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worfsmom
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Anyone have ideas?
« on: Feb 14th, 2004, 5:42pm »
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Hi, my mom just got me this computer to force me out of bed more often.  I've only visited this site a few times when I've been on her's or my sister's, but it's felt like coming home.
 
I've been in my current cycle since October 1995.  Overall I've had CHs for nearly 24 years.  This one's the hardest tho!
 
Since I moved back to NY from Florida I've been seeing a pain specialist who's been very helpful and understanding, prescription-wise.  Lately tho he's been pressuring me to try drugs that have previously made me very sick, or to try new treatments that my insurance company would never pay for, like Botox injections.  Last week he suggested Electric Shock Therapy, and was very upset when I said ABSOLUTELY NO!!!  He claims ECT has been very effective in the journals for treating chronic headaches, except he couldn't say if those "headaches" were cluster or not.  Have any of you heard of this?  And how about intravenous magnesium or lidocaine?  He suggested that back in March of last year, and claims that he's still waiting for my insurance company to approve it.  
 
I'd appreciate any info anyone can give me.  Right now it's back to bed with some pills after walking the dog.  This winter has been horrible - I got the flu vaccine for the first time in my life, and i keep relapsing with the flu.  I'm sure you all know (as my dear therapist doesn't!) that any extra discomfort also makes the CHs that much worse.  And all this time in bed means my metabolism has slowed to nothing, so even tho I don't eat much I'm overweight for the first time in my life.  I tried a low carb diet, but between not being able to shop and cook as needed, I wind up eating fast things that are mostly carbs.  And I find if I cut out too many carbs the pain gets worse and I tend to have seizures.  But this is so depressing!  I've been trying to the gym or use my Winsor Pilates tapes, but the damn CHs always interfere.  And my fiance (who I've been separated from for almost 2 years) is coming back soon.  I don't want him to see me like this.  I know he loves me and he understands about the headaches (even tho they nearly destroyed us), but I'm so sick of being an invalid.  I used to be beautiful.  I used to be vibrant.  I used to have an important job that I did well.  But now I'm a 43 year old woman who lives in bed, survives on disability and what money my 68 year old mother can spare, and I'm ashamed to even look at my own body in the shower, much less show it to the man I love.  
 
How do you get your libido back when you're in pain all the time and you're on all these drugs?  I never thought I'd be asking this, but this is my life now.
 
I've got to go.  I didn't think writing this would upset me so much, but I've got tears pouring down my face and my head is going ballistic.  Thanks for any answers.
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floridian
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Re: Anyone have ideas?
« Reply #1 on: Feb 14th, 2004, 6:45pm »
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Quote:
Last week he suggested Electric Shock Therapy, and was very upset when I said ABSOLUTELY NO!!!  He claims ECT has been very effective in the journals for treating chronic headaches, except he couldn't say if those "headaches" were cluster or not.

 
My first response was "your kidding, right?"  But then I thought about some of the nitwits I have encountered when seeking medical care, and I feel for you.  Find a doctor that knows what he or she is talking about.  
 
Magnesium has been shown to help some people with clusters.  The IV is quicker acting but has to be done at a hospital or clinic.  You can start taking magnesium supplements and see if it helps - 400 to 600 milligrams per day, divided in doses over the day, in a chelated form if you can get it (oxide might cause some diarrhea, sulfate would if taken orally).  The $4 magnesium treatment that takes a few weeks to help is better than the 'quick' magnesium therapy that the insurance company won't approve for several months.  
 
Also search the board for melatonin info - some of us have been helped by that.   Do you use oxygen?  Triptans?  Lithium, topomax, or anything else?  Oxygen is effective for most people for turning off the pain - temporarily.  Other drugs can help prevent.  The other drugs can have side effects but can be useful. Nothing works for everybody.  Just have to try things with a good doc and see what works.  
 
Clusters will drag any one down.  I hope you can find some answers and support here.  
« Last Edit: Feb 14th, 2004, 6:47pm by floridian » IP Logged
pubgirl
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Re: Anyone have ideas?
« Reply #2 on: Feb 14th, 2004, 7:04pm »
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Hi there
 
Good for your Mum giving you the chance to come to the site to talk to us!
 
I'm so sorry you are suffering so badly. I'm not sure you can call pain since 1995 a cycle, I'd call that hell!
 
I would like to echo Floridian, I have NEVER heard of ECT being used for CH, and would certainly use every other route possible before letting someone shock my poor brain, which is addled enough as it is!
 
As Floridian says, tell us a bit more about what you have already tried as this cycle sure as hell needs breaking.
 
Wendy
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Re: Anyone have ideas?
« Reply #3 on: Feb 14th, 2004, 7:21pm »
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ELECTRIC SHOCK THERAPY??? My god, are we back in the dark ages. It's time for a new doc.
Kip
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denisebyrd
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Re: Anyone have ideas?
« Reply #4 on: Feb 14th, 2004, 11:46pm »
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HI, aaaai'm very interested in the botox therapy. My husband said he had seen something newsworthy on it and it was worth looking into. Also, I would like to know if anyone out there has tried to quit smoking and what resutls they had. I quit for three plus months and probably would have done very well, however this precipitated a cycle  of headaches that nearly did me in. I caved~!!!! The worst part is I felt betterNow I am back in a cycle again that will never end. Prednisone, Oxygen, and Imitrex. I would love to have some input from others who have tried.  Thanks Dbyrd
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jonny
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Re: Anyone have ideas?
« Reply #5 on: Feb 15th, 2004, 12:56am »
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on Feb 14th, 2004, 6:45pm, floridian wrote:
My first response was "your kidding, right?"   ..........  I hope you can find some answers and support here.

 
First thing is to stop going to bed with pills.....then get the fuck out of bed and fucking live.....Christ!!
 
Take control of your fucking life....I sit here 29 years chronic and im not sucking off the system or my mother.
 
Someone needs to put a boot in your ass!!!!....pronto!!
 
Dont fucking whine.....do something about it...Damn it!
 
You dont need a Doc that knows, you need to stop with the selfpity....Wake up!
 
YOU are the only one that will change anything....when you realise that shit will get better.....Quick
 
Even the 14 years chronic with no meds I never put my head in the sand.....Its time to live....get out of bed for christ sakes!!!
 
.................................Not pretty jonny
 
 
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Re: Anyone have ideas?
« Reply #6 on: Feb 15th, 2004, 1:15am »
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Good thing ya got yerself a computer.  Now here's what ya should do...
 
1) Read up on Cluster Headaches on this site
 
2) Read up on Garfield on this site:
 
http://www.garfield.com/comics/classics/ga970708.html
 
We've all been drug through the ditch in our own way.  Don't beat yourself up for it.  Tears are natural, but so is laughter.  She who laughs, lasts.
 
« Last Edit: Feb 15th, 2004, 1:22am by toader » IP Logged
t_h_b
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Re: Anyone have ideas?
« Reply #7 on: Feb 15th, 2004, 8:24am »
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Sounds like you're getting some good advice all the way around.  A couple of things I'd like to add:
 
YOU NEED A NEUROLOGIST SPECIALIZING IN HEADACHES NOT A PAIN SPECIALIST!!!!!
 
The pain is a symptom of your underlying problem.  Treating the pain doesn't work well with CH, you have to stop what's causing the pain.
 
Where are you living in New York?  There are plenty of good neurologists in NYC specializing in headaches.  The OUCH site has a list.
 
ECT isn't even used much for severe depression anymore.  In school I saw it administered to a fairly young woman by a lazy sadistic SOB MD whose patients never got any better.  He said it was "just like having an orgasm".  (Yes, he said that.)  To me, it just looked like the particularly nasty seizure that it is.
 
The idea is that it wipes out your memory so that you can't remember why you're depressed.  If you're still depressed afterwards, you obviously need more ECT.  Since the type of depression that is usually treated with ECT is biochemical and not a reaction to something experienced, the ECT doesn't work too well!  It would also seem that losing lots of your memory could actually cause depression.
 
If your doctor is recommending that for clusters, he's the one that needs the ECT.  Or a good malpractice suit.  Or both.
 
And I must say I have no idea how having clusters keeps you in the bed unless it's between attacks because you're depressed.  A neurologist can also help treat your depression with medications.  Treating the depression would likely help your libido, too.  Once you start feeling better then maybe you can get some pschotherapy.  Psychotherapy alone won't help if you have a biochemical imbalance in your brain.
 
Your first two steps to getting a life are 1) dump the pain specialist nut and 2) get a decent neurologist.  In that order.  Your general practicioner could do a better job with your clusters while you're inbetween.  Any medical student probably could.
 
Good luck.
 
 
« Last Edit: Feb 15th, 2004, 1:59pm by t_h_b » IP Logged

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Re: Anyone have ideas?
« Reply #8 on: Feb 15th, 2004, 11:00am »
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I quite agree - suggesting Botox that helped only very  few sufferers, magnesium IV (copy what floridian says)
and the bleeding ECT!!!
 
Try and find yourself a better and cluster-inmformed doc right here
 
http://www.clusterheadaches.org/doctors.htm
 
Check out the whole of that site, very good info there.
 
Oh and I agree with Jonny. Get out of bed.
 
There are more chronics here - not people in episodes, people with several cluster attacks just every day of the godgiven week, year in, year out.
 
And they function and do their jobs and have even time for a social life.
 
Get back to living. Clusters don't kill one, after all.  They just hurt.
Have a good read and good luck.
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Re: Anyone have ideas?
« Reply #9 on: Feb 16th, 2004, 11:55am »
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ECT???? --------NO! FORGET IT ALTOGETHER!
 
OXYGEN!!!!try that first.
 
  Quote:
YOU NEED A NEUROLOGIST SPECIALIZING IN HEADACHES NOT A PAIN SPECIALIST!!!!!
this is also a great idea! and....
 
 
Quote:
stop going to bed with pills.....then get the fuck out of bed and fucking live.....Christ!!  
 
Take control of your  life....
 
Dont whine.....do something about it...Damn it!  
 
you need to stop with the selfpity....Wake up!  
 
YOU are the only one that will change anything....when you realise that shit will get better.....Quick  
 
Even the 14 years chronic with no meds I never put my head in the sand.....Its time to live....get out of bed for christ sakes!!!  
 

 
Jonny's words although HARSH and now edited LOL! (he doesn't hold back for anyone) are very valid and good advice.  
 
Get Proactive not re-active,
Ramon
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Re: Anyone have ideas?
« Reply #10 on: Feb 16th, 2004, 12:33pm »
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My sister is about your age, and just settled a 6 year workers comp case...claims chronic pain, etc etc...
 
At points in her 6 year oddyssey she make strides and got out, joined the gym and went swimming, did what she could on a stationary bike (she suffered a knee and back injury)...when she did those things her mental and physical outlook were IMPROVED IMMEASUREABLELY.
 
The moment she stopped, she started slipping back into her hell.  It's tough to watch, especially since she has a 19 year old son who is basically being dragged into hell with her.
 
I can't doubt the headach pain, and pain can lead to depression...but electro-shock-therapy has never seemed to be legit science to me.  Floridian is one of the most well read people on this board, take his advice strongly.  You need to talk to a neuro that understands headaches, not a pain specialist...
 
If indeed you are suffering from cluster headaches there are many different treatment options...and there are a lot of ears here to listen to your concerns.  Some may be a littel more gruff than others Smiley but the most important thing to realize is that you can't let the beast win!  It's too easy for the bastard to take you down, so you have to try REAL HARD to understand that this is not a fatal condition.
 
I went nearly 2 years with this disease thinking it was "sinus headaches"...and ineffectively popping sudafeds and ibuprofens, not knowing that such things as imitrex, oxygen, and zomig existed.  Now I know that there are meds that can dull the pain, and after 6 weeks on topamax I haven't needed an abortive.  I still get some shadows...and wonder how long I'll need to be on this dope.  I've lost my job, and this med is expensive, so it's not all easy...
 
But I'm not going to cry and give the beast a chance to win.  FUCK THE BEAST! I PISS IN YOUR GENERAL DIRECTION! We clusterheads are the toughest people on the planet, and you'll have to drag me kicking and screaming before I give up...
 
Let us know what you've tried.  There's LOTS of experience with different meds here.  I'm willing to bet we (as a group) can sugest a few things that you "pain specialist" might not be aware of...'cos I'm betting that he/she know's squat about the true nature of Cluster Headaches.
 
PF Vibes, and BE WELL!!!! Smiley
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Re: Anyone have ideas?
« Reply #11 on: Feb 16th, 2004, 4:34pm »
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I keep trying to answer all of your kind (but one) responses, but I keep getting thrown out of the system.
 
Anyway, what I didn't say before was that I'm an RN, and there's not much I don't know about this disease.  As far as doctors go, I've been to most of the NYC ones, but now I'm limited to the ones who participate with my HMO, and the other ones besides my current one are ex-doctors of mine (they dumped me when they couldn't "cure" me years ago).  This one really is a good guy.  He cares at least, and unlike most of the others (and this I know from actual experience), he's willing to write pain meds.  Since I'm unable to take most other meds for various reasons (e.g. other medical conditions, severe adverse reactions, financial considerations) that's important to me.  I'm no junkie and I don't like taking this crap, but without it I couldn't function even the little bit I do now.
 
I don't spend so much time in bed because I'm depressed.  Actually, I'm not clinically depressed.  I recently consulted a psycopharmacologist and he confirmed this, telling me I would be "crazy" if I weren't somewhat depressed over my condition, and that given my past history, I'm gonna have to wait out this cycle like all the rest.  My CHs are atypical: in addition to the acute attacks you all get, I have a constant level of pain that varies in intensity.  This is extremely exhausting.  Over the years I've learned, like most of you, how to manage the pain.  I've become expert at relaxation techniques, biofeedback, etc.  But mostly it's a matter of recognizing what I'm capable of at any given moment and not overdoing it, or I'll really end up in pain or start having seizures.  Knowing this, knowing I 'm supposed to look at what I do, little as it is, as accomplishments instead of focusing on all the things I haven't done, is important, but when you're brutally honest with yourself it doesn't really help.
 
And just to answer the guy who blasted me without an iota of compassion, the money my mother gives me pays for my therapist, and considering that she stood by and did nothing to stop my father from beating the shit out of me for the first 17 years of my life, including the blows to the head that probably triggered the gene for CHs he passed onto me, I think she owes me for that.  Why don't you try living your life with those memories, having the PTSD destroy every relationship, and thinking you deserved to be treated that way because that's what your mother told you before you dare to judge!!!  You sound like a hateful little man, and if you think your negativity is inspiring, think again.
 
To the rest of you, I am very grateful for your responses.  I need to learn how to really use this thing, but when I do I'd like to be able to get to know you better, maybe in the chat room (which I've never done before).  I'd also like to figure out how to change my logon name and use my real name, which is Leigh.
 
Bye for now, and Blessed Be!
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Re: Anyone have ideas?
« Reply #12 on: Feb 16th, 2004, 4:52pm »
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on Feb 16th, 2004, 4:34pm, worfsmom wrote:
 the money my mother gives me

 
Nuff said
 
BTW: Head trauma does not turn CH on and off (If it did "Headbanging" would really do something)
 
............................jonny
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Re: Anyone have ideas?
« Reply #13 on: Feb 16th, 2004, 5:02pm »
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on Feb 15th, 2004, 12:56am, jonny wrote:
YOU are the only one that will change anything....when you realise that shit will get better.....Quick  
 
Even the 14 years chronic with no meds I never put my head in the sand.....Its time to live....get out of bed for christ sakes!!!

 
Leigh,
 
Jonny's post is anything but negative.  After reading your post again, I would have thought the same thing as Jonny, but I wouldn't have had the guts to say it.
 
Really, your original post sounded as if you are drowning in pity and wanted us to dump a few more gallons on you.
 
BTW, being a RN doesn't necessarily qualify you as a subject matter expert on CH...hell, neither does being a doctor.
 
That said, every single one of us is here to help!  ...including the "hateful" little man.   Grin
 
You gotta want to help yourself as well.
 
Best wishes for you!
 
Chris
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Re: Anyone have ideas?
« Reply #14 on: Feb 16th, 2004, 5:09pm »
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I would suggest a melatonin and prozac regimin....... I'm no doc, but that's what I would try.  That hateful little man posted every word with love and support in mind.
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Re: Anyone have ideas?
« Reply #15 on: Feb 16th, 2004, 7:40pm »
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on Feb 16th, 2004, 5:09pm, thomas wrote:
That hateful little man posted every word with love and support in mind.

 
Leigh, Jonny must have the right tactic because he is the only person you paid any attention to!
 
Part of being an adult is not blaming your parents for all the nasty sh*t they did to you, intentionally or not, when you were young.    
That stuff happened over 25 years ago.   I'm sure there are several people here who were abused even worse than you were and have gotten over it--maybe they can give you some tips.  At some point you have to take responsibility for your own life and your own feelings and thoughts, PTSD or not.
 
I never heard of someone as young as you are "taking to the bed".  Usually only rich old widows do that.  It usually means you've given up on life.  You need to get out of bed while you're still physically able to do so no matter how crappy you feel, how much it hurts, or how tired it makes you.  You'll end up like that fat guy who went to have bypass surgery and they had to cut a hole in the wall to get him out of his room.
 
The injectable flu vaccine contains killed virus only.  They're DEAD and can't replicate and you can't get the flu from them, much less relapses.  I would hope someone didn't give you the intranasal attenuated virus vaccine as it is for healthy people only.
 
Your doctor sucks and you need to get a decent neurologist.  That's total BS that he's been waiting almost a year for your insurance company to approve IV mag or lidocaine.  If it's not approved within a few days and there is no further action on the part of the MD or patient to get it approved, it gets stuck in a folder, trashed, or if you're lucky, you get a denial letter.  He's lying to you.  You seem quite happy with him because he writes for pain meds even though they don't seem to be helping you a bit.
 
Never heard of a doctor "dumping" someone because they couldn't cure them.  Most of them will go right on treating you as long as somebody pays the bill; either that or refer you to a more specialized specialist.  Some of them will even treat you if nobody pays the bill.  Usually when a doctor dumps a patient it's because they are totally absolutely uncooperative with their treatment and there is no point in further treatment.
 
Is Alexander Mauskop one of the doctors you've been through yet?  Perhaps he is on your HMO's panel.  If not, maybe you can come up with the $300 for an initial consult somehow.  He's knowledgeable about clusters and takes into account other problems that you have when proposing treatment.
 
Also, Leigh, there are so many jobs for nurses in New York right now, full-time, part-time, in the hospital, in your home, in the field, that you could probably find SOME kind of work.  Lately I have had recruiters calling me even after I hang up on them.  Why don't you at least get out and take a class to keep your BLS current?
 
nopity
« Last Edit: Feb 16th, 2004, 7:54pm by t_h_b » IP Logged

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Re: Anyone have ideas?
« Reply #16 on: Feb 17th, 2004, 4:48pm »
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Quote:
You sound like a hateful little man, and if you think your negativity is inspiring, think again.  

 
 Shocked....how dare you judge someone who has took the time to respond to you, whether it be in a good or bad way...in my honest opinion like's been said, Jonny may post stuff you don't like, but have you considered that maybe you don't like it because the truth hurts.. Huh
 
Anyway if I were to say you're a self pitying bitch you wouldn't like it so I won't, I'll just say get a life RN or no RN you're maybe not as educated in this condition as you think you are....
 
PF vibes to you...
 
Cathy...
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Re: Anyone have ideas?
« Reply #17 on: Feb 17th, 2004, 6:29pm »
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You say you've been in cycle for 9 years ? I find that hard to believe that you cannot get relief. You say your an RN and there is not much you don't know about clusters ? It sounds like you don't no much at all about clusters if that's what you have. As others have said, if you are chronic and are an expert on clusters, you should know there are many things to take to stop the Beast. Or at least something to control the Beast to give you a life back. Not many clusterheads lay around in bed & do nothing. Most of us work, shop, dine, etc. during attacks and still manage to keep things in relative order. It's not easy, but it is possible. There are lots of abortives and preventives that it sounds like you may not have tried. Hope you can get your life back soon.
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Re: Anyone have ideas?
« Reply #18 on: Feb 19th, 2004, 4:10pm »
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I'm sure you all mean well, and maybe you've been so insular for so long you stick up for each other right or wrong.  However, let me tell you Jonny's approach is wrong.  I don't need to be spoken to like that by anyone, fellow cluster-sufferer or not, nor do I need the hypocrisy of someone else calling me judgmental and a bitch because I voiced my opinion.  I'm sorry, is that something only your tight little clique is allowed to do?  You don't know me, and you don't have the right to call me names.  I don't know or care what your cutesy little abbreviations stand for, but the person who did that knows what s/he can do with them.
 
I came here looking for support.  I'm not drowning in self pity, but like anyone in pain that most people don't really understand, I do feel sorry for myself sometimes and I have a right to.  If I gave the impression that I spend my life in bed, and I must have, it was an exaggeration, born of pain and discouragement.  When I first found this website, my first thought was: These are my people!  They understand!  But after reading your replies to me, as well as some of your other posts, I was wrong.
 
Since you claim to respect brutal honesty, here goes: I have read information on this site, to me and to others, that is dead wrong.  Examples?  For one, head injuries are most certainly known to trigger the onset of cluster headaches.  It's in the literature, and I also know from experience, since this 8-1/2 year long cycle was caused by a blow to the head.  For another, someone told a Britishwoman who was newly diagnosed that it probably wasn't clusters if she didn't want to die, or words to that effect.  People do have different levels of pain tolerance, and sometimes clusters start off relatively mild and worsen with time.
 
Alex Mauskop was my doctor when he first began his private practice.  I was his first cluster patient, and he was so overwhelmed by my history at that point that he told me to tell him what to do and he'd write the prescriptions.  Since then he's written a few articles and done a few studies, making a name for himself.  I went back to him in the early 90s, and he tried me on Prozac when it was new.  After a few doses I was seeing Martians, freaking out.  I liked him enough to send my sister to him a few years after that, but he nearly killed her by ignoring our similar reactions to drugs and prescribing one that made her extremely ill, then disappearing when we tried to reach him.  So no, I don't have too much respect for Alex.  Being a nurse doesn't make me an expert.  What does is the fact that I make it my business to research thoroughly, and my medical background helps in that regard, as does my IQ.  Nor do I subscribe to the belief that there's a magic cure out there, you just have to keep trying everything till you find it.  That doesn't mean I'm drowning in self-pity, just that I'm realistic.  This cycle will end when it does, just like all the others did.  All I have to do is wait it out. I thought the people on this site would help me do that by giving me moral support, but I guess I was wrong.
 
As far as the very private and painful feelings I shared about my childhood, and which, not surprisingly, were rubbed in my face, whoever said that is so very wrong as well.  Would you tell a rape victim to forget about that violation because it happened 25 years ago?  If trauma hasn't been dealt with, you feel it when you feel it, fresh and new as the day it happened.  In fact, that's part of the therapy, to relive it in order to desensitize yourself.  If you haven't had the misfortune to suffer through something like that personally, don't have the hubris to preach to someone who has, and who is trying to deal with it.  That, of all the inappropriate things that were said pissed me off the most.  Being supportive doesn't mean being the authority on the subject and instructing what, how, when and why to do.  It simply means listening and perhaps suggesting, not the crap I got from the majority of you (or maybe it just felt like a majority - being ganged up on gives that impression).  To those who don't fit this profile, I apologize.  But I don't think I'll be visiting this site again.
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Re: Anyone have ideas?
« Reply #19 on: Feb 19th, 2004, 4:38pm »
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Jonny, you would be a great councelor / supporter in a 12 step program.  I worked with them for years and your approach is exactly what they teach and preach. "Get off the fucking pitty pot and do somethign about your situation."  The problem is that most people are taken back by that and will not fight back.  And it s that fight that makes them change. Makes them take responsiblility for thier actions and change their behaviors.  
 
Many of you are very right and like I have said many times, pain meds do no, can not, and will not help CH. All they do is not make you care for fucking much that you hurt, but you still hurt.  If a person wants to live int hat type of stuppor then that is what they choose to do. We are all responsible for our choices.  I have hocen to come here and fightr back when people have attacked me because in looking at what I wrote I needed to get kicked in the ass to stop.  If this lady truely cam ehere for support then she needs to realize that support comes in all shapes and sizes.  And that sometime attacking the way that you think is the best way to help you.  I truely hope that she does come back and reads this.  As I believe that we can assist her in getting her treatment going in a possitive way rather then the slow spiral down that she is headed and maybe get her life back on a positive path as well.  
 
Tiannia
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Re: Anyone have ideas?
« Reply #20 on: Feb 19th, 2004, 5:28pm »
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Yawn!
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Re: Anyone have ideas?
« Reply #21 on: Feb 19th, 2004, 6:10pm »
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on Feb 19th, 2004, 4:10pm, worfsmom wrote:
Would you tell a rape victim to forget about that violation because it happened 25 years ago?  If trauma hasn't been dealt with, you feel it when you feel it, fresh and new as the day it happened.  In fact, that's part of the therapy, to relive it in order to desensitize yourself.

 
Yes, I would tell ANY kind of victim to stop blaming the perpetrator 25 years later, to deal with it, get over it; to stop blaming the spouse of the abuser (their mother) for not stopping it and to stop feeling like she owes them MONEY of all things; and finally, to take responsibility for their own future instead of living in the distant past.
 
And yes,  I do know first hand what I'm talking about.
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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Re: Anyone have ideas?
« Reply #22 on: Feb 19th, 2004, 7:20pm »
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on Feb 16th, 2004, 4:34pm, worfsmom wrote:
My CHs are atypical: in addition to the acute attacks you all get, I have a constant level of pain that varies in intensity.  
 
including the blows to the head that probably triggered the gene for CHs he passed onto me, I think she owes me for that.  Why don't you try living your life with those memories, having the PTSD destroy every relationship, and thinking you deserved to be treated that way because that's what your mother told you before you dare to judge

 
First off - There is no research that has been done to show that there is any gene that is passed down.  Also there are no research that shows that head trama of any kind triggers CH.
 
That being said. There is no one who owes you anything.  While the issues that you deal with on a daily basis are tragic and the situation that you faced for the first 17 years of your life where tragic. To sit at this time reliving it to desesitize yourself is total BS.  You really need to find a shrink that does not deal with psychotherapy and look for a doc that is more Gastalt-esk.  Psycho thereapy deals with the belief that only with years and years of discussing over and over the situations that you will gradually get better.  Rather what happens is you get stuck in the same patterns (thus destroying your own relationships) because you do not learn to think and act a different way.  Other types of therapy allows you to learn that what happened has made you into the person that you are today. That if you want to be a different person that you are the one that has to make the choices to change YOUR behavior and stop blaming everyone else around you. You are the one who choses to react to the situation that happened back then in a certain way and until you chose to react a different way you will always be dealing with it.  
 
Now if you want to get into a pissing match of "You dont know or undersand what I had to go through" we can, because my dear lady I would probably blow your socks off with my life story. But I will be damn if I am going to let that history destroy me. Same way I'll be damned if the beast of a CH is going to beat me either.  
 
One last thing, my dear. You are the one who asked for ideas.  You asked us for comments, you opened your self up for responses. If all you wanted was to vent then as you can see in other people posts that is what they ask for.   If you had truly read this site prior to posting anything here, then you would see how people talk here and would not have been surprised by the reaction that you got.  
 
Ok I will get off my damn soap box and take off my counselor hat.  
 
PF (that is a cutsy way of saying Pain Free which is in the intro that you should have read when you first logged into this site) wishes to you,
 
Tiannia
« Last Edit: Feb 20th, 2004, 1:05pm by Tiannia » IP Logged


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Re: Anyone have ideas?
« Reply #23 on: Feb 19th, 2004, 8:42pm »
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on Feb 19th, 2004, 4:10pm, worfsmom wrote:
If I gave the impression that I spend my life in bed, and I must have, it was an exaggeration, born of pain and discouragement.

 
...CH fucking hurts and needs no exageration.  Hell, the words do not even exist to describe this pain!  You are acting like a wealthy person going into a homeless shelter asking for a fucking dollar!
 
Tiannia, your typing sucks, but I love your attitude!   Grin
 
Chris
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Re: Anyone have ideas?
« Reply #24 on: Feb 19th, 2004, 8:57pm »
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on Feb 19th, 2004, 8:42pm, Prense wrote:

 
Tiannia, your typing sucks, but I love your attitude!  

 
LMAO............you're right Chris. That attitude is a Nevada (Southern part) thing. We all suffer from it.
 
Actually her Reply #19 could use a spell check but she was much improved with Reply #22.
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