insanely severe burning pain in maxilliary sinus area

Hello all, first post here.

I have the most bewildering pain condition in my face. It started about six months ago and is still going strong. It began with the normal symptoms of a sinus infection: pressure in sinus area, stuffiness, cold-like feeling, etc. Sudafed and paracetomol were sufficient at this point so I assumed it would go away fairly quickly (how wrong I was!). Well after a few weeks the pressure began to turn into quite a bad pain so I went to the doctor and they gave me antibiotics and prescription co-codomol (stronger than the OTC ones) Over the next six weeks or so they tried four different types of antibiotic and they did nothing and the pain was getting worse and worse so they prescribed me Tramadol and ordered a CT scan.

At this point the pain is absolutely on a level I never thought possible: a never ending burning, throbbing sensation just under both cheeks, always simultaneously. I was taking 100mg tramadol, 400mg Ibuprofen and 1000mg paracetomol 3-4 times a day and it was BARELY TOUCHING IT (!). The CT results came back at the doctor, so I rushed in all excited that they would find the source and be able to operate or something. Well imagine my disappointment when the CT results were clear as day! So the doctor said it must be neuropathic pain, so prescribed Amitriptyline 10mg, eventually upped to 20mg. This provided some relief and dramatically reduced the amount of opiods I was taking.

I managed on 20mg Amitriptyline along with various codeine, tramadol, etc as required (but not constant having to take these like before) for about two months. Bear in mind I'm working full time during this whole period right from the beginning. But then this stopped working, so I upped the Amitriptyline to 30mg and that really seemed to work, however after a few weeks of that I became really manic, anxious, depressed, etc. Went back to the doc and he said its a side effect of the Amitriptyline so I dropped it down to 10mg, then back up to 20mg, which seems to be the maximum tolerable dose in terms of side effects, and am now still struggling through on that.

Phew, there we have it. I've been told by an ENT specialist that I have 'mid-segment facial pain', and am due to see a neurologist in about four weeks time. Does anyone have any experience of this and have any ideas about which drugs will work best and not make me feeling horrible in other ways. I've heard Gabapentin will be better? Also if this kind of thing ever goes away? Been six months now and no sign of it slowing down.

Welcome aboard, sorry you had a need to find us and be among us.

I am always amazed at the variety of stories that brings a person here. Haven't read of case quite like yours, but it sounds like it would almost make you go mad, with all that severe pain in the face itself.

Yes, for all the talk of the age we are in, with CT's, PET Scans, MRI's, I am amazed at how often they come back either clear or inconclusive. I am dealing with severe cancer related pain, and during a series of MRI's in April, a spot appeared around the L4 part of my lower spine, right where I was having such severe pain. 2 radiation doctors looked at the scan, plus my cancer doctor, plus another expert, so 5 doctors looked at the spot and couldn't determine what it was. they didn't think it was metastisis from the cancer, but then they said they couldn't rule it out. Some thought it was some kind of disc bulge, but they wouldn't agree on it either.

So I was still left with the pain, went through all that and the expense, and still don't have an answer..

Good luck to you, hope you find the right combination of meds to make life more bearable for you, and please keep us posted on what you are going through.

david in sc

Hi Holydiver, wow I cannot begin to imagine having to deal with the pain you are describing. I get severe sinus infections because of only having three sinus cavities and I know how miserable the facial pain from that is, I cannot fathom what you are dealing with.

I have not ever heard of what your drs are telling you this is. It would be interesting to know what the cause is, I hope someone will be able to tell you this.

If the Amitriptilene helped, yes, they must be onto something about it having nerves involved. Amitriptilene was used frequently for nerve pain in the early days before the newer nerve meds came along. Hopefully one of those will help, but keep in mind they all have side effects which usually go away in a couple of weeks.

I hope you have a good visit with the neurologist. A 4 week wait sounds like forever, but it will be here before you know it. Keep us posted on how you are doing...Susie

Hi Holydiver, Sorry to say I can't help you with your issues but just wanted to jump in and Welcome you to the CP Forum. There are a lot of people here with vast knowledge in all kinds of things. Keep a check back and Hopefully someone will come along soon and have some info for you.. There are some Great People here.

Good luck.
D.

Ah ok my mistake, won't mention it again.

Yeah I will have a look around when I've got more time and post in some other threads, seems like a very supportive bunch here!

In pain news: I'm really sick of taking tramadol/codeine so much, would really like full clarity of thought back but have no choice.

Post Edited (holydiver) : 8/1/2012 1:52:18 PM (GMT-6)

Hey Holydiver,

I have left sided facial pain, in my eighth year now, it is unrelenting and sometimes I just can't believe this is happening to me...it is cruel.
Lyrica was the first drug i was prescribed, then Cymbalta was added, then tramadol if required(I rarely take it as I don't want to be on too many tablets)...a few weeks ago the specialist increased the Cvmbalta which has been much better during the day..
The evenings are worse but I take One Xanax at night which calms the nerve down enough for me to get sleep. Oddly enough the nerve settles with sleep but starts up again once I wake. Driving is a nightmare as my face pulls, tugs, stings etc.
I don't think there are any cures in sight, nor on the horizon, which is depressing.
Just thought you might be interested to hear what treatment my specialist chose for my facial pain, hope this may help you. It is not an instant relief, it takes time to work and you may not get anywhere near full pain relief but somehow we cope.
Please keep us informed on your diagnosis and treatment, I am most interested.
Radles

Hey Holydiver,
This neuropathic pain is something else isn't it, I don't think you can even begin to compare it with other pain, especially when it is in the face.
I felt pretty down the other day as I forgot to take my am medicine and the realty of just how bad the pain is when just one dose is missed really scared me. It makes you feel so vulnerable.
I did not think you could safely take tramadol and codeine together, you should check on that one.
Do you mind describing your symptoms, and just where the pain is again...I would be really interested, it is rare I get to talk to someone in the same boat.
My doctor told me that my neuropathic pain originates from the brain stem, they don't really understand it, so I guess it is all trial and error.
Radles

Just been to see neurologist, he thinks its some kind of 'neuralgia' and wants me to up the gabapentin and also add in a small bit of amitriptyline maybe 10mg at night. Said the initial goal was to get me away from tramadol, I guess because its not good to take such a powerful drug long term.

Also he said that once we get it under control with gaba/ami, it should go away eventually? Not holding out any hope, I am seriously going to lose my mind soon. Its really hard to enjoy anything or relax when in this pain all the time. Also I searched 'neuralgia' online and most pages describe it is a short attack of stabbing pain, rather than the constant, unrelenting burning ache that I get. So I don't know. Can't take it any more!

Hi holydiver and radles,

I am not a doctor but I'm a nurse and have cared for patients that have had a surgical procedure called microvascular decompression for trigeminal neuralgia. The trigeminal nerve serves your face so I wonder if this is the nerve pain you are experiencing. Since I only see them initially post op I don't know how successful the procedure is.
I wish the best for both of you!

I think tramadol is OK with codeine, but be careful if taking it with amitriptyline. Together they can give you serotonin syndrome because they both raise serotonin.

My chronic sinus pain from recurring infections is helped some by tramadol. Antibiotics don't give me long-term relief. The infections just come back in a couple of weeks.

Ah was just browsing and noticed a few more posts so thought I'd check back in.

The pain is still here and very bad. I am now on 600mg Gabapentin 3x daily which was helping quite a lot for a while but as of this week appears to have stopped working so well and the acute burning sensation in both sinus areas is getting a lot worse again.

I'm also feeling quite unwell every 5-6 days or so, seems to coincide with the weekend. I make it through work fairly well and then crash the whole weekend with a lot of tiredness, aches all over, etc along with the normal pain.

I've also seen an allergy specialist and am on a large does of antihistamines and a nasal steroid spray after being diagnosed with 'non-allergic rhinitis' i.e. histamine release/allergy symptoms with no identifiable allergen involved. Most likely connected to the pain but who knows.

I'm basically losing the will to live here the pain is so so bad. Currently on codeine, paracetamol, ibuprofen and gabapentin and it is just about bearable.

Holydiver, please don't give up. I have the EXACT pain as you do. Mine started suddenly before Thanksgiving this year. It feels like my gums, the roof of my mouth, and my tongue are one fire constantly. It also feels like whatever it is it's trying to push out all of my teeth.

I went to see my oral surgeon who took a simple x-ray. He didn't see much, but he thought he saw some infection in a bone graft I had above tooth #13. He requested my PCP to order a CT scan stat. I got the results last week, only to find out no infection was detected. I was truly discouraged, however, it did detect a small mass of some sort in that area. My PCP then ordered some very specific tests for infection. Those test results came back today - no infection.

In the meantime, I've had to have two IV drips due to severe dehydration from all the antibiotics and pain medication.

I see my OS again next week, but he called me in the meantime and suggested that it might be maxillary cancer, which is very rare. I am hoping and assuming you have been tested for a bone infection or cancer. Bone infections in this area are hard to detect with a CT.

When I read your first post I was moved by the fact that you described my pain exactly. My heart is heavy for you and hope we both get a diagnosis soon.

I found this post via google and just had to respond.

For 10 years I have had what my old GP said was severe sinisitus and treated me with sprays, pills, antibiotics. To give you some history I had sinistus as a child and them drained when I was 10 years old so I've known the pain at the bridge of my nose all my life.   I got fed up with my doctor not referring me so changed surgery. Straight away they referred me to ENT and I had a camera up my nose and a CT scan. Imagine my suprise when they both came back clear. Good news they said! But the downside is that basically I had no diagnosis so they called it 'mid facial pain' was probably nerve pain and was presribed Amitriptyline to start at 10mg and move up as required.

I have been on Amitriptyline for about 6-8 weeks. My doctor said to keep the dose as low as possible but after 4 weeks I went up to 20mg.  The doctor I saw was just as puzzled with the diagnosis as I was.

Today the pain has come back with avengance at the bridge of my nose and something I have never experienced before, dizziness. It is making me feel sick.

I dont know where to go from here other then back to the doctor?