Hi Everyone and thank you for adding me to your group. I’m not 100% sure I’m in the right place but like most of you, I’m seeking answers to constant pain I’ve had since having sinus surgery in 2008. I was recently diagnosed with supraorbital neuralgia. It causes me to have a daily headache above my eyebrow and down the side of my nose. I don’t have the sharp stabbing pain that many of you suffer with. Mine is more of a dull ache that gets progressively worse throughout the day. I have always had hormonal migraines so of course, that is the bandwagon that most doctors jump on first. However, this headache I have now does not respond to any triptans or typical medications that have been effective in the past for my migraine pain. After my sinus surgery I woke up with the worst headache but different than my migraines. I didn’t think too much about it because I had just had surgery. Well, it never went away. I have seen too many neurologists to count and have have even had one or two (working together) think I had pseudo tumor cerebri which I totally don’t fit the profile for. All along I kept saying, “I think it’s this nerve right here (points to spot on head that hurts) that’s giving me trouble”. Can’t we just get rid of that? Lots of well, maybes and here, try this med. Nothing has worked. I’m still working full time staring at a computer all day and I finally hit my breaking point recently. I went to see my gp and cried in her office about my pain and lack of life (I’m a grandma of 6 that I moved to be close to but hardly see). She referred me to yet another neuro that I will see Oct. 16th and put me on Welbutrin. In the meantime, I sought out another neuro who is a headache specialist at Ocshner who could see me sooner and she put me on short term disability for a bit. She also recommended the Cefaly and lidocaine patches. I can honestly say I hate the Cefaly and I’m sitting here with a lidocaine patch on my forehead hoping it doesn’t pull out my eyebrow hairs when I remove it lol. Anyway, I’m desperate because I need my job for insurance purposes. Otherwise I would quit because my husband’s job can provide if we want to live a no frills life but it can’t handle the insurance and medical costs of my disease. Anyway, my latest endeavor has been to see if anyone has done radio frequency ablation and if that helped. Also, there is a doctor with Ocshner who is doing a procedure that freezes the nerve which has shown some good pain relief results with people with knee pain. I plan to continue with the Cefaly and lidocaine until my appointment on Oct. 16th and I want to see what this other neuro has to say about RFA. So, that’s my journey so far. As with everyone, lots of pain, frustration, and more frustration with trying to find the right doctor to partner with to make like better. Oh, and how many of you have just given up on neuros and gone straight to pain management? I feel like I’ve tried most of what they can offer (anti-seizure meds, botox, nerve blocks, etc.). At what point do you say, “I just want some relief and go to pain management”. Sorry this is so long. I hope I can find some answers and support with this group.
Cheryle, I just wanted to say hello. I didn’t want you to think no one was reading your posts! Unfortunately I don’t know anything about either supraorbital nueralgia or RFA.
I do, however, have had what used to be called neurologically complicated migraines for 30 years, I so understand your frustration with doctors jumping on the bandwagon of migraines! I had to fight the other way, because I’m a woman for years I had to fight to find a doctor who didn’t tell me my migraines were hormonal. Very frustrating.
One thing that I’ve learned over the past few years is that gabapentin seems to have an affinity for nerve pain. I started taking it to combat nerve pain in my arm caused by internal lymph edema swelling caused by having my shoulder reconstructed. Wonders of wonders, I noticed a difference in my ATN as well. It also tends to work as a “booster” for other neurological meds like depakote and lamictal and lyrica. I was actually able to lower my does of lamictal and get better response from it once I was stable on a dose of gabapentin. Might be something to discuss with the next doctor.
I started using lidocaine patch about 18 months ago and I love-love-love it. My fingers are crossed that it brings you some relief.
Thank you so much for responding to me. That is so very kind of you. Sometimes we feel so alone in this journey. I currently take gabapenten (600mg 3x day) but I’ve been on it for awhile and maybe it’s losing its effectiveness. The last neuro had Depakote and Lamictal as the next on the list to try. So you take the Lamictal and gabapenten together and get good results? Hmmm, maybe something to suggest to the doctor. Did you have any bad side effects from the Lamictal? For some reason that drug scares me. I’ve had some bad reactions from some preventatives like Elavil.
I don’t think I’m going to stick with this Ochsner doctor after my short term disability ends. Yesterday I sent her an email through their EMR (electronic medical record for those who don’t know what that it) and told her the Cefaly was giving me more pain and the lidocaine wasn’t helping. I asked if we should move on to the next treatment of either Depakote or Lamictal. Her nurse sent me an email asking that I shorten my email to the doctor or make an appointment to discuss. I was very put off by this. I have used the “contact your doctor” portion of the EMR with all of my doctors and I always try to be concise but also convey what is going on. I have yet to have one tell me to “make it quick” so to speak. I have to stay with her at least through my next appt. on Nov. 1st because she completed all of my FMLA paperwork. However, I still have the appointment on Oct. 16th with the neuro my gp recommended so all hope is not lost.
As for migraines, I did suffer with hormonal migraines and Imitrex was a God send. I do still get them occasionally but the Imitrex doesn’t work anymore nor do any other triptans. But, I can handle those episodic headaches. It’s not like this daily pain that just wears you down. It does get complicated when you already have migraines but now you have this other thing going on that is completely separate. Ugh, so frustrating. Anyway, I digress from the issue at hand which is nerve pain. Again, thank you for responding to me and making me feel a little less alone in this. I will give the lidocaine patch another try and my fingers are crossed. Hope you have a great day!!
I had outstanding success with lamictal for 7 years, I would say it even put me in remission a majority of the time. I was taking the smallest avail dose (don’t remember what it was) 2x a day, once in the morning and once at night. I didn’t have any side effects of note with it. It did make my ears ring but not to an unlivable level.
Now, I started having more problems about 18 months ago and upped the dose by 50% because my jaw joint was starting to “pop” when my ATN flared up a bit. That proved to be my personal stopping point, I went into side effects (leg cramps mostly, but dizzy too, and the ringing in my ears got really loud) and had to eventually come off it completely.
But while I was on the lower dose it was wonderful and really, really helped. I’m sorry I ever messed with it! I should have left well enough alone!
Now, for your migraines, have you tried the NARtriptans? Amerge is the brand name of one but it’s available as generic. Naramig is the brand name of another that combines Naratriptan and hydrochloride. They both have a slower, longer release than SUMAtriptans and may work where the sumatriptans didn’t. Sumatriptans don’t work for me but nartriptans do. Just something you might want to add to your list of things to talk about when you to the doctor next week.
Hello from a fellow sufferer in coastal AL, your neighbor! I find that hurricanes, and we just had one, make the pain worse. I am at work, so I can’t talk for a long time… but I will get back to you later. PLEASE keep me informed about what is going on at Ocshners. I want surgery soon, and am interested in what is going on there, as it is not far.
Blessings and pain relief to you!
Well, that does give me some hope about Lamictal. Everything is such a balancing act when it comes to medications. As for triptans, I have tried them all. Even though I didn’t overuse them I suppose being on them for so long has caused me to build up a tolerance to them.
I hope you find something that helps you now that Lamictal is out of the picture for you.
Yes, hurricanes are awful for head pain. I’m ready for this hurricane season to be over! I’ll keep you posted on Ocshner. One doctor I’ve really liked and one I’m on the fence about. We shall see.
Right now I’m taking a combo of depakote and gabapentin and have been very happy with it now that I have it balance correctly, it’s helping with both my migraines and my ATN. I’m wildly sensitive to meds so I’m only taking 200mg a gabapentin and 250mg of depakote a day but I feel like it’s really, really helping. I was taking 300mg of gabapentin and 500mg of depakote they both can make your ears ring. When my ears started ringing so loudly I found myself turning up the TV it was time to adjust the dose. Like you said, it’s all about balance. Which is annoying, but oh well.
I wish I had another idea for you on migraines. Since mine aren’t hormonal I don’t really have other tricks for you. You might want to check out this: http://headacheandmigrainesummit.com the summit is over for 2017 but the info is still available.
I’m glad that you have found something that is working for you. Depakote is the other med that the neuro suggested. Depakote and Lamictal were literally the only two meds I haven’t yet tried. Maybe one will work. Right now I’m frustrated because I got an email from the company that processes our FMLA approvals saying that my neuro didn’t complete the medical certification correctly (date range, reason for leave, and forgot to sign). I really, really do not like this lady right now. I’ve been off work since the middle of September and if she doesn’t complete the paperwork correctly I may not be paid for the leave and it will be unprotected. So frustrating. I’ve only seen her once. She was recommended to me by another neuro that I was seeing about freezing these nerves. I really, really like him but he felt like he wanted me to see a “headache specialist” but she has been absolutely no help whatsoever. It just seems never ending when trying to find the appropriate care. I’m hoping that the neuro I’m seeing on Oct. 16th will have more answers. The problem is that this paperwork has to be resubmitted within 7 days so I am kind of stuck with this lady for the moment. Here’s hoping that whatever she puts on the paperwork this time will get it processed and approved. Thankfully, I am not a single income but it does put a strain on the finances especially with the holidays coming up. Thank you for listening and responding to me. I feel like if I could get this nerve pain under control I can deal with the migraines. I’ve been living with them my whole adult life but the supraorbital pain has only been since the sinus surgery in 2008 (which is still a long time but it seems to be getting increasingly worse due to lack of treatment). Anyway, it helps having a place to discuss this problem because most people just assume that you’re having “another migraine” and it’s complicated to explain, “no, I have nerve damage and it’s a different kind of headache but I do still get migraines too”. I have been fortunate to have a nice work environment but the work itself requires me to be on a computer for 8-9 hours a day which has become increasingly more difficult. I feel like I am letting them all down and now if I don’t get approved for FMLA I feel fraudulent. I don’t think that anyone I work with will think that of me but I can’t help but think it of myself. I know I am in pain but I handle it well and hide it most of the time. Maybe I should be more expressive but I just don’t enjoy playing on people’s sympathy that way. I want to put my best foot forward even when I am really in pain. I think we are all mostly that way which is why our disease is so “invisible”. Well, I have just really run on in this post. I apologize for that and thank you again for listening. I hope you have a great day today.
In terms of FMLA, I have it for intermittent leave for migraines. I have found it works much better when I fill it all out and give it to the doctor to review and sign. That way nothing gets missed, heck I even date it and put one of those arrow post its on the signature line!
My job is also 100% computer work. On migraine days I have a pair of amber night driving glasses I wear all day. I think it really helps. Sometimes it helps with the ATN when my eye is caught up in it. It’s also a nice passive signal to coworkers that I’m having a bad day.
If you wear prescription glasses zennioptical.com has prescription glasses from $6.95 which makes tinted lens very affordable.
You are not going to believe this, but you have exactly what I have! Same pain, same location. I have had this for 6.5 years and have literally tried everything. I can’t say that I am in a great place even now, but I would love to talk with you to give you suggestions. I have had an MVD and I have a facial stimulator implanted. Find me on Facebook (Lora Smith Romney) and message me. If you don’t do Facebook, let me know and we can find some way to connect. There are so few out there like us. I keep in close touch with a few (one in Rhode Island, and one in Israel). I am sure we can all help and support each other. I am excited to meet another person like me. Oh the stories I can tell you about how I went blue in the face trying to tell doctors that this pain was NOT a migraine. I am finally with a pain doctor and headache doctor who have confirmed this diagnosis. My pain started over my left eyebrow. It is now over both eyebrows on my forehead, down my nose and on my cheekbones. My dominant pain side is my left. Talk soon!
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Thank you! I will keep this in mind.
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haha! I have some computer glasses from eyebuydirect with a blue 50% tint for when I am more light sensitive than usual. my only problem is that the arms put pressure on the side of my face that just creates more pain for me, but at least I can see. I wind up sitting there with the arm outside of my ear looking ridiculous. you win some you lose some, amirite?
I am in the same boat as you and cheryle. thank goodness cheryle has given me a name for this because my neurologists have never mentioned supraorbital neuralgia. now I have something I can maybe work with. my neurologist is referring me to a neurosurgeon that I can luckily get in to see at the end of the month. although like many of you, I’ve done tons of research and read your stories, so I just know I’m gonna wind up meeting with the surgeon and we’re gonna look at each other and say, yo bro, you know surgery doesn’t work on this stuff. however, most people who get surgery don’t seem to have supraorbital neuralgia. I have looked at some surgery videos on youtube and I am thinking, well maybe it could work? which is what I’ve been telling doctors all along my trail: hey, I don’t want you to keep me on a 72 hour detention for asking this, but can’t we just cut my eyebrow open and see what’s in there? lol
I wanted to let you know that I did have MVD surgery on my left side. My pain got so bad about 2 years, that I was literally in the headache clinic weekly getting emergency pain control. This went on for six months until the doctors decided that I needed an immediate MVD. They did see a compression on my left side. When they got in the surgery, they did find a large compression, and strangely enough, the nerve itself looked really healthy. I did really well with the surgery, and it did decrease my pain for a little while, but it has not been my solution. I am glad I did it because I have never dipped into the depths of hell like I did for the six months before the surgery. I still struggle every single day with terrible pain and pressure in my entire sinus region. The pain has now spread from over my left eyebrow to my entire forehead, bridge of nose, sides of nose and cheekbones. I have tried every imaginable medication to help and either they did not help or the relief did not last. I am now on Oxycodone and I am taking Kratom as well. Kratom has been a god-send for me since I am only allowed a limited amount of Oxy. The Oxy didn’t help at all before my MVD, but now it does bring the pain down a bit. The Kratom helps as much as the Oxy, except when I am in a severe flare, and nothing much really helps. I am not sure if I shared before that I even have a stimulator implant in my face. It has not helped at all unfortunately.
About glasses, I have ATN on my left side and the pressure across my temple makes my whole cheek hurt, so I took the Left arm of both my regular, and sunglasses (I just took out the screw in the hinge.) I replaced them with a 1/2 inch glass bead on a wire which I wrapped through the hinge tight enough that it doesn’t swing or move. The bead works as a pretty good counter balance and helps the glasses stay (more) level. My glasses will fall off if I tilt my head too far down, like “looking at the ground” down. But over all they stay on pretty well and only cause minor pain flares in my nose. I just thought it might be worth trying.
Dear Cajun friend,
What is going on? I have not heard from you in awhile. Please let me know how you are. Send me a private e-mail if you want.