I have had one constant headache for 3 years. Today I had surgery to become a cyborg. AMA

What's your position on killing all humans since the surgery?

This is my second nerve stimulator procedure, and I noticed with each one I gain a stronger connection to the hive mind.

Resistance is futile?

As an ingress player I cannot accept this statement (resistance for life!)

But in all seriousness, yes. Yes it is. You should prepare for the coming of your robot overlords by apologizing to your microwave for not cleaning it often enough.

Did you get married July 2011?

I was already divorced at this point, but they was another headache all of its own ;-)

How did having a headache all the time affect your daily life? I can imagine if I had one I would constantly be irritable and nobody would want to talk to me

Daily life got very hard. My employer was very accommodating and let me work from home, but most places were too loud other too bright. People got used to seeing me with sunglasses on at all times. I put on crazy amounts of weight due to my not being able to do much physically that didn't make it worse.

I had an amazing support group though. Talking with people with similar issues online gave me ideas on new treatments and things to suggest to my neurologists.

I ended up changing careers to keep away from screens. It turns out when your body is under constant attack your brain will start making up triggers of its own, so I now cannot way gluten, sugar or soy without crazy pain. But managing my diet kept pain levels down, and with a ketogenic diet I lost almost 50 pounds

What do you work as?

You mentioned you needed sunglasses and earplugs almost constantly, how did you work with these conditions?

When all this started I worked in IT. Applications like flux made it easier for me, since white and blue lights cause a lot of pain.

I ended up leaving IT for real estate. Eventually due to constant narcotics and a very strict diet I was able to stop wearing the glasses so often. Getting away from screens all day helped as well. Usually I'm up front about it. The wires require a bit more explaining currently Lol

What was the cause of the headaches? How did the diet help?

We never did find the cause. It just came one day, got worse and never left.

The diet comes from that apparently when you're in constant pain, your body will develop triggers. Kind of like a brain making false accusations because it's overwhelmed. So I kept eliminating foods until I found what made it worse. Turns out if I avoid soy, sugar and gluten I can keep the pain present but manageable with minimal meds. Unfortunately that means I'm pretty much more carbs, all fat and protein.

So I really am a steak and potatoes kind of girl Lol

It just came one day, got worse and never left.

Sounds like my ex-wife.

^{I'll show myself out.}

Hey at least if she came it means you were doing something right.

Have you heard of GUNNAR classes? I've been looking into these as my work also involves constant monitor watching. Supposedly they block out the blue light.

I've never heard of that! I'll look into it!

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So if you sat perfectly still it didn't hurt?

No specific motion seems to make it better or worse. Thunderstorms wreck me though.

So... is it better?

It actually helps a lot! It feels a lot like a head massage actually, and brought the pain levels down by about 70%

I had a headache in high school. It started halfway through my freshman year and went away when I was a senior. It was my wisdom teeth all along. I went through CT scans, MRI, EEG, and the worst, a spinal tap at 15. They could not figure it out and eventually we just ran out of tests to do. Then a few days after my wisdom teeth came out, I realized it was gone.

What was the worst test you had to endure? I hope they find a way to cure you, I know how awful it is.

Oh man, all that from teeth? I'm glad it cleared up!

My worst test was a lumbar puncture gone wrong. They did the test just fine, but I wasn't flat long enough to form a blood patch. They transported me to another hospital the next day but lost my paperwork so I was put back into emerg. Sitting in a hard chair I got pressure in my lower back. When I turned I felt a snap, went completely blind and hit the ground screaming without ever realizing I was screaming. It was a bad scene. Got stuck in bed for 48 hours to form one later.

Sometimes unique experiences like yours can teach us unexpected things. Psychological torture, as in bright lights, random loud noises, extreme sleep deprivation, constant mild pain, etc. are well-known to be used by at "enemy-combatant" facilities such as Guantanamo.

Do you think your experience has changed your feelings about this form of torture, give you understand how hard it can be to be in constant pain and sensitive to light/sound?

Truthfully I'd never really thought of it before now.

Prior to all this I would have lumped it together will all other forms of torture. But now, I'm not so sure. Chronic pain with spikes triggered by things that are in every day life leaves it's impression. When a loud noise starts suddenly, you'd think I was being shot at. It's not that the pain kicks up to 11 immediately, it's that I'm conditioned to be afraid. I duck, I cover my head, and it takes me a few seconds to recover.

I hope one day I can get past it once I reach the point of being pain free.

Did you have any side effects? I had severe headaches during high school where I would black out and vomit frequently. I'm sorry for your struggles.

Yep! A lot less than dealing with drugs, but they are weird. Such as any time I walk into a store like best buy, it will turn off my device. I have to use a remote control to turn it back on. It's the same issue with anything that causes an electromagnetic field.

I've had dibilitating migraines and headaches that have lasted more than a day but I can't begin to imagine what you've been through. I admire your persaverance. Do you have any other cybernetic enhancements planned out or at least on your wishlist? Personally, I'd love to have laser eyes.

I would kill for a built in ai! Or a heads up display in my eyes. Both would be amazing

Why does a person need ai? You have ni already.

Personally I like to think of it as multi tasking. Because I'm a nerd, and spend more time thinking of AI than is probably normal, I'll sometimes thing "Wouldn't it be great if I could be out dealing with work, have something come up and just say 'Cortana, research this for me and send it off to a client'"

... And yes, I'd totally name it Cortana.

So can you shower? Is it permanent?

The external device is just a trial, and it will be put under skin along with an implanted battery pack if this goes well. But in the mean time I'm not allowed to shower, which I'll be honest feels really gross already

I can bathe you, seven of nine.

Thankfully I can still take baths on my own, it's just my hair I can't wash lol

I have never heard of this but it sounds very interesting. How does it happen?

New Daily Persistent Headache is just a catch all term for people who have a non-stop headache. Some people have found their cause, but there are many causes.

We never found out what caused mine. Best we can do is treat the symptoms. I did get a diagnosis of occipital neuralgia, meaning my nerves are shot. Usually a cause is injury or a health issue like diabetes, but mine literally just started one morning and never left.

How does it work? Tens didn't do shit for my neuroma. I also found out the company who sold it to me was committing insurance fraud. Billing for items they didn't send and I didn't need.

Yikes, that sounds insanely sketchy.

The way this works is to disrupt the signal from the damaged nerves. Replace the pain signal with... Well... Electrocution. In the end it just kind of feels like a massage chair strapped to my head :-)

Read somewhere that orgasms help people with migraines or reoccurring headaches. Seriously, have you tested this?

Haha yeah I'd read that too.

I think there is something to it, and I can still get regular headaches on top of my constant one. I've seen sex help with headaches, but sadly it doesn't seem to do much for the ones caused by bad nerves

I used to get orgasm headaches and they were the worst. While I don't know what an anuerism feels like, I would imagine they feel similar. It's painful enough to make you fearful of having an orgasm.

I can only imagine the kind of mental conditioning that comes from being in more pain when you have an orgasam. That's horrible :-(

Did you ever see a doctor about them? Was it maybe specific to a certain position that could be pinching nerves?

I've had the same headache for nearly 10 years now. Wake up with it every morning, and I honestly don't remember what it feels like to not have a headache.

I've seen doctor after doctor after doctor, and ran test after scan after test. No one has any answers.

Have any advice? Do I just need to keep trying different doctors/neurologists and going into debt until I find one that has a lightbulb pop up over their head?

I've never heard of your nerve stimulator, so I found that very interesting. I don't have any migraine symptoms though (lights and sounds don't bother me), so I'm not sure if I'd be a good candidate.:( Hopefully it provides you with some relief!

I'm so glad you replied. My primary goal for this AMA was to find other people in the same boat. It's such a rare problem that you just end up feeling alone and no doctors help.

I had to fight a long time to even get a neurologist. I was in emerg every week with insane amounts of pain. When I got one he threw a lot of different meds at me until he told me we had no other options and tried to send me back to my gp. I broke down and cried in his office, which is apparently what it took for them to refer me on.

My greatest success came from meeting my pain management doctor. She is an incredible woman who just focuses on pain, and she was the one person who understood. She'd research and bring new treatments, I'd do the same, and we'd discuss options. I cannot stress enough that you need to be your own advocate. Not many doctors know how to deal with out condition, so sometimes it's up to us to do research and bring it to them. I'm not saying be one of those jerks who says "I read this on the Internet, give me drugs", I'm saying make your doctor your partner and ask them about things you see online.

Many of my treatments came from ideas from an NDPH support group online: http://www.mdjunction.com/forums/ndph-support-forums

My surgery specifically is this one:http://www.ncbi.nlm.nih.gov/m/pubmed/23991822/

The way to find if it will work for you is if you have any success with nerve blocks. When I had nerve blocks done I was pain free, but only for 4-6 hours. That made me a prime candidate for this.

There are many causes for headaches. Once you can narrow it down finding treatments gets a lot easier. We narrowed mine down to nerves through meds, then injections, and finally surgery. If you find yours is nerve related I can give you a list of the meds I found helped me that you can bring to your doctor and ask about.

To help narrow it down I wrote down EVERYTHING. I, have two notebooks just filled with my blood pressure, food eaten, weather, and activities for 2 years. Eventually I found patterns. I wasn't a typical migraine sufferer. Alcohol and caffeine eased the pain, rain made it worse, etc. These notes helped my pain management doctor pick new treatments. Things like how apparently you can have similar pain relief from alcohol through cough syrup. It's the weirdest thing, but the pain management folks are the ones who drew those parallels the best and we're willing to try anything.

Keep at it, ask for referrals, and do your own homework. Doctors are a great resource, but at the end of the day they get to go home. You are your best advocate, you know what your body is feeling. Doctors are your translators.

If you ever have questions, feel free to message me and I'll give you any information I have access to. 3 years has been very tough on me, 10 is unimaginable. I hope you can beat this.

Wow, thank you for the caring and detailed response. It has definitely been tough on me, lately I've felt like it's starting or already has led to depression, because I don't feel like this will ever get better and this is not how I want the rest of my life to be.

I've seen many types of doctors in many different fields, but I haven't seen a doctor specializing in pain management, so that's definitely something I'm going to look into.

I describe my headache as "pressure," behind my forehead, eyes, and cheek bones. You'd think it would be a sinus infection or something, but several ENTs and CT scans say that's not the case. My current neuro has me on Prednisone which supposedly is meant to decrease inflammation in my sinuses to see if it would help, but so far (several weeks in) I've seen no improvement. When I go back, I think I'll express interest in trying a nerve blocker of some sort, because as far as I remember I haven't been down that path yet.

Thank you for the encouraging words. :) You've given me a lot to think about!

My pain is specifically the right side of the head, at the base of my skull, behind my right eye, and shooting up from the inner corner of my eyebrow. On days when it rains it also builds up a general pressure around the crown (pro tip, if you get barometric headaches, drink coffee. It's a god send).

I thought mine was my sinuses for a long time. I kept begging them "just look up my nose!". If you look at a nerve map you'd be amazed, we are very strangely wired creatures :-)

Keep at it, and if you ever want to run something past me just shoot me a PM :-)

I have very regular migrain headaches. I got some weird stories. I gor prescribed blood thinners that old people would use for preventing hearth attacks once, by a doctor.

1. It didnt do anything at all for my pain, but I had to keep taking it twice a day.
2. My parents could barely wake me up in the morning, I was so tired I was practicaly sleeping in class or beeing easly aggrovated.

I went to another doctor and It turns out this medicine was dangerous for children, and the doctor basicly tried to track down the one who prescribed me them and yell at him.

Other than that, I had 1 medicine that actually worked(out of maybe 50 that I tried.) and gues what? I'M ALERGIC! It worked really well the first hour untill I noticed itching around my legs. My skin was boubling like soda on the inside and formed large boubles after a while. I was really scared, but after I tok some pills(we call them "syrtech") it went away within 30 minutes or so.

It contained coffeeine, that really helps for my migrain, and some other stuff, but it was Fanalgin witch is what I'm allergic to.

So far my life savers are energy drinks and those Gunnars glasses that someone told you about earlier. They really work wonders.

No painkillers that really helps, exept it eases up my neck and that stiffens up whenever I have migrains, so its just less overall pain.

If caffeine helps you, has anyone mentioned magnesium? Caffeine usually works well for barometric headaches, made worse by rain and storms. From what I understand it's due to weak walls of blood vessels. A few neurologists have mentioned magnesium helps their patients. Might be something to being up with them?

Fuck, you're living my nightmare. I'm sorry you have to live through that.

How bad is the headache on a scale from 1-10 where 7 is worst?

When I'm hyper vigilant about diet and avoid triggers I can keep the pain at a 5. If I accidentally eat something I shouldn't it's usually around an 8 and I start needing drug intervention.

I'm going to test my new face accessory tonight with one of my triggers and see how I do with maxed out pain :-)

I thought I was looking at a picture of Justine Bateman trying out for a role in Star Trek Borg. Was it an intense headache? Or was it just annoying, you could still work and drive, but just never went away?

It started off as a simple headache. Within 3 weeks I was confined to a basement wearing sunglasses and ear plugs. I was very sound and light sensitive and in emerg every week. It wasn't until I was prescribed long lasting dilauded before I could leave the house.

Did you ever try marijuana to help relieve the pain?/if so, what were the results?

I did actually give it a try. I spoken with one of my doctors about a prescription, and they said before I apply for all that paperwork see if there was someone who "cough help out a little". My doctors are awesome.

I did my research (I have very little experience with weed), and everything from people using it for just pain said one pull should be good. So I got a tiny pipe that looked like a cigarette, got some off a friend and tried. No luck.

Next time decided I'll try a little bit more. As it turns out I have a decent tolerance to narcotics but not so much in the smoking department, as I got very high. The pain was gone, but I was bloody useless.

So I did more reading and some people said edibles worked better for this. So in one last effort I decided to make some firecrackers. Just crackers, peanut butter, and a very small amount of weed.

Ho. Ly. Crap. I sat there for 6 hours unable to close my eyes because the world would go sideways.

So yes, pain relief, but didn't fit my goals of pain relief that would get me back to normal life.

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This external device is actually just a trial. I also have to wear a battery pack attached to it on my belt, and have a remote control to adjust the settings.

If this goes well, they'll install this one as well as one on the back of my neck, and put the battery pack under my collar bone

What did a hangover feel like?

I never had headaches from hangovers before this started, so not much different. Hangovers for me are still all about the upset stomach, lack of energy, and horrible feelings of re analysing everything I did the night before.

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I'd never heard of that book before!

Thankfully I don't draw many parallels between myself and the book. Sounds a lot more like one of the treatments they're working on for seizure patients currently: http://en.m.wikipedia.org/wiki/Deep_brain_stimulation

I'd like to think that by improving my overall disposition by not being in constant pain I'm less likely to become a murderer :-)

I've read a lot about clinical experiments involving psilocybin as a treatment for cluster migraines. Did you ever consider being a part of one of these?

There has been a lot of talk about it on some of the NDPH groups I'm part of.

To be honest since it's been made clear it's nerve damage in my case it likely wouldn't help in terms of my regular pain. However the reports I've read have also said it can help in terms of being a "reset button" for those who's brains have started identifying false triggers from being in constant pain. If my trial eliminates my pain except my weird triggers, it's something I'd consider asking my pain doctors about.

I have recently been diagnosed with New Daily Persistent Headache. I have had a very bad headache since July of 2013. Did your headache just start one day and didn't go away? Also, what was the process like getting diagnosed with this? I had to get a spinal tap, go to several neurologists, TMJ specialist, brain surgeons, ENT doctors, and others. Have you had any medications that have helped you at all throughout this process? I hope you have a speedy recovery! Also, I hope the nerve stimulator helps!!! Would I be able to PM you some questions about it?

Feel free to ask whatever you like! If I can help at all I'm more than happy to share all the info I have :-)

I went through tons of scans. CT scans, MRI, high contrast CT, lumber punctures. I was admitted to hospital and given more tests. I even tried Mon conventional methods. Craniosacral massage, naturopathy, yoga, meditation. I'd do anything to manage the pain. Heck, at one point my grandma started spraying some stuff she bought at an Indian Reservation on my head because it's supposed to ease pain (turns out it was for arthritis. My head felt like it was burning for hours).

The key to my diagnosis was to narrow it down by triggers and through trying every known headache drug in the books. I started studying the drugs to learn how they worked, and find out "oh if they're prescribing me this they think it's nerves, but if they're prescribing this one they think it's related to calcium levels".

For me the big Ah Ha! moment came from the nerve blocks. They're very common, usually easy to get access to (and hurt like a son of a whore. Sorry), but I would be pain free but only for 4-6 hours. Through those injections we started isolating which nerves were the problem. They tried a drug called Mexiletine which we had great success with, which surprised the doctors because it is very rarely prescribed because most people can't tolerate it, but it's an anti arrhythmia medication with the side effects of working on diabetic nerve damage.

The qualifications for getting the nerve stimulator was a diagnosis of occipital neuralgia. So I asked my doc if I qualified, she gave me a few shots and sure enough I did. So she referred me to an amazing surgeon here in Ottawa and here I am.

Your greatest assets in finding things that help will be things like online support groups. It was through the NDPH support group at MD junction that I was able to learn of different treatments to ask my doctor about. They also know exactly how we feel. The moment I knew I was with the right people was when one of the girls described her headache. Not headaches. Singular.

NDPH is a cover all term, and it's not common. But there are enough of us out there now that I really think we can help each other through sharing information.

Please don't hesitate to message me any time with questions. I'd be happy to help.

How uncomfortable is it to sleep at night ? Do lights like light from the TV bother you at all ?

With no wires sleeping got tricky, so the doctors had to prescribe meds, then meds to handle the side effects of those meds. It's kind of crazy how much medication I ended up on at some points.

With the wires in I keep waking up tangled in my battery pack (just woke up from my first time trying with these wires). I've learned my lesson to turn down the voltage on my stimulator, otherwise when my face hits the pillow it feels like being electrocuted

A little late to the party, but: Did a normal TENS machine help you?

Or maybe my question is, should I even think of getting a nerve stimulator if TENS did not helped me?

It's OK, I still get lots of messages from this post :)

I had very little luck with TENS, but I think it was a placement issue. They say the ultimate test to see if you qualify for the surgery is actually if you get any relief from a nerve block. My nerve blocks got rid of my pain, but only 8 hours at a time. But it did mean that we'd found the nerves that were causing the problem, thus we could target those specific nerves with the device.

How did you get diagnosed ? What was the process like ? I've had the same excruciating headache for four months now and my doctors just give me anti depressants. Doesn't help but just makes me emotionally unstable. Nothing makes me feel better. I would love just to know more about your experience . and thank you for doing this. I really started thinking I was crazy buy maybe I'm not. again thank you !

Some anti-depressants actually are known treatments for headaches. I was given SSRI as well as some others. If you're not making progress with your doctor, maybe you could ask for a referral to a neurologist. You're not alone by far, but it sounds like you need to talk to someone with experience with headaches.

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Thanks!

This is just a trial, but if this goes well I'm getting the ones in the back of my head reimplanted.

The first thing on my list to do is eat Creme Brule. It's my friends specialty dish, and it looks incredible but I can't eat sugar. He has promised to teach me how to make it when I get better :-)

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Effectiveness would be the same, the difference would be that I can take a shower ;-)

Will you always look like what you do in your proof picture or will it look more natural over time?

It will look a lot more natural once they put in the permanent install and implant it all under my skin :-)

any better?

It's hard to tell right now because I'm getting a lot of incision pain. My plan tonight is to use one of my triggers to see if having the device on helps. This is also an excellent excuse for me to eat ice cream (sugar is a trigger).

My last stimulator install helped 100%. It was on the back of my head and was incredible.

Can I take you to dinner sometime?

I think if girls with cybernetics installed do it for you, I'm sure there are probably Japanese sites out there who could assist :)

Why do you suck ass?

Well it is an AMA, guess I can't be picky.

It all began when I lived in the farm, off in the back wilderness of Canada. You see, the population is so sparse that sometimes the only living souls I'd see for weeks were the local wildlife. On one excursion where I was searching the Arctic tundra for food for my family I met a donkey! Imagine my surprise finding one in the cold and snow! Now I could have killed it and used the meat, but lost in the ice and snow I felt a bond with him. We were in the same boat, out of our element and trying to survive. So I took him home and Harold (as I named him) became one of my best friends. Years went by, and we had some really great times. One day, an arctic Canadian snow snake came into my humble farm. While I feel an affinity for anything that can survive up here, I have no love of these unnatural creatures. As I cleaned out the barn I saw Harold making a terrible racket. I ran over just in time to see the snake bite him! I killed the snake with my lumberjack axe on the spot, but the damage was done. I knew what I had to do. So as Harold lay there dying with a snake bite to his side, I sucked the poison from his wound and spat it out onto the corpse of his dead assailant. Thankfully Harold made a full recovery.

So say what you will, but sucking that ass saved my best friends life, and I'd do it all over again.