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        Cluster Headache Help and Support >> Cluster Headache Specific >> Back from the Neuro
        
(Message started by: KristenF1977 on Dec 11^th, 2007, 3:16pm)

Title: Back from the Neuro
Post by KristenF1977 on Dec 11^th, 2007, 3:16pm

So today's visit went well. He was unhappy to see me of course, but he was ready to attack the beast. He is a real sweetheart, and understands CH's. He has a few patients who experience them. He gave me a script for a 10 day run of Medrol? (sp), a steroid. Also, he gave me 6 boxes of Imitrex injections that he had as samples as well as a script. He also rx'ed Verapamil, 120 mgs. The Imitrex will help big time as my insurance only covers 1 box a month. He was surprised that my headaches were every other day, but plans to attack them agressively.

All in all, I am happy that he understands what we are all going through.

Heres to pain free days ahead. ;)

Title: Re: Back from the Neuro
Post by BaseballCoach on Dec 11^th, 2007, 3:33pm

I will say that my insurance only covered 4 boxes a month when I first started which were fine....My headaches increased drastically and now I struggle getting by with 8 boxes. I had to get my doctor to call the insurance company, explain the situation, and they covered more....Maybe you could try that. My doc is also good about samples. I went yesterday and he gave me 10 shots....That's about 750 bucks and he hands them out like candy! LOL....

HOpe all goes well for you!

Title: Re: Back from the Neuro
Post by yikes-another-one on Dec 11^th, 2007, 3:34pm

hurray for a good and knowing doctor.

sorry you are suffering so frequently.
perhaps the cycle will disappear whil you
are on the steriod.

one year I had my widsom teeth pulled and for three
joyous days, not CH symptoms.
No pain, had energy to burn,
and a strong memory and organizational ability.
wsn't even dsylexic or nuthing.

then, the steroid wore off, and it was
back to carrying pen and paper everywhere,
resting often and saying, "What?" alot.
and the pains came back too....

oh well.
here's cheers to you for the help you are getting,
and cheers for a good five days pain free.

hugs.
TJ

Title: Re: Back from the Neuro
Post by NJRik on Dec 11^th, 2007, 3:35pm

Sounds like you've a great Doc now try for oxygen it will make the shots last much longer.

Title: Re: Back from the Neuro
Post by Guiseppi on Dec 11^th, 2007, 6:19pm

The dosage of verapamil is really low for what people usually need for CH. Obviously work with your doctor but most people don't find relief at the dosage doctors are used to prescribing. Don't be suprised if you end up doubling or tripling that dosage.....again ONLY under the advice of your doctor.

And another push for the oxygen, 30 years and it's still my first line and most effective abortive.

Guiseppi

Title: Re: Back from the Neuro
Post by vietvet2tours on Dec 11^th, 2007, 6:33pm

Yep oxygen.

Potter

Title: Re: Back from the Neuro
Post by E-Double on Dec 11^th, 2007, 11:08pm

verap very low
steroids will give ya a break but verap should prob be higher and once roids where off you will prob get hit again hard...bummer
take nexium or previcid b/c roids will give ya mad reflux
OXYGEN

Title: Re: Back from the Neuro
Post by KristenF1977 on Dec 12^th, 2007, 8:45am

I dont want an Oxygen tank in my house, and I am not going to lug one around with me in my car, to the store, etc. The imitrex shots kick in very fast for me, and I prefer to use them as an abortive. I inject myself, sit for a while, and they go away. Also, the Verapamil is 120mg per tablet I believe. He was concerned because my blood pressure was on the low side. I trust him, and what he has given me has worked for me in the past. I am not big on taking medication, so I will stick with what I am doing. The steroids stopped my cycle completely last time.

I do feel for those who are cronic, and have to be on heavy meds. But, Oxygen and alot of medication is not for everyone.

Title: Re: Back from the Neuro
Post by Sean_C on Dec 12^th, 2007, 9:19am

on 12/12/07 at 08:45:11, KristenF1977 wrote:

I dont want an Oxygen tank in my house, and I am not going to lug one around with me in my car, to the store, etc.

I know its type, but that came across sooooooooo bitchy to me ;;D

Title: Re: Back from the Neuro
Post by seasonalboomer on Dec 12^th, 2007, 9:21am

Kristen,

I understand your trepidation regarding oxygen. But I will ask you to not totally dismiss oxygen. I keep only 2 "E" tanks at a time and they are stored in a closet on a little cart. When I feel a hit, I roll my little set-up out into our guest bedroom (when there are no guests of course), turn on the regulator and within 10 minutes or less -- it is most often gone. The cost for the "oxygen per snuffed out headache" (OPSOH) is far lower than Imitrex and it is just oxygen, no meds at all.

As for its dangers. They are very minimal. If you are not a smoker and try to avoid sitting around a room full of lit candles while you are using it there is virtually no risk at all to its presence in your home. Used for the proper amount of time there is very little risk of any physical issues.

My wife doesn't really like to see the O2 around (because she thinks of "old people" when she sees it) she knows that the relief it has offered me is a miracle compared to having me roll around on the floor in pain. So, in the end, she gets it, I respect her and put it away when I'm done and the only impact is that I only have to use Imitrex about 1/5 of the time I get CH's.

Scott

Title: Re: Back from the Neuro
Post by KristenF1977 on Dec 12^th, 2007, 10:02am

on 12/12/07 at 09:19:36, Sean_C wrote:

I know its type, but that came across sooooooooo bitchy to me ;;D

Theres nothing bitchy about it. It's a personal preference, and I prefer not to use Oxygen. Just because it works for everyone, dosent mean that I can't choose not to use it. What I do for my headaches works fine for me, and it has in the past, without Oxygen.

Whats wrong with me not wanting to use it? And have to wheel around Oxygen with me?

Don't judge me because of my decisions.

Title: Re: Back from the Neuro
Post by Kevin_M on Dec 12^th, 2007, 10:12am

I agree with Scott (seasonalboomer) here concerning oxygen.

Quote:

the relief it has offered me is a miracle compared to having me roll around on the floor in pain. So, in the end, she gets it, I respect her and put it away when I'm done and the only impact is that I only have to use Imitrex about 1/5 of the time I get CH's.

I know you have said this...

Quote:

Oxygen and alot of medication is not for everyone.

and this:

Quote:

I am not big on taking medication, so I will stick with what I am doing.

Don't look now, a few meds are already a part of your treatment, too.

on 12/12/07 at 08:45:11, KristenF1977 wrote:

The imitrex shots...

the Verapamil...

The steroids...

Oxygen would be a good consideration, especially with the verap that low, the steroid wears off, and samples dry up and insurance is one box a month.

Give it closer thought.

Title: Re: Back from the Neuro
Post by seasonalboomer on Dec 12^th, 2007, 10:16am

on 12/12/07 at 10:02:55, KristenF1977 wrote:

Sorry sweetie. A lot of people come here and look for options and opinions on what seems to work for each other. I, for one, learned a lot here, took some advice and my life was changed for the better. So pardon us for wanting to contribute more ideas to your seemingly complete treatment regimen.

Also, you don't have to wheel it around. For me, for instance, a lot of my hits happen at home, where it is easy for me to access O2. I choose to not take it with me and rely upon Imitrex for out-of-home hits if they happen. So its not as big a deal as you portray. Just another tool to make life with CH manageable.

Scott

Title: Re: Back from the Neuro
Post by KristenF1977 on Dec 12^th, 2007, 10:19am

I am well aware that I am taking medications, but like I said, my blood pressure was low, and the dr was concerned. Just because I have these headaches, does not mean I should jeopardize my health because of them by taking medication that can dangerously lower my blood pressure.

None of us are happy we have these headaches, but I think people need to be a little more respectful when it comes to the way people choose to handle it. I did not use oxygen last cycle and I made it through. I plan to do the same this time.

Title: Re: Back from the Neuro
Post by KristenF1977 on Dec 12^th, 2007, 10:24am

on 12/12/07 at 10:16:46, seasonalboomer wrote:

Yes, but it seems that on this board, if you dont use oxygen, you are not doing the right thing.

What I have done in the past works for me. I was in cycle last time for 2 weeks, and although I know many people here get hit alot worse than I do, and more frequently, I still suffer from these headaches, and do what's best, and what has worked, for me.

I get hit in the middle of the night. When this wakes me out of a deep sleep, I walk downstairs, get my needle, and inject myself. I sit on the couch, and wait for it to go away, and it does.

I have plenty of Imitrex to get me through this cycle, and will use it as needed. It works for me. End of story.

I appreciate all of the advice, I really do. That's why I come here.

Title: Re: Back from the Neuro
Post by Kevin_M on Dec 12^th, 2007, 10:26am

on 12/12/07 at 10:19:34, KristenF1977 wrote:

people need to be a little more respectful when it comes to the way people choose to handle it.

Certainly. This was just a little curious, that's all.

Quote:

I am not big on taking medication, so I will stick with what I am doing.

Quote:

The imitrex shots...

the Verapamil...

The steroids...

Just commenting to think ahead if the verap should be ineffectual when the steroid wears off. Imitrex quantities can be limited.

*I didn't catch your previous post when writing this.

I hope it is a short cycle. :)

Title: Re: Back from the Neuro
Post by sandie99 on Dec 12^th, 2007, 2:45pm

I'm glad that your neuro is concerned about your BP; when I used verapamil, mine dropped a lot when I was taking a low dose of verap. In fact, I nearly fainted several times.

Another neuro upped my dose and wonder of wonders; my BP didn't drop! :)

I believe that a lot of people mentioned oxygen to you, because it works for so many people and comes with less amount of side effects. I know that it doesn't work on everyone, but personally, I'd try it, if my neuro would allow me to do that (doesn't believe in 02). It's one thing to know that it doesn't do any good than not ever giving it a chance. :) You know yourself what works for you, so trust in that, but keep your mind open, ok? I've seen myself how treatments quit working, and in that situation it's useful to have next option ready.

I hope that this will be a short cycle and followed by long remission! :)

PF days,
Sanna

Title: Re: Back from the Neuro
Post by Ray on Dec 12^th, 2007, 3:18pm

Dear Kristen:

A few things. First I would like to welcome you here to the nut house. We tend to be like a family and have strong opinions. We really, truly are trying to be helpful, rather than judgemental.

My father once told me (Hi Guiseppi!) that the wonderful thing about advice is that you don't have to take it.

I too use oxygen so that I don't need to take the Imitrex shots as often. I've used Imitrex since 1993 when it became available in the US. Since then, I've had multiple thousands of shots, and it gets old, believe me.

If you don't want to use oxygen, I can respect that. Please keep it in the back of your mind should Imitrex fail to be a complete abortive solution. Others here have had good results from energy drinks that have 1000 mg of taurene and caffeine, if used quickly. Many of us drink coffee as an abortive. There's been discussion of other alternatives as well. One or more of these may help.

There's information on the OUCH website about how to get insurance to cover more Imitrex, and there are "patient assistance programs" through GlaxoSmithKline and others that can pay for more.

Please think of us like family, we may provide advice that you don't want to hear, and don't intend to follow, but it's the advice of people who learned the hard way, over many years. We truly want the best for you.

Thanks for reading,

Ray

Title: Re: Back from the Neuro
Post by KristenF1977 on Dec 12^th, 2007, 3:42pm

Thank you so much everyone, and I will definitely keep an open mind.

Title: Re: Back from the Neuro
Post by E-Double on Dec 12^th, 2007, 5:21pm

Take a breath hun!

Title: Re: Back from the Neuro
Post by Sean_C on Dec 12^th, 2007, 6:37pm

on 12/12/07 at 10:02:55, KristenF1977 wrote:

Where did I judge, I simply stated that you seemed bitchy. That would be more stereo "typing" my dear. And I still feel that way, but thats unimportant, this is an open forum.

I have no opinion whatsoever regarding your prescription and/or nonprescription uses for your headaches, rest assured.

I wish you well.

Sean.................................

Title: Re: Back from the Neuro
Post by Linda_Howell on Dec 12^th, 2007, 6:59pm

I, personally would never ever put a steroid in my body. Nasty stuff. I look at my 02 bottle with a combination of love and respect. Mine is on a portable cart and I keep it in the back-seat of my car. If I get hit while I'm not at home I simply go to my car and huff it for 20 mins. and I'm able to continue doing what I was doing. It's cheap, effective, safe and a WHOLE lot nicer to the human body than steroids or Trex.

These people here are just trying to help. [smiley=huh.gif]

Title: Re: Back from the Neuro
Post by vietvet2tours on Dec 12^th, 2007, 8:15pm

on 12/12/07 at 09:19:36, Sean_C wrote:

I know its type, but that came across sooooooooo bitchy to me ;;D

Well ya can lead a horses patoot but ya can't lead em far.
Potter

Title: Re: Back from the Neuro
Post by thebbz on Dec 12^th, 2007, 9:00pm

Imitrex shots= 70 bucks each.
O2=10 to 20 bucks each.
:-X

Title: Re: Back from the Neuro
Post by rolo65 on Dec 12^th, 2007, 9:14pm

That M tank next to my bed is my best friend almost every night. It is faster and safer than any of the drugs that can cause heart problems. If you don't like the tank don't feel alone because the beast doesn't like the O2 ether. [smiley=laugh.gif]

PS: I keep 2 E's in the truck, but don't get hit in the day much now that I'm on the lithium (doing good at 450mg a day)! :P

Title: Re: Back from the Neuro
Post by Charlie on Dec 12^th, 2007, 11:13pm

Welcome to the madhouse. I hope you give oxygen a try though. The worst thing that can happen is that it won't work and it might be nice as an option at home anyway.

Here is what works for me and it's only harmful to the beast:

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

Title: Re: Back from the Neuro
Post by KristenF1977 on Dec 13^th, 2007, 8:57am

Now I am getting chastised and ridiculed for not using Oxygen.

Great support board.

::)

Title: Re: Back from the Neuro
Post by KristenF1977 on Dec 13^th, 2007, 8:59am

on 12/12/07 at 20:15:40, vietvet2tours wrote:

Well ya can lead a horses patoot but ya can't lead em far.
Potter

Nice, very nice.

Title: Re: Back from the Neuro
Post by George_J on Dec 13^th, 2007, 9:17am

on 12/13/07 at 08:57:29, KristenF1977 wrote:

Now I am getting chastised and ridiculed for not using Oxygen.

Great support board.

::)

You always this touchy?

Nice drama--and I'd rate that flounce as a "5". Come back when you grow up a little.

Best,

George

Title: Re: Back from the Neuro
Post by E-Double on Dec 13^th, 2007, 8:05pm

I offered this lady a hand 3 years ago being that she is literally 15 minutes from me.

Never went further and she disappeared.
She obviously came back when in pain.
a damn shame that one can be so stubborn.

/i guess things are not that bad.

hope she has an easy go of it.

Title: Re: Back from the Neuro
Post by txbeck on Dec 13^th, 2007, 11:38pm

Wow! This is really sad. I suspect she may be in even more emotional pain than physical pain, and I'll bet that has little or nothing to do with CH.

Some day, when the beast hits hard enough, though, she may remember and give oxygen a try despite her stubborn pride.

Meanwhile there may be half a dozen other lurkers reading who didn't know about the miracle of O2 for CH. A year ago I was one of them.

Title: Re: Back from the Neuro
Post by KristenF1977 on Dec 14^th, 2007, 8:37am

OK, so since I do not use Oxygen, I have been labeled as follows:

Stubborn
Sad
I have emotional problems
And I am a horses ass

Now tell me, is that fair? I have seen in other posts that members are chastised for not using the same methods of treatment as others. Tough crowd here, seriously.

And Erik, I really appreciate the offer of help since you are so close to me, but honestly, why are you being so nasty as well?

I know that you all "know" each other, but I find it pretty sickening that some of you felt the need to gang up on me, call me names, and make me feel unwelcome here because of a preference in treatment which as I have stated worked for me in the past, and has worked this time.

The advice, and the sharing of treatments that work for everyone is much appreciated, and considered but quite honestly I am a little sad regarding the things that were said of me. It really dosen't help matters at all.

Thank you all for the advice, and well wishes. I was happy to share that my visit with my doctor went well, and then some of you took a shit on me.

Thanks

Title: Re: Back from the Neuro
Post by Kevin_M on Dec 14^th, 2007, 9:17am

Kristen,

I think your initial statement about oxygen set the tone a bit, a preconceived resistance.

Quote:

I dont want an Oxygen tank in my house, and I am not going to lug one around with me in my car, to the store, etc.

Filling in the blank as to "why" may have varied. And you forgot bitchy, too. ;)

Quote:

Stubborn
Sad
I have emotional problems
And I am a horses ass

A lot of people here find oxygen very, very useful and are using it, homes and elsewhere.

Quote:

None of us are happy we have these headaches, but I think people need to be a little more respectful when it comes to the way people choose to handle it.

Your first statement may not have seemed so respectful toward those using it, sometimes that can be returned. The thread changed at that point. ;)

Feel welcome though. :)

Title: Re: Back from the Neuro
Post by vietvet2tours on Dec 14^th, 2007, 10:18am

on 12/14/07 at 08:37:37, KristenF1977 wrote:

She's back from bein a guest.Who might ya be today?

Potter

Title: Re: Back from the Neuro
Post by seasonalboomer on Dec 14^th, 2007, 10:18am

Kristen,

My goodness. I'm not sure which planet you live on but you are interacting with people on an internet message board. A board you are quite familiar with. Yet, when someone responds to you, some in a constructive manner and some critical (because to be honest, you were kind of critical in your initial statement about oxygen) you rail on about being "shat" upon.

Advice to you, take two fingers and pinch your arm loosely. You will note the space that still exists between your fingers of the gathered epidermis. Recognize this as the "thickness of your skin" and embrace it as a concept when dealing with internet message boards.

For many of us O2 has been a lifechanging tool. When someone on post #2 says "I don't want an oxygen tank in my house" our initial reaction is "what do you mean? how could you not want this beautiful gift from god in your house?" Right, wrong or indifferent it is our reaction.

Sorry, I thought you received a lot very constructive information on this thread. Sorry you're too defensive to understand it.

Scott

Title: Re: Back from the Neuro
Post by KristenF1977 on Dec 14^th, 2007, 11:06am

on 12/14/07 at 10:18:24, vietvet2tours wrote:

She's back from bein a guest.Who might ya be today?

Potter

Wow, you are just miserable, huh?

Title: Re: Back from the Neuro
Post by vietvet2tours on Dec 14^th, 2007, 11:13am

on 12/14/07 at 11:06:58, KristenF1977 wrote:

Wow, you are just miserable, huh?

Nope I don't throw hissy fits. I followed the advice of the smart folks here and got oxygen.

Potter

Title: Re: Back from the Neuro
Post by brewcrew on Dec 14^th, 2007, 11:56am

I figured this thread could use a little infusion of sanity from a thread entitled "Attitude" on the General Board:

Quote:

Brew made a comment about my tagline on another thread. I wish that I was the author of that quote but it actually is just a small part of something Charles Swendoll wrote at one time.

It is something I have tried to live by all these years that I fought with clusters. We say the same thing in many ways on here about not letting the beast rule our lives. To live life in the fullest the best we can. And our attitude is so impotant in this endeavor. Anyway it speaks to me and I thought I would post the entire paragraph:

The longer I live, the more I realize the impact of attitude on life.

Attitude, to me, is more important than facts. It is more important than the past, than education, than money, than circumstances, than failures, than successes, than what other people think or say or do. It is more important than appearance, giftedness or skill. It will make or break a company... a church... a home.

The remarkable thing is we have a choice every day regarding the attitude we will embrace for that day. We cannot change our past... we cannot change the fact that people will act in a certain way. We cannot change the inevitable. The only thing we can do is play on the one string we have, and that is our attitude... I am convinced that life is 10% what happens to me and 90% how I react to it.

And so it is with you... we are in charge of our attitudes.

Title: Re: Back from the Neuro
Post by E-Double on Dec 14^th, 2007, 6:49pm

Kristen hun,

I'm not being nasty.
We are all stubborn especially to one who may be suffering needlessly when there are easy methods to feel better.
So many are stubborn in our persistance.
I still think a damn shame but will persist every time you come around at offering help to you.

all my thoughts are with ya.

What i would like to offer you is a free tank to borrow so you can try it and then decide if not then so be it and everyone will back off.

I have done this for a few who live locally.

whatever you need.

stick around

hugs,

eric

Title: Re: Back from the Neuro
Post by vietvet2tours on Dec 14^th, 2007, 6:54pm

on 12/14/07 at 18:49:32, E-Double wrote:

Yer a good man charlie Brown.

Potter

Title: Re: Back from the Neuro
Post by txbeck on Dec 14^th, 2007, 10:45pm

It breaks my heart to think of how completely it would have changed not only my life, but that of my children, my husband, even my grandchildren and other friends and family if I had known about and had available a simple tank of oxygen when I was young and just starting down this road. Doctors offered me all kinds of narcotics, weird diets, and other totally ineffective treatments. I even went through electro-shock treatments when doctors were convinced that what caused my headaches was depression.

That Kristin, or anyone, would cavalierly reject oxygen out of hand, without even giving it a try, despite the testimony of so many of us who have walked down the long dark path of CH, brought tears to my eyes. No one is forcing you to do anything, Kristen, but you asked for advice. You were given excellent advice. You rejected it. Then you whined about it.

The people here are not in the business of protecting your delicate sensibilities. We are here because we, or someone close to us, are CH sufferers and we have had to learn the hardest way possible what works and what does not. We don't want anyone else ever to go through what we have been through, not even ungrateful young women with chips on their shoulders.

Title: Re: Back from the Neuro
Post by nani on Dec 14^th, 2007, 11:09pm

on 12/12/07 at 10:19:34, KristenF1977 wrote:

I am well aware that I am taking medications, but like I said, my blood pressure was low, and the dr was concerned. Just because I have these headaches, does not mean I should jeopardize my health because of them by taking medication that can dangerously lower my blood pressure.

None of us are happy we have these headaches, but I think people need to be a little more respectful when it comes to the way people choose to handle it. I did not use oxygen last cycle and I made it through. I plan to do the same this time.

Interesting... you say we shouldn't have to jeopardize our health...but you'd rather take steroids, imitrex and verapamil than oxygen. Seems like a no brainer to me... oxygen does not jeopardize our health.

Why do you think you have to wheel it around with you? Are you a mail carrier? One tank at home and one in the car is all you need. If you only get hit at night, one at home (in the closet) is plenty.

You've been given excellent advice. From people who have decades of combined experience.

Good luck and pf wishes to you, nani

Title: Re: Back from the Neuro
Post by KristenF77 on Dec 15^th, 2007, 7:41am

Thank you to everyone for still being very gracious to me. At the advice of everyone here, I called my neuro, and picked up a small tank today from the surgical supply/pharmacy. I have been PF for 4 days now, but will try it when I get an attack.

I apologize if I sounded bitchy, but I guess I just felt like I didnt need to use it, if everything else worked. But, you all seem to know what you are talking about and I would be stupid not to try it, even just once.

Again, my apologies to all.

Title: Re: Back from the Neuro
Post by Bob_Johnson on Dec 15^th, 2007, 8:00am

IF someone chooses to not accept your advice--move on. You cannot force others to believe: just look at the culture/religion wars which have redeveloped in our whole country. There are lessons here on how to destroy a civil society
__________________________________

Part of a message I posted on another site about dealing with uncivil people & messages:

"5. I'd suggest that you work from a position of "intelligent selfishness", that is, don't read or respond to people who you find troublesome or offensive. I suspect that most of us can get the tone of a message from reading a few words. If it's going in the wrong direction, scroll past/delete it. "Selfishness" says, don't read the whole thing and think about a response for this will only arouse distress or some level of internal upset. Responding won't change the other person and your effort will add to your frustration. "Selfishness" says, engage with those who are civil, don't encourage the uncivil by responding to them.

"6. This is not an argument for avoiding difference. An all male group (on the subject of prostate cancer--talk about a subject for passion) I belong to often has intense debates. For the most part, they are based on medical information, informed judgments, and wrestling with evaluations of medical information. Intense, but generally respectful.

"Problems arise when the issue moves from the issue to the person. Folks who personalize, either what others write or what they say in response, will tend to move into interpersonal conflict. The best single way to avoid uncivility is to use discipline is keeping your words/thoughts on the topic, not on the other person's motives, intentions, etc. (A disadvantage of electronic communications is that it allows for impulsive behavior. Self-discipline, or an attitude of civility, would be served by typing the message, then putting into the "drafts" box until you cool down. It's interesting how many of my messages don't make it past this point!)"

Title: Re: Back from the Neuro
Post by Bob_Johnson on Dec 15^th, 2007, 8:04am

Several of us have had excellent results with this one. Has the advantages of being a pilll, cost-per-dose is less than Imitrex by a long shot and, it aborts an attack in 10-20 minutes. Your doc can give you some samples. With one or two doses, you will know whether it works 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.

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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.

Title: Re: Back from the Neuro
Post by Kevin_M on Dec 15^th, 2007, 8:43am

Presently you're on a steroid, Kristen. A lot of concern for you is for when that 10 day run of Medrol is through, your preventive level of verap would probably be ineffective. The cycle could end for you at that point or carry on, a lot is unpredictable if depending on past treatment success, changes are the norm.
Let us know, and there is a ton of help for using oxygen if you need the right equipment and method. If you don't like using medications, oxygen is pretty amazing.

:)

ps. I know you have trex, but even with a stash, if things turn undesirable, you start worrying fast about running out. Oxygen will always be there for you.

Title: Re: Back from the Neuro
Post by KristenF77 on Dec 15^th, 2007, 9:05am

E- Thank you so much for the offer. It means alot to me that you are willing to do that for me.

I guess alot of this is stress related, my stubborness that is. I just had the worst year of my life. I watched my father die from cancer, and it has left me empty inside. Then when I got my first headache last week, it really threw me. My dad was the one I always called when I got hit. Any time of day or night, he would sit there and listen to me cry. When I lived home, he would hold me as I rocked back and forth and sobbed to him. It just seems so f*cked up that he is gone, and these headaches started so soon after he died. It makes me miss him all the more, if that makes any sense whatsoever. I actually reached for the phone the other night at 3:30 am, and had to remind myself he was gone, and I had to go at this alone. My husband is here, but I have only had one cycle since we have known each other, and as much as he sees I am in pain, I am not sure he "gets it". Thank you again for all the advice, and being a great bunch of people. I wish you all many pain free days, and happiness.

Title: Re: Back from the Neuro
Post by Kevin_M on Dec 15^th, 2007, 9:15am

You're never alone here. People here "get it", and know the pain.

:)

Title: Re: Back from the Neuro
Post by BarbaraD on Dec 15^th, 2007, 9:24am

Kris,

I'm all for "what works - do it!" Me, I keep coffee on and Red Bull handy - frozen peas handy and take my melatonin at night (that did stop the night hits).

Took imitrex for several years, but switched to cafergot years ago and don't have the side effects of trex.

I'm chronic so if I hit a high cycle I take the taper pack of steriods and raise my topamax.

Can't take the verap cause it lowers my BP too much, but if it works for others, more power to them.

I respect anything that works for others and understand where you're coming from. I'm glad you found something that works for you. As someone said, advice is great - you can take it or leave it.

Over the years I've found that we're all different and we all react differently to almost everything. I swear by topamax where most everyone else calls it dopeymax, but I've never experienced those side effects (guess I was just dopey to start with).

Guess what I'm trying to say is everyone here is trying to be helpful - just take it with a grain of salt. We all want to stop the pain and if we find something that works for us - we want to share it with everyone.

Me, I HATE cafergot so much I'll wait until I'm almost at a 10 before I'll break down and take a pill, but I hate the pain worse, so I do it. We all have our little quirks.

Hope this cycle for you is short.....

Hugs BD

Title: Re: Back from the Neuro
Post by vietvet2tours on Dec 15^th, 2007, 11:08am

Good on ya.

Potter

Title: Re: Back from the Neuro
Post by Ray on Dec 15^th, 2007, 12:35pm

Kristen:

Welcome to the family. Please be willing to give the O2 a while and read up about it. It seems to work best at a high flow rate of 15 liters per minute by non-rebreather mask.

Use the search feature or browse the forums here about the best use.

Most of all, we understand it and get it. Lean on us 24 hours a day. It's cheaper and better than therapy!

Ray

Title: Re: Back from the Neuro
Post by E-Double on Dec 15^th, 2007, 2:42pm

call me...check your PM for my #