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The_CHosen_One
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Misdiagnosis?
« on: Sep 29th, 2006, 3:38am » |
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After suffering Chronic CH for several years now, I recently had a new DR try to tell me that I have been misdiagnosed for years and that I may actually have Trigeminal Neuralgia...Are these 2 closely related? And if so, is it possible I have both (Maybe the TN is triggering CH or vice versa)? All I know is I have several short attacks thruout the day, and generally 3-5 longer attacks pre day, stronger at night. I honestly can NOT remember my last pain free DAY...Could someone please help me clarify?
Sincerely in constant kip 7-8,
The CHosen One
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TxBasslady
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Re: Misdiagnosis?
« Reply #1 on: Sep 29th, 2006, 4:23am » |
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It's true that you can have more than one kind of headache going on at the same time.
There's some posts here...that discuss the Trigeminal Neuralgia.
I have CH and no other type headache..so I guess I'm not much help.
Others will come along and be more helpful.
PF vibes,
Jean
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TxBasslady
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Re: Misdiagnosis?
« Reply #2 on: Sep 29th, 2006, 4:30am » |
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You might check out the "headache links" link to the left of this page.
Jean
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How lucky I am... to have known someone who was so hard to say goodbye too.
Take a kid fishin
www.takemefishin.org
I adopted a Vietnam POW/MIA from El Paso, Texas!
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unsolved1
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A little confusing. You said ..."I have several short attacks thruout the day, and generally 3-5 longer attacks pre day, stronger at night." ... then you signed it ..."in constant kip 7-8".
Which is it? Are you in constant pain? If so, then it's probably neither type of headache that you've mentioned.
What meds have you tried? More importantly...What works to stop the pain? Is your new doc a neuro or a headache specialists?
Goodluck on getting a proper diagnosis.
UNsolved
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Charlotte
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Re: Misdiagnosis?
« Reply #4 on: Sep 29th, 2006, 8:44am » |
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Do you have any pain free time or does it ramp up & down constantly, worse at night?
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The_CHosen_One
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Re: Misdiagnosis?
« Reply #5 on: Sep 29th, 2006, 10:10am » |
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I am at a constant 7-8, but several times a day it ramps up to about a 9, sometimes for 10-15 minutes, sometimes for hours, but at night, I have at lease 2, sometimes 3 periods where I reach KIP 10. I have seen dozens of neurologists, HA specialists, and pain specialists, and of all the meds I have tried, the Caffeine ones for "Migraines" made it worse, due to an apparent Caffeine Allergy. They have had me on just about every opioid "Pain Killers", and some made it worse. About the only thing that helps a LITTLE bit is pacing or rocking, but even that doesn't work all that well (I need to add that in my current state, at no point in time during any 24 hr period am I able to "Lie Down" more than 5 minutes without being forced to get up and rock or pace). I honestly don't know what has kept me going for so long...
Sincerely in constant kip 7-8,
The CHosen One
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BB
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Re: Misdiagnosis?
« Reply #6 on: Sep 29th, 2006, 11:12am » |
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Hello
Its a bit hard without all the details but just wondering if you have tried oxygen and/or indomethacin, plus neurontin or lyrica ?
Some of your symptoms sound like hemicrania continua or chronic trigeminal neuralgia.
It would help if you can keep a diary detailing exactly how the attacks feel to you, where they are and how long they last for, whether triptans or oxygen can abort them.
I would think a good neurologist should be able to follow up on these symptoms and work them out for you. Its possible to get several conditions on top of each other though.
Good luck and painfree wishes to you
Annette
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The_CHosen_One
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Re: Misdiagnosis?
« Reply #7 on: Sep 29th, 2006, 12:59pm » |
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Hello, again. O2 was used about 2 yrs ago somewhat successfully, using 15L/minute for 15-20 minutes, but that only lasted about 6 months until it lost its effectiveness and they started getting worse. I have tried just about all the triptans unsuccessfully, Indo didn't touch it, neurontin made it worse, and I think I have used Lyrica, but I've been on so many meds it's hard to keep track. Most recently, we tried Lithium, which made them worse. Throughout the years and various neuro's, HA specialists, and others, I have heard such diagnosis as "Chronic Migraines" (yeah right), "Chronic Cluster Headaches", "Chronic Paroxismal Hemicrania", "Chronic Trigeminal Neuralgia", and even stated medically as "Chronic Intractable Pain". This is me in a nutshell...sorry if I rambled...wrote this in bits and peices inbetween 3 attacks...
Sincerely in constant kip 7-8,
The CHosen One
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Charlotte
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Re: Misdiagnosis?
« Reply #8 on: Sep 29th, 2006, 1:37pm » |
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Good luck. Hang in there.
Charlotte
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unsolved1
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Have you tried an Imitrex injection ? Have you tried steroids ?
Goodluck
UNsolved
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The_CHosen_One
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Re: Misdiagnosis?
« Reply #10 on: Sep 29th, 2006, 10:51pm » |
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Yes, I have tried the injections, and same result. I have tried several diffeent injections, including various steroids, and even so far as to try weekly epidurals, and no luck...OH NO...I feel another one!
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BlueMeanie
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Re: Misdiagnosis?
« Reply #11 on: Sep 29th, 2006, 11:08pm » |
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on Sep 29th, 2006, 10:10am, The_CHosen_One wrote:| I am at a constant 7-8, but several times a day it ramps up to about a 9, sometimes for 10-15 minutes, sometimes for hours, but at night, I have at lease 2, sometimes 3 periods where I reach KIP 10. |
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So you're saying 24/7 your having a KIP 7-8 with peaks of 10's. I cannot type, drive, sit or do just about anything during a KIP 8-10. WOW.... i really feel for you if that's what's going on.
Have you had an MRI/Cat Scan to rule out some sort of brain disorder ?. Not trying to scare you, but i've never heard of a constant CH like that. Most CH's last around 45-90 minutes.
Good Luck to you. Wishing you PF days.
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Jonny
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Re: Misdiagnosis?
« Reply #12 on: Sep 29th, 2006, 11:13pm » |
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on Sep 29th, 2006, 11:08pm, BlueMeanie wrote:| So you're saying 24/7 your having a KIP 7-8 with peaks of 10's. I cannot type, drive, sit or do just about anything during a KIP 8-10. WOW... |
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No!, the next question, Blue is.....how do you wipe your ass or make a phone call?
31 years chronic and I would have blew my head off if I was K-8 everyday.
Some people must not get it 
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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The_CHosen_One
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Re: Misdiagnosis?
« Reply #13 on: Sep 30th, 2006, 2:08am » |
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In reference to the MRI's, yes...I have had a contrast MRI and a Catscan done every month for the past year, my dr's hoping something will eventually show up. And as far as the pain, yes...I have a VERY hard time typing anything out...it's even hard to type out my ongoing HA diary. As far as "Surviving", I have a very understanding and knowledgable Caretaker who takes care of me...cooking, cleaning, sponge baths when able, calling medics if it gets too bad, etc. And yes, I HAVE MANY MANY times tried to figure out a way to end it all, but I am on a fixed income, which goes straight to rent and bills...I never even see any of the $$, so I have no way to BUY any form of firearms and no knowledge of where to get one if I had the $$...so all I can do is suffer...OH NO!! Another 10 in 30 seconds!!
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BB
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Re: Misdiagnosis?
« Reply #14 on: Sep 30th, 2006, 2:26am » |
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on Sep 29th, 2006, 10:51pm, The_CHosen_One wrote:Yes, I have tried the injections, and same result. I have tried several diffeent injections, including various steroids, and even so far as to try weekly epidurals, and no luck...OH NO...I feel another one!
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I am sorry to say that it sounds like your head is down the wrong way, no one would do an epidural for you for any type of headache. An epidural is to numb the lower part of the body from the waist down!
I have had a contrast MRI and a Catscan done every month for the past year, my dr's hoping something will eventually show up
Also no doctor would do MRI and CT scan every month for a year! You would have died of brain radiation by now.
I believe you are having us on. Please do not play games like this. Its not cluster you are talking about. Please do not post any more nonsense here.
Annette
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MJ
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Re: Misdiagnosis?
« Reply #15 on: Sep 30th, 2006, 2:30am » |
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Have gun will travel 
edit; line from a book or something
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| « Last Edit: Sep 30th, 2006, 2:33am by MJ » |
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MJ
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George_J
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Re: Misdiagnosis?
« Reply #16 on: Sep 30th, 2006, 2:44am » |
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on Sep 29th, 2006, 11:13pm, Jonny wrote:
No!, the next question, Blue is.....how do you wipe your ass or make a phone call?
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This isn't passing the smell test.
George
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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The_CHosen_One
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Re: Misdiagnosis?
« Reply #17 on: Sep 30th, 2006, 3:37am » |
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on Sep 30th, 2006, 2:26am, BB wrote:
I am sorry to say that it sounds like your head is down the wrong way, no one would do an epidural for you for any type of headache. An epidural is to numb the lower part of the body from the waist down!
I have had a contrast MRI and a Catscan done every month for the past year, my dr's hoping something will eventually show up
Also no doctor would do MRI and CT scan every month for a year! You would have died of brain radiation by now.
I believe you are having us on. Please do not play games like this. Its not cluster you are talking about. Please do not post any more nonsense here.
Annette |
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Forgive me for stepping in, but I am his caretaker (He is going through another one), and if you wish to contact us in private, I would be more than happy to forward his medical files to you for proof.
Sincerely,
The CHosen One's Caretaker
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BB
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Re: Misdiagnosis?
« Reply #18 on: Sep 30th, 2006, 4:52am » |
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on Sep 30th, 2006, 3:37am, The_CHosen_One wrote:
Forgive me for stepping in, but I am his caretaker (He is going through another one), and if you wish to contact us in private, I would be more than happy to forward his medical files to you for proof.
Sincerely,
The CHosen One's Caretaker |
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I think you misunderstood me. There is no need to prove anything to me. I can go by what The Chosen One has already posted.
Also there is no point in forwarding the medical file to me as there is nothing I can do from where I am. I would suggest you take the medical file to a good lawyer, as to have received weekly epidurals for headaches and MRI and Ct scan every month for a year for headaches would qualify for the biggest medical negligence case in medical history the world over and would see you win literally millions of dollars.
In the mean time, please think twice before posting.
Thank you very much.
Annette
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| « Last Edit: Sep 30th, 2006, 4:53am by BB » |
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kcopelin
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Re: Misdiagnosis?
« Reply #19 on: Sep 30th, 2006, 8:19am » |
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I love having a doc on board!
kathy
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George_J
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Re: Misdiagnosis?
« Reply #20 on: Sep 30th, 2006, 11:19am » |
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on Sep 30th, 2006, 3:37am, The_CHosen_One wrote:
Forgive me for stepping in, but I am his caretaker (He is going through another one), and if you wish to contact us in private, I would be more than happy to forward his medical files to you for proof.
Sincerely,
The CHosen One's Caretaker |
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...Ooookay.
So there's this guy, a helpless invalid, who is constantly living with a level of pain that most of us would find completely incapacitating who hasn't laid down or slept for years.
He pecks out messages on a computer a bit at a time when he's laboring under a kip 8, in between dramatic kip 10's. He's not hospitalized, but instead he's given sponge baths and is fed by his faithful caretaker, who offers to send his private medical records to a group of people who are complete strangers, most of whom are not doctors. He gets weekly epidurals, which have nothing to do with anyone's upper body, and monthly CT and MRI scans, which would make his head glow in the dark.
Remarkable.
George
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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chewy
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If you were my caretaker I would boot your ass out the door.
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Linda_Howell
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Re: Misdiagnosis?
« Reply #22 on: Sep 30th, 2006, 1:28pm » |
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Even without a Dr. on board here, enough of us can see through the holes of THAT nonsense.
Jeez, going to make a swiss cheese sandwich now.
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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Carl_D
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You'd in a straightjacket or dead with a constant Kip 7-8.
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AussieBrian
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Re: Misdiagnosis?
« Reply #24 on: Oct 1st, 2006, 9:48pm » |
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Judging by where his head is, I'd say an epidural would be very effective.
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Vulcrania horrendus - twice daily, then two at night in lieu of sleep.
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