ANA Discussion Forum
Post-Treatment => Headaches => Topic started by: tenai98 on July 12, 2010, 06:32:20 pm
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14 months post op and I start to get headaches and pain behind my AN eye...More numbness and aches with upper jaw/cheek...History is dx with 1.4 cm..at time of surgery (translab) it was 2.0cm...residual tumor in order to preserve facial nerve which is tangled in the tumor is 1.6cm...I'm guess the tumor has either grown and is putting pressure on the facial or somewhat has moved and is again putting pressure on facial nerve...Next MRI is aug. 9th/10...My GP wants me to see if I can get one earlier so I'll be calling my oncologist tomorrow to see what he can do...GP has me on tylenol 3X/day...it takes some of the edge off but not doing anything really...This is leaving me exhausted...I'm normally awake and out of bed long before 7am...Now I find myself dragging myself out of bed...I'm waking up at night two to three sometimes 4 times a night....Not sure if its the headaches waking me or the stress of what is now happening...I'm ready for bed come 8pm..so unlike me....wonkyhead is back and my balance is off...staggering more and bumping into more walls..ughhh...I guess I have to face radiation sooner than I was hoping...which is fine with me but with the new symptons I'm lost...Where does one start looking for relief....keep in mind that is just a notch above low grade aches with flare ups to pain several times a day...Tylenol then what? I've heard of lyrica...what are the side affects?? the pain is not only in my forehead but at back of neck as well...Any input will be appreciated.
JO
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Jo,
sorry you are having increased symptoms. Sometimes issues may appear and disappear randomly. Numbness and aches are usually associated with the trigeminal nerve, not the facial nerve. I find Tylenol completely useless. Have you tried ibuprofen? Whenever I have a flare up I take a double dose (2x200 mgs) and it always takes the edge off.
I do think that it is a good idea though to get all this checked out - thankfully your scheduled MRI isn't that far off, even if you don't get an earlier one, it should give you some answers.
Marianna
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Me too on the ibuprophen,JO. I just got the go ahead today to switch back to advil. I'd been off it for 14 days prior to surgery. I have had so much more relief today with less side effects. You could try it? I'm really sorry you're going through all this...
Nikki
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I have to be careful with what meds I take due to being on high blood pressure meds...
JO
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I too am sorry that you're symptoms have increased, but you will be in for the MRI in just a few weeks and hopefully then you can get some answers. Are you working with your neuro regarding the headaches? You might want to get a referall to a headache specialist (usually a neurologist who specializes in headaches). As a fellow "headacher" I feel your pain. It is draining to have the pain everyday and the pain cycle needs to be broken.
I'm not a Dr (obviously), but I have been through many meds, nortryptaline has been great at night, made me feel very tired in the beginning, but it helps with the nerve pain and lets me sleep better. The other med I'm taking is indocin/indomethecin, this is a non-steroidal anti-inflamatory and helps somewhat, more when I first started taking it. This medication is very hard on the body (especially stomach) and I'm taking the maximum dose, so we will be changing meds soon. We're going to try Topomax first to see if that helps, but if not then gabapentin/neurontin. I have heard of Lyrca and I know there are a couple people taking it or who have taken it. Soundy is the one that comes to mind and I think Scarlett as well?
My advice for the neck pain is ice, and use it multiple times a day, especially at night before bed. Also look for some of Capt Deb's threads on headaches as she is the resident headache expert.
Take care and keep us posted regarding your MRI and symptoms.
Liz
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Watch it with the Tylenol--it's a major culprit for rebound headaches. I'd ask the doc about putting you on Neurontin--generic form is gabapentin. Works pretty good for many of us. I'm back on it myself for another issue, but I'm staying on it for a while--I don't seem to have side effects and my doc told me the toxic effects are quite minor if I take it with 1500 mgs of calcium a day. Also Imitrex for the flare ups.
Hugs to ya!
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/mz_0101_10034339657.gif)
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Jo,
So sorry to read you are going through all the headache and facial pain crap, NOT NICE!! As you know, I know this first hand what you are going through. Ontario is being bombarded with 3 lower pressure systems this week and for me it hasn't been good. All the other suffers have more or less said all there is to say. I hope your AN is stable, but the only way to know is to have the MRI. Get on the phone, beg, plead, barter, as I said in a previous post tonight, squeaky wheel gets the grease.
Good Luck,
Anne Marie
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My GP has sent in an urgent request for an earlier MRI...so will see...maybe it is the weather! who knows..I get these flashes of pain around the eye (an side)..not fun...makes me jump...headaches are low grade, but I'm just not use to having them so I notice them more...my son is getting married in two weeks and I'm not looking forward to all that noise associated with a reception...I can take advil but only when necessary as it can spike up my blood pressure....Just got off phone with Oncologist. He is going to try and get an earlier date for MRI . Now just got to wait for him to call back
JO
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Sorry to hear you are having these new issues ... I thought mine were over when I got on Lyrica ... it worked great with me and allowed me to function ... was put on neurontin in early June when my doctor could no longer get it for me by way of samples ... I just can't afford Lyrica and my insurance won't pay for it ...
now neurontin has stopped working though it started out helping ... spent most of the weekend trying to knock out a headache that put me in bed trying not to move ... got up from time to time because laying around makes me stiff
got paper work in to Pfizer to try to get in their program to pay for lyrica ... right now I have a return of headaches and facial issues ...
not much help I guess but I can understand what you are going through ... right now my face is numb , no headache and ringing from tinnitus in deaf ear is so loud that it is getting on my nerves ... we have had thunderstorms for the past few days and I get more wonky headed swaggering issues when they come charging through ... I need to pad my walls