6 month 24/7 migraine - please help!

[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.

[sweet28]

hi I was reading your post...I also suffer from migranes about two months ago they took a MRI of my head...The doctor told me that everyone has something in the back of their brain that is supposed to be in the middle of your head and mine is going to the right side of my head....They also told me I have a sist under my right eye she said its nothing to be worried about...so she sent me to a neurologist...When I got there he said nothing about the situation he just gave me some pills to start...I need to take them everynight they are called amitripytline I don't know if you ever tryed those..They take about two weeks to start working they do work pretty good I used to get these really bad migranes that lasted so long I was crying with the pain...I would have headaches everyday...This month I only counted 4 headaches and they were not that bad....He also gave me another kind of medication for when I do get a migrane he gave me Almotriptan they work really good to....maybe you can ask your doctor about these medications if you havent already tryed them.

[Karla]

There are a few things that you said that make me think you may suffer from cluster headaches. One of them is that alot of the pain is behind your eye. Many people who suffer from clusters are often misdiagnosed as having sinus trouble. Most people who suffer from cluster headaches are eposodic meaning they will get 1 to 8 headaches a day every day for several weeks up to 2-6 months. Then they will just quit only to return at the same time next year. Some eposodics suffer from 2 or 3 shorter cycles during the year. But they occur at the same times every year. The headaches occur at the same time every day. They last from 15 min. to 4 hours. It will feel like one big headache but what it is Is a low level ha that quickly becomes a 10 then after 15 min. to 4 hours latter it will die down to a 2 or 3. It feels like it never really leaves but you can tell you are suffering from different ha by the peaks and valleys. Alcohol will set off about 90% of those who suffer from ch into an immediate attack. Most people suffer from the ha at night but not all. You may want to do a google search for cluster headaches. There is an online support group that has a quiz you can take to see if this is what you suffer from and also a ton of info on medicines to try and ways to relieve the pain and suffering. Good luck and I hope it isn't clusters.

[mek918]

Thanks for your replies. No, definitely not cluster headache. It never goes away - and it gets progressively worse as the day goes on. No peaks and valleys (aside from not being as bad when I wake up in the morning).

I tried small doses of amitryptiline in the past but one day may try it again. Since I'm trying to get pregnant right now, I'm in a bit of a bind.
Xanax is keeping me sane through all this and I will keep taking it until I know that I am pregnant. At least it doesn't build up in your system.

So, so frustrating.

[hereforyou]

I sometimes wonder if my migraines may be sinus related. For me, the triptans work, however I take them all the time. I am currently on amerge twice a day. My neurologist is trying to break my daily migraine cycle. I also take neurontin 1200mg a day and in a few weeks I will be at 1800 mg. I also take naproxen if needed. I just had a CT of my sinuses today and for the most part it was normal with the exception of a moderately deviated septum and the left ethmoid infundibulum not open. Incidentally, my headaches are always on the left side. One reason I believe that my left sinus contributes to the triggering of my migraines is the fact that usually it is the only side that gets congested. Also, sinus are generally open air spaces and I know I'm up for a headache if a low pressure system is moving into the area. Also, I cannot drink alcoholic beverages, esp wine. Bright sun will also get me.

QUESTION, does anyone know if sinus problems can cause migraine or does anyone experience this sort of problem. Right now I have a slight migraine and my left sinus feels itchy.

thank you!