Meningitis Headaches

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PostTue Nov 27, 2012 5:25 pm » by Poooooot


This is going to be a long-ass post, but it's a true story. A story that, if you know me in real life but do not know that I am poooooot, you will probably figure it out from this post. I am telling you guys because I have some questions that maybe someone here can answer. And if no one can, at least this story can maybe open your eyes to some scary shit.

So here goes.

Is anyone here familiar with meningitis? It's been in the news recently, so some people may be more familiar than others. There are a few strands, the most common two are Viral and Bacterial. Viral Meningitis is not life threatening, but because it is viral, there is not a whole lot they can do to treat it. Bacterial Meningitis is deadly.
Meningitis is inflammation of the protective membranes covering the brain and spinal cord, known collectively as the meninges. The inflammation may be caused by infection with viruses, bacteria, or other microorganisms, and less commonly by certain drugs. Meningitis can be life-threatening because of the inflammation's proximity to the brain and spinal cord; therefore the condition is classified as a medical emergency.

The most common symptoms of meningitis are headache and neck stiffness associated with fever, confusion or altered consciousness, vomiting, and an inability to tolerate light (photophobia) or loud noises (phonophobia). Children often exhibit only nonspecific symptoms, such as irritability and drowsiness. If a rash is present, it may indicate a particular cause of meningitis; for instance, meningitis caused by meningococcal bacteria may be accompanied by a characteristic rash.

(info 1) (info 2)

So, here's where my story comes in.

I had my youngest child in March 2009. During the last couple months of my pregnancy, I developed a sinus infection, which is not uncommon during pregnancy. My OBGYN did not want to put me on antibiotics because of the pregnancy, so I just toughed it out. Well, by the time I was set to have my C-Section, my sinus infection had grown into full-blown pneumonia (which was unknown to my doctors or the hospital staff). So, early March 2009, I had my C-Section. After the surgery, I was having spiking fevers, my blood pressure was all over the map, I was delirious, etc etc etc. I was a fucking mess. The nurses and hospital staff were very worried about me. I had multiple CAT scans, blood tests, etc. They could not figure out was was wrong. Eventually they did a chest x-ray to check for blood clots in my chest, when they found I had pneumonia. I know this all sounds very dramatic and over-the-top, but I assure you this is how it all went down.

Anyways, if you've ever had pneumonia, you know that they make you do a lot of breathing exercises and they make you cough, to sort of "work out" your lungs. If you've never been forced to cough with all your might, while also having a seven-inch laceration across your abdomen, I do not recommend it. It was terrible. Worse pain that giving birth vaginally (which is how I delivered my oldest). Eventually, they released me and my newborn from the hospital. I wasn't feeling 100% better, but I was eager to get home to my husband and our older child.

So, now, fast forward to late August of that year.* I started getting these strange, stabbing headaches. They didn't start out too bad. Over the span of a few hours, they went from quick stabbing pains, to long drawn out horrific aches. It almost felt as if there was a giant screw screwed into the side of my head, and it was being twisted and tightened every few minutes. Eventually they were knocking me off my feet. I was crying out in agony. I'd black out from the pain.
*I had thought it was September all this time, but I remember laying in bed at home the night before going to the hospital and my husband coming in my room to tell me DJ AM had died, so I now know it was late August.


The next morning I called my mother and asked her to take me to the ER. I sat in the waiting room, screaming in agony every 30 seconds or so while I was having these flashes of horrific pain in my brain. They actually had to put me in a separate waiting room because the light and sounds of the people in the regular waiting room were triggering more intense headaches. When they finally called me back, they put me on a morphine drip and gave me a couple shots in my leg of migraine medication. These headaches felt like more than just migraines, but I'm no doctor, so I just did what they said. After I was on the morphine for a couple hours, they sent me home with a couple emergency migraine shots.

I wasn't even home two hours before the headaches came back. Worse than before. I was in bed, with a spiking fever, and totally out of it. Like, straight up delirious. Luckily my mother had decided to stay at the house and help me take care of the baby (who was 6 months old at this point) while my oldest was at school and my husband was at work. I remember being in my bed, crying out in agony. My mother called her dad (my grandfather) because she was panicking and not knowing what to do. He came over and gave me one of the migraine shots in my leg. OH MY FUCKING GOD it hurt. It hurt SO BAD, but it did not really help. My family was panicking, not knowing what was wrong with me. they gave me Tylenol PM as the ER had suggested, just to get me to go to sleep so I could get some rest and they could figure out what to do. Every time I woke up, they'd give me more medicine and put me back to sleep.

Around 6:00pm, my husband came home from work. As soon as he got home, my mom took me back to the ER. She demanded they find out what was wrong with me, rather than just give me more drugs and send me home. I sat in the separate waiting room that I had used earlier that day, and when they called me back, they decided to give me a spinal tap, so see if they could find anything.

Have you ever had a spinal tap? It's horrific. They take a huge-ass needle, stick it into your lower back, and draw out spinal fluid. I had an epidural in 2002, and then another one six months prior (both for the births of my children). spinal taps are so much worse than epidurals.

So, they had my mother go out into the hallway while the night doctor attempted to give me a spinal tap. He was literally digging around in my back with this needle, trying to get it where he needed it to be. It was awful pain. Almost as bad as the headaches. He tried for a minute or two with no luck, and I'm crying out in pain. He gave up and said we were gonna take a break. Then he tried again for a second time. During this attempt, he hit a nerve or something because I felt the worst electrical feeling ever shoot down my right leg. I screamed out "my leg!" just as my husband was walking up to the room (it took him a couple hours to find a sitter to come watch the kids, it was almost midnight at this point).. Obviously I wasn't out there, but he and my mother told me later that they both freaked out when they heard me scream like that. After that, this douche-bag doctor said "that's it, I give up." And they admitted me and set me up in a room. They put me on another pain killer drip, demerol. It got me pretty high. Felt better than I had in days. lol

The next morning, they doped me up again, and took me down to some weird x-ray machine and decided to try and do the spinal tap under the x-ray. Turns out I have scoliosis in my lower back, which is why that idiot doctor the night before couldn't get the needle where he needed it to be. Scoliosis also explains the terrible hip pain and back pain I have been getting since I was a teen. I always thought I just had bad hips. Turns out I have a fucked up back. But I digress.

After the spinal tap and lab work, they concluded I had viral meningitis, which is a swelling of the membrane around the brain. They are confident but cannot say for certain that the pneumonia I had during my c-section had settled in my spine, somehow. Because it was viral, there was not a whole lot they could do for me. They just had me stay in the hospital to treat the headaches until I was well enough to go home. I was in the hospital for about a week. After I got home I had to go to doctor appointments regularly and the city health department had to keep tabs on me for about a year, since meningitis is a huge health risk and they needed to stay on top of it.

Now, here is the whole reason for the post. This whole thing happened three years ago, and I still occasionally get those stabbing headaches. They are not nearly as bad, and I don't get the spiking fevers or the deliriousness, but I still get the stabby/twisting screw headaches. I'll get them in their typical flashes for a few hours at a time, generally a couple times a month. I've been to the doctors, specialists, etc... and no one can tell me why I still have them. They are not debilitating, but they are still painful and disruptive.

Has anyone here had any experience with meningitis? How long will these headaches continue? Could my brain membrane (meninges) still swollen after all this time? Will I have these headaches for life?
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PostTue Nov 27, 2012 6:12 pm » by Poooooot


It seems like, from what I have been able to find online, that having lingering headaches isn't all that uncommon... But I'd still like to know if any of you guys have had any experience with this...


Someone here suggested acupuncture. Is anyone here familiar with acupuncture?
Hey I had meningitis just under a year ago and the headache never left even after all the pills from the hospital so instead I had 6 sessions of acupuncture. Now I barely ever get headaches and just need a top up session every six months.
http://meningitis.healthunlocked.com/questions/129430/can-reacuring-headaches-after-viral-menigitis-be-treated


Others have suggested that it could be intracranial hypertension (as a result from the scar tissue from the meningitis), which is a fucking scary thought. :scary:

I also found this article on meningitis-trust.org that says:
Meningitis can leave sufferers with many life-long after-effects, including reoccurring headaches, which can impact on their day to day life.

Many survivors of meningitis will be left with invisible, but life-changing after-effects, such as memory loss, tiredness, behavioural and emotional problems, depression and piercing headaches.


Seems like I might just have to tough it out. I do get prescribed vicodin for my TMJ, but I rarely take them because since getting my braces put on, my jaw has been a lot better. I do take the vicodin for my headaches when they get really bad, but I was hoping there was another way. I don't want to be taking drugs the rest of my life. :cry:
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PostTue Nov 27, 2012 6:28 pm » by Arella


No offence poooooot but if your last resort is to ask people on disclose tv i dont have much hope for you, all the best with it though it all sounds like something i would not wish on my worst enemy, not even lowsix lol

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PostTue Nov 27, 2012 6:31 pm » by Poooooot


Arella wrote:No offence poooooot but if your last resort is to ask people on disclose tv i dont have much hope for you, all the best with it though it all sounds like something i would not wish on my worst enemy, not even lowsix lol

lol, none taken. I just figure with a lot of people here having their suspicions of the whole medical community, maybe they could offer me some "at home treatments" or something. Some alternatives to "well just take some pain meds." I hate taking pain meds. They make me tired and after they wear off, I'm really cranky.

Oh, and I also have an unreasonable fear of becoming addicted lol
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PostTue Nov 27, 2012 6:35 pm » by Arella


Pooooot i know they say its the last refuge of a scoundral but how about praying :think: people will laugh but if you new my life and of those around me it has worked...you have nothing to lose :pray: :sleep:

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PostTue Nov 27, 2012 6:40 pm » by Arella


Happy positive thoughts you know...you may think "how can i be positive at the moment" but id say again what have you to lose.

Sorry if what i say sounds ridiculous but i am trying to help seriously.

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PostTue Nov 27, 2012 6:42 pm » by Poooooot


Arella wrote:Pooooot i know they say its the last refuge of a scoundral but how about praying :think: people will laugh but if you new my life and of those around me it has worked...you have nothing to lose :pray: :sleep:

You know, deep breathing and meditating has helped me manage my bipolar disorder without medications, so it's definitely worth a shot! :flop:

Are you familiar with acupuncture? I've never had it, and I don't even know of anyone in the area that does it. I've been thinking about it (not only for my headaches, but also my back and hip pain), but I'd like to talk to someone with some experience with it before diving in.
Matthew 7
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PostTue Nov 27, 2012 6:44 pm » by Poooooot


Arella wrote:Happy positive thoughts you know...you may think "how can i be positive at the moment" but id say again what have you to lose.

Sorry if what i say sounds ridiculous but i am trying to help seriously.

It doesn't sound ridiculous at all. Positive thinking has changed my whole life around.

It's sad how many years I spent hating myself over things that either don't matter or that I cannot control.

I could go on and on about how deep breathing, meditating, and positive thinking have cured me of so many ailments, but I don't think anyone really cares. haha. But it does help, and it does work. At least for emotional issues. I've never really tried it for physical ailments... :think:
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PostTue Nov 27, 2012 6:48 pm » by Arella


Yes. An ex partner landed on her toes on a trampoline and has had to have acupuncture weekly after that as she now has uncontrollable spasms and it used to work for her..i am in england so cant recommend a specialist for you unfortunately.

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PostTue Nov 27, 2012 6:53 pm » by Poooooot


Arella wrote:Yes. An ex partner landed on her toes on a trampoline and has had to have acupuncture weekly after that as she now has uncontrollable spasms and it used to work for her..i am in england so cant recommend a specialist for you unfortunately.

hmm... that's kinda weird. lol. Sorry. Spasms from landing on her toes? But the acupuncture worked, so that's good :flop:

I took a pain pill after writing the original post because the headaches were making it hard for me to see out of my right eye, and it just kicked in and now I'm tired and feeling a little loopy, so please forgive any misspellings or nonsensical postings I may make. I hate this feeling, but at least my head feels better for the time being. :|
Matthew 7
“Do not judge, or you too will be judged. For in the same way you judge others, you will be judged, and with the measure you use, it will be measured to you.


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