Got an e-mail from this chronic clusterhead looking to talk to othjer chronic clusterheads.  He gets an error message from the messageboard so I offered to post his e-mail.


Quote:

Shmily5678@wmconnect.com Hi, I'm not from California but I really need some information.  I was just diagnosed with Chronic Cluster Headaches and just want to make sure my doctor made the right diagnosis and was wondering if I could talk to anyone with Chronic Cluster Headaches.  I would really appreciate it.  I've been sick a long time.  My headaches started out like migraines, where the right side of my face was numb and tingly and I was really dizzy and sick.  Anyway, after like a week they seemed to turn into chronic cluster headaches and I just want to be positive that that's what I have.  I've been awakened an hour or two after falling asleep with the classic cluster headeaches, where I had all the pain at the right eye and had a droopy eye and a big wrinkle at my eyebrow on the right side, etc.  But most of the time what I feel isn't exactly that bad.  I get the headaches every day and it's worse right in the morning after I wake up and then it gets a bit better as the day progresses but it fluctuates a lot where foods and things trigger it.  Anyway, I feel some pain around the right eye area but it's not that bad usually, mostly I just feel very anxious, and pacing the floor, and that crazy sort of cluster headache all over uncomfortable, wanting to jump out of your skin type feeling.  But mostly the headaches aren't too painful.  The right side of my face, around the eye and down the side of my face, and a little bit at the jaw, feels sort of tight and very uncomfortable.  But that's sort of how I usually feel when I am not having a big cluster headache.  Sometimes I seem to get an area of my cheek (where the headache has changed) that is blushed and feels hot.  I don't know if that's normal.  I've been sick 6 years and I had one time where the headaches went into remission for 3 days, then maybe 2 years later when they went away for 3 days again.  So I just wanted to make sure that I do have chronic cluster headaches and if this is how they are suppose to feel because I don't know.  And I've tried practically every medication out there and there has been no noticable benefit so I am sort of at a dead end so if anyone wants to give me some advice in what could help I'd love that too.

First of all I'm glad you found the site and you should receive the answers you seek. I'm sorry that you are enduring so much pain without medication being of any noticeable benefit. I myself do not suffer from chronic CH's but I am episodic (every 2 years). You stated in your email "That mostly the headaches are not that painful". I would be surprised to learn that you have cluster headaches if in six years you have not experienced a large hit (Kip 10). Generally the pain from a full blown CH attack is so excruciating that it has the nick name the "suicide headache" and this pain can be repeated 4 to 5 times a day during a cycle. Although i must agree that some of your symptoms are in line with a CH attack such as droopy eyelid and timing of attacks.

I'm sure a chronic sufferer will be along shortly to share their experiences and hopefully give you the answers you seek.  I hope for your sake that you do not have this infliction and anyhow you will receive great advice on the various treatments and medications that are available to treat your headaches.


Lefty...!

Hey Bob, would it be possible to have him email DJ about his access problems?  It might be because he's behind a proxy server.

Thanks!

Bob,  I will e-mail him.

  Hope he can get the problem solved so he can also to talk to other chronic besides myself.

Linda

Hi, I'm the girl who's chat this is about.  I'm Shmily.  So, yeah, as you can see I've gotten into this site.  I really do need to talk to any chronic sufferers out there who can tell me how they feel so I will know for sure that this is what I have.  I have gotten full blown cluster attacks, really bad ones that have woken me up from sleep where the pain was so bad, the worst level of pain it could be, and I wondered if I'd pass out from the pain, and I did just want to die.  But mostly it doesn't get that bad.  I didn't know if the chronic form of the disorder was more toned down compaired to the episodic form, or if my symptoms match a better disease.  So if there's chronic cluster suffers out there, please, I'd love to know what you go through.  Thanks.  

Hi, I'm the girl who's chat this is about.  I'm Shmily.  So, yeah, as you can see I've gotten into this site.  I really do need to talk to any chronic sufferers out there who can tell me how they feel so I will know for sure that this is what I have.  I have gotten full blown cluster attacks, really bad ones that have woken me up from sleep where the pain was so bad, the worst level of pain it could be, and I wondered if I'd pass out from the pain, and I did just want to die.  But mostly it doesn't get that bad.  I didn't know if the chronic form of the disorder was more toned down compaired to the episodic form, or if my symptoms match a better disease.  So if there's chronic cluster suffers out there, please, I'd love to know what you go through.  Thanks.  

Hi, I'm the girl who's chat this is about.  I'm Shmily.  So, yeah, as you can see I've gotten into this site.  I really do need to talk to any chronic sufferers out there who can tell me how they feel so I will know for sure that this is what I have.  I have gotten full blown cluster attacks, really bad ones that have woken me up from sleep where the pain was so bad, the worst level of pain it could be, and I wondered if I'd pass out from the pain, and I did just want to die.  But mostly it doesn't get that bad.  I didn't know if the chronic form of the disorder was more toned down compaired to the episodic form, or if my symptoms match a better disease.  So if there's chronic cluster suffers out there, please, I'd love to know what you go through.  Thanks.  

Got an e-mail from him this morning: problem solved.

So glad we got you on line, now let's see what we can do for you. When you get a chance, please list what medications you have tried, and how you tried them. The dosing, etc. I remember in the early stages I would try a medication for a week, see no positive effect, and dump it! I'll give you my run down...just one example of treating CH...it tends to vary so much from person to person there's not much in the way of "one size fits all"...but there are enough similarities you can get an idea of where to start. I'm 49, male, episodic for about 31 years.

1: A good preventative medication. That's a medication you take daily to reduce the frequency and the intensity of your attacks. I use lithium at 1200 mg. a day. It blocks about 70-80% of my attacks. The funny thing is, historically, lithium is more effective for chronics then it is for episodics, but it's been my silver bullet. If your doc hasn't tried lithium yet it might be worth discussing.

Verapamil and topomax are also popular prevents, others to read about on the meds board and discuss with your doc. Some chronics have found relief by combining verapamil and lithium. Both are high octane meds which require close monitoring by your doctor.

2: A good abortive strategy. A headache starts, now what? My first line abortive is oxygen. I can halt an attack in 6-8 minutes, if you haven't tried it yet please give it a shot. Read the link on the left as it has to be used correctly or its worthless. Your lungs must get ONLY 02, no outside air, ne exhaled air. Best accomplished using a high flow regulator, at least 15 LPM, and a Non Re Breather Mask.

Imitrex Injectables and nasal sprays are effective abortives for many. Have you tried energy drinks to abort an attack? Monster, Rock Star, any containing the combo of caffeine and taurine. Many can abort or at least really reduce an attack by slamming one down at the start of an attack.

That's a lot to digest I know but you suffer from a rare ailment. (I'm no doctor but what you've described sure sounds like CH. It's not unusual to have varying levels of pain, some 10's, some just what we call shadows. ) It's incumbent on you to educate yourself and work with your docs to find an effective treatment plan. We'll help you every step of the way. Welcome home.

Joe

Guiseppi,
thanks for the advice.  I just hate this stupid situation.  I have tried all the meds going.  Really, the list goes on and on, but I really haven't had a fair run with calcium channel blockers after reacting bad to Verapamil.  So I still want to try more of those, but the rest I've exhausted.  I've tried each med for over a month.  Usually a month and a half and there are no noticable results so then I try something new.  I was on Amytripaline, combined with Gabapentin and Lyrica for ages, like half a year, and that helped maybe 15% but the dosage was unbearable and made me hallucinate every night and caused constipation and gave me some other problems so I moved to something else.  I was on the highest dose possible of Indomethacin for like a month, and I did it twice because I just wanted to make sure, and nothing happened.  I was on the highest dose of Lithium given for a month and a half and nothing.  Was on Topamax for awhile which was a nightmare because it made me sleep around the clock and made it so I couldn't tolerate any food and I lost tons of weight really fast, and I absolutely hated that drug.  Tried Depakote a month and a half and nothing.  Had an allergic reaction to Diamox.  Prednisone at the highest dose did nothing.  I can't remember all I've taken but I've taken a lot of them.  It's frustrating.  I get really depressed, thinking there's no hope of feeling any better and honestly I don't know how you guys do it.  I hear of people who've done it like 30 years.  I've only done it 6 and can't imagine doing it much longer.  I just want to feel at least, maybe 50% better, or I just sort of want to be dead.  I don't want to freak anyone out, but you all must go through this right, I mean they're called "suicide headaches".  It's just a lot to handle and I am not handeling it well right now.  It's no way to live and if I start looking at the future I really don't like the possibility of living like this.  Sorry.  I don't want to sound like a creep, but sometimes reality really hits me, like it is now, and I can hardly breath and I'm sort of at a dead end right now and it's all just unbearable.  Sorry.  I don't want to get anyone down either, it's just really hard.  I mean I'm just a kid really.  I'm only 24.  I was 18 when I got sick and it's just unbelievable how I went from hanging out with my friends, and just always having fun and getting in trouble, and working everyday and going to school, and living on my own and all of that, to then getting sick and not being able to do anything.  I just want to get better so I can be me again I guess.  It's just heavy.

I might not even have chronic cluster headaches either.  I may have New Daily Persistent Headache or something else.  I'm going to get into another doctor, get a second opinion.  But the new daily persistent headache isn't responsive to meds either.  So basically I just feel screwed.  You know.  I just believed one of the meds would work and they've all seemed to have failed.  I still am going to try whatever I can but what am I going to do if those fail too?  I don't think I could keep going.  I can barely keep going right now.  I'm so sad and things seem so unfair and sort of hopeless and like why do I even try anymore.  Sorry for the breakdown.  

Hi Shmily,

I was also 18  when I began my first cycle of Ch's and I can totally understand how you are feeling at this moment. It can be a very lonely and scary condition we suffer from. I understand that you are in a dark place at the moment but there is light at the end of the tunnel. Use this forum to vent your anger and frustrations and most importantly remember you are never alone...! Seek advice at every available opportunity and trust me you will get stronger and more confident and the fight back against the beast will begin.

Take care

Lefty..!  

Lefty is right.....(no pun intended!).....you're in a dark place right now. Wish I had a brilliant jewel of knowledge that'd solve your woes but I'm fresh out of brilliance today.  :'(

Hang in there......come here and vent away.....we'll keep you in our thoughts and prayers that your answer is just around the corner of your next appointment.

Joe

Schmily,

Hi, I am sorry I have not had a chance to answer you back with another email.

First of all, by all means, go and get a second opinion.  If the second doctor agrees that you have cluster headaches, then lets get to it!  You described, in detail, what your symptoms are.  Some are not quite normal, but not unheard of.  The times that you describe that are not as bad as other times, those are just lower level hits.  (See the KIP scale, behind the tab on the left side of your screen)

There are about three levels of pain.  The real low levels are what we call shadows.  They can last for hours, or even days.  They are more of a nuisance than anything else.  They are not debilitating, nor do they keep you from doing what you have to do (work, shopping, studying, house cleaning, or whatever).  But there is pain there, just not very high on the KIP scale  Say somewhere up to the level of 4 (on the KIP scale).

Then we go to the mid range pain.  Those are in the 5 to 6 range.  These are much more painful, and make it very difficult to do what you need to do.  Many times you get into the restless, pacing stage.  These are painful, but you are not ready to blow your head off, sort of pain.

Then we get into the serious level hits.  The 7 to 10 level hits.  These are the hits that bring you to the pacing, head banging, head punching, hair pulling, screaming, cussing, praying, kill-anyone-who-gets-in-your-way kind of pain levels.  At these levels it is virtually impossible to do anything constructive.

Being chronic, like you and I are, we can get any, or all of these, several times a day, every day of the year.

This next part is going to be a very difficult posting for me to do.  I want you to know that I am doing this, and saying this with all the love and respect that I have to give you.  You are young.  I am old ... VERY old!  LOL  Think of me as a father or  <shudder> Grandfather figure.  What I am going to tell you, you will not like, but remember, I am that Grandfather that loves you, and is telling you like it is, for your own benefit!

First of all, GET OVER YOURSELF!  You are in a tough spot, ok, I can accept that, and I have been there too.  But SNAP OUT OF IT, and quit feeling sorry for yourself.  You have had your pity party, fine, but now it is time to snap out of it, and grab the bull by the horns, and get yourself together.

Knock off the WOE IS ME kerap!!!

Ok?  Do I have your attention now?

Now, in reading your email, and your posts here, I see that you have given in to the beast, and are letting it control your life.  I see resignation and surrender in your words.  Giving up is letting the beast win.  We are clusterheads.  We are STRONG!  We NEVER, EVER let the beast win!  You need to stand up, look the beast right in the eye and say FUCK OFF!!!  And MEAN it!

You are now saying: "Fine for you to say, but you don't know the position and state that I am in .."  Well, to put it bluntly and distinctly, BULL SHIT!  I know EXACTLY the position your are in!  I know EXACTLY the state you are in!  Why?  or HOW?  Because I have been there.  And, unfortunately, more than once.

The first thing you need to do, is change your attitude and outlook.  Your attitude is the strongest weapon you will find or ever get, to fight the beast, and YES, it will be a fight!  You need to quit worrying and dwelling on the times that you are in pain, and fully enjoy, and relish the times in between.  Your pain free times.  Relish THOSE times!

STOP saying that you are sick!  You are NOT sick!  Resigning yourself to the label of "SICK" is giving up.  You are a person.  You are a human being.  You have eyes of a certain color.  You have hair of a certain color.  Your hair has a certain level of curls or lack of curls.  You are of a certain height.  You also happen to suffer with a condition called cluster headaches.  Don't define yourself with the label of a cluster headache person.  You are a person, FIRST, with many traits and features, and only ONE of them happens to be cluster headaches!

Read and learn all you can about this condition.  Find out what others have taken for medications and levels.  Try what others have tried.  If you have done so in the past, try something else.  Try some of the unconventional methods.  Read up on kudzu.   Read up on some of the natural supplement and diet plans that many have had success with.  Go to the clusterbuster site and read up on what they have to say.  Get aggressive in your pursuit of a treatment plan that works.  Get imaginative.

Get aggressive with finding an abortive that works to kill a hit, once it starts.  I don't remember seeing any reference in your posts to using oxygen.  If you have used it in the past, and it didn't work, try it again.  We have developed newer and better methods in the past few years.  Read all the information, on the left side of your screen, behind the tab: oxygen info.  Try it!  or TRY it AGAIN!

I am sorry this got so long and wordy, but I needed to get you motivated, and informed.

Remember, work aggressively, intelligently, and persistently.  Ask questions of us.

Keep us informed!  We DO care.

Chuck

For such complex headache problems, finding the right doc is critical.
======
LOCATING HEADACHE SPECIALIST

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

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

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

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

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

For lack of a better name to call you since you didn't sign your post or your e-mail to me...Placebo,

 I truly understand that you are in a bad place right now and I think it stems basically because you don't know what you have.  That can certainly be frustrating.

I have had chronic cluster headaches for almost 22 yrs. now.  I get hit on average 4 times in a 24 hour period.  Sometimes less, sometimes more.  But I have to say this to you because what you said kind of made me cringe...I do NOT consider myself "sick" as you put it.  I have a condition.  I deal with it.  I have educated myself about it and I have even educated my doctor.

Knowledge is power if you have cluster headaches just as if you had diabetes, or anything else.

I pray that you don't have CH and that you will be able to get a good doctor to diagnosis what you DO have and get you treated properly.  


Chuck is correct...we all care here very much.     Linda

Thanks guys.  Yeah, I need to get myself some O2.  It's sort of hard even getting the motivation right now to go figure all this stuff out, but I'm trying.  It's all so complicated.  Don't know what else to say.  Still feeling very overwhelmed but trying to pick myself up.  I'm not quite sure how you guys manage to do it.  Shit.  Regular people have the luxury of being able to go out and get drunk, ha ha ha.  Oh, I need a drink.  Yeah right, I wish.  

Placebo,   do you know anyone with a welders tank of oxygen that they will let you use?  Kind of a try-out til you get to a proper diagnosis?

if you do, tell them to bring it to your house and if you send me your address in a PM or an e-mail I will send you a mask and tubing for it.

Linda

no.  I don't know anyone with that stuff.  I have used oxygen in the ER before and yeah it works great so I really want some.  

Aaahhh...  I just looked on the lifegas 02 thing and it's not available in my state.  Not available for refill.  I guess I'll just have to bug my doctor.    

Yeah, so I'm doing better now, happy again for the most part, just had to get all those emotions out of me.  Had a terrible last 2 days and still feel terrible but I've come up with a plan and am happier now that things are more figured out.  Alright, I'm just writing to say BYE to you all.  I'm going to take a break from this site for awhile, it's really stressing me out.  Maybe in awhile I'll come back and tell you how I'm doing, maybe not, I don't know, you guys probably won't remember me anyway.  Thanks for all the advice and I hope I'll be better and back to my more fun self in awhile.  I hope all you guys get better too.  If I were you all, I'd try the Occipital Nerve Stimulation, or if that didn't work, then fuck it, I'd go for the Hypothalamous Stimulation, fuck, I think I might even give that LSD treatment a try, at least that might make things a little more interesting.  Anything to get better.  Being sick just isn't an option.  I wish we could all get in time machines and travel to the future when better pills are invented.  Then everyone would be better and we could all get together and have a big party and get wasted and have tons of fun.  Okay, well, here's to the future.  Bye for awhile.

Placebo wrote on Apr 11^th, 2009 at 6:06am:

Yeah, so I'm doing better now, happy again for the most part ... ... ... ... ... ... ... ...  Bye for awhile.

WOW!!!

I sure hate to see you leave.  We are concerned about you and care.  How can we keep up with you if you leave?

<sigh>

Well, at least you say you are doing better ...

Chuck

you need a couple of years to be a full chronic :) mine started in the way yours did. refrain abortive medicine such as immitrex, zomig, relpax,etc.. unless you feel you cannot bear the pain. ice packs, ice cloth, cold shower (need vasoconstrictor) helps. stay away from closed places, stuffy air, excess heat, strong smells. verapamil and topamax have headaches as side effects they did not work on me. i guess a strong combination of lithium and depakote helps, which still did not kick in on me yet, i am still hoping them to work. when u feel the pressure immediately put your head under cold water or in the freezer for a couple of minutes, and let your nose get fresh air. i dont know i have tried so many different things i cannot even remember.

Placebo wrote on Apr 11^th, 2009 at 6:06am:

Yeah, so I'm doing better now, happy again for the most part, just had to get all those emotions out of me.  Had a terrible last 2 days and still feel terrible but I've come up with a plan and am happier now that things are more figured out.  Alright, I'm just writing to say BYE to you all.  I'm going to take a break from this site for awhile, it's really stressing me out.  Maybe in awhile I'll come back and tell you how I'm doing, maybe not, I don't know, you guys probably won't remember me anyway.  Thanks for all the advice and I hope I'll be better and back to my more fun self in awhile.  I hope all you guys get better too.  If I were you all, I'd try the Occipital Nerve Stimulation, or if that didn't work, then fuck it, I'd go for the Hypothalamous Stimulation, fuck, I think I might even give that LSD treatment a try, at least that might make things a little more interesting.  Anything to get better.  Being sick just isn't an option.  I wish we could all get in time machines and travel to the future when better pills are invented.  Then everyone would be better and we could all get together and have a big party and get wasted and have tons of fun.  Okay, well, here's to the future.  Bye for awhile.

WOW!

Yeah, I'm back, but this is the last time.  Ha ha ha.  Thought I was done with these sites but just moved over to mdjunction.com.  ha ha ha.  It's nice there.  Lots of people to talk to.  I moved over there to talk to the New Daily Persistent Headache people.  I'm thinking that my doctor diagnosed me wrong and I have that.  Still don't know for sure, gotta talk to my doctor today.  He'll probably think I'm crazy.  Anyway, I don't know it that site has a chronic cluster headache support group but maybe, if not I guess you could start one or something but there probably is one already.  Anyway, if you still feel like chatting with me from time to time I'm Placebo over there too.  I'll stay over there for awhile unless my doctor convinces me I have CCH.  If he agrees that I have NDPH then that's where I am.  Thanks for answering some of my questions, bye everyone and hope you all get better, and me too.  Hope we're all healthy soon, stay strong.  

Quote:

Alright, I'm just writing to say BYE to you all.  I'm going to take a break from this site for awhile, it's really stressing me out.  Maybe in awhile I'll come back and tell you how I'm doing, maybe not, I don't know,

Quote:

Yeah, I'm back, but this is the last time.  Ha ha ha.  Thought I was done with these sites but just moved over to mdjunction.com.  ha ha ha.  It's nice there.  Lots of people to talk to.

Wow is right!    I'm.......slightly insulted I think.  LOL   You do what you have to palcebo.  We were all just trying to help you and you recieved a lot of GOOD advice here.   We'll be here if you should decide to come back.    :(

Placebo wrote on Apr 13^th, 2009 at 6:52am:

I moved over there to talk to the New Daily Persistent Headache people.

I think I'll have to move over there to if these daily persistent shadows don't piss off. Or I might pop over to the headaches between 6pm and 7pm people. Mmmm! Decisions decisions... :-X

Lefty...