotamines... the take-home inhaler my neuro had me try to see if the IV thing would be safe made me break out in hives in less than a minute (I have severe mold allergies so she was suspicious about trying that).

And yes, I've tried the proper masks and flow rates, I even tried it in front of a couple different doctors to make sure I was "doing it right." Made my hands and feet a tingly and skin sort of... blotchy? every time but no affect on pain at all.

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"We are not human beings having a spiritual experience. We are spiritual beings that have a human experience." Teilhard de Chardin

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