"Spontaneous Intracranial Hypotension (SIH) is a condition where a patient gets postural headaches due to a leak of the Cerebrospinal Fluid (CSF) in the spinal membrane. What happens is that the leak causes low CSF pressure within the nervous system, and thus causes a constant string of headaches to the patient. The problem with SIH is that it is very hard to diagnose and there is not a great deal of information on why it occurs.
Cerebrospinal Fluid is formed in ventricles of the brain. It moves through the ventricles and leaves the brain at the base, underneath the cerebellum. Then, the fluid moves into the spinal cord and the nerves, and finally returns to the brain. Throughout this time, the CSF is moving through a membrane, called the dura that surrounds the brain and spinal cord. The condition of Intracranial Hypotension (IH) develops when a rupture occurs in the membrane. Thus, the CSF leaks out of the dura, causing a dislocation of the brain downward and "pressure on pain-sensitive structures." IH can develop as a result of brain surgery, spinal surgery, or any major trauma to the head. However, as in the case of SIH, the rupture can sometimes occur spontaneously. In other words, there is no known cause for the rip in the dura. Some doctors speculate that the spontaneous tear is due to the initial weakness of the dura, or a traumatic event that went undetected; however there is not a great deal of information on this subject.
The principal symptom of Spontaneous CSF leaks is headaches. The headaches only occur when the patient is upright, and gradually disappear when the patient is lying down. In most cases, the headaches gradually increase from the moment the patient wakes up in the morning. However, in other cases the headaches are quick and severe. The acuteness of the headaches varies in each case, which affects how quickly the condition is diagnosed. Some of the related symptoms of SIH are a loss of hearing, tinnitus, vertigo, stiffness of the neck, nausea, and even vomiting.
Since the primary symptom of SIH is constant and severe headaches, it is often misdiagnosed. In some cases of SIH, the condition disappears as spontaneously as it appeared. Mild cases can be cured through a general increase in fluids, especially caffeine, and lots of rest. However, more serious cases will require a procedure called the epidural blood patch. This is a procedure where autologous blood is injected into the patient's lumbar spine. The blood travels through the spinal cord, finds the rupture in the dura, and clots the rupture.
Spontaneous Intracranial Hypotension is a very rare type of a Cerebrospinal Fluid leak, but unlike other types, it does not occur due to any specific traumatic event or surgical procedure in the nervous system. Although there is not much information on the possible causes of SIH, it is suspected that an intrinsic weakness of the spinal membrane or an abnormality of the brain structure causes the rare condition."*
*http://serendip.brynmawr.edu/exchange/node/1688#1
For some reason or another, the headache has been behaving itself again as of late (except this morning when I had a bit of a relapse). I am still taking the supplements the kinesiologist advised using; they seem to be working. Along with that, I have been doing acupuncture on a regular basis for the past month or so, and I feel it’s really made a difference.
During one of the acupuncture sessions I felt my hands heat up until they felt as if they were on fire (my circulation is not great, and my hands are always freezing cold - it was such a nice feeling to suddenly have boiling hot hands). During the following session, the same thing happened but to the right half of my back, where one of my kidneys is. Very interesting considering that the Chinese acupuncturist suggested my headache may be related to my kidney. The needles were definitely doing something.
In the meantime I have been trying to figure out why my headache worsens the second I lie down, whether this be during the day or at night. I can lie down for just two minutes at any time and the headache will hurt more than when I am standing. In the mornings, I am often forced out of bed as I know that once I walk around for a few minutes the pain will slightly subside, albeit by no means in its entirety.
A number of people I have come across on the MD Junction forum have suggested looking into CSF leaks. Like many conditions, Spontaneous Intracranial Hypotension has been found to be more common in women than in men. The condition usually develops while the patient is between 40 and 60 years of age (not my case).
Like so many neurological disorders (and indeed disorders in general), little is known as to its primary causes. By what I have read, it would appear that I can rule out SIH as a possible cause for my headache - I don’t belong to the age category, I have not had any major brain injuries, and my headache actually worsens when lying down as opposed to improving, and most certainly never disappears in its entirety. Having said that, everybody is different, and you can just never say never, can you?
I just struggle to believe that after 276 days of constant headache (who would even believe it's possible to have a headache for that long?), I still don't have an answer as to what it is.
During one of the acupuncture sessions I felt my hands heat up until they felt as if they were on fire (my circulation is not great, and my hands are always freezing cold - it was such a nice feeling to suddenly have boiling hot hands). During the following session, the same thing happened but to the right half of my back, where one of my kidneys is. Very interesting considering that the Chinese acupuncturist suggested my headache may be related to my kidney. The needles were definitely doing something.
In the meantime I have been trying to figure out why my headache worsens the second I lie down, whether this be during the day or at night. I can lie down for just two minutes at any time and the headache will hurt more than when I am standing. In the mornings, I am often forced out of bed as I know that once I walk around for a few minutes the pain will slightly subside, albeit by no means in its entirety.
A number of people I have come across on the MD Junction forum have suggested looking into CSF leaks. Like many conditions, Spontaneous Intracranial Hypotension has been found to be more common in women than in men. The condition usually develops while the patient is between 40 and 60 years of age (not my case).
Like so many neurological disorders (and indeed disorders in general), little is known as to its primary causes. By what I have read, it would appear that I can rule out SIH as a possible cause for my headache - I don’t belong to the age category, I have not had any major brain injuries, and my headache actually worsens when lying down as opposed to improving, and most certainly never disappears in its entirety. Having said that, everybody is different, and you can just never say never, can you?
I just struggle to believe that after 276 days of constant headache (who would even believe it's possible to have a headache for that long?), I still don't have an answer as to what it is.
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My head pain, pressure, and dizziness always worsens if I lay down flat or even with one pillow. But if I use two pillows I kink my neck, so my physical therapist recommended a foam wedge to slightly elevate my upper body.
ReplyDeletethanks Jasmine, will give it a go. I find it so hard to fall asleep with big pillows though (most of the time I don't even use one) but will of course give it a go as anything that makes the pain go away is of course welcome. thanks for the suggestion!
ReplyDeleteI've had "permanent headache" since the beginning of 2002 and have had every diagnosis you can think of, including hemicrania continua etc etc etc. Have you been prescribed indomethacin? I assume so, as one is not given a hemicrania diagnosis without the "indotest." Lately my vision has been off. My headache sits behind one or both eyes (usually one, the right) upon waking. It's as if my eyeballs are being pushed out and it actually hurts if I push the eyeballs back gently with the palm of my hands. Once upon a time, I had a lumbar puncture in an emergency room (went in for a simple migraine, have had those almost my whole life), developed a severe spinal headache (csf hypotension), had a blood patch, which cured it. The daily, permanent headache started (noticeably) about a year and a half later. Still just trying to put this all together, get some relief.
ReplyDeleteAnyway, I wanted to ask you if you'd heard of the Michigan Head Pain and Neurological Institute? They do inpatient (and outpatient) treatment for severe, "mystery" headache. I spent two weeks hospitalized with them. They know more than anyone and are the vanguard of much headache research. At the time, they saved my life. I'm still not "cured," but I want people to know about them. www.mhni.com.
Try Dr Jawad Shah at insight institute of nueroscience and nuerosurgery...Flint, Michigan..sounds very much like hypotension..low csf or possible leak..
DeleteThough I've not been diagnosed with a CSF leak, I've head weird headaches almost 24/7 since fall 2009, when I suffered whiplash and a concussion during a kayaking excursion. I have been diagnosed with a herniated dura that's protruding into the sphenoid sinus. And I've since fall 2009 also suffered from other symptoms such as frequent clear discharge from my nose, ears and down the back of my throat and tinnitis and frequent changes in my hearing.
ReplyDeleteBecause since then I've also had atrial fibrillation (I have a pacemaker), about 18 months ago I bought a hospital bed that allows me to sleep with my head elevated - at an angle so slight that it took little getting used to. In fact, I've increased the elevation under my head incrementatlly and think I'm sleeping better since I got the bed. I found the bed via Craigslist and paid a song for it, compared with what I would've paid for a new bed that allows for raising the elevation of the head or foot of a mattress.
I was diagnosed with SIH due to multiple csf leaks in the weakened dura. I have had 3 blood patches since Oct. 2009 with a total of 100 cc of blood. I continue to leak without a plan to treat this again. I understand that too many blood patches can cause scar tissue (which can interfere with nerve pathways)! Anyway, I am a nurse and have read that if the headache occurs after lying back down....the leak can be in the lumbar area as opposed to the usual thoracic area?? Not sure. hope this gives you some info.
ReplyDeleteI was diagnosed with SIH after 25 days of a severe and constant headaches. Lying down did help make the headache more bearable, but by no means a substitute for painkillers. Only painkillers with caffeine were effective. I had a lot of stiff neck during this time and some nausea but none of the other symptoms of SIH.
ReplyDeleteAfter nearly 10 months of the initial episode, I beleive I had a milder re occurrence of SIH. This time, the headaches were like an intense pounding that last a few seconds when I went to a standing or lying down position from a sitting position. It would be all ok after a few seconds of pain. I experienced this 4-5 times a day, especially after I had been sitting down for a while. It lasted for about 2-3 weeks occurring intermittently on some days. Doctor suggested caffeine and fluids. The problem seems to correct itself.
Incidentally, I too have colder hands and feet and did visit an acupuncturist who made me feel warm all over the body with her needles and infra-red heat. I just had this done once and cannot correlate it with any beneficial effect on SIH.
S.L.
Male, 37 years.
SIH occurred at 36 years of age
Hi, I am a female 35 years of age where I too had the onset of headaches of same caliber as of you from past 25 days and recuperating and feeling refreshed and lively after lots of fluids, rest, caffeine. I had MR venogram, MR thorocodorsal spine which never showed a leak present, but presence of subdural hygromas. Had LP done which had elevation of protein and suggestive of yeast, but doctors ruled out any and cytology came back as negative. Right now since past 2 days I am fine and able to ambulate and no symptoms of headache. My question to you is, did the headache recur back after the onset and your milder SIH as I am too have to get back to work, will I able to go back to work as it recurred in your case. How is your lifestyle now as this has happened to you 5 years back, I want your input on that would be beneficial for me, thanks again for your response
DeleteI was just released from the ER with severe neck pain & headache undiagnosed last evening. I am a nurse and I got bit by a mosquito a couple weeks ago altho not a confirmed dx we all agreed I probably had west nile virus and it was beginning to turn the corner as its been 8 days since all the symptoms began, which I had all of them! I had a Lumbar Puncture (spinal tap) done, took 3 tries (2 under flouroscopy by the radiologist), I developed what I thought was a mild spinal headache about 12 hrs later despite drinking a liter of mountain dew and a lrg amt of water as suggested. At about 22 hours post Lumbar Punc. I developed an excrusiating headache which worsened significantly if I laid down, not typical of a spinal headache. I took 2 percocets which over an hour brought my headache down to very mild. I would like more information about the possibility of the leak being lumbar vrs thoracic as of course the ER doc and radiologist say its not the typical spinal headache. Because I am only 24 hours post-procedure I may have to go back and have the blood patch but my concern is why the headache worsened even more when lying down vrs sitting or standing. I literally kept changing position until the percocet kicked in because everytime I tried lying down it became much worse. I have no hx of migraines am a healthy 51 yo female. I hope we can all find answers.
ReplyDeleteI first got a severe headache on 29th October 2008. I left the UK to go travelling a few days after thinking it was a little stress that brought it on.
ReplyDeleteThen after being in Bali for 3 weeks I went to hospital in the November, then was sent over to Singapore in early January 2009 where I had an MRI and was diagnosed with SIH.
In the February I was flown home by my insurance where again my diagnosis was re-comfirmed by doctors in the UK.
I was started on Theophylline for 10 weeks that did nothing. By May 2009 the headaches had started to clear up a little but a further MRI on my spine showed a CSF leak on my lumberspine but could not pinpoint it. I had 2 separate Blood Patches done, both of which did not work.
I then saw a Neurosurgeon in September and had a further MRI in November on my spine and head which showed nothing.
I was informed afterwards that I should not have had a further MRI but an Angiogram.
On 23 July 2010 I had a further head MRI to check the Dura around my brain and today, 30th July I heard back that my results are with my neurologist and will be hearing from them shortly.
Although my constant SIH headaches have completely disappeared, I have continued to have almost every day since, a very stiff neck from my shoulders up to the top of my head making me feel sick. I still get regular pains behind the eyes with constant aching through and around my ears and small headache/stabbing pains around my head at times. All of these pains were explained to me to be directly linked to SIH.
I have been advised that even after a dura tear has repaired itself, in chronic conditions the pains can last for some time afterwards.
I am 38 years old and got the first headache the day after my 37th birthday.
Today, 30th July 2010 is day 640 for me with SIH.
Martin
Southampton
United Kindom
I am 35 year old female, I too have same headaches from past 25 days, but its gone and I am feeling good since 2 days and underwent all diagnostic procedure as you did, all came back negative, but pre LP I had MR venogram which showed subdural hygromas which is a little concern, then underwent LP which showed LCSF pressure with budding yeast cells seen with no malignant cells seen although the protein was on a higher side. Right now I am feeling fine and headaches have vanished completely since the onset. Again, I went to Neurology with all the reports for second opinion, they have told me to get admitted and get a contrast study done on my with opening pressure to be measured as it was not done earlier. My question to you is do I need to go back and do the tests again as I am feeling fine now as I do not want to get another LP done and get another headache or more MRIs and CT cisternogram, myelogram and all those prescribed by docs. please advise
DeleteI have just come back from my Chiropractor who has diagnosed low csf also. I also have the problem that when headaches are bad they bring me to my knees in pain, if I lay down they are unbearable! My Dr asked me 2 weeks ago to keep a diary of my headaches! What use that will be when I can tell him I get them most day's I don't know! I reported these headaches in March 2010 and still no help from him. Suggestions on how to proceed would be most appreciated. I have previously had a back op on one disc (14 years ago), I'm 38 and desperate to put a stop to this constant agony so I can get on with my life.
ReplyDeleteTanya
Surrey, UK
May I suggest seeing the kinesiologist I see who is a miracle worker when it comes to back problems! A very good friend of mine (who is the one who initially suggested I see him) has always suffered from back problems and in particular scoliosis. A few months ago she was barely able to walk because she had injured her back - after 2 hours with the kinesiologist she was good to go. If you would like me to pass on his contact details do let me know. Definitely worth giving it a go - incidentally, he is based in Surrey.
ReplyDeleteI came to this site last year to shed some light on my broher's severe headaches. Although this may not be what is causing yours, several cardiologists have said many people with undiagnosed mitral valve prolapse or other undiagnosed heart conditions could have been the cause of his headaches especially when he changed altitudes. He went to many neurologists had numerous studies on his brain without finding a cause. Sadly he suddenly died this past November 9th, 2010, my birthday of all days :( of an undiagnosed heart defect he has had since birth called myxomatous mitral valve prolapse. If a medical doctor would have sent him for an echocardiogram, they could have found this and maybe he could have had it repaired and still been alive. His headaches as many of yours was constant, permanent for many many years. At least ask to have your heart checked on ultrasound, he had a normal EKG and no murmur, or signs other than the severe headache. He just suddenly collapsed, the coroner said this could have been prevented possibly with it being detected. I just hope this may save someone else's loved one.
ReplyDeleteJust got ih diagnosis from an lp showing 0 opening pressure. And I have known of my mitral and tricuspid valves having a disorder for 10 years now. Thanks for sharing this info. I'm headed to the heart dr again.
DeleteKelly, I am terribly sorry to hear about your brother.
ReplyDeleteThank you for your comment - I am going to have a look into mitral valve prolapse and have a post on it soon as it may well be the cause of someone's headaches. Thank you again for your comments and take care.
I had never had headaches before May 5, 2009. It started out as an annoying draining feeling at the base of my head in the back. It eventually progressed to full blown headaches, and ER visit, CAT scans, MRIs, etc. I only knew that when I had my teeth cleaned and laid upside down in the chair for an hour, my head felt great for 10 hours afterwards. I then would use that position for relief. After much self-advocating, in October 2009 my neurologist agreed to order an epidural blood patch. It did not work initially, but took a week or 2. I then found I still had migraines that were daily but not 24/7 at the back of my head like before. I was sleeping ALOT. I remember I was only able to stay awake for 2 hours on Halloween and Christmas, and slept 22 hours. Finally, my neurologist suggested I look elsewhere for the cause of the sleepiness because headache pain should not make one that sleepy. In February of 2010,after visiting my friend, a dietitian, I received a call from her. She had sat next to someone with similar symptoms and that person had been diagnosed with a gluten allergy. I was willing to try anything even though my docs could not get any confirmation through testing.
ReplyDeleteI now know that the reason my headaches remaining after the blood patch were daily, almost constant is because wheat can be in almost everything (including soy sauce, yogurt, sour cream, etc.) AND it stays in your system for 3 days (iGe vs. iGg allergy). Its symptoms CAN be very subtle like sleepiness and headaches or more pronounced similar to gall bladder issues. My neighbor was bringing over homemade bread before every holiday that she had used wheat freshly ground in her wheat grinder. I still get recurrent CSF leaks (on my 3rd one now) and get surprised by food with wheat in it BUT I now know what is causing my headaches and have some sense of control. I wish you ALL the same.
My husband has been suffering with severe head aches for about 3 months now. He has been in & out of the hospital the last month and a half. The doctors have diagnosed him as having several csf leaks in the thoracic area. They have performed 4 blood patches. This last blood patch which was performed on Monday seems to be the best so far. The only difference between the blood patches is this time he stayed at a angle (his feet were elevated higher than his head) for 48 hours. He has maintained at bed rest for 4 days now.
ReplyDeleteOur concern is, the doctors are telling us he should get up and walk around. Researching the internet states the longer you stay in bed the better the results for patching the leaks. It seems all cases are different but we are running out of answers and hope. I really don't want to see my husband going through so much pain. Any comments, suggestions are welcome.
Do you think it could be related to him also having herniated discs in the same area?
Our 26 year old son developed a headache the end of June (2011), and within a few days, it got worse, at one point, he could not walk (could not control his legs), could not see and because physically ill. The episode lasted several hours, tests were ran while he was @ the ER and they found nothing abnormal. He has had a headache nearly every day since the initial episode.
ReplyDeleteAfter bouncing from neurologist to neurologist, he was finally diagnosed with a CSF leak. The 1st blood patch did not do much good (at this point he'd had several spinal taps) - the headaches continued - some times they were really painful (regardless if he was standing, sitting or laying down) - and at other times he could get by with taking Excedrin Migraine - however, that was short lived and the headaches were full blown within a week or so.
Five days ago he had another blood patch, (30 cc's of blood were given, versus 10 cc during the 1st blood patch) - initially he felt a lot better, however, yesterday, he was back to having severe headaches - and today he said he "feels better" (though is a bit pessimistic because things change from hour to hour it seems!)
He is a very active 26 year old - and has had no health issues whatsoever - this really came out of the blue.
Being young and active (and leading a very busy life in Chicago as a chef) I wonder to myself if he's given himself enough time to "heal" after the 2nd blood patch. The blood patch was done on Friday and he worked Saturday and Sunday - on his feet all day ...
He is to see another neurologist Thursday and they have mentioned Mayo Clinic - I just hope and pray something helps him - or that the headaches go away as quickly as they came about - it is hard to see your child suffer.
Thanks for reading this - I'm certainly open to suggestions!
I am a fellow sufferer of SIH (since 2008).
DeleteI have found verapamil useful in controlling the headaches (it raises the CSF pressure as a side effect).
I hope it helps your son if the patches don't.
I'm a 30yr old woman living in Australia who was recently diagnosed with Spontaneous Intracranial Hypotension, with two CSF leaks. One at the Cervical and one Lumbar spine. Beginning of August 2011 I woke up one morning with my head throbbing, then as the days went on I started feeling lathargic, disorientated, couldn't eat, had to lie down to feel better. The doctors thought I had Sinusitis and prescribed me strong Antibiotics. I layed in bed for a week, with no improvement, got another dose of antibiotics. I then started vomiting, when to a another doctor, he told me I was reacting to the anibiotics so I stopped all medication. a couple of days went by still strong headaches still in bed (couldn't take care of my kids) I then started getting double vision..I thought I was tired and carried on..I even tried going to work. the headaches stopped but the double vision continued for a week, I went back to the doctor he referred me to an Eye specialist. The eye specialist prescribed me steroids and said if these don't work then you should have a brain scan. the next day no improvement so I went to the hospital, after a week they found two CSF leaks. I had Blood patch with 25mls of blood and my double vision improvment 75% within two days, I still had strong headaches for another 2 weeks. Now 9 weeks on I still get on an off neck stiffness, and like a pulling feeling in my cervical spine. If I stand on my feet all day (like preparing food for a party)I get a really sore back and have to sit down. Even if I wear heels all day my back is killing me by the end of the day. I am normally a fit girl that goes to the gym and does boxing, cycle and pilates. Its been a really frustrating time, but I am so relieved that I got my vision back to normal and the headaches stopped. For my back soreness I take Voltarin 50 and when I had the strong headaches I took either Maxalt, Endone or Panadol, but I seemed to still feel headaches while taking these. I hope my story can help you.
ReplyDeleteI can actually feel my leak and can't get my doctor to believe me. My headache/eye aches are getting much better but my neck ache and inability to get into a comfortable position to sleep is exhausting in itself. It's nice to know that I am not the only one suffering and gives me hope to keep looking for some sort of help with the symptoms. All of my symptoms started after a car accident and get slowly worse.
ReplyDeleteKathy says,
ReplyDeleteRight-sided severe headache pain with bad everyday pain in my cheekbones and jaws, terrible pain and pressure down my spine and tailbone started in January 2007. It has persisted everyday since and has changed my life and my personality dramatically. I quit my 32 career as a teacher in June of 2007. Working with a Neurologist has been almost as painful as the horrific headaches. They have slowly tried every medicine known to man for migraines and were determined that I would fit in that hemi-cranial continua migraine box. I have undergone several years of occipital nerve blocks and occipital denervations (HELL) to try to stop the pain. I just had a lumbar punture and was told a pressure of 12 was normal and mine was 3...any knowledge out there? They are testing the 5 vials of spinal fluid now supposedly for everything. This has gone on so long...my husband, children, friends, husband's family, all have put me in the "crazy" box. I only get a little relief by lying on my left side in a little ball. My lovely ,very, very, busy life is gone and I have and am losing hope and am tired of everyone's judgement that I am imagining or causing all of this. It is like living in a surreal wretched nightmare!!! Help!!!
I too suffer from incapacitating headaches. If I bend over to pet my dog, or tie my shoes, when I stand back up straight, it is llike someone is trying to bang their way out through my forehead. I have been diagnosed with CNF Hypotension ( not enough fluid in my brain) but countless MRI's can not find a leak. A blood patch ( the most painful procedure EVER) did nothing to help. I was being seen by the Sinai Brain institute in Baltimore, but they have given up and are sending me to Johns Hopkins. I am still trying to work my job in medical billing thru this. It is impossible some days. Yesterday I could hardly move. my life as a 47 year old woman is more like a 90 year old. I go no where, have no social life. I was also diagnosed with a Chiari 1 malformation, and a benign limpoma in my brain. If it weren't for my son and parents, I'd just shoot myself in the head and end it all. Any suggestions would be appreciated. Sherry K, Perryville, MD USA.
DeleteHi Kathy,
ReplyDeleteThanks for posting. It's so sad to hear you're going through such hell. I have to say I do completely understand you though - the lack of support and being put in the 'crazy' box is one of the toughest parts to deal with, as well as feeling abandoned and not understood by our family and friends. You could even say that those are nearly worse than the headache itself. And the wretched headache alters us so much that we sometimes can't even recognise ourselves.
Be strong - even if your family and friends don't seem to understand you, please remember that there are some of us out here who really do.
After losing a 49 yo.brother to a heart defect that went undetected all his life, I encourage anyone who hasn't had an ECHO (ultrasound) of their heart to have it done. He had massive headaches, undescribable, no pain medication or procedures worked. Some headaches can be caused from a PFO (Patent Foramen Ovale which is a whole in the heart from birth. It can be repaired surgically & reduce or eliminate headaches in many cases. Also headaches can be caused from a lack of oxygen to the brain from cardiac defects not detected such as my brothers, hypertrophic cardiomyopathy and Long QT syndrome. Please don't ignore headaches, he could have been saved had someone looked at his heart instead of his brain! He sat up in bed one night, thrashed around for a few seconds then when he tried to get out of bed he collapsed. His wife was a Captain FireFighter and trauma RN and immediately performed CPR, despite life saving efforts at the hospital, nothing could be done. He left two daughters 11 & 13 recently and unneccesarily. Please ask your doctor for an echo, his ekg was normal when they did it, so they didn't do the echo which would have been life saving.
ReplyDeleteI've had multiple surgeries to fix my CSf leaks in my lumbar spine after two years of having an LP shunt placed for intracranial hypertension (too much CSF fluid). My classic symptoms are that my headache gets better the longer I stay flat, but I can only get up about 45 mins a day and then I throw up and the pain brings me to my knees. I just had another nuclear radilogy test to see if they could see a leak, and the radiology Dr. said he really didn't see anything. I'm totally freaking out and hope my neurosurgeon can find the leak from the images because I basically have no quality of life right now.
ReplyDeleteWow crazy that this is a real problem. I have been having sever headaches since a stroke in early November 2012 when i blacked out behind the wheel and then involved in a serious car accident. It's like a tripple tragedy, stroke, car accident & now severe headaches. Two MRI's and waiting for CAT scan of head to see if anything shows up. Doctors & neurologists stand there scratching there chin thinking of next steps.I take AMITRIPTYLINE for headaches which for sure help take a load of but still stuck with that pressure feeling and awareness is affected. Still able to work which is great and sleep is fine as lying down takes away the symptoms. Still hoping will some how fix the problem. Best wishes to everybody as i know what you are all going through.
ReplyDeleteI would get an ECHO of your heart if you haven't. Many headaches can be caused from heart defects that you are unaware of, my brother died at 49 from an undiagnosed hypertrophic cardiomyopathy, normal EKG, normal EEG but massive horrible headaches, no one even thought to look at his heart :( He died suddenly and left a wife and 2 daughters. Please have them check your heart, I don't want anyone to go through what our family went through. I will pray for an answer, as I know these headaches were so debilitating to him as well. Please let me know how you're doing :) Kelly
ReplyDeleteFor those who have been diagnosed with SIH but no leak found
ReplyDeleteI have had this since 2008, with headaches/neck stiffness on standing which eases markedly on lying down, especially with head below feet.
I have found verapamil effective at controlling the headaches and neck stiffness (usually used as a blood pressure/heart medication, but has a side effect of increasing the CSF pressure). Doxycycline also has the same side effect, but was ineffective for me.
I have been dx'd with a large leak. I too am on Verapamil and it has helped. This was given to me from a neurologist Before the leak was found. My doctor who is a well known CSF Leak specialist does not know why Verapamil is working. No where ANYWHERE does it say that it raises CSF pressure. That is the first thing I did... look online to see if it does. So where did you find it? Where did you get that info? Thanks.
DeleteA little over six weeks ago I had a disk removed at c5 c6 and fused, at some point the surgeon "nicked" my dural sac. I lost fluid, blood contaminated the dural space, they patched it and put in a lumbar drain. I woke up and was in ICU for two days then released to a regular floor for recovery for another day before being released home. The severe headaches and spine /back pain, light and sound sensitivity started as soon as I got home, I was taking way too much pain medicine...they readmitted me right away saying I had a spinal menial initiation, inflammation, contamination. Steroid treatments and narcotics are all that seem to be working at this point. I relate so much to many of the comments posted. I am awash with medication or in extreme pain most of the time. I get to step down the steroid half a dose this week and the result is more pain and now more pain medication, which long term use is a whole other problem in and of itself. I am also taking Imitrex 3x daily as a means to try to control the headache pain but they don't seem to work, but I try and wait in pain and eventually just end up taking the Percocet. The doctor say I am showing signs of improvement but I overslept this morning and was about 2 hours late in taking my steroid and what a wreak! I am in so much pain, I watch the clock for when the next dose is. I worry what will happen next as I try to wean off the steroids, what if that doesn't work? I have two small children and a husband who has lost all patience with all of this....I am no good company for any of them right now, nor can I manage the energy level of my two year old. I feels so bad but I just want them to go away from me most of the time as I lay here in a fog, and what to tell work? I am in constant pain and don't know if it will ever go away? That puts me in the "crazy" box for sure.
ReplyDeleteHow sad that so many people are going through such a pain filled experience.I am here to find help for my husband. He has had a constand headache since Dec 7, 2011 after a AN removal.He had sever vomiting for three days which caused a CSF leak from his ear. After 5 days of bed rest they placed a spinal drain for a week and no more ear drainage.The day placement was out he got a nuemocephilus. One week later he was sent home.Since then, 24Dec12 he has suffered with a headache but over the last two months he wakes up with excruciating headaches. They dull down after he is sitting up after 30-60 minutes. He doesn't sleep for more than 2-3 hours a day. He is in the military, in the process of getting medically discharged do to headaches, and they say the MRI is normal for post surgery and they don't know why he has these headaches. They have basically blown him off and say to take pain meds. He is only 33 year and can't run, jump. swim, lift anything over ten lbs, sleep, sneeze or cough without making his headache be so bad he is on the floor. Is there any hope? What can we do now? I am afraid the pain will drive him to doing something awful...He lives in pain and I live in fear of his pain, how can a young healthy vibrant soldier live this way for the rest of his life. Not able to do any of the things he loves or even provide for his family. Please help advice us,
ReplyDeleteSincerely,
the wife of chronic pain sufferer.
I had a direct epidural steroid injection at L5S1 in late 2005, which a spinal migraine for 2 weeks before blood patch was performed. The next morning I awoke severely worse, rushed to the Emergency room, where they did 6+ doses of morphine to try and stop my writhing enough to get a brain scan. Two years later I began getting sudden horrible migraines with nausea, so intense and nothing helps, that a trip to E.R. is all that ends up helping. These attacks grew in frequency from once every few months to eventually 2-3 a week!
ReplyDeleteNothing has been diagnosed as the cause, so I was just given Rx after Rx, after a long list of medications not working, I just suffer. I've asked if the original dural sac puncture and resulting spinal migraine could be the reason (Never in my life ever had a migraine like these), ever physician responds "No".
Since my life is decreased to nothing, weight gain from inability to exercise and the medications, I often feel everyone would be better off without me here. No more dealing with my hindrances. I know, nobody will admit that and it sounds horrible, but I see the frustration and uncaring (here we go again) actions of my husband and kids. The medical world needs to open their eyes on the fact there are so many cases like mine and the "Sit on the table and poke in spine blindly" method should be never allowed again! ONLY under xray and like (my current Awesome doc) Dr. Seitzman in Middletown OH does this procedure from the outside of the spine to get around to the front!
I lost my brother almost 3 years ago from something called hypertrophic cardiomyopathy (HCM)genetic heart defect, he was undiagnosed. His ONLY symptoms were very severe headaches and I mean SEVERE! I am just putting this out there because everyone looked at his brain and not his heart. I know this happened after an epidural injection but I think it's worth looking into, we would still have him if someone would have taken the time to look elsewhere for his cause of headaches. I wish you the best.
ReplyDeleteI am a 45 yr old female. I have had severe headaches since I was a toddler in diapers. I have been diagnosed with severe migraines that cause strokes. Symptoms: severe head pain. R temple throbs and pain 24/7. Pressure and pain behind my eyes. Same pressure and pain at the back of my skull. Both sides of my face tingling. Both legs have the "sleepy" tingly feel. The bottom of my feet are sleepy tingly. Hands and feet are always always ice cold. Dizzy. Low blood pressure. My scalp feels all sleepy and tingly. I see floaties and shooting stars across my field of vision. Sense of smell and taste is gone. Post nasal drip with NO allergies or cold. Tingling in hands. Nausea. Hear a whooshing sound in my ears as my heart pulses. most symptoms go away when I lay down. Way worse as I get up. There's more symptoms as well..... I have had CT scan, MRI, angiogram, EEG, EKG, countless blood tests. And still no real answer. Other than severe migraines that cause strokes. But these symptoms are with me 24/7. Any thoughts? gaylenebt@hotmail.com
ReplyDeleteI am a csf leaker. If you were leaking, your headache would feel better lying down. If it feels worse lying down, you need to ask about intracranial hypertension (high pressure) not hypotension (low pressure - leak).
ReplyDeleteI have had a headache for 25 days.had a ct....dr said no bleeds or tumor. my symptoms sound like csf
ReplyDeleteWhat's your normal pressure readings? Have any of you been tested for idiopathic intercranial hypertension, basically the opposite. It's what I have but I guess god has a sense of humor because with the increases of intercranial pressure then the csf pressure can cause, tiny ruptures that then lower my pressure and cause leaks. When my pressure is too high it hurts worse to lay down, too low then the opposite. I also have severe stenosis of the dural.venous system and both internal jugular arteries. Woohoo. Anyway, I too feel the pain of docs who struggle with understanding rare neurological conditions and basically tell us to rest, take some Tylenol and try this random new dangerous seizure or whatever med and let me know how it goes. Idk about most people but I don't have the life I'm willing to.give up to just lie around for months and years while they slowly try to come up with a solution. Anyway, I've got a fabulous team of docs now (my pain management Dr more than my neuro, he's some kind of genius at diagnostics and saved me from throwing myself in front of a bus). I'm uber sick right now but if anyone has any questions about IH and stuff, feel free to contact me directly. I get what it's like to deal w daily, disabling headaches, eye, ear and neck pain, numbness in hands and the reality I may eventually go blind. My Dr has told me too many Dr's are too quick to either dismiss patients or diagnoses, particularly if they may be severe or contradictory even though they know for a fact that test results, scans and the like tend to produce transitory results that are constantly changing. One minute your opening pressure could be off the charts at 45 and the next it could be off the charts at 5 but if you don't follow up and watch these patients, you'll never know. Good luck w everything. Let me know if you need to talk :)
ReplyDeleteI have been suffering severe head and neck pain and neck stiffness for 18 days straight now. I am being treated by a neurologist for a possible CSF leak. Everything seems to be going by so slow and my neurologist wants to refer me to a blood patch specialist who's schedule seems to be very tight especially since the holidays are coming. I believe my leak was caused by a tear in the dura because of a fall down the stairs a week prior actually a week and a half prior to the headache starting. Praying for a solution and some relief very soon.
ReplyDeleteMy headache started while working out. Pain in my head and neck were sudden and all I wanted to do was go home and lay down. 14 months later and numerous tests, a diagnosis of New Daily Persistent Headache and after a neurologist change I have finally had a doctor tell me that they think it's a csf leak. 14 months of 24 hours a day, 7 days a week pain, sometimes on a #10 scale and hopefully it will be gone after my blood patch procedure this Friday.
ReplyDeleteI was wondering if the blood patch worked for you. I have had 3 done and so far no luck. I am waiting for the next step.
DeleteTrish
June 2012 I was driving home from work and I felt something crawling in my right ear. My husband tried to rince it out but it just seemed like a worm was crawling around in there. Thats the day it all started. The wierd feeling grew into slight discomfort and finally the headaches started. I went to my regular doctor and she referred me to an ENT doc. He looked in my ears, up my nose and down my throat and than felt a pop in my jaw( I've had the pop forever, and told him so). After feeling the pop he said with quite certainty that I had TMJ and to go see a dentist. I went to the dentist for xrays and an exam. "You do not have TMJ, but I can clean your teeth". So I returned to my regular doctor and told her what went on and she still had no clue what the pain was from. I had told her that the pain would travel to different location in my head. Sometimes it would just be in my ear, other times it would be in the back of my head but it was always on the right side. Still clueless as to the cause she said it was time to see a neurologist. Throughout his visits he ordered blood work, cat scan, mri and an ultrasound on my carotid vein in my neck. Did all the in office tests by checking my reflexes, touching my face to see if both sides had the same reactions, had me take steps and I'm sure a whole bunch of other things. His diagnosis was, "I've seen this in mostly women of your age (52) and have gone through the "change" so you are going to have to deal with the pain". So I requested the referal he had suggested since he had no clue. I went to a University hospital where I met the man that found the problem. He repeated almost all the tests the first guy did because he wanted to see the results for himself instead of trusting someone elses interpretation. For the next 9 months I went through exams and tests and still no conclusions. He said from the beginning that the last test was a cat scan with contrast to know for sure. If that test showed nothing than we might never know. The time had come to do that test. My husband and I were in the prep room when the radiologist came in and said we shouldnt do the test, since I didnt present as though I has csf leakage, and that he wouldnt even recommend the test to his family or friends. I told him that I had been to all the doctors before him and had been given all the tests that had showed nothing and that this being the last test and to not have it done. DO THE TEST! I havent come this far in the race to not cross the finish line. I have to say that it was by far the most painful one so far. Even worse than the 6 lumbar punctures I had in one day. The techs thought they were missing my spine since there was no fluid discharge. Little did they know that my pressure was 3 to neg. After reading the results that evening the head of radiological muscular something guy who performed the test called me and said he had never seen anything like it before. I was leaking everywhere. My husband calls me a sprinkler. My point here is to never take no for an answer and to keep on looking till everything has been done. I have had 3 blood patches and moving on to the glue patch idea next. I have my good days and my bad and my really bad but I'm not giving up yet.
ReplyDeleteMy sister has had a constant "migraine" for over a decade. They have increased to the point where she had to quit work, is taking injections of Imitrex and 4 to 6 Tylenol with codeine every day, just to keep functioning. She is exhausted. Could this be CSF related?
ReplyDeleteMy sister suffered chronic tinnitus for more than 47 years and it got worse as days passes. We tried many treatments but no result, she cry all time due to this symptoms and think to commit suicide as the noise get worsen. The noise is mostly of a ringing, roaring, buzzing and hissing type. It was constant 24/7. It is very bad affecting every aspect of her life. The sound becomes louder at night, at the time she goes to sleep. We just got a contact of Herbalist called Dr. William. His herbal (natural) medicine has cure my sister and he is living a good life now, though it cost us a lot but the goodnews is that the medicine has finally cured her. If you have same problem, contact him for more info (drwilly37@gmail.com)
ReplyDelete