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Scared to death (Read 3997 times)

dionysiusaeropagite

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May the Peace of the Lord
be with you Always

Posts: 28
Columbus, OH
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Scared to death
Nov 24^th, 2008 at 4:23pm

Dearest loved ones in Christ,

I went to get another prescription for my meds, and found out the insurance will not pay for any more Maxalt. I cannot afford it without insurance. I must now go until Wednesday afternoon without any abortive meds. I have no O2, been tryin like hell to get it, and now, no more Maxalt. I pray that my depakote will work until then, and if not, perhaps the little bit of lidocaine spray might (although I have yet to have it work).

Please pray for me. The last week has been hell on earth already. 10 weeks now in this cluster cycle, almost all of the headaches have been 8+ on the Kipp scale.

I've gone through this before without meds ... before I knew what I had. I CAN'T GO THROUGH THAT AGAIN! I know I'll crack if I do, and may even hurt myself.

Dear God ... what will I do? Cry

Come to Me all who labor and are heavy burdened, and I will give you rest says the Lord.

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Bob Johnson

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Re: Scared to death
Reply #1 - Nov 24^th, 2008 at 4:26pm

Ask your doc for a sample. You will know within one or two doses, whether it works for you. On a per dose cost basis, it's less expensive than than the triptans and is magic for some 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.

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

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.

Bob Johnson

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gizmo CH.com Hall of Famer Offline Posts: 522 Germany Gender:	Re: Scared to death Reply #2 - Nov 24^th, 2008 at 4:44pm Also try the energy drinks! Regarding the prayers: on their way Oliver
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on my knees Ex Member	Re: Scared to death Reply #3 - Nov 24^th, 2008 at 5:31pm hello Father; please check you pm's
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Batch CH.com Alumnus Offline Control The Beast With O2 & D3 You Must Posts: 3706 Bremerton, WA Gender:	Re: Scared to death Reply #4 - Nov 24^th, 2008 at 8:00pm Padre, Check your email. V/R, Batch
Back to top	You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there IP Logged

BMoneeTheMoneeMan

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Re: Scared to death
Reply #5 - Nov 24^th, 2008 at 8:54pm

Fear is weakness sneaking in. Don't be scared.

Get with your doc and have him lobby the insurance company to give more meds per month. Fight for it.
Use this situation as a learning experience. Make a mental sticky note to not get in this situation again. Plan ahead. Stockpile meds. Get O2. (Getting O2 would probably be your fastest, easiest and cheapest route to get immediate relief)

Keep yo chin up. Stay strong.

"Fool me once, shame on, shame on you. Fool - can't get fooled again"&&&&&&Think of how stupid the average person is, and then realize half the population is stupider than that.&&&&

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Potter CH.com Alumnus Offline Team MOOSE DROOL Stinky Stuff on a Hook Prostaff Posts: 3600 Blgs.Mt. Gender:	Re: Scared to death Reply #6 - Nov 24^th, 2008 at 9:24pm Betcha a buck that the diocese has a large maintenance division, get a mask, find your friendly janitor and tell him to point you to the big green oxygen tank. Potter
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Linda_Howell CH.com Moderator CH.com Alumnus Offline Do not feed the Moderators Posts: 11927 Santa Maria, Ca. Gender:	Re: Scared to death Reply #7 - Nov 24^th, 2008 at 9:55pm Father Joe, Cherck your PM' Linda
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RichardN

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Re: Scared to death
Reply #8 - Nov 24^th, 2008 at 10:54pm

Another STRONG vote for 02.

Until then, as suggested . . . strong coffee, Red Bull, etc. Ice pack on the affected side (I have to move it around . . . eye, neck, face,forehead . . .for me, if I leave it in one place it tends to cause more discomfort in that area and doesn't work as well as moving it around.) I used to use heat, but now prefer cold.

Our thoughts are with you . . . we understand.

Be Safe, PFDANs

Richard

I can live with the beast as long as I don't have to "dance" with the bastard.

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dionysiusaeropagite

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May the Peace of the Lord
be with you Always

Posts: 28
Columbus, OH
Gender: male

Re: Scared to death
Reply #9 - Nov 24^th, 2008 at 11:49pm

Thank you all for your wonderful help and sentiments.

I will see my good ol' family physician on Wednesday (I haven't seen him in years, and he has no idea of my Cluster Headache status). Trust me, I'm going in well armed with info on O2, and I will chain myself to his leg until he gives it to me.

I thank you all again for everything you have offered me. Please keep me in prayer. It's almost midnight here ... typically waaay past my bedtime ... but I find myself unable to sleep. I'm not sure why. Probably just not wanting to wake up with a headache.

Anywho, my prayers go out for each and every one of you. May God take your crosses away long enough for you all to get rest.

God bless,

Joe

Come to Me all who labor and are heavy burdened, and I will give you rest says the Lord.

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George

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Re: Scared to death
Reply #10 - Nov 25^th, 2008 at 1:48am

dionysiusaeropagite wrote on Nov 24^th, 2008 at 11:49pm:

It's almost midnight here ... typically waaay past my bedtime ... but I find myself unable to sleep. I'm not sure why. Probably just not wanting to wake up with a headache.

Not an unfamiliar sensation. Wink

I tend to keep very weird hours during a cycle--it's not just the disruption to sleep, it's the fact that the entire sleep cycle seems to be disrupted. Yeah, yeah--I know--it's best to keep regular hours during a cycle, but...

I've seen that you say that you don't know whether or not you can get through what's ahead...but you know what? You can. Despite the difficulties with your meds (bet you won't get caught short next time), you know you can do it.

You've done it.

Push comes to shove, and it gets beyond endurance, listen to Potter--somebody in the maintenance department has some welding 02 tanks. You can make it work if you have to.

Sometimes you gotta do what you gotta do.

Hang in there, Padre. We're all rooting for you.

Best wishes,

George

"Whoever loveth me, loveth my hound." (Thomas More, author of "Utopia", and Chancellor of England. 1477-1535)

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dionysiusaeropagite

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May the Peace of the Lord
be with you Always

Posts: 28
Columbus, OH
Gender: male

Re: Scared to death
Reply #11 - Nov 25^th, 2008 at 8:52am

today, I awoke after a surprisingly refreshing sleep. I honestly believe that all of your prayers were heard by God, and he granted rest for my weary soul.

Thank you so much. One more day to go. I see the Doctor tomorrow, and perhaps I can finally work things out with the insurance company so that this sort of thing will never happen again.

God bless you all during this holiday season. I know already what I am thankful for.

Praises Be!!

Come to Me all who labor and are heavy burdened, and I will give you rest says the Lord.

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Jeannie

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Live, Laugh, Love....

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St Louis, Missouri
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Re: Scared to death
Reply #12 - Nov 25^th, 2008 at 12:24pm

Hey Father Joe,

So sorry that you are getting hit so badly. I also do not have 02 yet. I will try to get it in the Spring when my Clusters start up again. During the summer I had a couple of "rouge" hits. I had read that hyperventilating can sometimes help so I tried it along with an energy drink. Neither hit ever got worse than a kip 6 and both were gone after 15 minutes. Maybe they were just mild hits or maybe it worked. Either way, it couldn't hurt to try.

I hope that your Dr. appt. goes well.

PF wishes,

Jeannie

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

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MITYRARE

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Re: Scared to death
Reply #13 - Nov 25^th, 2008 at 1:57pm

dionysiusaeropagite wrote on Nov 25^th, 2008 at 8:52am:

today, I awoke after a surprisingly refreshing sleep.

Sleep is so important to health.
I have suffered CH with little relief for years...O2, drugs nothing seemed to help...then many years ago poor sleep and stress and then i felt i was spiralling into a nervous breakdown or whatever.

..then the neuro said "screw the headaches....lets treat the sleep issue" and " stay away from tranquilizers" so he put me on various old style antidepressants ( trimiprimine, amitriptylene etc) that give you a deep sleep beyond the regulat REM ( rapid eye movement sleep or light sleep) that many other sleep products keep you in.

..over the years I have settled in well with the drug amitriptylene and have lowered the dose to a maintenance level that gives me good sleep

I increase the dose during CH cycles to maintain good sleep which helps deal with the headaches somewhat and seems to keep me away from the 10 kip pain.

By adding Topamax or other drug combinations (always changing as my body adapts quickly to new drug cocktails) i attempt to keep pain below 8 (at least that is my goal).

Good sleep gives me the rest needed to fight these things without getting depressed or feeling defeated all the time.

In the past 15 years i have never again felt that i was losing my grip .

Do i still feel sorry for myself sometimes...absolutely!

You need energy to continually fight the CH fight so make sure your doc keeps sleep in the equation.

my 2 cents

Do take care

Paul

« Last Edit: Nov 25^th, 2008 at 2:03pm by MITYRARE »

Paul
"car crazy"

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Redd

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Re: Scared to death
Reply #14 - Nov 25^th, 2008 at 6:25pm

I don't know if this has been mentioned to you Father Joe.

Melatonin and benadryl together? 9-12 mg of Melatonin and 2 benadryl tabs at bed time. Sometimes the combo will help you sleep through more night time hits than Melatonin alone.

It did help me for a very long time when the Melatonin itself wasn't helping at all. I took 2 Tylenol PM's at the same time as my melatonin one night because I'd strained my ankle earlier that day.

I was stunned by the differrence. Others have had some success with this as well.

Depending on what happens with your appointment this is still good info to keep in your box of tricks to foil the beast.

All the Best to you.

« Last Edit: Nov 25^th, 2008 at 6:25pm by Redd »

"The goal of life living in agreement with Nature." ~Zeno

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Charlie

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Re: Scared to death
Reply #15 - Nov 25^th, 2008 at 9:51pm

Sorry you have to deal with this horror but after reading here, perhaps you have the patience for this technique. The price is right in any event:

Dr. Wright’s Circulatory Technique:

I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. Think of feeling your pulse in your hand. Increased circulation will result in a reddening and warming of the hands. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Try experimenting between attacks. You will find that it gets easier with practice. Every now and then it will work almost immediately. I lived for those moments.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

I used to try to imagine I was pushing blood away from my neck into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.

Charlie

There is nothing more satisfying than being shot at without result---Winston Churchill

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UnderTheRadar

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Re: Scared to death
Reply #16 - Nov 26^th, 2008 at 4:57pm

Hello Padre, I hope you are less scared today...I wanted to add some scientific-ish backup to what others have said:

I've read in several medical journals that it's the REM sleep that triggers the night clusters, and that several meds and OTC's will put you in a deeper sleep state so that you avoid REM altogether. I'll try to find the documents...I know good ol' Dramamine knocked my @ss OUT last night. And tylenolPM is good, too.

Also, I've been told that if you go to your local fire department and tell them you are having a cluster attack, that they will usually be cool and let you use the O2 (even better when you are armed with some printouts about CH and O2.)

I hope this gives you some relief- physical or mental!

Remember- double-line the foil, shiny side out.

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Mosaicwench CH.com Sponsor Offline www.mosaicwench.com Posts: 3507 Near Milwaukee WI, USA Gender:	Re: Scared to death Reply #17 - Nov 26^th, 2008 at 6:43pm I hope you had success with your Doctor today. I'm a supporter, not a sufferer, but I'm lifting you up as I do daily with all my cluster-friends. Best of luck.
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dionysiusaeropagite

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Columbus, OH
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Re: Scared to death
Reply #18 - Nov 26^th, 2008 at 9:18pm

I love you all dearly.

I went to the Doctor, and GREAT NEWS! Not only was he very familiar and knowledgable about CH, he was more than happy to give me however much O2 at whatever lpm levels I wanted! On top of that, he gave me a handful of free samples of my sweet maxalt to get me through as well.

Interesting Story ... God is definately with us!

So, I go to pick up my o2, and realize I have a bit of an issue. I need a place that is not only in Columbus where I go to school, but also in my home town where I can access it during the Christmas and Summer breaks, and it turns out, there is one!

So, I gots me bunches of O2, from my hometown, and if the tanks go dry, I can drop them off in Columbus! NO HASSELS!

Praise be to Jesus Christ on this holiday of giving thanks!

I love you all for all your offers and support. It means so much to me that you would give so much for me, someone you've never met in person.

God truly bless you forever!

Come to Me all who labor and are heavy burdened, and I will give you rest says the Lord.

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Mosaicwench CH.com Sponsor Offline www.mosaicwench.com Posts: 3507 Near Milwaukee WI, USA Gender:	Re: Scared to death Reply #19 - Nov 27^th, 2008 at 9:04am I'm Thankful you were well taken care of. PF Thanksgiving to all.
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Guiseppi

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Re: Scared to death
Reply #20 - Nov 27^th, 2008 at 11:43am

That's incredible news. Here's hoping the 02 proves as effective for you as it's been for me. Remember, one of the most important points is getting on the 02 as soon as you fel the attack coming on. For me, a delay of 3-5 minutes can double the time it takes to abort the attack.

Wishng you a peaceful, pain free Thanksgiving.

Guiseppi

"Somebody had to say it" is usually a piss poor excuse to be mean.

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on my knees Ex Member	Re: Scared to death Reply #21 - Nov 27^th, 2008 at 12:28pm that is awsome news Father. i am so glad for you, giving thanks for the blessings we recieve is of the utmost importance in prayer and in life. i for one am thankful you found us.
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