Hi,

I desperately need someone to tell me they have experienced something similar to this. Sorry if it gets long but I don't want to leave anything out.

I have seen a neurologist (MS clinic where they did MRI of brain and spine), headache neurologist and neuropthamologist. They all think I'm having some kind of atypical migraine/facial pain.

The MRI I had in February of last year showed a small spot - however neither neurologist thought it was anything to be concerned with. A CT scan in August concerned my primary, and neurologist compared with it previous MRI and said it was the same spot, nothing to be concerned with. Yet sometimes I'm still just terrified.

Current headache is sinus pressure-like. I wake up with it, and it never goes away. More of facial pain than head, although frequently my forehead and temples hurt. It's a feeling of pressure and numbness, particularly behind my eye. The pressure gets so intense as the day goes on that I feel like my head is in a trash compactor. I've also seen eye doctor countless times and all is normal. I have been to the ER on several occasions and was given steroid/painkiller injections but they didn't help.

It as not AS intense as it was back in July thanks to xanax. I don't know why that helps, but so far it is the only thing that gives me any relief at all.

I actually had sinus surgery last year bc I was convinced I was having chronic sinus infections (I used to...). After surgery I felt great for two months. But then this headache came on, which is different from past headaches, and aside from two Weeks in early December, it has never let up.

We have tried:

All triptans
all painkillers, including Actiq (morphine)
zoloft/wellbutrin/paxil
decongestants/expectorants
acupuncture
chiropractic/massage
Short course of Depakote - but I was having problems with that.
IV of magnesium

I've tried diet - no dairy, no sugar to see if that makes a difference and it does not.

One thing of note - I went of Birth control pills after 12 years in February. But my doctors don't think this is hormonal.

We have not tried topomax bc I am trying to get pregnant - they are convinced that I will feel better. I hope so, but in the meantime the wait is just so difficult.

Last week doctor gave me an IV of ketamine. Apparently, it worked! But I don't remember anything - can't really live like an amnesiac!

I used to have severe neck/back pain which was thought to be fibromyalgia by some docs but not all. Well, since the headaches started in January, I no longer have back/neck pain. Which is why my pain doc things there may be some kind of problem with the pain mechanism in my brain.

I don't know if I am making any sense here, but I just feel like I'm going to lose it. I only take small amount of the xanax daily and it gets me by okay for now. But my whole lifestyle has changed. ANY alcohol - even a few sips, makes things 100 times worse. I almost never go out anymore bc work takes everything out of me.

Oh - heat and ice do help.

Sorry for rambling. I just wonder if anyone has similar experiences or thoughts.

I used to get 24/7 headaches. I had all kinds of tests including CT scans.

Finally one day after about a year or more, I was at my dentists office and he started to ask me the most bizzar questions; rather he told me what I was experiencing. He wanted to know how I slept at night. If I woke up in the night for no reason. If I had headaches. Did the headaches go away. etc.

I was becoming paranoid that he had a camera into apartment, LOL

I told him that he was bang on and wanted to know how he knew all that. He told me that I grind my teeth and those are the classic symptoms of teeth grinders.

He fixed me up with a dental form that I wear at night and it cured my headaches.

I'm not saying that this is your problem, but it's worth going to get checked out by your dentist. Often times teeth grinding and jaw tightness is the cause of our worse headaches.

Quote from mek918:

Hi,

I desperately need someone to tell me they have experienced something similar to this. Sorry if it gets long but I don't want to leave anything out.

I have seen a neurologist (MS clinic where they did MRI of brain and spine), headache neurologist and neuropthamologist. They all think I'm having some kind of atypical migraine/facial pain.

The MRI I had in February of last year showed a small spot - however neither neurologist thought it was anything to be concerned with. A CT scan in August concerned my primary, and neurologist compared with it previous MRI and said it was the same spot, nothing to be concerned with. Yet sometimes I'm still just terrified.

Current headache is sinus pressure-like. I wake up with it, and it never goes away. More of facial pain than head, although frequently my forehead and temples hurt. It's a feeling of pressure and numbness, particularly behind my eye. The pressure gets so intense as the day goes on that I feel like my head is in a trash compactor. I've also seen eye doctor countless times and all is normal. I have been to the ER on several occasions and was given steroid/painkiller injections but they didn't help.

It as not AS intense as it was back in July thanks to xanax. I don't know why that helps, but so far it is the only thing that gives me any relief at all.

I actually had sinus surgery last year bc I was convinced I was having chronic sinus infections (I used to...). After surgery I felt great for two months. But then this headache came on, which is different from past headaches, and aside from two Weeks in early December, it has never let up.

We have tried:

All triptans
all painkillers, including Actiq (morphine)
zoloft/wellbutrin/paxil
decongestants/expectorants
acupuncture
chiropractic/massage
Short course of Depakote - but I was having problems with that.
IV of magnesium

I've tried diet - no dairy, no sugar to see if that makes a difference and it does not.

One thing of note - I went of Birth control pills after 12 years in February. But my doctors don't think this is hormonal.

We have not tried topomax bc I am trying to get pregnant - they are convinced that I will feel better. I hope so, but in the meantime the wait is just so difficult.

Last week doctor gave me an IV of ketamine. Apparently, it worked! But I don't remember anything - can't really live like an amnesiac!

I used to have severe neck/back pain which was thought to be fibromyalgia by some docs but not all. Well, since the headaches started in January, I no longer have back/neck pain. Which is why my pain doc things there may be some kind of problem with the pain mechanism in my brain.

I don't know if I am making any sense here, but I just feel like I'm going to lose it. I only take small amount of the xanax daily and it gets me by okay for now. But my whole lifestyle has changed. ANY alcohol - even a few sips, makes things 100 times worse. I almost never go out anymore bc work takes everything out of me.

Oh - heat and ice do help.

Sorry for rambling. I just wonder if anyone has similar experiences or thoughts.

Just to let you know Actiq is NOT morphine. It is Fetanyl. VERY DIFFERENT!!