Out of desperation and lack of help from doctor's, I have decided to try and do a little bit more research on my own.  My case is not typical, but it is worsening. 

Bear with me, it will take a little while to explain. 

It started in July of 2007.  I worked in sales and spent a lot of time on the phone, so the first thing I noticed was that my jaw was aching.  I started by taking ibuprofen and didn't give it any more thought.  After a few days, I was kind of surprised that the jaw pain had not gone away.  I went and saw a customer of mine who happened to be a dentist, got a prescription for something a little stronger to work through the pain, and continued on my way.  Now, this is going to sound a little strange to you, but it took me about a week to realize that I had also had a headache the whole time, but I was preoccupied with my jaw to really pay attention.  At this point, I was a little worried.  I saw the first of many doctors, and tried the first of many different medications. 

Once the headache started, it never ceased.  It changes in intensity from low dull to what you guys refer to as a K10 on rare occurrences, but I'm getting ahead of myself. 

I went to one doctor, then another, then another.  I had blood tests, MRI's, and tried every medication on the market, to no avail.  Finally, after being frustrated with the doctor's I had seen and the lack of time they seemed to have with me, a friend recommended a doctor that he was aware of that had just set up a new practice after getting out of residency.  He had no patients, so he had plenty of time to be patient with me.  It was the best decision I made. 

Fast forward about a year after it has started.  Up until this point, we had not found anything that worked and the only thing that worked for pain was using pain killers (Lortab) to take the edge off - it never went all the way away.  After going through many different medications, we stumbled upon using Amitryptiline and the headache ceased!  This worked for six months, and then the headache came back with a vengeance.  Once it came back, it has never ceased since then. 

It was around the middle of 2009 that I got my first "suicide headache".  You guys know what I'm talking about, so there is no need to explain it to you.  This was different than my standard headache in that it had a slow buildup to it and I usually have about a 1 hour warning that one is coming on.  You might ask, "Steve, if you have a headache all the time, how do you know you have a severe one coming?"  And I will tell you that my standard headache is on both sides of my head, right behind my eyes and in my temples, but this severe headache is right behind my left eye, so I get a pretty good idea it is coming. 

After my 3rd of 4th one of these, I stumbled upon the idea of using oxygen as a way to help me get through it.  I get these headaches about once a month or so, and the oxygen seems to help some of the times, but not always, as you guys are aware. 

I retired on Dec. 31st, 2009, as it was just too much for me.  I am hyper sensitive now to light and sound, so working a 9 hour day with ringing phones and having to venture out in the sun was just painful and too much for me.  At this time, I was 29 years old.

Around March of 2010, it changed again.  I started getting mild nausea 24/7, unceasing.  On top of that, my resting heart rate jumped about 40bpm, from 70 to 110bpm.  To complicate matters further, I started losing weight, and fast.  Even though I had the nauseous feeling all the time, I was still taking care to eat at least two meals a day to make sure I got my daily caloric intake.  The nausea seemed to subside if I ate and was worse on an empty stomach, so eating wasn't an issue. 

I went from 177lbs to 151lbs in 30 days, for a total of 26lbs.  If you've never lost weight at that rate before, it takes an astronomical amount of strength out of you.  I saw many specialists and lots of different doctors, had an EGD and a colonoscopy, and nothing was found.  We eventually found a medication that seemed to help, although it (Reglan) has very severe and dangerous side effects, so I used it only for a six week  period.  This seemed to have cured the nausea, although it still pops up about three months after a cycle of the Reglan.  When it does, I will pop back onto the Reglan for a few weeks until it subsides. 

At the same time as all of these new symptoms popped up, I also started having severe insomnia.  A prescription of Ambien seemed to cure it for a while, but the negative side effects from it (anxiety and depression) started to pop up after taking it for about a year, so I went off of it.  I also found out that in that time, my insomnia went from severe to crippling.  As of today's date, I am not sleeping at all, pretty much.  I will take the Ambien about once every three days, and sometimes it works, and sometimes it doesn't.  Without taking it (and sometimes with it), I'll get a total of maybe two hours of sleep a night, in 15 minute naps. 

On top of all that, I have begun to lose weight again.  I was back up to about 155lbs but have fallen down to 143lbs or so, and am losing about 1-2lbs per week.  My appetite has waned now, and I'm taking protein/weight gain shakes now to try and get in some extra calories to maintain what I have now. 

My doctor's have no clue what is wrong.  We suspected everything under the sun, from brain tumor's to Lyme disease, with no luck in diagnosing any of it.  I have seen every sort of doctor you can imagine (I am now on my 5th neurologist), tried every medication known to man, and every vitamin, supplement, holistic medicine, herb and anything else you can imagine.  I've even tried acupuncture.  Nothing works.  My regular doctor has asked me to use a pain management clinic to get my pain medication through, which I understand from his point.  Unfortunately, pain management clinics are basically a fraudulent operation, a scam that cheats you out of money to get your prescription.  To get a $3 dollar prescription filled, I have to pay a $50 copay once a month to them.  Most times I never see a doctor or anything like that.  If I ever get well enough to be able to venture out in public like a normal human being, I will make it my goal in life to put these sorts of places out of business. 

I realize that this has been a very long post, and I appreciate all of you bearing with me on this.  I've run out of options and am now planning on trying some of the "non legal" options to try and cure my pain. 

I cannot live like this anymore.  I've spent 5 years in constant pain now, and I'm just tired of it all. 

We believe I have something called NDPH, but what doesn't make sense is the fact that I also somehow get the severe cluster headache about once a month.  It responds to oxygen, and the description of the headache is precisely the definition.  Is it possible I have both, or is this some sort of mutated Cluster headache that is rare even in this community? 

Thank you for your time in reading this post.  I greatly appreciate any help you can give me.