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 la
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.
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.