insanely severe burning pain in maxilliary sinus area

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holydiver
Regular Member


Date Joined Jul 2012
Total Posts : 82
   Posted 7/28/2012 12:26 PM (GMT -6)   
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.

Screaming Eagle
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Total Posts : 4974
   Posted 7/28/2012 12:45 PM (GMT -6)   

 

 Hello Holydiver!...and welcome to our chronic pain forum!

      I'm not familiar with your condition, but yes!...if it is indeed nerve pain, then Gabapention (Neurotin) may work well. There are also other nerve med's you can ask about ...Cymbalta, and Lyrica. They may be worth trying as well.

       Good luck, and Enjoy the forum!

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Post Edited (Screaming Eagle) : 7/28/2012 2:11:22 PM (GMT-6)


Purgatory
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Date Joined Oct 2008
Total Posts : 23848
   Posted 7/28/2012 1:13 PM (GMT -6)   
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
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holydiver
Regular Member


Date Joined Jul 2012
Total Posts : 82
   Posted 7/28/2012 3:16 PM (GMT -6)   
Thanks Screaming Eagle, its good to find out about others' experiences with similar difficulties, glad I stumbled across this place.

Purgatory: That's what I worry about, that they've missed something and there's actually a serious cause for this pain. But considering the Amitriptyline has worked so well (by that I mean saved my life) must confirm the neuropathic nature of the pain since this drug only works for this type of pain. Hope you find an answer for yours, sounds rough

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 11055
   Posted 7/28/2012 9:35 PM (GMT -6)   
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
Moderator, Chronic Pain Forum & Psoriasis Forum

holydiver
Regular Member


Date Joined Jul 2012
Total Posts : 82
   Posted 7/31/2012 4:57 PM (GMT -6)   
Thanks straydog I will do, I'm going to see what the neurologist things. Yeah its murder but with the Amitriptyline its bearable, lord knows how I'd cope without that. Hoping to get on one of the newer drugs that will have a longer lasting effect so I don't get so many ups and downs. Always have to have tramadol on my wallet just in case the insane burning begins to flair up.

One thing I have found amazingly helpful is good old caffeine, I didn't drink much coffee before but I have loads now, it seems to make any other painkillers work twice as well. And even on its own seems to ease the pain/pressure feeling.

Post Edited (holydiver) : 8/1/2012 1:49:03 PM (GMT-6)


Darnme2000
Regular Member


Date Joined Feb 2012
Total Posts : 88
   Posted 7/31/2012 10:42 PM (GMT -6)   
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.
You don't stop laughing when you grow old
You grow old when you stop laughing !!!

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3190
   Posted 8/1/2012 2:23 AM (GMT -6)   
Holydiver....

As w/ everyone else - I want to welcome you to HealingWell.

I'm really sorry to hear about your pain though - that sounds awful... I'm glad the amitriptyline is helping some, though.... and, yes, I notice that caffeine seems to help w/ some of my pain - in particular, with my migraines.

One quick note... we encourage all new members to read our forum rules (upper right hand corner)... you mentioned about the cannabis... so I just wanted to make mention of the rules (see #1). No worries; just a reminder for future posts.

The people here are very supportive - so hope to see you posting more!

--Tina
Moderator - Chronic Pain Forum

My faith and family sustain me even on my worst days... as well as my wonderful friends here at HW.

Health/Pain Issues - too many to list; feel free to ask

holydiver
Regular Member


Date Joined Jul 2012
Total Posts : 82
   Posted 8/1/2012 2:48 PM (GMT -6)   
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)


holydiver
Regular Member


Date Joined Jul 2012
Total Posts : 82
   Posted 8/6/2012 1:51 PM (GMT -6)   
Wow, this pain is UNREAL right now

Its been just about bearable for the last two months or so...but on Friday it suddenly flared up really, really bad, I swear I almost lost my mind. Currently on 100mg Tramadol and 2x co-codomol along with normal Amitriptyline, feel drugged up as hell but I'm STILL IN PAIN...arrghhhhhh

Got some Gabapentin today, hoping this will somehow work, was going to wait until the weekend to start it so i didn't have to worry about side effects at work, but may have to just start tomorrow anyway :(

Radles
Regular Member


Date Joined May 2010
Total Posts : 49
   Posted 8/7/2012 5:38 AM (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

holydiver
Regular Member


Date Joined Jul 2012
Total Posts : 82
   Posted 8/7/2012 4:03 PM (GMT -6)   
I know Radles, its incredible the pain some people have to go through. Mine isn't even as bad as a lot of people on here too. And the fact that there is often nothing to be done besides controlling the pain with loads of drugs. Yours sounds really rough, you have my sympathy for sure

I try to avoid tramadol too, I have a big supply though for when I have to. It can be quite overpowering. Before I got onto amitriptyline I was taking 100mg every 4 hours every day, not great. Lyrica sounds interesting in that its specifically for neuropathic pain, I'll certainly ask the doctor about it if the gabapentin doesn't work out.

Well last night I had the full dose of tramadol, co-codomol, ibuprofen and amitriptyline and I was in unbelievable pain still, felt like my face was about to explode. I took one of these Gabapentin tablets and it definitely eased it once it finally kicked in. Carried on taking it today and it seems to be working, less tramadol needed, here's hoping it carries on doing so...

Radles
Regular Member


Date Joined May 2010
Total Posts : 49
   Posted 8/11/2012 6:44 AM (GMT -6)   
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

holydiver
Regular Member


Date Joined Jul 2012
Total Posts : 82
   Posted 8/11/2012 3:19 PM (GMT -6)   
Hi Radles,

Tramadol and Codeine are not unsafe to take together I don't think, I don't usually and did phone the doctor to ask and he confirmed. Its generally not advised though because it increases side effects (ie drowsiness/constipation) a lot with both together. I was just desperate at the time.

Yeah I'm taking gabapentin now and 5-6 hours after the last dose I do feel the pain come back in - sometimes forget how bad it can be I agree. Stuff is working so far though even if it makes me feel a bit weird.

I would describe the pain as a heavy burning sensation along with a feeling of pressure too, like a dull ache. It tends to come on gradually at first and then get very severe. At its worst I ended up in the ER thinking my face was going to explode! I always have a strip of tramadol in my wallet wherever I am just in case. The pain is located in my maxillary sinus area (the upper cheek area), always simultaneous on both sides. Nowhere else, only there. How about yourself, whereabouts is yours and how does it strike? I've heard of people having sudden stabbing pains out of the blue, mine is not like that, it comes on gradually. Also what meds are you on?

Post Edited (holydiver) : 8/11/2012 2:22:07 PM (GMT-6)


holydiver
Regular Member


Date Joined Jul 2012
Total Posts : 82
   Posted 8/23/2012 11:42 AM (GMT -6)   
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!

Lisk
New Member


Date Joined Oct 2012
Total Posts : 5
   Posted 10/17/2012 2:38 AM (GMT -6)   
Hi Holydiver,

This is my first EVER post on a forum/chat. I was Googling 'neuropathic facial pain' and stumbled upon your posts...they nearly described my pain exactly! I have had chronic head/face/neck pain for the best part of 25 years, becoming pretty well constant for the last 18 or so years (it's all a blurrrr)and then very severe the last 2 years (I am 49yo). I tried a lot of Chiropractic/Physio/Acupuncture/Homeopathy/Hormone Therapy/Naturopathy, etc etc, which seemed to help in the beginning (in amongst all the doctors who didn't know what to do with me). Then as the headaches/migraines/face pain got more intense I did about 10 years of orthodontic work (they found jaw joint damage and mal-occlusion), including dozens of 'teeth' splints and braces for 2.5 years. That seemed to help a bit for a while. Then the pain intensified again. I then tried another round of practitioners, complimentary and orthodox, to no avail. Then, one day I was on antibiotics for something else and the facial/maxillary/left frontal/ temporal pain seemed to ease...so I thought maybe it was chronic 'sinus' after all. Sooooo I went through about 8 different antibiotics (stuffed my stomach up)....the antibiotics seemed to help for 3-4 days, then the pain would come back. I saw another ENT specialist who said I had chronic infective rhinosinivitis (as demonstrated on endoscopic exam), then I saw another ENT who said everything was fine with my sinuses! Meanwhile the intense pain continued day and night. Last week a new GP I saw said 'it might be neuropathic or migraine-like face pain' and tried me on Lyrica. I was only on 1 x 75mg at night for three days and I slept like a baby! then the pain would creep back during the day. Unfortunately I couldn't bear the side effects. So as of today I'm trying a 'naturopathic approach to neuropathic pain' including sublingual B12, R-alpha lipoic acid, acetyl-carnitine and EPA/DHA (Fish oils)! I'm going to give that a go before reverting back to the 'big guns'!

worriedmomma
New Member


Date Joined Oct 2012
Total Posts : 5
   Posted 10/17/2012 1:25 PM (GMT -6)   
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!

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2021
   Posted 10/17/2012 3:01 PM (GMT -6)   
Hi Lisk
I wanted to welcome you to our cp forum. Glad you found us but sorry you are hurting so badly. It would be great if you could start a new thread to introduce yourself. That way we can give you a better welcome as your post my get lost in this thread.
I did want to chat with you as well because your story is pretty much mine and I could share what I have done an what i am looking into at the present time.
 
So I'll be watching for your into thread.
 
Take care and keep posting with us.
 
Suzane

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 3307
   Posted 10/17/2012 5:13 PM (GMT -6)   
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.

Betsey Ross
Veteran Member


Date Joined Mar 2011
Total Posts : 1056
   Posted 10/17/2012 5:42 PM (GMT -6)   
How are your teeth? Sometimes when a tooth starts to abcess it causes intense pain in the sinus area. Just a thought.

Hope you feel better soon.
Betsey
Age to a woman is like krypronite to Superman.

holydiver
Regular Member


Date Joined Jul 2012
Total Posts : 82
   Posted 12/8/2012 5:01 PM (GMT -6)   
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
Regular Member


Date Joined Jul 2012
Total Posts : 82
   Posted 12/8/2012 5:05 PM (GMT -6)   
Lisk said...
Hi Holydiver,
*words*


Wow. My heart goes out to you dealing with this kind of pain for that long, must be so awful.

I've also been through loads of different specialists, they thought I had sinusitis at first too so I had about 6 different antibiotics which did absolutely nothing, then a CT scan revealed completely clear sinuses so sinus infection is ruled out. However I have read that it is possible to have sinusitis and have a clear CT, although my doctors do not seem to think so.

I'm pretty sure my problem is neuropathic/neuralgia in nature since the drugs for nerve pain help so much. I've looked up Lyrica and it is a name for Pregabalin, which is like Gapapentin's big brother, I'm going to ask the doctor about this since I think it will be more effective

Good luck on your journey to a solution anyway!

justturned50
New Member


Date Joined Dec 2012
Total Posts : 1
   Posted 12/15/2012 4:31 AM (GMT -6)   
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.

holydiver
Regular Member


Date Joined Jul 2012
Total Posts : 82
   Posted 12/22/2012 12:47 PM (GMT -6)   
justturned50: These are the things I worry about, that it is something a bit more serious that is not being picked up on. I had a full CT of sinus are and its all clear. Are there any other scans that I should ask about, that might show something else?

I am currently on 600mg Gabapentin 3x daily which is a rather large dose and it has seemed to work the past few weeks that I have been on this dosage. The efficacy of this medication would surely confirm the neuropathic (i.e. not a physical cause) nature of the pain I would think?

After a couple of relatively pain free weeks, yesterday it came back badly along with a sudden feeling of being very feint and weak all over. Went out on the evening to my work xmas party in unimaginable pain, was extremely difficult to get through.

Problem is I've become so good at pushing through and coping with horrible pain and discomfort that it seems normal now.

Rainbowgirl
New Member


Date Joined Apr 2013
Total Posts : 1
   Posted 4/21/2013 4:33 AM (GMT -6)   
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?
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