Epidural Headache With A Late Onset
My story is unique in that I had an epidural headache which started three weeks and two daysafter childbirth. An epidural headache was considered to be impossible starting this late after childbirth and because of this, was dismissed by the anesthesiologists as nothing more than tension headache! They were wrong! Having an epidural headache was the most excruciating sort of pain I could have ever imagined having and this was after a very long, complicated childbirth.
The delay in diagnosis, because of the generally accepted claim that an epidural headache has to occur within one to seven days after having had an epidural, is not only disturbing, especially when a person has all the classic symptoms of a leaking cerebral spinal fluid (csf leak), from the perspective of the patient, often a new mother with a baby to look after, it is downright cruel. It could also possibly cost a woman her life because one of the rare but associated risks of leaking spinal fluid (particularly a long term epidural headache) is subdural hematoma.
An epidural headache, also known as post dural puncture headache, csf leak, pdph, low pressure headache or spinal headache, is postural in nature, so that when you stand or sit up (or even raise your head) it causes pain which can be unbearable and when you lay down it usually goes completely within seconds. For some, the pain is mild, or moderate, but for many, the pain is severe, and has been described as 10/10 pain, or the worst headache ever. For me personally, on a scale of one to ten, my headache was ten! I had to literally crawl around with my head down to move about in the house and learned to breast feed laying down on my side. My baby and I were cared for by my family for three months until it was fixed. It was SO incredibly painful that I often ate laying down, not daring to raise my head and because of this many times I choked eating my meals.
Two weeks after my epidural headache started, I started to get severe neck spasms, extreme hearing loss and ringing in the ears, and photophobia (sensitivity to light) which are also symptoms of a leaking spinal fluid.
Caffeine often helps temporarily for with these headaches - I didn't find out about this until weeks later. For me, the relief I obtained from caffeine didn't usually last for more than an hour and was enough that I could get to doctors appointments without being carted away on a stretcher!!) or do simple things such as take a shower (prior to this I'd have to lay in the shower with my head to the floor!!). It was the only thing including a range of prescribed drugs and medications short of having a blood patch (explained later on) that actually helped. Other pain killers don't seem to have any affect on this sort of pain, especially when the headache is severe - a pethidine injection in given to me in the emergency room of the local hospital had no effect on it at all when I was in an upright position! Codeine (60mg) / paracetamol (1000mg) didn't touch the pain either. Interestingly, my blood pressure rose substantially when it was taken standing, most likely because of the intense pain I was in.
An epidural headache occurs when the dura (the covering outside the spinal cord) is punctured by the needle. CSF (spinal fluid) which bathes the spinal cord and brain then leaks out of the hole created by the needle. You don't always get an epidural headache when this is happens and sometimes the anesthesiologist may not even notice fluid leaking from the site but an epidural headache can still can occur (as with me)!
The terrible pain is caused by having a low pressure of CSF around the brain, and the brain rubbing painfully against the skull with very little cushioning of CSF each time you are upright. The brain also tends to sag all over. These headaches can be diagnosed by having an MRI which usually shows diffuse meningeal enhancement and brain sagging. There are various medical journals which you can search for on this. Some people confuse epidural headaches with "migraines" - but the headaches associated with spinal fluid leak can actually be much, much more painful. In saying this, migraine headaches are an extremely debilitating neurological disorder in their own right, but need to be distinguished entirely from epidural headaches.
Usually an epidural headache or post dural puncture headache will last a couple of days or maybe even a week and heals itself, but not always - for some of us, that is not the case - they can go on for many months if left untreated.
As I wrote above, an epidural headache is usually relieved by caffeine which is the first line of conservative treatment (I would sometimes drink up to 8 cups of coffee a day when I had mine, having never drunk tea or coffee in my life - no wonder my baby was so unsettled!). Caffeine does not actually fix the headache, nor does it prevent an epidural headache, but it is like a band-aid and may help you to cope better while waiting for the leak to stop naturally or until you have a blood patch. It appears that caffeine works because it increases CSF production, which provides temporary cushioning around the brain. Some people are unable to tolerate the side effects of caffeine for various medical reasons, so please check with your medical professional if you are in any doubt.
If the headache is not gone within a couple of days, a blood patch should be done. A blood patch is a procedure where blood is drawn from your arm and injected into the epidural space in your back. Apparently It clots there and seals the leak. I had my epidural headache for 3 months before a blood patch was done on me and it fortunately it fixed the terrible pain pretty well straight away. The risks of having a blood patch are the same as all the risks of having the original epidural + a small risk of meningitis and it is not recommended if you have a fever at the time. The risks of not having a blood patch when you have leaking spinal fluid (CSF) are generalized sagging of the brain and herniation of the cerebellum through the foramen magnum (the hole in the base of the skull where the spinal cord goes) also called Acquired Arnold Chiari Malformation which happens in about 80% of cases. It is reversible with a blood patch. Rarely, some people have a congenital condition (they are born with it) called Arnold Chiari Type 1 or 2 and a CSF leak can make their symptoms worse even after the leak is fixed because the downward position brain is already causing a partial blockage of csf flow.
Sub-dural hematoma, cranial nerve palsies and even blindness are other rare complications of a CSF leak. It has also been reported in medical literature that a blood patch should not be done within 24 hours of it's onset as there is a high risk of failure if it is done within this time. Sometimes a second blood patch is required to relieve symptoms and very rarely, surgery to repair the tear in the dura may need to be done. Please also read Questions and Answers About Epidural Headaches and What Is A Blood Patch?
For Medical Professionals!
If you are reading my story and are a medical professional, please don't let what happened to me happen to your patients - Of course there are risks associated with any medical procedures, but if a patient has the typical symptoms of an epidural headache, they need your help! Although my rare delay of headache and associated symptoms were not written up in a medical journal at the time, I assure you that it happened to me! It has happened to others. What you need to be thinking of is not so much the time from the epidural to the start of the symptoms, but the symptoms themselves. We are all individuals and perhaps there is an anatomical reason why a very small percentage of us are more susceptible to a late onset of symptoms, but the fact remains the same, these sort of headaches should absolutely NOT be ignored or passed off as stress, post natal depression or tension headache. They need to be treated and if there is doubt, investigate further. Postural or orthostatic headaches are very specific. Also, I know for a fact that the pain of these headaches causes extreme stress and obviously tension headache and even migraine headache can overlap as well (it seems logical that these sorts of headaches could also co-exist with a postural headache associated with leaking spinal fluid, and even be triggered by it). This would explain why some people at times will also have pain when laying down - the question is whether "most of the time" the pain disappears or the severity is alleviated immediately when laying down. There were a number of occasions throughout the three month period that I would also have a headache laying down, so please don't let this fool you in your diagnosis.
A lot of medical professionals are unaware of possible risk of subdural hematoma caused by csf leak. As pointed out by a person who's story is on this site and was lucky enough to survive this, "Of note, a change in headache pattern should alert the physician to the possibility of development of complications, such as subdural hematoma or cerebral venous thrombosis (Lai et al 2007b; Schievink and Maya 2008)." Click here to read his story- The fact that this is rare is irrelevant if you happen to be one of the people unfortunate enough to have bleeding on the brain caused by tearing of the blood vessels from spinal fluid leak. People have died from this. Please don't let that happen to one of your patients.
Ihave put my story on the internet because I want others to be aware that a post dural puncture headache or post lumbar puncture headache can occur (however rare) this late after having an epidural, spinal anesthesia, diagnostic lumbar puncture (spinal tap) or myelogram. You can even get a spontaneous low pressure headache which is exactly the same but starts suddenly without any specific event causing it. Whatever the cause, people with these sort of headaches need to be taken seriously, treated appropriately and referred to a neurologist expedititiously when necessary.
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We are compiling a list of epidural stories, both childbirth related, or not. We would love you to share your story with us, good, or bad, whether to do with epidural anesthsesia for childbirth or other surgery , epidural headaches, epidural injections for pain relief, ANYTHING related to epidurals - if you are a medical professional and have any unusual stories to tell, we would love to hear from you too!!
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