Hi all…I have TN from a bad fall I had last May…I am remote medical coder right well I was on short term disability for quite a while… Got my pain under control… Had just maybe a few flares… I am single mom… Going through divorce…(happily I might add). I started to work again this week… And oh my gawd… My right eye is killing me my face is just awful… It is throbbing everyday…I am on 600 mg of neurontin and 150 topamax but it is not touching it and I have bacolofen that I take sometimes and klonopin… But I have to function too … I am my wits end… My mom tells me to suck it up and work…and I know I have to but this pain is horrendous…thank y’all for listening to me… I can’t cry it makes it worse…I work and read in front of a computer 8 hours a day…any ideas??
Get a TOP MVD surgeon … Two days in the hospital, two weeks or less away from computer…if insured
Right now for instant relief
have one or more of these called in to pharmacy from doctor…topical pain relievers…
http://www.livingwithtn.org/forum/topics/taking-a-poll-here-please-instant-help-for-pain-now-topical
This is to print for your mom
http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/
My TN is also from a fall 25 yrs ago when I was just 17. I use trileptal 300 three times a day with baclofen three times a day and neurotin 400 mg three times a day. You will most likely have to work up to those dosages but it is the only way I have gotten relief. I am able to work full time job in a busy law office. I’m pretty functional 90 % of the time. finding a way to release some stress will help as well. I have tried numerous combinations but this is the only thing that has worked for me. Hope you can find some relief soon.
People just don't understand that this is not a pain that we can just, "suck up." This pain is completely debilitating. How frustrating! I hope you find relief soon.
Hope you get some relief soon
I can definitely relate, I had a whiplash accident 20 years ago and TN a year now and have to work 9 hour days on a computer. My case is type 2 in the upper area so eyestrain causes anything from a bad headache to a full out migraine. I only do botox every 2 months, cant take neurontin or any of the meds since I get very ill and it works maybe 50% most of the time. So, I have to take many breaks, get up from the computer, close my eyes for 5 minutes when I can, keep the lights as dim as I can in my work area, lots of vitamin B and magnesium and as low stress as possible. Have your mom look at this forum and see what we are all going through, this isnt easy to live with by any means. If you can handle the meds then others have had some great suggestions and getting the right formula for you is crucial. I also have tried a compound pharmacy with a variety of meds to rub on my face where I have pain, sometimes it works a little, I'll take any relief I can get so it's worth it and we are still adjusting the formula. Keep writing and let us know when you find things that help, I think the key is trying as many things as you can and consistently doing many little things to keep the pain levels as low as you can, it isnt just one answer but creating a new routine in your life that works for you. And writing helps when you cant cry so keep it coming, we are all here to listen. Hope you have a better weekend:)
Karen
Sorry for all your pain. I have the same symptoms. I take 600 mg. Neurontin 3 times daily (total 1800 daily). Didn't know if 600 was your daily total or if you take that amount 3 times daily. If 600 mg is your daily total, that is a very small dose that is probably not going to be therapeutic. I got no consistent relief until I hit 1800 a day. I also use Orajel Severe Toothache cream for breakthrough pain. It helps temporarily. I still have some pain intermittently throughout the day but I can function. Best of luck to you - you are not alone!
I'm on 300 mg tegretol twice a day and I've found good relief (no pain for a month or so). However, I recently, quite reluctantly, started homeopathic treatment at my parents' request. Although the process consists of being asked seemingly irrelevant questions, the medicine is easy to take and claims to be able to cure most cases of TN. While I understand that it seems like a longshot, I recommend it to anyone with an open mind and not much to lose. It can be done :)
Kc Dancer Kc said:
Get a TOP MVD surgeon .... Two days in the hospital, two weeks or less away from computer....if insured
Right now for instant relief
have one or more of these called in to pharmacy from doctor....topical pain relievers........
http://www.livingwithtn.org/forum/topics/taking-a-poll-here-please-...
This is to print for your mom
http://www.butyoudontlooksick.com/wpress/articles/written-by-christ...
I suggest you read up more on TN (or have you been officially diagnosed?) and see if you have the range of other symptoms that go along with TN. It is an unbearable pain that you can't just "suck up" so don't feel bad; Have you seen a neurosurgeon about surgery (MVD) ? It may be a solution for you.
so sorry for all your pain!! this is such a horrible condition.
your story sounds familiar about the throbbing and eye pain and trying to work, i try to never ever dry or my pain goes off the chart. so sad not to have that release when you could use a good cry once in a while!. ask your mom if she has ever had a brain freeze pain like what you get from eating something too cold etc? then tell her imagine that and constant burning and pounding! i hate when people think your arent being strong enough this is a really ugly pain..you dont owe any one explanations for what you deal with i just tell people to keep praying for me.
here are some things that help me.....
i take low does of norco (narcotic with some tylenol in it) and ibuprophen with my neurontin. i take 900 mg of neurotin a day and my pain is at maint levels so obviously you are probably not on enough medication but i get the fact you have to function.
so i started botox injections last year and it tightens the skin but relaxes the muscle underneath which makes sense because when you nerve is acting up it pulls muscle tight due to pain....so you might want to try it. i go to a pain spec for those and it really helps with some of the pain with out the side effect of brain fog.
i noticed that when i squinted for bright light, or if wind blows across your face whatever reason it was triggering my eye pain. so i wear sunglasses indoors sometimes and outdoors all the time to relax eye muscle. laying quiet always helps the throbbing and ibuprofen the inflammation. for some reason sudaphed over the counter helped when i took it with tylenol of course i thought i had sinus pain but it took some of the pain away. you just have to follow directions and not take more than recommended.
there is a gel called bio freeze that i rub into temple it doesnt burn like the caspia creams out there you can get it on line i buy mine from ithaca sports.just be careful to avoid eyes and a little will do it. and wash your hands so not to get it into eyes. i rub down my neck side of head.
make sure your glasses arent causing eye strain and your posture is good at computer as far as your neck is concerned. take breaks when you can.
also i read on this site about magnesium and calcium supplements that help with nerve pain. just started taking that this week.
this is such a process but i hope some of this helps. if your pain is atypical mvd won't help per my neurosurgeon. but i did have the motor cortex surgery and this has helped me alot!
blessings for pain free days for you!
Is it possible that how you sit or look at your computer affects your headaches? I started getting daily headaches in the afternoon, and realized I was looking through the lower part of my trifocals, which caused me to tip my head back. I went to my optometrist and got a prescription specific to the distance needed for computer work. It worked wonders.
I had been on Tegretol at one point and then my neurologist decided to switch me to gralisse 600 mg at night and I was doing fine till I started to work again… My optic nerve in right eye is damaged … This has happened since my face met the concrete last may… I am not having headaches per say it just feels like my face and eye are going to explode any minute when I am the computer…I have an appt with my neurologist on Tuesday…and I am off of any computer until Monday hopefully that will help! Thanks for all of your input guys!!!
Most meds at a dose that will do you any good for the pain are likely to stop you being able to function properly with work, I would think, as they are such heavy-duty meds.
I have had some luck using these techniques, and I haven't done a proper course in it... I'm going to ask the occupational therapist at the pain clinic to help me further: http://www.bangor.ac.uk/mindfulness/about.php.en and http://www.breathworks-mindfulness.org.uk/meet-vidyamala
I know that bending my head forward at all to read, for example, can trigger an attack... you may need to raise your computer so that you don't have to bend at all. Also I find the side-to-side motion of my eyes when I'm reading triggers attacks in the upper branch of the trigeminal nerve. Sounds like this could be happening with you. Try enlarging your computer screen/fonts etc so that it's big enough that you don't need to move your eyes too much.
Is there a Pain Clinic near you your doctor can refer you to. Pain Clinics will have experts who can help with pain management techniques.
Hope this helps. Go well, and keep strong.
SnoopySnoos1019 said:
I had been on Tegretol at one point and then my neurologist decided to switch me to gralisse 600 mg at night and I was doing fine till I started to work again... My optic nerve in right eye is damaged ... This has happened since my face met the concrete last may... I am not having headaches per say it just feels like my face and eye are going to explode any minute when I am the computer...I have an appt with my neurologist on Tuesday...and I am off of any computer until Monday hopefully that will help! Thanks for all of your input guys!!!!
Your pain sounds just like mine! Face plant into solid wall- almost 4 years ago. Seen over 50+ Specialists until I finally found the right 1 for me. First GP I saw wouldnt refer me to a Neuro. First Neuro I saw didnt know what TN was! Tried all the drugs, my life has become none existent. Was living a full life with lots of family & friends, sports, travel & professional business woman. Now I have a full time carer, I cant drive, cant cook, cant clean my house - hardly ever leave my house unless for Dr visits. Wear my sunglasses in side when pain is bad, always wear outside, even within the shopping centre or Dr surgery.
So for me what has turned my life around in the right direction is seeing a Neuro Chiro. Google them, cause they are in the US far more than in my country! Sent me for a QEEG - brain scan & it showed up the nerve response to the brain from the damaged nerves. FINALLY I have the proof for all the people in my life that have told me to 'get over it'. Its a slow journey, but I do believe Im better than I was 6 months ago. I had to move away from my family to be closer to the right treaters. So it has been more lonely, but the extra quiet has helped with my improvement. No more than 30 mins at a time on computer - wear my sunglasses while on the computer if Im in pain. My Neuro Chiro has said my system is currently too damaged to be able to handle the Vitamins recommended by TN - but I have met many at my local TNA support group who have had success with the right dose of Vit D. Dont give up, research online to find the right Dr's & NEVER EVER GIVE UP LOOKING FOR ANSWERS. You deserve to have a life as free of pain as possible. I now have hope that will be true for me too!
My neurologist added lyrica 75 mg twice a day …anybody else try this and it did any good??
Lyrica didn’t help at all. I also had to switch from tegretol to trileptal. I’m a nurse and also can’t function AND find the right combination of drugs. If anyone can add to this please do. I’m thinking of severing the nerve. Just any relief!!