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Barre-Lieou and Me

 

Barré-Lieou and Me  

While the title may sound like a pop culture movie title, it seemed appropriate when trying to describe the journey I have been on for the past couple of years, and still travel.   In this document I will go into detail of how exactly I think I got where I am, what exactly the documented symptoms of this medical condition are and how they relate to me, the treatment for my condition, and basically random thoughts and observations throughout.  

My goals in writing all of this down are twofold. Number one I wanted to try to provide family and friends some sort of explanation of what exactly I have been experiencing. I have been blessed to have in my life a wonderful group of people who care about me, but it has been difficult to try and explain what I am going through well enough to provide an accurate picture, especially as time marches on. Secondly I wanted to provide a fairly concise account of my experiences and observations for my doctor, for his personal use or to share with other medical professionals as he sees fit. I know he has put in a great deal time and effort to treat and further research my condition, and as it is rare (or at least rarely diagnosed) I wanted to do what I could to help provide more understanding into what my experience with this has been. It may or may not help someone else in the future, but the least I can do is try.  

A Brief History of Me  

As a child and later as a teenager, I was active…to a point. I loved adventure, climbed a lot of trees, and was very into skiing and swimming. I always wanted be more involved in team sports, but even as a child I would participate for one or two practices and throw in the towel. The only exception to that was my high school swim team.

Looking back I now realize why. It hurt…a lot. Wind sprints, running, jumping and the like for any kind of duration was really hard to do at all and flat out painful both during and afterwards.   For example: In high school I tried out for the track team. I consulted with the coaches and my doctor on my previous lack of success with running, and was given a structured plan to help me ramp up slowly. The first warm up run, about a quarter of a mile, I developed a sharp stitch in my side, a pretty normal condition for runners to feel, so I tried to walk it off and otherwise didn’t worry about it. After the side stitch didn’t go away for about a week, my mother took me to the doctor, where I was diagnosed as having actually ripped the muscle in my side.    

In college and later I would try various forms of aerobic exercise such as aerobics (requiring an ability to follow choreography I didn’t have), treadmills (could only walk on, not run), Nordic Track like machines (caused major hip joint paint), and stair steppers (very low levels only, otherwise knee joint pain). I had varying success (success being judged based on how much pain I experience either during and/or for days after a workout) determining that weight training and generally low impact exercise were the only viable options for me. My personal conclusion at the time was that I was basically a wimp who seamed to have a very low pain threshold.   The exceptions to that rule were skiing, short runs with long breaks sitting on the chair lift (as long as I didn’t do too many runs with big moguls, those WOULD hurt), and swimming, obviously a no impact exercise where I was able to compete in distance events.  

Another physical aspect that appeared my Sophomore year in college was a problem with migraine headaches. Over the next 10+ years I tried multiple medications, had CAT scans and MRIs, and generally found myself at the hospital once every one to two years for headaches nothing but large doses of morphine or other such pain meds administered in the ER could touch. I started seeing a very talented chiropractor in 2001, and within 6 months was able to get off all of the medications, reducing my almost daily migraines to closer to a monthly occurrence.  

In 1998 I was in a car accident, rear-ended at an angle, causing a lot of injury from my neck all the way to my lower back (even with a seat belt on). The injury eventually healed, but of course I never felt as strong as I had before the accident.  

In 2003 I became pregnant with my first daughter, giving birth in 2004. My second daughter came along 17 months later in 2005. Both pregnancies were considered high risk, with bleeding issues and a great deal of joint and muscle pain. One problem I had sent me to my Naturopathic doctor for the first time, having been told by my more traditional doctor that the pain I was experiencing was simply a part of pregnancy and basically I should just deal with it. I was having stabbing pain in my abdominal area, on the sides, which was so intense it would literally drop me to the floor screaming. I could hardly get out of bed to go to the bathroom. Dr.Peterson diagnosed muscle spasms, equating them to a Charlie horse on either side of my belly. The fix was to increase my Magnesium levels (which he had tested and found to be very low) and to physically work the muscles into relaxing. An excruciatingly painful process, however I was able to function again within a couple of weeks. The pain was definitely worth the gain.  

What I later discovered is that my joints in general are more lax, or hyper reflexive, than most. Pregnancy of course loosens womens joints even further, as the bodies preparation for giving birth (not that it helped me much, 2 C-sections later). After my 2nd pregnancy, I (again) didn’t feel as strong as I had before, and started to increasingly feel more joint pain in hips and shoulders. Almost 3 years later I still have to sleep on my side with a pillow between my knees and under my arm to alleviate the painful stretch.  

This brings me to Fall 2006, where the real trouble began. A major attack of symptoms, including a full blown panic attack, sent me to the ER one afternoon, marking the beginning of a fast acceleration of my condition. Within 3 months I was practically bed ridden, risking vertigo to the point of not being able to walk, nausea to the point of violent vomiting, and of course misc. painful symptoms whenever I got up (see below for further details). I saw 6 different doctors (including a neurologist, physical therapist and psychiatrist), had a CAT scan and 2 MRI’s, concluding with diagnosis unknown.  

Enough was enough so I went back to my Naturopathic doctor, Dr.Peterson. He ran his own tests, performed his own exam, and gave me a book on prolotherapy to read. One section of the book went into a condition called Barre Lieou syndrome. A light came on, the heavens opened up and sang, I had my answer! Okay, okay, it wasn’t quite that instantaneous, but it did grab my attention enough to send me to my computer and start researching.  

What is Barré-Lieou Syndrome?
    

According to www.wrongdiagnosis.com, Barre Lieou syndrome is summarized as “a rare condition where trauma (such as pinching by adjacent vertebrae or arthritis) to the sympathetic nerves located in the spinal area of the neck results in a variety of neurological symptoms.”   Also mentioned by www.wrongdiagnosis.com: “Barre Lieou syndrome is listed as a "rare disease" by the Office of Rare Diseases (ORD) of the National Institutes of Health (NIH). This means that Barre Lieou syndrome, or a subtype of Barre Lieou syndrome, affects less than 200,000 people in the US population. 
Source - National Institutes of Health (NIH)”    

What are the symptoms of Barré-Lieou Syndrome?
  

According to www.CaringMedical.com, the symptoms that characterize Barré-Lieou syndrome (and how they relate to me) are as follows:  

Headache – As mentioned above, I’ve been experiencing headaches classified as migraines for the past 15+ years. The headaches themselves have varied, some starting at the base of the head or neck, others being more obviously caused by sinus pressure and pain. The traditional doctors (including neurologists) I saw prescribed a multitude of medications, causing weight gain and generally only working for a short time, when at all. Every one to two years I would get a migraine so violent that all of my pain medications put together wouldn’t touch it and I would have to go to the emergency room to be pumped full of morphine (or some other such drug).    Another head pain that I experience, that may or may not be listed as a “headache”, is a sharp pain on the top or side of my head that starts as a heavy pressure and escalates to what I can best describe as feeling like a railroad spike or wooden stake being hammered into my head. Sorry about the visual that may have envoked, but I can assure you the visual is far preferable to the actual sensation. It was one of these such localized pains that was a part of what I refer to as my first big attack in 2006.  

Facial pain – This was one of the first of the more unusual symptoms to appear (Fall 2006), signaling the beginning of the end of my being able to function on a normal basis. My facial pain feels someone like a combination of a very deep sunburn and exposed nerves endings (see the section on “pins and needles”). Needless to say, it’s quite uncomfortable. Another point of note is that over the counter pain medication did not touch this pain.  

Ear Pain – n/a  

Vertigo – I first started having major issues with this approximately 5 or 6 years ago. After falling in the shower I sought medical advice, at which point I went through a multitude of test to check my heart rate and blood pressure. After wearing a monitor strapped to my chest for a week, I was pronounced fine, yet the symptoms continued on an inconsistent basis. After my first major panic attack in fall of 2006, the dizziness became increasingly worse until it came to the point where I could not get out of bed without planning for a few minutes to try to adjust and balance. Then even that became almost unworkable.  

Tinnitus – Ringing in the ears. This is something I’ve experienced with increasing frequency for the past 10+ years. It seems to be exacerbated by any powered on electrical equipment such as a stereo or TV. An irritating symptom, especially when trying to enjoy a good movie, but something I have just gotten used to.  

Hoarseness – My voice did start to change somewhat, although I have noted that when that occurs it is accompanied by the tingling/numbness in the back of my throat and tongue that I noted in other areas. I first felt this symptom in Summer of 2006. Concerned the numbness was a sign of some sort of allergic reaction, I called the doctors office and was directed to the Nurses station. There I was told I was fine and asked please not come in for such unwarranted reasons.  

Neck pain – I had neck pain almost constantly after my car accident in 1998, which I of course made sense and I attributed solely to that. Even years later the stiffness and tightness remained. I found a very qualified chiropractor in 2001 and felt better for the first time in years, but the relief was only a temporary fix as it was not treating the underlying issue.   

Severe fatigue – This is something that also has progressed over the past few years, getting quite noticeable in early 2006. Again, having recently had two children fairly close together and reaching my 30’s, I assumed other causes. Who wouldn’t? It simply became increasingly difficult to get out of bed and to push through the day. Another more unusual factor that started in the Fall of 2006 was the inability to sleep without sleep aids. I didn’t just toss and turn and night, I was fully awake with my heart pumping like I had been exercising. It was simply easier to get up and read a book or clean my house. It was also problematical if on the rare occasion I tried to nap during the day. As I drifted off to sleep I would experience a jolt, a feeling akin to an adrenaline hit combined with chest pain and heart palpitations. This was not only uncondusive to rest but increased my anxiety and bodily strain tremendously. Not surprisingly, no matter how tired I am now I try to avoid napping.   

Muscle weakness – Once my symptoms started progressing seriously in fall of 2006, I noticed that as the day would progress I would start shaking all over. The only things I can compare the sensation to are substance withdrawl (though not having been through that per se, it’s only a guess) or the shakes you get when you have worked out beyond the point of fatigue. Mentally I have always felt like a relatively strong person, but my body was not working as my mind was willing it to. Eventually I would have to lay down before I fell down. This, combined with the vertigo and other painful symptoms confined me to my bed for months in the winter of 2007.  

Sinus congestion – A number of the headaches I had experienced over the years appeared to be sinus congestion related. A sinus headache…okay, that I could deal with. Regular pain medication wouldn’t alleviate the pressure, but a formula designed for sinus pain would, so my already overflowing medicine cabinet now became stocked with Dristan Sinus. Once I started treatments I was easily able to identify these headaches as a true symptom of my condition, as they would come and go with the cycle of treatments.  

A sense of the eyeball being pulled out – I’m not sure if I would describe it quite like that, but when my symptoms are at their worst I can feel eye pressure, and the sensation akin to a sever burn on the back of my eyeball. Very uncomfortable, yes, and quite disconcerting.  

Numbness – The numb/tingling in the back of my throat was a precursor to future numbing sensations that traveled over my head and across my face in increasing stages. In Spring of 2006 I felt half my face go numb, the sensation carrying down my arm. Fearing I was having a stroke I called an ambulance, and was wisked down the OHSU Hospital for a quick review and lots of waiting. After making into a room after midnight, I was finally sent for more extensive testing in the early am, where they looked at my arteries and blood flow. Pronounced fit as a fiddle and diagnosed with an “Atypical Migraine”, I was sent home. My big attack in Fall 2006 included some of these sensations as well, initiating like a cascade of water over my skill. Numbing can mean different things to different people. To me it feels something like dental novocaine that has worn off just enough to get rid of that fat feeling. You sort of feel it, and sort of don’t. And of course there is still that layer of nerves on fire laying over the top.   

A pins-and-needles sensation of the hands and forearms – This is one of my most noticeable symptoms, in that it is so unusual as to be easy to track. The sensation actually started with my head (combined with the numbness into a sort of mixed message swirl of sensations), then moved down to my arms. The description of pins and needles may be apt, but only if you think of it in it’s strongest sense (you sat of your foot for 3 hours and the blood flow is coming back with a vengeance). Having had Shingles as a teenager (another odd thing for me, as it is usually seen in the elderly) I understand what exterior nerve pain is like, and so have generally described this sensation as feeling closer to an exposed nerve on your skin… or I should say hundreds of them. This observation is backed by the amplification of this symptom when air is blown over the area, like in a breeze or with a fan. When the nerves are flaring, it’s time to turn of the vents in the cars air system. Ouch!  

Corneal sensitivity – I have been sensitive to light changes for as long as I can remember. Optometrists have told me that some peoples pupil simply do not dilate well or quickly enough. Extra sensitivity to light was something I had always noted and associated with my migraines. As things got worse at the end of 2006 I noted an increase in these feelings, now including dry/burning/pins and needles types sensations as well.  

Dental pain – I had 3 root canals between 2005 and 2006. Enough said? Unfortunately the phantom pain inexplicably seemed to keep returning. In hindsight, I could probably have avoided all that time, pain and money. Now my dental pain has definitely defined itself as another symptom that appears to flux with the cycles of treatments.  

Lacrimation (tearing of the eyes) – n/a   Blurred vision – This is one of the symptoms I would experience with my migraines, but when my other symptoms started increasing in severity, so did this one. Soon my vision would blur with increases pain and discomfort levels from the other areas, not just with headaches. With two small children I always have to guage how I am feeling very carefully, to determine if it is safe for me to drive.  

Facial numbness – see “Numbness”   Shoulder pain – This was not something I felt much of initially, amazingly enough. But as other symptoms have forced me to sleep on my sides (my neck pain would flare if I slept on my stomach, and my heart would palpitate and send me “jolts” if I slept on my back) my shoulders have shown increased strain in between treatments, sending pain radiating down my arms increasingly.  

Swelling on one side of the face – It has felt like that on really bad days, but I can’t really be sure.  

Nausea & Vomiting – This is one of the worst of the symptoms for me, as far as my willingness or ability to deal with it well, and really pushed me over the edge. The nausea really started in Fall of 2006 (my pregnancies of course I don’t count), getting much worse within a span of weeks and finally leading to regular vomiting by winter of 2007. Every time I got up I would be hit with the vertigo which would push the go nausea button to my stomach, and if the action was not quickly aborted would end with me in the nearest bathroom. The only way to avoid it was to not get up at all.  

Localized cyanosis of the face (bluish color) – n/a (that I am aware of)  

Other symptoms (not listed on the CaringMedical site).

Some I’ve found in other documentation re Barre Lieou syndrome, some I haven’t but have without a doubt connected with my condition via the ebbs and flows associated with my treatments:  

Anxiety - A bit of stress is one thing, but in the fall of 2006 I experienced my first full fledged panic attack. Unless you have experienced one yourself, it’s hard to describe. It’s the feeling of falling, drowning, and suffocating all in one.  

Chest Pain – This symptom is very closely associated with the anxiety for me. Of course when you feel shooting pains in your chest that I can only guess feel somewhat like having a hear attack at their most intense, it simply follows that a significant amount of anxiety will come along for the ride.  

Nystagmus (beating rhythm of the eyes) – this is actually a more recent symptom that has started in the past few months. While not painful, it can be an irritant and somewhat distracting, like a random muscle twitch you have zero control over. It’s usually accompanied by slightly blurred vision and some disorientation.  

Leg Pain – Similar to the shoulder and arm pain. It strikes in one of two ways. One, muscle fatigue and pain very similar to bad flu symptoms. Two, sharp muscle pain in my calves and or my thighs. This has actually become a more and more prominent problem, like the shoulder pain. To be active I have to be able to walk (or chase when dealing with my toddlers), and when my legs are hurting at varying levels and shaking with every step, it becomes a much tougher prospect.    

What is Prolotherapy?

According to Prolotherapy.com:
“Prolotherapy is also known as nonsurgical ligament reconstruction, 
and is a treatment for chronic pain”
"Prolo" is short for proliferation, because the treatment causes the proliferation (growth, formation) of new ligament tissue in areas where it has become weak.”
“Prolotherapy uses a dextrose (sugar water) solution, which is injected into the ligament or tendon where it attaches to the bone. This causes a localized inflammation in these weak areas which then increases the blood supply and flow of nutrients and stimulates the tissue to repair itself.”

According to Prolotherapy.org:
“Prolotherapy is a simple, natural technique that stimulates the body to repair the painful area when the natural healing process needs a little assistance.”
“The basic mechanism of Prolotherapy is simple. A substance is injected into the affected ligaments or tendons, which leads to local inflammation. The localized inflammation triggers a wound healing cascade, resulting in the deposition of new collagen, the material that ligaments and tendons are made of. New collagen shrinks as it matures. The shrinking collagen tightens the ligament that was injected and makes it stronger. Prolotherapy has the potential of being 100 percent effective at eliminating and chronic pain due to ligament and tendon weakness, but depends upon the technique of the individual Prolotherapist.”
“Prolotherapy works by exactly the same process that the human body naturally uses to stimulate the body's healing system, a process called inflammation. The technique involves the injection of a proliferant (a mild irritant solution) that causes an inflammatory response which "turns on" the healing process. The growth of new ligament and tendon tissue is then stimulated. The ligaments and tendons produced after Prolotherapy appear much the same as normal tissues, except that they are thicker, stronger, and contain fibers of varying thickness, testifying to the new and ongoing creation of tissue.”

So basically, the treatment I receive for my condition is shots up and down and at the base of my neck…a LOT of shots. Dr. Peterson told me I get over 100 shots per session. Yep, every time. Granted he is not breaking through the skin with every shot. He breaks through once, injects, pulls the needle out about halfway, changes the direction, and injects again. That occurs a few times for every entry location, and there are about a dozen or so of those.

Now the question everyone has on their mind, “Does it hurt?”. The answer is simple, “Yes, a LOT”. However you have to look at the bigger picture here. Less than an hour of really intense pain, with some recovery time over the next couple/few days, enables me to be a functioning human being. I basically bedridden before I started getting treatments, and now my symptoms are alleviated enough that I am up and active for weeks at a time. That to me is TOTALLY worth a brief episode of intense pain.

I refer to myself as being on a medical roller coaster. A typical “cycle” for me is as follows:
 * Prolotherapy treatment, in bed with a heating pad on my neck for the duration of that day.
 * About a week of recovery time, getting up more and more every day, but having to be really careful not to overdo it and backslide a bit.
 * A gradual elimination of symptoms and I make my upward swing, culminating in 1-3 symptom free weeks.
 * Symptoms start to re-emerge, but not always in the same order. Sometimes it’s the facial numbness, pain and anxiety first, other times it’s the arm and leg pain first.
 * Symptoms continue to increase and compound, my downward swing. Once the vertigo kicks in, I’ve usually got so many other symptoms I’m down for the count until my next treatment. The better the cycles, the fewer the symptoms and the less down time I have prior to a treatment.

When I first started getting treatments, I was getting them every 3 weeks. Then we went to 4, then 5, then 6. We tried 8 a couple of times, but I seemed to backslide a bit, and so we went back to every 6 weeks.

Fall of 2007 Dr. Peterson concluded that I wasn’t bouncing back as quickly as he thought I should be, so we decided to upgrade me (so to speak) to a procedure called PRP, which I referred to privately as Mega-Prolo. I don’t know all the technicalities of it, but basically it involves utilizing some of my blood in the shots. There are then 2 sets of shots (1 to anesthetize the area, the second the prolo shot), but in fewer locations as the results are MUCH more intense. The injection pain is not as intense because of the anesthetic, but the bodies reaction is far worse. Dr. Peterson certainly knows how to get the best bang for the blood buck for that procedure, I guarantee you that! And he doesn’t even rely on high tec equipment, preferring methods simpler yet more effective, based on his experience (which is considerable).

Fall of 2008 we decided to go back to the regular Prolotherapy. Although I was getting treatment every 6 weeks consistently (much preferable to every 3 weeks) I had noticed that it was taking me longer to recover, and that more and more often I was not completely getting rid of all my symptoms between cycles, as I had before. Obviously we were going in the wrong direction, so we switched the track back to what had been working, however slowly.

That brings me to now. I know based on my doctors own research and discussions with his colleagues who have treated Barre Lieou, that I am the exception to rule in that I am not yet completely recovered. The average seems to be 6-8 treatments, some more or less of course. And it’s pretty much a cure, not a temporary fix. I am still on my roller coaster, significantly so, and as yet do not see the light at the end of the tunnel.

I have hope though, and happen to be a firm believer in God. How could I not be? I have a condition that almost no one has heard of, and my naturopathic doctor not only knows the treatment, he happens to specialize in it and instructs others. And I have the most patient and supportive husband in the world, who takes my physical and emotional highs and lows in stride, even though it’s a very big strain on him as well. I have 2 beautiful, wonderful little daughters, and other family and friends who love and support me. I am not dying, just in chronic pain and periodically disabled. It could be much, much worse.

So this is my story, Barre-Lieou and Me.  It’s not over, but then neither is my life, especially when there are so many things to live for.
 

Quick notes:

I would like to encourage people to leave comments on your thought on what I've written. As one person noted, who has also been diagnosed with this condition, you generally look outwardly fine while you are in the throes of dealing with lots of symptoms. This has been a really tough road. It means the world to me to hear from others with knowledge or experience in this condition. Thank you.

Again, a reminder to others dealing with this condition (either as a patient or medical practitioner) I have been told that my response to treatments is not as good as others generally experience (majority of people don't need more than a dozen treatments, usually half that), so please don't lose heart if it takes more than one or two treatments to feel like things are getting better. They really SHOULD get better within a few treatments.

 Also, I have received permission from my doctor/prolotherapist, to refer anyone to him who has questions, needs a second opinion, or wants to talk about my case. Just contact me directly for that info.

rmcfarland rmcfarland 36-40 31 Responses Sep 24, 2008

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Thank you for sharing your personal experience. It helped me a lot reading you. Hope you are feeling better. Good luck to all in this forum.

I have very similar symptoms.....how do I get in touch with the doctor that is treating you?

Thanks, Margaret

I know this is what I've had since a car accident that led to neck surgery as well as a brain injury , damage inner ear, severe tmj. Been suffering for seven years no answers. I live in Colorado are there any doctors here. So far I mention a sympathetic nerve disorder and I get this blank look followed by that look a doctor gives when you say something to aid in a dx an they think you are trying to be a doctor . I can't believe how similar your symptoms are to mine.

Hi after reading some of these stories I have realised Im not going mad. I hit the top of my head after bending down under an open cupboard door in my kitchen. After hitting my head about 2-3 weeks after I started getting headaches. I had suffered with migraines for years but these headaches were different. I knew when a headache was going to start as it would start in my neck, The top of my head would feel sensitive and pressure like something pushing down on it, The roof of my mouth would feel like I had burnt it, my face and lips would go numb and my arms and hands would be tingling. I had an MRI that came back clear but the headaches still kept happening on and of. No tablets seemed to help and these symptoms have carried on for over 2 yrs now. Only recently I have started to get weird sort of vibrations in my head. They started off quite far apart, about 1 a week and within 2 months I practically have them all the time. I have been had panic attacks worrying about all these symptoms and seem to be worse, the vibrating seems to be going right through my body now. My neck still hurts Im really depressed and have booked an appointment to see a neurologist this week. I seem to have most of these symptoms but my eyes are not burning and I seem to have this vibrating. Not sure If anyone else has had it or if this is What I my have!!!!

I have these symptoms as well, minus the vertigo thank the Lord. Pain is just pain and doesn't affect me at all, I can deal with that. But what I cannot stand is the tinnitus, these ear noises are driving me to the brink of madness! I noticed you stated that, at least for a time it alleviated ALL of your symptoms, and was wondering if tinnitus was one that it relieved. Also did/does your tinnitus fluctuate greatly in volume throughout he day. Mine is relatively quiet when I wake up but becomes hell a few hours into the day. Your response along with honesty is more than greatly appreciated. Thank you very much. And I'll keep praying.

Without a doubt you have Lyme Disease. See a Lyme literate doctor ASAP. Been through all that. Better now.

Reading through your symptoms I was nodding my head...well as much I I could! I have suffered migraine since I was 14, since I had five rear end shunts in the car (yes five, none of them my fault!) they have worsened. I put it down to the whiplash and diagnosed bulging discs! The vertigo and nausea/vomitting, ticking both boxes there but only occasionally but almost every time I get a migraine attack! The "shivery" feeling right from the top of my head, down my arms, has been happening for years, at least 15. Again, I put it down to the discs in my neck! Numbness in my face, that has only just started and has been mentioned to my GP, he said to go back if it worsened. Pounding in my ears if I move too quickly and then stay still eg going out to bring washing in. Pressure at the ba<x>se of my skull. Blurring vision, which I put down to age (I'm 52). Sleepy during the day, insomnia but I force myself back to sleep. I get what I can only describe as butterfiles for no reason and feel as if I can't get enough air into my lungs.<br />
<br />
I could go on, but I think you get the picture. I notice you're in the USA, I'm in the UK, so I don't know what's known about it here being that it's "rare". My family seem to have a thing for rare diseases!

The first prolotherapy treatment will make you think you are dying. I was miserable for about 7 days before it got better. My doctor said that the worse you feel afterwards is a gauge of how much damage you have. It also is a good sign that the prolotherapy is working. No pain, no gain is true with this stuff. Depending upon how injured you are, the progress and pain after procedures can take some time. It may take as much as six months to see results from a single prolotherapy session. Also keep in mind that treating just one location may not be enough. We do not realize that although the pain is coming from the neck and head, the pain may be a problem with instability in our lower back. If you pelvis is shifted to the side, your head does not know where to be and your head will keep shifting around and contributing to muscle spams. It is one big vicious cycle. Be patient and do not give up. It may take six sessions to see results that stick. Sometimes we see results for just a couple of days and that is because the swelling created during the injections temporarily decreases the instability. When the swelling goes down, you go a step backwards and have to wait for the healing to do its thing. It takes a lot of time, patience and unfortunetly a good bit of money.

soohoo29 - I had that problem with my first prolotherapy session. It caused the worst migraine of my life & a week in the hospital as a guinea pig with doctors who did not accept prolotherapy as a legitimate practice nor facet joint syndrome/Barré-Lieou Syndrome as a correct diagnosis. I was terrified. I was in so much pain I literally could not think.<br />
<br />
Thankfully, my actual Dr took the time to talk with me about it and not treat me like it was all in my head. She explained that the initial prolotherapy can put some extra pressure on the nerves, especially if like in my case my facet joints had been damaged for so long that my spine had actually adapted to an incorrect alignment as being it's "normal" position. I will not be able to achieve a full recovery, because of my spine has been misaligned with the joints damaged for so long.<br />
<br />
Besides the initial injection possibly putting a bit of extra pressure on the nerves for a little while...Once the inflammation goes down & after several prolotherapy treatments the relief is measurable. Your doctor is correct about the realigning affecting symptoms. <br />
When you have so much pain that your life revolves around coping w/ pain - any little bit of relief is a blessing. Stick with it!

I'm curious as to how everyone is doing. I just got diagnosed with Barre-Lieou. I had my first prolotherapy, and it did nothing but make old symptoms resurface. It scared me quite a bit. The doctor says this can happen sometimes as your neck is realigning. Anyone else had this experience? He says I should notice improvement on the second one. I'm curious if anyone has had 100% recovery as the caringmedical site says you should. And also I'm in Southern Ca. I wonder if any has opinions or good experiences with any docs out here. Thanks and God Bless you all. S

Any doctors or suggestions for Billings Montana???

If you are in NoVA/VA/DC/MD area & have Barre-Lieou Syndrome, Facet Joint Syndrome, Fibromyalgia, or have been constantly misdiagnosed and have symptoms like those of Barre-Lieou as the folks above have mentioned. I highly recommend Dr Cindy Zhang. <br />
No, I don't work for her office, but feel that she's practically saved my life from a miserable existence... starting by correcting a lot of misdiagnosis and wrong meds.<br />
<br />
Dr Cindy Zhang<br />
Pain & Arthritis Center<br />
(703) 865-6235<br />
4001 Fair Ridge Dr, Fairfax, VA 22033<br />
- or her other office -<br />
14904 Jefferson Davis Hwy<br />
Suite 305<br />
Woodbridge, VA 22191

Like many of you, I just want my life back! I went to ENT specialists, neurologists, chiropractors, you name it. Some, including my PCP, had never heard of Barre-Lieou Syndrome. After four sessions of prolotherapy, the sports medicine doctor who finally diagnosed the problem finally decided that i was not a good candidate for prolotherapy. Then he sent me for osteopathic treatment which gives back some energy to me for about two days, but still no permanent relief from the incessant tinnitus. Vertigo symptoms tend to crop up whenever severe weather patterns occur. Basically, I just take one day at a time and keep searching in earnest for a doctor who can truly help me. It's comforting (somewhat) to know there are other people out there with the same problem. Sharing information with other people experiencing the same syndrome is the only way we will all get through this until a cure is found.

Stick with the PRP (platelet rich plasma) injections. Also combine it with prolotherapy. The PRP is prolotherapy on steroids. Please remember that the results will take time and you will get better and better. I have put up with this pain for nearly four years and the best and most productive treatment has been the PRP and prolo. So I will encourage, encourage, and ENCOURAGE you to stick with it. It hurts like nothing else. This will stablilize your neck and head thus eliminating the Barre-Lieou symptoms. In addition to all the pain in the neck I also have nausia, ringing ears, and the eyeball pain that is only described as your eyes are being "ripped out" of your head. During my 9th or 10th sympathetic nerve block, I actually felt my eye go numb. With each nerve block I can feel the path of the medicine go down and up my right chest into my neck. If you drew what you felt, it would look like the anatomy pictures of the nerve. The first one lasted about 3 days, then later ones lasted 7 days before they started to wear off. The last one has made it two weeks and counting. You may want to consider talking to your doctor about the sympathetic nerve block. It will provide you with relief while the prolotherapy and PRP have time to fix your instability. When you live like we do, microsteps of relief are priceless. And to answer your question, yes it does get better even on the days you feel like you are walking through concrete.

I just read your story and can so sympathize with the journey that you have been on. I was in a car accident on January 27,2010 and have been diagnosed with Barre-lieou. I have recently started blood platelet treatments in my neck and lower back. This journey of barre-lieou has not allowed me to work or even function as I used to and it is so hard for people around me to see what is going on in the inside. After a year things should be better right? I am thankful for being able to read your experience and the comments that have followed thank you.

I said I would report back and here it is. After 8 sympathetic nerve blocks for the Barre-Lieou, I HAVE HAD SUCCESS, RELIEF, and HOPE. The first couple of injections only lasted a few days, but the last one made my eye right eye go numb and it has been two weeks since the injection. There is an occassional twinge around the eye but not much behind it. I still have some pain in my forehead and the interior part of my head, but my percocet consumptions has gone from a minimum of 2-3 per day down to ZERO some days It has made the oxycontin more effective and it now provides actual relief.<br />
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I hope some of you will give it a try. It has been worth it for me. It is nice not to feel like somebody is ripping the eyeballs out of your head all the time.

Wow, so amazing that so many people have the same issues as I have been through. I had my car rearended in 2006 and had nothing but problems for two years. - Shingles, strep throat, bronchitis, vertigo, blurry vision, tinnitus, ear pain, three cracked teeth and ended up having a bridge over them, nerve pain and myofascial pain syndrome. I'm sure I am forgetting something. Anyway, my physio was covered until Jan 2008 and within a month of not having physio, my pain and muscle tightness in the neck reappeared. By April, I was having pain in my left shoulder and starting to have numbness in my right arm/hand. Had an MRI done (finally, after much prodding) and dr discovered I had a ruptured disc and bulging disc from C5-C7. I saw the neurosurgeon and he diagnosed Barre Lieou Syndrome. I was to have neck surgery in Feb 09, but because I was going for physio (myofascial release), I was holding my own. However, after paying for that long, it was getting too expensive so had to cut back and then the problems progressively got worse. Had surgery on Sept 30, 2010 and had two artificial discs put in and I feel so much better. I still have a little nerve pain if I sit for too long at work on the computer, so I just take some Advil and do a little stretching. So far, so good. My dr never recommended the prolotherapy. We are presently fighting with the insurance company to be reimbursed for all the payments I have put out over the last two years. It's been an uphill struggle to find out what has been going on over the last four years. I wish you all the best and hope that maybe some of my information may be of some help to you. I really found the myofascial release to be a big benefit. I'm really hoping my problems are over for good. Good luck, everyone.

I was rear-ended in February of 2007 and ended up with chronic whiplash, chronic muscles spasms and chronic pain. Like many of you, I've been to various doctors who did not have any answers for me. My physiatrist is now thinking I have Barre-Lieou Syndrome and he has recommended a SYMPATHETIC NERVE BLOCK. <br />
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I have been seen by the following doctors, neurologists, neurosurgeons, rheumotologist, physical therapist, chiropractors, upper cervical chiropractor, geneticist, the Chiari Institute in NY, massage therapists, and a physiatrist. The one who seems to be the most knowledgeable is the physiatrist. He does not look at you funny when you explain all of the following symptoms.<br />
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Vascillating burning in the head that follows the nerves diagrams, eyeball pain, trigeminal neuralgia symptoms, shocks in the face, aching of the cheeck bones, bridge of the nose and eye socket, shooting pain, shocks, zaps in your hands, feet and face, pain like a fish hook stuck in your body up under your shoulder blades, chest pain so bad that you end up in the ER thinking you are having a heart attack, fatigue where you take a four hour nap and feel waste when you wake up, a pattern of pain that eventually ends up with every nerve in your body screaming, swallowing trouble, electric sensations through the tongue, nausea, vomitting, vertigo, droopy right eye and boughts where I can hardly keep my eyes open.<br />
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I've tried lyrica, amtrex, flexeril, topomax, neurontin, percocet, oxycontin, and two ephidural nerve blocks.<br />
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The physiatrist says to try several sympathetic nerve blocks. I did get some relief from the first epidural nerve block, but it did not hold. I did a second one and it just aggitated everything and made me nuts for a couple of days. I am going to give the sympathetic block a chance and see what happens on 10/27.<br />
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Keep you posted.

To OSWSFan, <br />
I've been doing lots of research lately on all of this stuff, and ba<x>sed on what you describe, you most likely have Ehlers-Danlos Syndrome, which is basically a severe form of hypermobility. Hypermobility in and of itself is a genetic disorder in that your body makes faulty collagen (which is too loose). In a "benign" hypermobile person it is just the internal collagen (ligaments, connective tissues, etc) that are affected, but in Ehlers-Danlos Syndrome the skin is also affected which results in you being able to pull your skin off your hand and whanot. I also think just in general that your skin is supposed to be very paper thin (as you describe) and that your enamel on your teeth even can be affected. I don't really know all that much about it, per se, but I recently saw a rheumatologist to assess my own situation (benign hypermobility) and those were things that she checked for. If I were you, I would get in to see a rheumatologist asap just to see if you can do anything at all. I've also read that, in general, people who have Ehlers-Danlos Syndrome are generally chronically low on zinc as zinc is necessary for your connective tissues. I was low on zinc myself a number of months ago and I'm suspicious that this is because of my own hypermobilty (aside from my crappy diet at the time). So, eat lots of protein, make sure you get some zinc (doublecheck to find out how much you should be getting) and try to strengthen your muscles as best you can as those will help to hold you together. I know it's really hard though as I've been struggling just with regular hypermobility.<br />
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Anyway, to rmcfarland, thank you for posting this! I am hypermobile and have had a similar experience. I am only 30 and somehow managed to herniate a disc in my neck by just holding my phone wrong. Ever since then (it's been nearly 9 months now) I've had a bunch of random symptoms. In the beginning, I was bedridden for about 2 months as well. Anyway, I currently have ringing in my ears, some eye pain (can be horrible!) here and there, nerve twtiches especially at my lips, general headaches, jaw stiffness. And, if things get really bad, I can have numb sensations and nerve compression sensations almost anywhere in my body. I also had an experience where I was shaking all over like a drug addict. During that episode I also felt like I had to go to the bathroom constantly. All very bizarre things, of course, and all things that the doctors can't really figure out and/or care about as, of course, I look fine. I was referred to a psychiatrist as well, but I have always been a very calm person. <br />
So far, I have tried going to a very skilled upper cervical chiro. She's been great but her care has obviously not solved my problem completely. I've also tried physical therapy and a bunch of random drugs here and there but, although I'm improved somewhat, nothing has helped completely yet. My stomach is also a huge issue as I've had digestion and acid reflux issue as well. Not sure if that's connected or not. Prior to this I never had any digestional issues at all! <br />
I will most likely try prolotherapy next but I'm concerned about the risks (as I do understand there are some). I really, really hope that it can help me! I'm a little worried that it won't as the people I've consulted about it thus far didn't find too much stability in my ligaments. They found a couple areas here and there but nothing major so a person has to wonder if that's really the cause of what's going on.

September 25, 2010 -- I just discovered the existence of Barre-Lieou syndrome while searching the internet for something else, and have realized I probably had -- and maybe still have -- this problem. Particularly in 2002 and 2003, I experienced nearly every symptom listed for Barre-Lieou syndrome, but the symptoms were so weird that it was hard to see a connection between the symptoms. <br />
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My doctors were baffled and ended up sending me for a CT scan and MRI, through which it was discovered that I had degenerative disc disease and severe spinal stenosis in my neck. Now that I know about Barre-Lieou syndrome, I suppose that's what damaged the nerves in my cervical spine, as well as some of the cranio-facial nerves. I've since had fusion surgery on my neck and most, but perhaps not all, of the symptoms went away.

My daughter was hit in the back of the head with several heavy boxes at work. She got a slight concussion and a sprained neck. It has been 5 months and she still is experiencing symptoms. She has had 2 cat scans of her head (both negative) and most recently an eeg 9negative) She first had major headaches with dizziness and lightheadedness. They said she had post concussive syndrome. then the headaches went away and she would experience spells that would cause dizzy, nausea, and vomiting. Sometimes after these speel she would get a headache. I witnessed a few of these episodes and it looked to me like she was having a mini seizure. She would just slide down a wall or fall off a chair and she could not respond to me. She said she would get tingling in her face and sometimes in her arms and legs. Sometimes these spells only lasted a few minutes, other times as much as 20. She told me after 1 of her spells that she is aware of what is going on around her but is unable to respond. Her doctors want her to return to work because they can't find anything wrong. Also, when she had her eeg she did not fall asleep because her neck was in so much pain. Doesn't a person have to fall asleep to have an accurate test? Does someone have to have all the symptoms for it to be Barre Lieou Sundrome. If anyone has any helpful advice I would greatly appreciate it. She just turned 21 and her life is at a standstill! Thank You!

When I found your story I cried. I cried because I have all of those symptoms including what kcamfree@yahoo.com has said in two posts above. I've been diagnosed with 3 cervical bone spurs via x-ray, but have suffered these symptoms for many years now and they have only gotten worse. I mentioned the Barre-lieou to my locum here as my Dr. is on vacation. He has never heard of it.<br />
I'm looking more into this. The prolotherapy turns me off as much as the cortisone shots the Dr. has suggested. I'm going to talk to the chiropractor here and see if he can refer me to a chiropractic neurologist if it is more specialized...this is so new for me, but so glad to have found this thread! Thank you!

When I found your story I cried. I cried because I have all of those symptoms including what kcamfree@yahoo.com has said in two posts above. I've been diagnosed with 3 cervical bone spurs via x-ray, but have suffered these symptoms for many years now and they have only gotten worse. I mentioned the Barre-lieou to my locum here as my Dr. is on vacation. He has never heard of it.<br />
I'm looking more into this. The prolotherapy turns me off as much as the cortisone shots the Dr. has suggested. I'm going to talk to the chiropractor here and see if he can refer me to a chiropractic neurologist if it is more specialized...this is so new for me, but so glad to have found this thread! Thank you!

I'm thinking of Botox treatments.<br />
I think I have Barre Lieou. Mine was induced by a doctor who placed a syringe in wrong place of my neck, my cervical spine (I went to him for prolotherapy for LOW back pain--headaches began immediately. After8 months the symptoms diminished--I'm not sure why. A year later they came back again. Terrible chronic headaches that go away when I sleep<br />
but that make activity--like this-- difficult. They are frontal headaches and pain in muscle on top pof nose. Neck pain. Also I've become very hoarse.<br />
I am thinking about Botox treatments. If I could get rid of these headaches I could cope with the rest, eg through meditation.<br />
Seth.

Hi, thanks for posting your story! You’re a good writer. Have you ever considered writing a book on your experience, like a personal memoir? I think you have a good shot at it. <br />
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I was in an accident in 1998, which is when a lot of the pain started. I have always had back pain even when very young. Nothing like I did after the accident. I also have a number of symptoms that shouldn't be related to the chronic pain, but do get in there when doctors talk to me. I think they are missing something. <br />
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I had RFA recently, where they burn the nerves. It's my third treatment and it didn’t' work the way that it did the first two times. It is very painful, sounds like the procedure listed here is quite similar. I also had to have a pad placed on my leg, to ground me, so that the electricity running through this machine could go to the nerves to heat them up (burn them). It only last for 3-8 mths, for me the average is only 3 mths. <br />
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Symptoms: head pain, mostly in back / <br />
Neck Pain OMG, the pain is worst than natural child birth at times. <br />
Nausea<br />
Dizziness<br />
Bowl problems <br />
Off balance<br />
Sensitive to light (severely) <br />
Loss of muscle tone. <br />
Can see the veins in my skin like a road map (weird)<br />
Other joint pain: fingers, hips, wrist knees... <br />
Loose skin Can pull my skin up off my hands (it's freaky)<br />
Mental Confusion / <br />
Problems sleeping <br />
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Lot of symptoms for just having chronic pain. I have been tested for RA it always comes back negative, although I feel I have it. <br />
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This is the first time I ever heard of this type of diagnosis. <br />
<br />
Could I have it? <br />
<br />
I wish you the best of luck. <br />
Please let me know if you consider writing a book. I could lend you a hand, free. I wouldn’t mind helping. <br />
<br />
Writing Resources: to help you get started writing your book :) <br />
http://www.onestopwriteshop.com <br />
Grants for Women/ Scholarships: Thought you may <br />
be able to use this. <br />
http://www.fundsnetservices.com/women.htm<br />
<br />
Contact me and maybe we can do some brainstorming!<br />
kcamfree@yahoo.com

I was very interested to read your story since barre-lieou is the most recent product of my internet searches for anything related to my combination of symptoms.<br />
The doctors I've seen have never mentioned at (or anything else that seems close, for that matter), so I've kind of realized that I'm going to have to figure it out on my own.<br />
Questions: how did you get a diagnosis? What tests did you have done that conformed anything other than "fit as a fiddle?" <br />
Did you ever have an MR-Angiogram? This is supposed to detect any narrowing or abnormality in blood vessels clustered at the base of the skull and neck. I ask because I'm having one tomorrow and I'm curious if it would detect barre-lieou.<br />
Thanks for sharing your story. It really helps me to know i'm not crazy.

I don't know if I have this condition but I certainly have most of the symtoms and it is making my life miserable, fortunately I have a very good physiotherapist & Occ Health Nurse at work so I am hoping to get some more answers, thanks to your account on the web I would still think I am going mad.<br />
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I have all the pain areas, head neck face, swallowing is somethimes a problem, but my main problem is memory loss I don't know if this is a common symtoms, if any one else experiences memory loss it would be good to hear your comments

My gp has agreed i have barre-lieou but I cant find a specialist in england. I live in north west england but no neurologist even seems to have heard about it never mind treat it!

Hello! I have read your story with great interest. I have what would be characterizd as the Barre Lieou syndrome (BLS for short...) but my symptoms are mostly dealing with the vertigo, nausea, neck pain, etc. I have not had any accidents recently that would have caused this and my symptoms started almost 20 years ago! Ever since then, they have changed, morphed, whatever into what I have now with is the constant feeling of motion, vertigo, nausea and neck pain. I have begun the prolo process too but have not had any good results - no change in symptoms - actually a little worse. But alas, I think I am going in the wrong direction for treatment. The reason I wanted to post this comment is that perhaps you may want to find another course of treatment. Particularly since you go and your symptoms just keep coming back. Have any of you visited with a chiropractic neurologist?? I have just begun going to one and have great success already. My vertigo/motion sensitivity have been reduced considerably (after over 20 years of this) and I feel as though I have finally found the answer to my dilema. You owe it to yourselves to check this out if you continue not having success. A great website to check is www.acrib.org which is the American Chiropractic Neurology Board. The doctor I am going to is in Long Branch, NJ - his name is Dr. Scopelliti and his website is www.dcneuro.net. This is not an advertisement but a desire to share my success with all who have been suffering from this horrendous affliction of vertigo and association symptoms. I wish all of you good luck!!!!

RmMcfarland<br />
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I am wondering how your treatments are going these days. How many have you had so far? I have gone for three to date. I found the first two to bring me more relief than the last one ironically. I have been getting them about 4-6 weeks apart.<br />
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It seemed like the first couple treatments would improve it (except for the needle pain of course) for a few days (about 3-5 maybe), and then my symptoms would gradually come back. I then had some more improvement in the couple to three weeks after for a while. After the third treatment, I noticed little improvement beyond the first couple to three days and in fact it seems to have gone back to as painful as it was before I started. They have told me not to be discouraged as it takes some people at least 4-6 treatments to notice much improvement. I see in your case you are still having difficulty after how ever many treatments you've had so far.<br />
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They initially told me that 3-6 treatments would likely be what I needed. Now I see that this is likely not the case.<br />
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KJ