Hi it's me again.  Been awhile.  I got hit twice with a very light CH.  Not full blown.  I've had this bad neck since January and started to get headaches.  So I went to a chiropractor and had him make some adjustments.  I haven't had any episodes since.  Do you think this is coincidence?  Or maybe I was just having migraines?  I've never had migraines before so I don't know the difference.  All I know was that it was very similar to CH, stuffy nose, pain on right side into my teeth.  Not as bad as usual but definitely felt like a CH.  I'm going again today to get another adjustment.  The chiropractor said that it could help cluster headaches.

Also, do you think misalignment could trigger CH?

Yes.
No.
Kinder gentler Potter

Potter wrote on Apr 1^st, 2009 at 4:00pm:

Yes. Kinder gentler Potter

Huh?  

Lissa wrote on Apr 1^st, 2009 at 4:03pm:

Potter wrote on Apr 1st, 2009 at 4:00pm: Yes. Kinder gentler Potter Huh?

Sorry I was unclear.  I fixed it.

   Kinder gentler Potter

Sorry, that doesn't make any sense to me.

Lissa wrote on Apr 1^st, 2009 at 3:48pm:

Hi it's me again.  Been awhile.

Hey Lis,

Nuthign I know about your questions, but, if remembering right, hoping things have otherwise been ok with new little family from last time.  :)

and you had a cool websight once, too.

Kevin_M wrote on Apr 1^st, 2009 at 4:17pm:

Lissa wrote on Apr 1st, 2009 at 3:48pm: Hi it's me again.  Been awhile. Nuthign I know about your questions, but, if remembering right, hoping things have otherwise been ok with new little family from last time.  :) and you had a cool websight once, too.

Hi Kevin.  Surprised you remembered me.  It's been like 2 1/2 years Cluster Free!  How are you doing?          

A pretty face seems easy to remember.    ::)    ;)     :-*

That's a good long streak!  


I'm still rollin' with the pun-chez, keeping a foot in the door here.


Good to see from you stopping back from time to time.      :)

Here for you if there's any sequel to "The Return of (censored)"

Awww.  You're sweet.  :)

Glad to hear that you're doing well.  

Lissa wrote on Apr 1^st, 2009 at 4:07pm:

Sorry, that doesn't make any sense to me.

You asked two questions.  I answered two questions.

         Kinder gentler Potter

The neck pain could have begun to trigger something, the chiro's adjusting set it back before it could get a foothold again.  Maybe.

You'll have to see in time.       :)

your tagline:


Quote:

Episodic cluster survivor since 1995 at age 16.

Means your entering the otherworldly big 3Oh! this year.  Youth is fun, you got the all good times of the 30's still ahead.  That's livin' grand.   8-)

heyyy, come to think of it, I may have seen your birthday roll by not long ago.  

hey lissa,

i asked basically the same question a few days ago. i have been going to a chiro and he tells me that there is nothing he can do for the CH's.  he does say he can help with the neck stiffness and upper back, shoulder kind of pain and stiffness.  sorry!  going to the chiro has helped ease the pain in my neck and upper back caused by contortions you get in when you have a big hit.

randall
boaz, alabama

Kevin_M wrote on Apr 1^st, 2009 at 4:57pm:

Means your entering the otherworldly big 3Oh! this year.  Youth is fun, you got the all good times of the 30's still ahead.  That's livin' grand.   8-) heyyy, come to think of it, I may have seen your birthday roll by not long ago.

Yep.  I turn 30 in June.  :(

bigmenawa wrote on Apr 1^st, 2009 at 5:35pm:

hey lissa, i asked basically the same question a few days ago. i have been going to a chiro and he tells me that there is nothing he can do for the CH's.  he does say he can help with the neck stiffness and upper back, shoulder kind of pain and stiffness.  sorry!  going to the chiro has helped ease the pain in my neck and upper back caused by contortions you get in when you have a big hit. randall boaz, alabama

Funny, an hour before my appointment I started feeling a shadow, but nothing ever came.  I got adjusted and feel nothing now.  I guess I'll just have to wait it out and see if it can prevent another episode.  I hope so!  The chiropractor said he doesn't have much experience with CH, but rather migraines and he has found some relief for people with migraines.  

If I get hit bad (which I hope doesn't happen) I'm not going to screw around though.  I'm going right on Verapamil.  God I hope I don't get hit.  :(  Just those few little shadows I've had have been intolerable with a 2-year old.  It's so hard to take care of him when I'm down, you know?

Potter wrote on Apr 1^st, 2009 at 4:40pm:

You asked two questions.  I answered two questions.          Kinder gentler Potter

Actually, I asked three questions.  And you did not indicate which questions you were replying to.

Hey Lissa...a couple things....most have no success using chiropractics to deal with CH. Great for many of the secondary issues........stiff neck, shoulders and back......all the stuff we screw up fighting the beast.....but doesn't have any effect on our screwed up hypothalamus!

That being said, do you have oxygen? The verapamil is a great prevent, many have good success using that to reduce hits, but nothing beats oxygen for knocking an attack down for me!

Sorry the bastard hasn't lost your address....and sigh......to be 30 again!!!! ;D ;D Such a distant memory for many of us!

Joe

Guiseppi wrote on Apr 1^st, 2009 at 8:17pm:

Hey Lissa...a couple things....most have no success using chiropractics to deal with CH. Great for many of the secondary issues........stiff neck, shoulders and back......all the stuff we screw up fighting the beast.....but doesn't have any effect on our screwed up hypothalamus! That being said, do you have oxygen? The verapamil is a great prevent, many have good success using that to reduce hits, but nothing beats oxygen for knocking an attack down for me! Sorry the bastard hasn't lost your address....and sigh......to be 30 again!!!! ;D ;D Such a distant memory for many of us! Joe

I have been on oxygen and it helps but I prefer Imitrex simply because it's a lot easier to carry around, it's cheaper and it won't blow up.   ;)  Verapamil has always worked for me, but it usually takes a good 2 weeks to feel the effects.  

After reading some material, I think you're right that chiropractors can't stop clusters, but I wonder if something in my neck could have triggered the shadows.  Just like alcohol, smoking and breathing, why not misalignment.   :)  It's all connected to the spine somehow.

Oh make no mistake.....in another hundred years or so we'll have our hands around all the issues surrounding CH...and will understand them! ;D Until then, if something helps you, don't spend too much time sweating the why! Enjoy the pain free time. ;)

Joe

PS....I use lithium as my prevent, and have the same 10-14 day waiting period while I wait for my body to absorb enough of it to act as a prevent. I've always used a 10 day prenisone taper to get me through that period. Might be worth talking to the doc about!

Lissa wrote on Apr 1^st, 2009 at 9:01pm:

I prefer Imitrex simply because it's a lot easier to carry around, it's cheaper and it won't blow up.

Oh the foolish comments of those that have NO IDEA what they are talking about!  CHEAPER???  BWAHAHAHAHAHA!!!

And blow up?  Oh yes, I read about that happening EVERY day .... And at least THREE times on every Tuesday!

Yup, it sure is dangerous!  <dripping in sarcasm>


Lissa wrote on Apr 1^st, 2009 at 9:01pm:

Just like alcohol, smoking and breathing, why not misalignment.

WOW!!!  BREATHING is a trigger for clusters??

It is amazing what I learn here!

No wonder we all get hit!  We all BREATHE!!!  

OK, everyone, here is the new cure!!!  No more breathing!  It will cure your clusters!

Oh boy....I'm with Chuck here.  Some of the things we have heard here are almost laughable.   ;D

Lissa, there is a clusterhead here by the name of Doug Wright.  He IS a Chiropractor and HE says that Chiropratotic will NOT help  cluster headaches.   To me and others who know him...THAT is very telling.


Quote:

Or maybe I was just having migraines?  I've never had migraines before so I don't know the difference.

So what makes you think it might be Migraines then?  I'm confused.


Not trying to speak for Potter but I believe the "yes" answer was in response to this question:

 
Quote:

I haven't had any episodes since.  Do you think this is coincidence?

and the "NO' answer, was in response to this question;


Quote:

Also, do you think misalignment could trigger CH?

         In all of our desire to find a cause or an answer we sometimes grasp at the proverbial straw.  Nothing wrong with that if we are logical in our approach and do not go off in a direction that will take us away from helping ourselves.  For instance...Imitrex is NOT cheaper than 02.  No way...no how.  (6 nasel sprays cost me 212.00.  An E-tank cost me 10.00)


Quote:

Just like alcohol, smoking and breathing, why not misalignment.

Alcohol is a trigger.  It is NOT the cause of our condition.  Smoking...while bad for our general health, is not a cause, not is it even a trigger.  Breathing...well...come-on.... :)

You seem to have been here before but I don't remember you...hope you stick around and read up on the latest around here and welcome back.

Linda

May help with cervicogenic headache.

One of my Sisters gets migraines. Her insurance company sends her a box of Imitrex jabs every two weeks in the mail like clockwork - no copay. They don't cover O2 - effectively making Imitrex cheaper for her.

I took the "breathing" part as joke - maybe I'm dense.

Marc

ClusterChuck wrote on Apr 2^nd, 2009 at 12:08am:

Oh the foolish comments of those that have NO IDEA what they are talking about!  CHEAPER???  BWAHAHAHAHAHA!!! And blow up?  Oh yes, I read about that happening EVERY day .... And at least THREE times on every Tuesday! Yup, it sure is dangerous!  <dripping in sarcasm>

It is cheaper because my insurance doesn't cover oxygen.  Regarding my other comment about blowing up, that is scarcasm.  :)


Lissa wrote on Apr 1^st, 2009 at 9:01pm:

WOW!!!  BREATHING is a trigger for clusters?? It is amazing what I learn here! No wonder we all get hit!  We all BREATHE!!!   OK, everyone, here is the new cure!!!  No more breathing!  It will cure your clusters!

I was being scarcastic, again.  Sorry.

Marc wrote on Apr 2^nd, 2009 at 11:48am:

One of my Sisters gets migraines. Her insurance company sends her a box of Imitrex jabs every two weeks in the mail like clockwork - no copay. They don't cover O2 - effectively making Imitrex cheaper for her. I took the "breathing" part as joke - maybe I'm dense. Marc

It was supposed to be a joke.  Obviously breathing does not trigger CH.   ::)

Linda_Howell wrote on Apr 2^nd, 2009 at 12:41am:

Oh boy....I'm with Chuck here.  Some of the things we have heard here are almost laughable.   ;D

Glad someone got a laugh!  :)


Quote:

So what makes you think it might be Migraines then?  I'm confused.

I guess I was hopeful that it was a migraine because migraines can be fixed by chiropractors most of the time.  My husband has had much relief.  I don't know what a migraine is like, so it was just a hopeful thought that came to mind.


Quote:

In all of our desire to find a cause or an answer we sometimes grasp at the proverbial straw.  Nothing wrong with that if we are logical in our approach and do not go off in a direction that will take us away from helping ourselves.  For instance...Imitrex is NOT cheaper than 02.  No way...no how.  (6 nasel sprays cost me 212.00.  An E-tank cost me 10.00)

We all prefer different treatments, obviously.  I prefer imitrex.  I don't think they're is anything wrong with that.  It is cheaper because my insurance does not cover O2.


Quote:

Alcohol is a trigger.  It is NOT the cause of our condition.  Smoking...while bad for our general health, is not a cause, not is it even a trigger.

Obviously it is not the CAUSE.  I've had this beast for over 10 years, I know that.  Alcohol and cigarette smoke are huge triggers for me.  I stay far away from both of them when in a cycle.  


Quote:

You seem to have been here before but I don't remember you...hope you stick around and read up on the latest around here and welcome back.

Thanks Linda!

I remove my post, because I don't want to be guilty of driving someone off.

:-X

Chuck

ClusterChuck wrote on Apr 2^nd, 2009 at 3:51pm:

You don't care about the rebounds and possible damages to your body that Imitrex can cause?  You don't want to use something that is SAFE, NATURAL, cheap and EXTREMELY effective?

Actually, no I don't care about the damage to my body.  When I'm in that kind of pain, I will do what it takes to stop it.  


Quote:

Your insurance doesn't cover oxygen?  BULLSHIT!  You just have to fight them for it, and find the right way to code it.  Hell, paying for oxygen out of your pocket is probably cheaper than your co-pay is for the Imitrex.

Stop acting like an idiot.  You don't know my insurance.  For your information, I have a VERY high deductible.  


Quote:

And chiropractors can stop migraines?

Yes, my husband has migraines and he gets a lot of relief from chiropractic care.


Quote:

OK, I know when I have run up against a mind that is closed to the truth.  I will go help someone that actually wants help.

You're an ass.  Don't respond to my posts if you can't be nice.  

In order for this site to be run the way DJ envisions it should be he has put in a standard of conduct for everyoen to read before they post.   Please read it since you haven't been here in a while.

 
Quote:

CH.com Standard of Conduct Feb 2nd, 2009, 8:09pm     ClusterHeadaches.com is going to live by a new set of "standards" that involve integrity and respect.  These standards have been added to the registration agreement so every new member who joins from now on will know what the expectations are when they create their profile. This message board is not a democracy, at best it is a benevolent dictatorship.  As such, users of this site will be held to a prominent standard of integrity and respect. Debate is welcome (and encouraged), but attack ideas and opinions; not personalities.  Note that putting an "in my opinion" type of qualifier on a violating statement does not change the fact that the statement violates these standards. Personal attacks or threats against other board members will NOT be tolerated. Racist, sexist, Anti-Semitic remarks, or hate speech will not be allowed. Calling a member 'troll' or using 'troll' or similar emoticons is considered a personal attack.  Abuse of the Private Message (PM) privileges, harassment, stalking, etc... will not be tolerated. As a general guideline, the first instance of a member violating these standards will result in a “lock down” of one week during which the member will not be allowed to post on the message board or send/receive PM’s.  A second instance will result in a “lock down” of one month.  A third instance will result in immediate and permanent banning. In order to protect and preserve the overall health and well-being of the site, the owners/administrators reserve the right to remove any post or user from our community at our sole discretion and without explanation.

Calling people names as you did to Chuck, steps over that line.  As DJ says...attack the idea or opinion...NOT the person.  

ClusterChuck wrote on Apr 2^nd, 2009 at 12:08am:

Lissa wrote on Apr 1st, 2009 at 9:01pm: I prefer Imitrex simply because it's a lot easier to carry around, it's cheaper and it won't blow up.   Oh the foolish comments of those that have NO IDEA what they are talking about!  CHEAPER???  BWAHAHAHAHAHA!!! And blow up?  Oh yes, I read about that happening EVERY day .... And at least THREE times on every Tuesday! Yup, it sure is dangerous!  <dripping in sarcasm> Lissa wrote on Apr 1st, 2009 at 9:01pm: Just like alcohol, smoking and breathing, why not misalignment. WOW!!!  BREATHING is a trigger for clusters?? It is amazing what I learn here! No wonder we all get hit!  We all BREATHE!!!   OK, everyone, here is the new cure!!!  No more breathing!  It will cure your clusters!

You're telling me this post and the other that he deleted wasn't disrespectful?

OK, I'm gonna step in here.  Chuck is NOT an ass, and consider this your warning for name-calling.  He is the LAST person on this site that would ever be mean.

Everyone needs to take a deeeeeeep breath.  

Mrs Deej wrote on Apr 2^nd, 2009 at 4:23pm:

OK, I'm gonna step in here.  Chuck is NOT an ass, and consider this your warning for name-calling.  He is the LAST person on this site that would ever be mean. Everyone needs to take a deeeeeeep breath.

His responses to my post were totally inappropriate.  If you don't think what he said was mean, then wow.  Just wow.

Lissa wrote on Apr 2^nd, 2009 at 4:29pm:

Mrs Deej wrote on Apr 2nd, 2009 at 4:23pm: OK, I'm gonna step in here.  Chuck is NOT an ass, and consider this your warning for name-calling.  He is the LAST person on this site that would ever be mean. Everyone needs to take a deeeeeeep breath.   His responses to my post were totally inappropriate.  If you don't think what he said was mean, then wow.  Just wow.

I thought his post was spot on.  Ya shoulda seen the beating I took from a few members when I posted some cockamamy shit.  I took heed, got the oxygen going and dropped the imtrex.

               Kinder gentler Potter

Lissa,

Check your PM's...

1.  While Chuck might have annoyed you, he is right about Oxygen.  If you deductibles are so high, how could imitrex be cheaper?  Out of pocket, O2 is not expensive.  buy your own regulator and mask and it is very cheap.  If you go into cycle and need it every day, most insurance cos wont give you more than 6 a month (unless this has changed recently)

2.  Imitrex has negative effects to the body.  

3.  Have you tried energy drinks (very cold chugged) with taurine???  If your hits arent so bad, they may be a better option.

I am not down-playing using imitrex, as it works very effectively, but I think O2 is a much better option in general if it works for you.

Now chuck, you know breathing is a trigger since you are chronic and every day you breathe, you usually get multiple hits!!!!

As for smoking, if it was a trigger.... whoa, conventions would be ugly!

I totally agree with FramCire and others about the O2 and my insurance company doesn't cover it BUT for about $75/month, I cover it and it is well worth it.  NO side effects should make you more laert for your toddler!

I have used Imitrix for nighttime hits.  Now I use Melatonin, 15mgs a night and no hits.

Verapamil 480mgs during cycle does the trick for the most part.

RockStar light for shadows (I don't like the bubbles in Red Bull or Monster).

I have been going for chiropractic care for over 20 years and it does nothing for the CH but great stuff for the surround issues, as others have mentioned, as well as lupus (which I also have).  I brought info from this site to my chiro; that is how little he works with it and he is also a physical therapist...

I have learned so much from this site, and the support and humor is a boon.  It is hard to get over myself when I am in a CH period, even "light" because I am on edge waiting for the harder hits.  Chuck has been a delight to get to know, as has Giuseppi and Linda and so many others...  Read and learn. :)

Good luck and my you be PF!

FramCire wrote on Apr 2^nd, 2009 at 7:47pm:

1.  While Chuck might have annoyed you, he is right about Oxygen.  If you deductibles are so high, how could imitrex be cheaper?  Out of pocket, O2 is not expensive.  buy your own regulator and mask and it is very cheap.  If you go into cycle and need it every day, most insurance cos wont give you more than 6 a month (unless this has changed recently) 2.  Imitrex has negative effects to the body.   3.  Have you tried energy drinks (very cold chugged) with taurine???  If your hits arent so bad, they may be a better option. I am not down-playing using imitrex, as it works very effectively, but I think O2 is a much better option in general if it works for you. Now chuck, you know breathing is a trigger since you are chronic and every day you breathe, you usually get multiple hits!!!! As for smoking, if it was a trigger.... whoa, conventions would be ugly!

Fram, I believe with higher deductibles you have lower co-pays.  When I was covered by Kaiser, all of my co-pays for meds were only $5.00.  It did not matter what the med was, it was always $5.00.

As far as what Chuck said in his post, I can not blame Lissa for her reaction.  I know Chuck does not mean to offend usually, but he crossed the line also. 


Quote:

OK, I know when I have run up against a mind that is closed to the truth.  I will go help someone that actually wants help.

I don't know what the rest of you would call this, but it looks like a character assassination to me.  And Lissa is the one getting a warning...

Not to mention, she has stated her opinion on O2, and everyone continues to push their opinion about O2 on her.  Give the girl a break.

Thomas

Although she's much more, I was hoping Chuck was just being jealous being taken for granted 'cause along comes Lissa and I said she was a remembered pretty and haven't said it to Chuckie lately.  

I was out of line here.

I just wanted to add one thing or rather ask one thing.. has anyone found that the chiropractor made it worse?

My aunt "convinced" me to see on in New Jersey and by the time that he got done, I was in such pain that I was screaming and banging more than ever. I had to go the ER for treatment because it was too severe to go through.. I never went back for fear that that would happen again.

I also scared the chiropractor so bad that called me twice to see how I was doing and to say that he had never seen anything like that. He got a first hand glimpse of CH and I am sure that is not what he wanted to see.

I know that this does not happen to everyone but I just wanted to share my story.. and, not that I want to ever try it again, but wondering if this was a fluke or a trigger? You never know.

And I also wanted to add that I read through this whole post and I have to say that somethings in here were out of line. What Chuck wrote and I know that he meant well were a bit harsh and out of line. We all have our ideas on what works and does not work, we need to respect each other on that.

I did not think that the breathing being a trigger comment was so bad because when I am shadowing and I know of another person with this too, breathing through that nostril is very painful and can make it worse.

And, one more thing, I understand that oxygen is beneficial and safe for most people on this board but that option is not for everyone. I know that it can be very hard to get a hold of and does not work for everyone. If someone has another treatment that works for them than that should be fine.. we all want to be painfree and we do what we need to do as individuals to get there.

That is just my two sense worth.

Jill

:'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'(
:-X

Lissa, as I posted in your other thread, I understand that you are going through difficult times right now.  We've all been yhere, although some lose sight of what it was like when they suffered without support or treatment, most here are truly interested in helping you.

Please, use my email or my PM and get in touch with me and let's see if we can't find something that will work to get you some relief from your suffering.

Save your energy for battling your pain.  No one here can claim to know everything, myself included.  I'd like to try and help you if you're interested.

The one thing we know for sure about this disease is that we don't know everything and it's face is always changing.  Contact me if you think you'd like some help from me - no strings or judgement attached.

Cat

Okay, I need to address something on the insurance side of oxygen.

I'm on medicaid.

I'm on disability.

I cannot get medicaid to cover my oxygen for the cluster headaches. I've been told when I have medicare added to my insurance, they still will not provide it.

I have a headache specialist who's goal at this point is to SAVE my life. The people I get my oxygen from, also know how grim my situation is.

So I've got all of these people fighting for me, and the government is STILL refusing me!

On the OTHER hand however, we found a loop hole.

They WILL NOT be able to deny me the oxygen so long as my 02 sat during sleep is 88% or less. I have central apnea. So we're going to go through the test, to get me the oxygen that way.

Lissa, you may want to call a home health care company, and ask them about doing this. If they won't give you the 02 based on the CH diagnosis, you could talk to your doctor, along with a home health care company about a way to get it for you.

I pay $11 per bottle right now, I go through a bottle a day. My family absolutely cannot afford 3k a month... So I have to find other means of coping, but being told this by several people has given me hope that I'll have this abortive here.

If you feel the trex is enough, that's fine too. But I do reccomend seeing if you could get the oxygen that way. It never hurts to try, because you never know, it could help you.

PFDAN
Mystina