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Topic: Barre-Lieou Syndrome (Read 4906 times) |
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romain
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Barre-Lieou Syndrome
« on: Oct 13th, 2003, 9:56pm » |
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Hi All,
I just went to see my new neuro (moved to new state). I really liked this new guy. He asked a lot of questions and focused on some of the things that have changed with my headaches.
He went through my medications and discussed what has and has not worked and what my previous neuro did and did not do.
He is fairly certain that I do not have CH (as a diagnosis) however, he is leaning towards something totally treatable called Barre-Lieou Syndrome.
An MRI will confirm his diagnosis. My CH last for hours rather than the typical 15 minutes and can go for days at a time. And the typical medication doesnt really work for me.
I had an EMG today. Not a fun procedure to go through.
Has anyone else been diagnosed with this syndrome or have had prolotheraphy done? I would like to know what to expect. 
I found a link discribing it at http://www.prolonews.com/prolotherapy_newsletter_headaches.htm Please note: this is someone else's web site and not my doctors.
Thanks!
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nancyc
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Friends don't let friends post drunk on mbs......
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Re: Barre-Lieou Syndrome
« Reply #1 on: Oct 13th, 2003, 10:37pm » |
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I certainly disagreed with alot of the info that Dr. Hauser had on his site...i hope you dont go by his information about chs..I loved the part about us going to the ER to get demerol...I have had chs for over 25 years and have only been to the ER three time and I certainly didnt ask for demerol...In fact, I begged for more imitrex....Not sure about Barre-Lieou Syndrome but plan to do some research on it now...What exactly is the MRI suppose to show your Neuro? Would like to hear more about what he finds out...Have you taken the ch quiz on the left? PLEASE keep us posted on what you find out...and Good luck, bro... ;Dnancyc
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| « Last Edit: Oct 13th, 2003, 10:43pm by nancyc » |
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Not4Hire
CH.com Alumnus
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...WAS PF since Oct.'02, but ...oh my...(CBusters)
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Re: Barre-Lieou Syndrome
« Reply #2 on: Oct 13th, 2003, 10:44pm » |
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...and to THINK: that all this time I have been making my own "250 mg of Horsetail Leaf Powder" by lifting the tails of horses.....
of course, Quote: Ross A. Hauser, MD is a very funny man. In his book he shares much of his personal life and philosophy, never sparing his own fallibility and humanity. This does not stop him from being a serious physician, however. For those of us who practice prolotherapy, his new book, Prolo Your Pain Away, is a welcome addition.
Order all the Hauser's books direct from Beulah Land Press at a 25-50% discoun |
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.....Ueli?.... oh, Ueli?
..and romain: I hope you have neither of these conditions
...really!
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Mantra: This will NOT kill me...This will not KILL me... This will not kill ME...
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nancyc
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Re: Barre-Lieou Syndrome
« Reply #3 on: Oct 13th, 2003, 10:54pm » |
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LOL, and i was trying to be nice after reading Dr. Hauser's site ....I think I may be finding a new neuro too, Romain..  nancyc....
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forgetfulnot
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Re: Barre-Lieou Syndrome
« Reply #4 on: Oct 13th, 2003, 11:06pm » |
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Prolotherapy! This guy needs a c/h enema, maybe he could see reality, else stick a light bulb up his as and jump on the sidewalk.
Just my observation, Lee.
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BobG
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Re: Barre-Lieou Syndrome
« Reply #5 on: Oct 13th, 2003, 11:38pm » |
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I Googled over to prolotherapy and found LESTER S. BLUMENTHAL, MD of La Jolla, California saying prolotherapy can fix every thing from arthritis to cluster headaches to whip lash.
Damn! This treatment must be amazing.
Listed there were a number of symptoms well described as the Barre-Lieou syndrome. These include pain reaching almost any part of the head and neck, visual blurring with ciliary spasm, mydriasis, dizziness, loss of balance, tinnitus, lacrimation, salivation, rhinorrhea, dysphagia, nausea, vomiting, forgetfulness, nervousness, and swelling and stiffness of the fingers.
romain, I have to ask, were you ever diagnosed with cluster headaches by a neurologist? I'm not being a smartass. I'd really like to know.
Using my little knowledge of symptoms of clusters and comparing it to the symptoms above I can see no connection in any way, shape or form and fail to see how any competent neurologist (or GP for that matter) could confuse the two.
IMHO, Not4Hire's receipe would help more than any form of prolotheraphy.
P.S. Hey Dr. Blumenthal.....read your site.........
Thanks for the laughs 
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romain
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Re: Barre-Lieou Syndrome
« Reply #6 on: Oct 15th, 2003, 10:58pm » |
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Hi,
Yes, my neuro in Michigan had diagnosed me with CH. The problem is that my headaches tend to go on for several hours and even days. Symptoms are similar (stuffy nose on one side, tearing, throbbing or pulsing pain). The headaches also tend to migrate from one side of my head to another within a few minutes.
My headaches are most painful around my ears and teeth. They have also changed severly, which is why when I moved I immediately looked for a new neuro.
I have now had three incidences of where my back will sieze up in a horrible spasm, I cannot lift my arms and it is so painful that it starts to sieze and grip my lungs and I cannot breathe. I have had two incidences where I have begun to black out and have great difficulting getting a breath. Thank goodness my husband was there both times that it happened.
The headaches are also more frequent and longer lasting. The severe ones require a visit to the doctor for a shot of Tramadol. They tend to eminate around my ears from the middle of the back of my neck.
This neuro believes that my posture is contributing to my headaches. He had me change pillows. He wants to confirm with the MRI but at the back of your head, about the middle of your neck, he said the nerve splits into three branches, one over the top of your head, the other two around towards your years.
With some people, the nerve splits too early and is embedded deeply into the muscle. Bad posture (head forward) exacerbates the muscle pinching on the nerve. He said that if you squeeze your finger until the tip turns red, he said that doesnt hurt; however, if you do that for several hours (sleeping with bad pillow) it would.
He is specifically looking for where the nerve branches out. He did an EMG because I have had problems with numbness in my left pinky and ring finger.
Anyway, I will know more at the end of the month.
He did tell me to come in next time I had one of my headaches. He wants to try the injection. If it doesnt work then it that is not my problem, however, if it does, well, I want to know what the pros/cons are before I let anyone inject me.
But, thinking back on how painful and suicidal one can become with really bad headaches, I may be willing to do just about anything to get rid of it.
Will keep you all posted. Friday is my MRI!
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