Your Epidural Stories
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Story No. 1 - 2011 Catherine's Story
Probably the day after the birth of my second child I experienced the epidural headache. The anesthesiologist who administered the epidural was between c-sections (I was not having a c section). it happened rather quickly. When the headache came I was still in the hospital so I didn't notice it much since I was mostly lying down. When I did notice it I tried hospital strength pain killers but they did not help. I thought they were helping because I would lie down in the hospital bed but later realized they were not helping. I went home like this still undiagnosed.
At home I realized something was very wrong. I called my Obgyn who mentioned epidural headache and asked me to call the anesthesiologist department at the hospital where I delivered. I called and they ran through a list of questions and confirmed my diagnosis. They told me I could wait it out and see if it healed on its own or come in for a patch. I thought I would try waiting it out. That lasted about 1 day and I thought Ė why in the world endure this pain when I know there is a fix? So they asked me to go to the ER during business hours.
The admitting nurse asked me the severity of pain on a scale of 1-10 and I think I picked 10. I can handle pain but this was very bad. Two anesthesiologists attended me. One was to draw blood from my arm and the other to inject into my back. Well one of the doctorís hands was so shaky the other doctor had to administer the whole procedure. I lied down for about an hour and I when I got up I was back to normal.
Story No. 2 - 2009 - Diana's Story - CSF Leak Lasting 15 years!
I have been searching in vain for a story anything like mine. These horrific "headaches" started 15 years ago. Yes, years. Several Neurologists later, I'd given up hope, thought this was the way my life would always be, and that I was a medical anomaly.
My pain is severe, debilitating, and extreme. It is also frequent and runs my life. Sometimes it includes projectile vomiting, loss of vision, hearing problems, confusion, and balance problems. It wears me out. The rushing and pounding in my head when I stand could knock down an elephant. While sitting, the pressure builds, and I know I'm in trouble. It leaves me weak and sick.
Finally, I have a Neurologist at the Cleveland Clinic, Dr. Mark Stillman. He knew what was wrong right away. We have successfully kept my CSF symptoms under control for over a year; this winter began backsliding. I am having a blood patch performed this week. I have actually had Doctors tell me I stand up too quickly! Are you kidding me?
The list is too long to relate everything I have attempted over the years. As I get older, it has simply grown worse. My neck is constantly sore, stretched feeling, painful. I bulldoze my way through the morning, attempting to accomplish everything possible before the onset. I have missed out on so many things. It is difficult to explain to others, as this is not simply a headache. My life is irrevocably altered.
I resent having not been listened to by other Doctors. No matter what I said, they knew better. They dismissed my symptoms, did not treat my pain.
I returned to school despite this nightmare. I am in the Honors Program and on the Dean's list. My professors have been understanding regarding my situation; much of my classwork was done from home. Nothing will retrieve these past years for me. Yet now I have hope for the future.
If you are a Physician reading this, please, LISTEN TO YOUR PATIENT. Do not assume they don't know what they are talking about. Do not be dismissive. I told my Dr. I had blood in my ears. I told him I was having seizures. He was unconcerned regarding the blood, although he confirmed it. As for those little seizures? They were just fast twitch, like just before one falls asleep. NO, they were NOT. I was WIDE AWAKE. I knew they were coming, I could feel it. This Doctor is now teaching at a premier medical school. He wasn't unkind, he was convinced of his intellectual superiority. He knew more than me. Yet it was my body, and my pain. I knew what was happening to me. Please, listen to us.
Story No. 3 - 2009 - Lori's Story - Cervical Epidural For Pain From Herniated Discs
My name is Lori. I am a 48 yr old white female. I have been having trouble with my neck, shoulders and upperback for about 5 yrs now. Afterhaving several MRIs and a Mylogram, I found out that I have herniated dics at C5 and C6. Not bad enough to have surgery, but the pain was awful, I hurt 24/7.
After consulting with my Dr. I decided to try a Cervical Epidural. I had heard both good and bad stories on the results of these. I can say the procedure itself was not so bad, not as uncomfortable as I originally thought it would be. Although the day after (Tuesday) was pure Hell, I felt as if I had been hit by a train ! I hurt to move my upper body ! No matter how I moved my head, my neck hurt. I just kept on the painkillers and did nothing most of the day. Now Today (Wednesday) I feel wonderful !!! A little stiffness in my neck when I turn a certain way, but other than that No Pain !! I have had No pain Pills today, and hopefully this will last for a while, I still have 2 more shots in my series of injections but not until I start to feel the pain start back. I would definitely recommend for someone to give an Epidural a try for neck relief.
Story No. 4 - October 2010 - Kristie's Story - Long Term Epidural Headache After Childbirth - Six Weeks and Still Suffering
Six weeks ago I had a beautiful, 10 lb
baby boy. It was a scheduled section, since my first child was a
section. The doctor explained that the would do a spinal block instead
of an epidural this time, as that is the typical procedure. However, he
did not disclose the risks involved...
November 1st 2010, Epidural Story No. 5 - Maggie's Story - Lumbar Epidural Steroid Injection - Epidural Headache
I had a Lumbar epidural steroid
injection at L5-S1 in July 2009. Ialready was having headaches etc on
account of a fractured pelvis and ruptured disc,but about two weeks
AFTER the epidural, my headaches got worse and I got roaringly-loud
Tinnitus. The headaches are now less than they were and intermittent,
but the Tinnitus is blaring like the world;s loudest smoke alarm right
inside my brain. I kept getting told that there's no cure, there's no
answer, but I finally decided to not give up and researched online and
realized that it's likely a CSF leak since it all started two weeks
after that epidural.
Story No 6 Spontaneous CSF Leak Causing Severe Headache - Misdiagnosed as Tension Headache
I'm currently lying in bed in tears after reading your story at http://www.epidural.net/epiduralheadache.htm
Itís the first thing I have seen which makes me feel validated and describes the pain in a way that lots of people could relate to. The biggest thing is that I feel like I can stop doubting myself and my ability to cope with pain. I have had amazing support from my partner and family but I have felt very alone and have tried to cope and put on a facade to stop them worrying too much. Whenever Iím alone I have spent my time in tears before pulling myself together again and getting on with the day. I can only cope with one day at a time or I feel completely overwhelmed. Getting from one hour to the next via cups of strong coffee is the only thing I can do. I should be due shares in Starbucks (other brands are available!)... The staffs get my double shot drink ready without asking now. I used to love coffee as a treat to start the day. Now I hate it, it's like medicine but it's the only hint of respite apart from lying on my back for an hour or so. NOTHING takes the pain away. Coffee and lying horizontal only help.
My story so far:
On Friday 1st April 2011 my headache came on like a bolt from the blue. One minute I was walking through the hallway in my house, the next I was grasping my head and reeling from a pain like being hit on the head with an iron bar. I have never felt pain like it.
I have never suffered from any type of headaches and thought it was maybe a severe migraine and went to bed. No pain killers I tried worked at all. I couldn't even bear to lie on my side or have a pillow beneath my head. Getting up to go to the toilet terrified me as I knew I would be overcome by the pain and collapse on the floor again. I stayed in bed all of Friday and Saturday.
On the Sunday I started to get spasms in my neck and back and started to get really scared. Called NHS 24 and paramedics were sent out to me. They said it was probably a migraine but I should call again if it got any worse and they left again.
I called my GP surgery at 8am on the Monday morning and someone called me back at 4.30pm saying a prescription for aspirin and co-caramel was waiting for my partner to collect. The duty doctor didn't feel the need to visit me at home. These drugs did nothing for me.
On toes morn I started to vomit and I couldn't take any more. I called the doctors' surgery again and spoke to my own GP who arranged for an ambulance to take me to hospital for tests.
I was kept in overnight and given a CT scan and lumbar puncture to rule out aneurysms, tumours and meningitis. They tried codeine and morphine for the pain but nothing took it away in the slightest. I was then discharged by a general medicine consultant who told me it was probably a trapped nerve in my neck. I knew it was not anything like this but I was tired explaining to so many medical professionals and not being heard.
2 weeks after the headache came on I was reduced to tears lying on the waiting room floor of my GP surgery. I was prescribed amitriptyline which (at last) gave me a tiny bit of relief. Over the next few weeks I gradually increased the dosage from 10 to 30mg.
Four weeks after being discharged from the hospital (almost 5 weeks since headache came on) I saw the same general medicine consultant again who insisted it was a tension headache and I should gradually increase the amitriptyline to 50mg and see him in 12 weeks. I went back to work feeling like a pathetic wretch and although the drugs gave me enough relief to stand up, I was still in constant pain and became exhausted very quickly.
When I saw him 12 weeks later I was not coping at all and became very tearful. I told him I had looked into my symptoms and was there any possibility I could have a CSF leak? he told me 'my dear, your distress is disproportionate to your pain' and 'that is exceptionally rare and that's NOT what you have - as far as Iím concerned you have a tension headache with migraines symptoms' however, he eventually agreed to refer me to one of his 'neurology chums' but could give me no indication of timescales for this. So, I did lots of rooting around on my own and harassed his secretary until I found out who I was being referred to and contacted the neurologist myself. I paid to see him privately and his first diagnosis was... low CSF pressure!
Its 6 months since this struck and I now have a diagnosis. But I don't have a cure. as this didn't happen due to an epidural or lumbar puncture, we don't know if it's due to a leak and where that may be, or if it's due to lack of production of CSF.
Iím going to see a consultant anaesthetist on Monday (26th set 2011) to discuss how we can try to find out what's going on and what can be done.
I have spent the last 6 months in constant debilitating pain with what feels like no help at all until I took matters into my own hands and stopped taking standard medical advice. I have constantly doubted myself and my ability to cope with simple tension headache pain. And because of that I didn't feel I could go to my employers to ask for more time off or amended hours (would you change your management structure to allow time off for someone's tension headache?)
Now I feel I can start asking the right questions and looking into possibilities more positively and less desperately. And I can make the changes in my life that I need to in order to better cope with day to day life while I have this pain.
If you are like me and a blood patch is not the obvious first route of treatment, one thing I would suggest is to see a Craniofacial Therapist.
Itís so gentle and amazingly effective at releasing tension and letting your body and mind relax, even if it's only for an hour on the table. Iím not a 'lentil weaver' or 'alternative therapy type' but you really can feel something amazing working and you can start to feel the pain just like a sensation no different to cold or heat while you are having the therapy.
Iíve done some major crying today. I am a snotty mess. But I feel like a weight has been lifted.
Epidural. Net Links
Your Epidural Stories (We Want YOUR story!)
Bad Epidural Stories
Diana's 15 Year CSF Leak Story