CSF Leaks and Spontaneous Intracranial Hypotension

First I will compress everything that I know about this into the conclusions. The conclusions are founded in several years of research. I present the conclusions unjustified and unreferenced at first because you have a serious medical condition, and research is not what you should or want to be doing right now. I will explain sources later, but you need the knowledge easily available first. Disclaimer: the reader is entirely responsible for any use that is made of this information. I am providing a summary of information available to the public on the Internet, plus the conclusions about what you might actually do to apply the information, which I did not find anywhere.

1) The diagnostic criteria and terminology regarding "spontaneous" v. "others causes" of CSF leaks, and intracranial pressure (ICP), whether high (hypertension) or low (hypotension), tend to obscure the exact nature of the medical problem.

2) If you have a CSF leak, then your symptoms are the direct result of the fact that there is not enough CSF to support your brain, which is supported in part by the buoyancy of the CSF. This is not hypotension as such. The condition is called CSF hypovolemia, caused by an insufficient volume of CSF, usually due to a leak or leaks. Over a period of time it develops from an acute to a chronic condition, because the brain stem becomes compressed from increased downward force due to lack of buoyant support from the CSF.

3) The symptoms are caused primarily by the increased proximity of the brain to the solid material of the adjacent skull, because the brain is displaced downward due to lack of support from the CSF. This is in particular the case for the cerebellum. When your brain tells you to lie down, it is because it is in immediate danger. When you are walking, you are giving yourself mini-concussions at the base of your brain. If you are standing or sitting still, with your head in one position, your brain is settling, getting closer to the solid matter, which interferes with its function.

4) That is why you must lie down, because this proximity to the skull or other solid matter is really a grave and dangerous condition. Lying down relieves the downward force of gravity on the brain, alleviating the symptoms by alleviating the proximity effects. Lying down alleviates the headache and other symptoms, but the root problem is not the headache, it is the proximity if the brain to adjacent matter below when the head is upright.

5) Obviously a person with a CSF leak needs two things: increased production of CSF; and, the healing of the leak.

6) The production or flow of CSF into the area enclosed by the dura mater, (the collagen matrix which surrounds the brain and spinal cord and contains the CSF) is regulated by complex factors. One simple direct thing which you can do to affect the rate of production is related to the physical transport phenomena across a membrane.

7) Flow of fluid into the CSF takes place across membranes, and flow across the membrane is affected by concentration gradients. Two of the ions involved are sodium, and bicarbonate. if the concentration of these in the blood is increased, the ions move across the membrane into the CSF, which increases the concentration in the CSF, and that pulls more water from the blood into the CSF, increasing the rate of production. What you need to do then is to take two tablets of Alka-Seltzer, and yes, I am absolutely serious. Right now. Monitor the effects. The volume of CSF is quite small, so small changes make a big difference. More is not necessarily better, because if you have an active leak, then obviously too rapid an increase in CSF volume will increase pressure and intensify the leak. Obviously the long term effects of increased sodium, and the aspirin, are a problem, but those effects are irrelevant in the short run compared to the effects of hypovolemia. Just try it. Or just take baking soda(4g). Taking baking soda by itself does not seem to be as effective, and that may be because the aspirin has an anti-inflammatory effect on the brain tissue at the proximity area(s). It doesn't matter in the short run, if it works.

8) The second easily available substance which increases the transport across the blood/CSF membrane is potassium (K). It works quite effectively and rapidly, in small quantities, when taken as a supplement. By small quantities I mean half a 50mg tablet, taken on an empty stomach. Since the RDA is 4700mg., it is obvious that there are no short term risks in taking K, except that it must be understood that any rapid increase in CSF volume may reopen or increase the severity of the leak, due to increased ICP. There is no need to get into controversy about the role of potassium, because it works, but it may partly be the result of that fact that it tends to lower blood pressure, which lowers blood volume in the brain, which lightens the brain. However, since taking even a small amount of potassium directly can be experienced to reduce the symptoms of hypovolemia, and yet also cause a leak to reopen or increase, I think the main effect is increased CSF production. Just try it. Experiment. More is not necessarily better. By the way, have you noticed any increased craving for such things as bananas, which contain potassium. Also sugar, bananas or other high sugar foods? Sugar is being lost from the blood with the CSf, it contains sugar, so this increased desire for sweet things is probably related. And caffeine, what about that? Intravenous caffeine is actually used as a treatment. Just asking. Not suggesting anything unscientific, because medical science has decreed that cravings don't actually have anything to do with needing the materials in the craved food, so that must be so. So I am just asking, and saying as well that this medical condition is really the time to "listen to what your body and your brain are telling you". Especially, if you feel like lying down, do it right away. Do not struggle manfully or womanfully onward, don't pay any attention to what your friends or family think, unless you want to accumulate gradual brain damage, permanent effects on your optic nerves from tension on them due to the lowered position of your brain, or unless you want to collapse or go into seizures as you try to put on a good show, and prove that you can "take it". Listen to your body, this is a medical condition, and the last thing that you should apply to it is "force of will", or guilt-motivated "struggling onward" in spite of the symptoms. You will pay big-time, even in the short run, for making this mistake. I always refer back to an article which I read which started out: CSF hypovolemia is a potentially lethal medical condition. Fortunately, it is really easy to understand.

9) The other aspect of the problem, the healing of the CSF leak, may also be affected by your actions. The collagen enclosure which holds the CSF must be able to renew and regenerate itself, because as part of a living system, it would deteriorate if it does not renew. It then must be beneficial to provide better conditions for the regeneration of this structure. Collagen is compromised of amino acids. It has a very high proportion of proline. It forms best in the presence of increased Vitamin C. Do not take amino acid supplements. They contain raw L-phenylalanine, which is the substance which gives you a boost when you eat foods containing lots of it, like soy beans, but don't dump it into your blood stream from supplements. It is the limiting substrate for norepinephrine and dopamine, meaning the more you take in, the more of these neurochemicals will be produced, and you do not want that wild card hyper-stimulation-effect when you are trying to stabilize your physiology, in order to heal the collagen, and in order to minimize the variables affecting the production of CSF and the intracranial pressure, which are so numerous that it is a wonder that the control system works at all. Try to minimize the introduction of variables. The best source for amino acids is a protein supplement, I think this is the generic term: high alpha whey protein isolate. This is easily digestible, and again no risk in the short run, people are taking this supplement all the time. At first, take according to the recommendations, and see if you notice any improvement. Since proline is 30% of collagen on average, you have to take additional proline. Take a gram of Vitamin C powder. Once again, there is no reason to think that "more is better", and experience suggests that it is counter-productive to take large amounts of protein, or the Vitamin C. Doing this may actually weaken the collagen, who knows? So don't go at any of this with a "Eureka, I have found it, now I will load up on it!" approach. This is counter to science. You are experimenting, so keep track. However, be aware of the following. If this helps to seal the leak, and I think it will, then your control system has increased the production of CSF significantly to compensate for the leak. The leak is either active or sealed, off/on, and that is not good for a complex control system, so when it heals, the ICP is likely to go up pretty rapidly, which produces symptoms, some of which are at least described in the same words as the symptoms of low ICP. This is confusing. And unfortunately as well, this increased pressure will increase the likelihood that the leak will reopen. Moderation and extreme caution will yield best results.

10) I feel compelled to break with the order here to mention something. This condition produces some symptoms which are often confused with psychiatric disorders. What is happening to your behavior and personality, assuming that it is, is also a proximity effect. It makes you irritable, frustrated, angry, but this is not a "mental" problem, it is the effect of the interference with normal brain function. It produces variable symptoms of dementia, after all, so there is a lot going on. It has one cause. Proximity. Solve the problem, the symptoms go away.

11) Collagen is weakened by the presence of infection (or rather the immune response to same) and inflammation due to the action of cytokines. It is therefore understandable that CSF leaks can eventually form "spontaneously" as the result of sinusitis, especially ethmoid sinus. Therefore the presence of inflammation due to edema from the escape of CSF is a problem in itself, possibly affecting healing and increasing the danger of infection in the upper respiratory tract / nasal / sinus area. Therefore it is necessary to clear edema, and this can be done simply by increasing the among of albumin in the blood, which means eating more eggs that usual.

OK, I know, you think finally I have gone too far, with one too many of these suggestions, and maybe, just maybe, I am suffering from proximity effects myself, but now I will refer you to the exact information which will back up what I am saying, as long as you will accept the fact that the articles in Wikipedia are acceptable as source materials for research. Those articles may contain some errors or omissions, but I found that they are actually not made up by contributors writing their own explanations. They are mostly composed from sections taken directly from journal articles by experts in the field. All you have to do is make alternate searches of the same terms, and you will find a multitude of the genuine articles on this medical condition and related aspects in peer-reviewed medical journals. There articles by eminent physicians, including university professors in the field. First search in Wikipedia:

Spontaneous Cerebrospinal Fluid Leaks, and if you want to cut to the chase, "find" hypovolemia on the page, and read that section, bearing in mind that this does not exactly explain well about the proximity and the compression of the brain stem, but it is valuable knowledge for you, especially that there are alternatives (beta-2 transferrin assay, weighted t-2 MRI) to lumbar punctures, and if you want, search that term in peer-reviewed articles, and you will find that you better not have one, because they often result in the precise condition which we are examining here. 80% have hypovolemia side effects from the disturbance to the CSF, plus the leaks actually caused, for 2-weeks after until indefinitely. Not even dragged kicking and screaming, I would suggest.
Cerebellum. This is really short, and the list of functions of this part of the brain reads just like the symptoms of hypovolemia if the function of that part of the brain is negatively affected by proximity.
Edema. Collagen.

You can then search:
CSF hypovolemia. On the Internet. Lots of articles.

As you learn about this, you should also review:
Intracranial hypertension. Because of what I said above, you have to know what it is too.
You will find out something very important. ICP is variable, and rapidly and dramatically, by everyday activities, which you may take for granted and still be doing, even though they will perpetuate your CSF leak, including through ICP pulses. Straining and lifting, especially doing what we often do, holding the breath when doing so. These activities, including such apparently harmless activities as carrying groceries, will temporarily change the configuration of the upper components of the body, shoulder, neck, spine, and so on, and can cause the brain to move closer to the skull. That is why your neck gets stiff, to protect the brain against too much motion. Whatever you do, do not engage in any kind of therapy or massage to "loosen up" those muscles, because this muscle contraction or spasm is a protective mechanism, and you will get worse almost immediately if you free up these muscles. Another important factor, easily verifiable, is that ICP is slightly below atmospheric pressure when you are upright, and slightly above atmospheric pressure when you are horizontal. That means that it is extremely unlikely that your leak will heal when you are undergoing the prescribed "bed rest" for this problem, because that elevates the ICP. So then it is proposed to withdraw CSF to compensate for that, yet each time a needle is put through the dura mater, there is risk of creating another leak, and that risk is far from trivial, so to avoid the perception that I am being critical of anyone in that regard on an intellectual level, let me just say that as a treatment procedure, that sucks!

There is another obvious factor: if you snore or suffer sleep apnea, it is obvious that a leak can never heal, but will probably get worse at night instead. Because of the ICP variations, and the vibrations. So that means there is a big contradiction, or a lot of them really, because on the one hand, the leak won't seal easily when you are lying down, and yet on the other hand, you may have symptoms immediately upon rising, or which get worse during the day, and the day contains simple innocuous activities, like bending over to pick something up, or lifting or carrying, which can increase ICP and reopen the leak. So it is in my opinion essential that you take action to increase the production of CSF so that you can be up and around, because that is when the leak will seal up. You have to minimize the proximity effects in order to be up and around. Just think about what you are doing, learn about what not to do. Don't' exercise, and don't walk around a lot. Use your head! Just a bit of comic relief, there, referring to the fact that you have a condition which affects your brain function, and yet you have to monitor and think about what you are doing all the time. A real challenge, but a lot better than the available alternatives. There is no acceptable level for the symptoms of hypovolemia. Do the best that you can to fix it now.

Also, don't subject yourself to rapid altitude changes, and don't go in an airplane with this condition, for obvious reasons. What would happen to the leak if there is even a partial decompression, or even a move rapidly upward to lower atmospheric pressure? Even driving in some areas can produce quite a drop in ambient pressure in a short time. Other things to watch for: rapid changes in or abnormal blood pressure readings, or pulse pressure increases (difference sys- and diastolic), rapid changes in or abnormal body temperature (i.e. related to metabolic rate, even hypothermia can result), because these symptoms either show that your brain is struggling unsuccessfully to regulate a control system which is going out of control because of the addition of the leak to the system, or the proximity effect is compromising the brain's ability to regulate body functions at all. This is really serious, so seek medical attention immediately. Elevated ICP also produces "psychiatric" symptoms, including lethargy and euphoria. So the more you know, the more you will know. It is a somewhat cryptic presentation, but I suggest a quick look at this site to see something about Increased ICP, at least a bit at the start, because it includes Valsalva, but I have found more comprehensive articles on ICP but I just can't reference them right now. Avoid Valsalva, breath out upon any effort, pushing, pulling, or lifting, if necessary, but for now try to avoid strain completely.
http://www.gdn.edu/Faculty/a_purvis/Neuro%20lecture,%202004.htm

Going back to hypovolemia, if the condition perpetuates, it causes tension on the optic nerves, and the breakdown of the optic nerve sheath, because of the lowered position of the brain, and this is very dangerous, since subjection to minor trauma may cause major damage to the optic nerves, and also, the nerves are surrounded by dura mater, so their stretching allows CSF to leak into the eyes, which is never a good thing, and is extremely painful. This is something to watch for if you seal the leak, since ICP is subject to rapid change even from positive emotions, so you can hear some song that you really like, and the next thing…CSF into your eyes. Do not sit or stand in one position or with your head in one position for too long. You may find that you now characteristically have your head sloped forward, or slightly back, and this is an attempt by the brain to decrease proximity, but you were not conscious of it until now. Do not sit on soft chairs, because to put it bluntly, the two sides sink in and this leads to upward pressure on the spinal column, increasing proximity effects, even very dramatically. As the effects of hypovolemia become chronic, it is even possible to feel the spinal cord pulling on the nerves which go out across the back. This is in the literature. So if for some reason you did not take this really seriously already, I have given you enough information about the longer term effects of hypovolemia that I bet you take it really seriously now!

If your problems and symptoms are in the front of your head, or in general anyway:
CSF rhinorrhea. CSF rhinosinusitis. This was discovered by Galen in the Second Century AD. Just search all these terms, depending on your ability. If you can't, get someone else to do the research for you. I cannot immediately refer the articles about CSF transport phenomena, and CSF production in general, but you can search it yourself. There are lots of articles which will confirm what I have outlined above.

Oh,there is something else that just occurred to me when I was writing this. Don't be alarmed, but just consider the following. There is some similarity between symptoms of IC hypertension and hypertension. If you trace your symptoms back to a certain time, but it seems to be a "spontaneous" occurrence, it may be that there was first of all an increase in ICP due to a tumor, and then this increased pressure caused a rupture in the dura mater, and then the subsequent condition, which includes headaches, would cover up the origin of the condition in hypertension due to a tumor, or other causes, so you might want to see if your doctor has eliminated a tumor as an ongoing problem. This is just common sense. I am not trying to give medical advice. I just find the term "spontaneous CSF leak" makes me wonder what really caused it.

That's all I got. I hope it is helpful. Copy this. Post it anywhere that it might be useful. Let me know how it works by posting a reply.

Hi all,

I have had clear fluid coming from my ear and nose. I have just read the postings on this site. I don't have headaches, but my neck does hurt a lot. This fluid started about 6 weeks ago from my nose, and 3 weeks ago from my ear.

Did anyone start with these symptoms?

Judy

I have suffered for just about all of 2010 with what my doctors finally concluded was Spontaneous Intercranial Hypotension. I too went through a stream of doctors diagnosing me with sinusitus and migraines. They were very quick to load me up on all kinds of medications for pain, none of which worked. I finally ended up at Baylor College of Medicine in Houston, TX and met my neurosurgeon, Dr. Danial Yoshor. As soon as he walked in the room and took one look at me, he knew what my problem was. I had a blood patch done at St. Luke's in Houston by Dr. Nesbit, only to return two months later for a high volume blood patch. This one seemed to do the trick. It made an amazing difference and I am praying that it "sticks"! I feel for all of you that are suffering and know the pain and frustration you are going through, not to mention the toll it takes on your mental status. It suxs, plain and simple. I wish you all the best.

I didn't want to get myself worried and then find out that my symptoms didn't match. I will def be looking into seeing a neuro. The headaches are out of control and everytime I feel one coming on I actually get scared because I know the pain I am in for. Glad to hear you have been freed from this for 15 years. Thats great. Thanks again for responding

Over a month ago i started having excrucitaing back pains, i went to the doctors who informed me its back spasms. gave my diclafenic. A week later i had ended up in A&E unable to move in so much pain. they gave me diclafenic, codydramol and diazepam.A week later again i attended A&E i woke up with excruitiating back, neck and head pains! I couldnt move, i had to sit in the dark,i couldnt sit upright because id vomit and my head felt like itll split in half from growing pressure.They admitted me to hospital for tests: CT and MRI etc. Found nothing. The neurologist mentioned this spinal leak a possibility but advised it was getting better on its own to go home and come back if it worsened. A possible lumbar punch and other surgerys were mentioned also.I was on tremodol at hospital,the symptoms seemed to ease up but were made constant. The day i left they gave me paracetamol....A weekend later the symptoms have worsened. What now?

I had L5/S1 revision surgery in mid 2006 and wasn't told about a CSF leak that the surgeons were obviously very well aware of at the time of closing (4/almost 5 hours after going into surgery). I accept that it was a difficult operation - mostly due to adhesions from previous c'up surgery - but remain furious that I was left with an extremely serious problem. I'm also cross with myself 'cause I should have known something was wrong when one of the senior hospital team members involved in my care called me up at home on day 4 to find out how I was doing! Why didn't I think; what government hospital employee would do such a caring thing? Instead I thought, oh how nice of him, and what a lovely person he is. Wow, but, what a headache I had developed upon getting up on day 2, and I had told him this when he called me, and was ignored, kind of in a surprised but not way, like "oh really", followed by no suggestion as to what could have caused the headache. Called again a few days later again too, amazing thinking back on this course of events. Next time I saw him I was vomiting my guts out in the A&E and unable to say anything as any noise would cause my head additional pain!!!

I call it a "headache". No-one who has had a dural tear would surely agree that the pain falls into the category of a "headache". Even the worst migraine doesn't come close to what a real dural tear "headache" is all about. 24/36 hours flat on my back is what it took each time to clear my head so allowing me to string thoughts together and verbalize a sentence. During these - what I now refer to as - "brainstorm" periods, I learnt that if I got up at all the agony would immediately hit me like a sledgehammer once again and I would start the vomiting, eye, ear and head noise sensations all over again. Thus I lay in bed, not eating, not drinking, not talking, just wishing I could die right there, time passing in agonizingly slow seconds, eyeballs aching, every sound amplified, zzzzussshing and popping noises occassionally going off in my brain. And then there was my forehead that felt as hot as hell but the rest of my body felt cold. (Hubby was in fact putting damp facecloths on my forehead in the A&E while I shivered under the blanket). Meanwhile my B.P. climbed well over 200 but after 8 hours nothing more was done for me by the A&E doctor attending to me other than the cup of coffee I had been given to drink plus a myriad of injections and tablets I had been given for pain - none of which had done a damn thing to ease the initially diagnosed "sinus headache" and subsequently diagnosed "migraine". Hubby therefore suggested taking me home and I readily agreed. Subseqauently, the hospital remained in denial about our claims viz-a-viz a dural tear but a senior staff member in their neurology department later "broke ranks" and agreed to consult with me. By this stage I knew I had PTSD and had been receiving counselling privately for this condition. So it was that the neurologist independently and quickly recognized the latter and confirmed too that I had in fact suffered a dural tear. He subsequently put both in writing to my GP and I copied this letter to NZ's ACC but they accepted my claim for the dural tear - "treatment injury" - but rejected my choice of treatment provider for the PTSD. Therefore they haven't accepted cover for this condition and I have not been formally treated for same although I did see my choice of provider for a few months but couldn't continue because of the cost not being covered by ACC.

I have come a very long way in my healing - both physically and mentally, and am proud of myself in that I have done much of it on my own (getting back to work without any outside support was a real biggie for me!) - but, even today, I have to be careful in what loads I lift as anything too heavy will bring on a headache albeit nothing like what I experienced in years gone by (the sorry truth is that they've diminished over time but have never truly gone away completely, and I don't believe now that they ever will). Funny thing too is that I also find that other things which can set off a headache are lifting my arms for too long a time (wiping down walls and ceilings, etc., when cleaning) and walking around/being on my feet for long periods of time in any type of heeled shoe.

I am still taking medications prescribed for PTSD sufferers but want to try and get off these in 2011.

My spinal headaches started in full effect on October 23rd of this year. On Sunday, the 24th, my doctor diagnosed likely sinusitis and prescribed vicodin and antibiotics over the phone. On the 25th, I was brought in to see him, but after vomiting a)from the effort of getting dressed, b) the effort of getting downstairs, c)the effort of walking to the elevator from the car, the receptionist insisted I go to the E/R, where I was treated with IV fluids, anti-nausea meds, and more painkillers. That Wednesday, day five, I went in to see the ENT. All of this time, I was miserable in any position but lying down--no matter how filthy the surface I had to lie on. The ENT ruled out sinusitis and sent me to a neurologist, Charles Fiore, here in New Orleans. Dr. Fiore immediately identified the SIH. He scheduled a blood patch procedure for the following Monday, but explained that if I wanted to get the procedure sooner, I could go through the E/R the next day. I tried this, but Dr. Fiore was off that day, and my regular doctor and the attending neurologist decided to set aside his written diagnosis and treat me for sinusitis and/or migraines. I was admitted and given more IV fluids, ct scans and an MRI, and antibiotics. The rest and fluids did the trck. I was markedly better within a few days and released.

The headaches are mostly gone--I still get them when I go from lying down or bending over to standing or when I strain myself, but I fear, based on what I've read here, that they may come back. The biggest lasting problem is double-vision, somthing that struck just after I left the hospital and has persevered for three weeks and counting. If anyone has had experience with this, I'd love to hear it.

Meanwhile, Fiore and my ENT, the two doctors I trust after all of this, continue to run tests and do follow up. I had a spinal tap last week, but it yielded no new information except some possible spinal stenosis.I suffered no significant new headaches after the tap, even though it took them a couple of tries to get sufficient fluid.