I've had diagnosed TN for ten years but after a recent car accident (a few months ago now) everything has gotten so much worse. It started out with just more twinges than usual but within the past month things have hit rock bottom. I get so many twinges daily it is becoming hard to function. Especially in a college environment. For some reason I actually fainted twice within two days at one point. Before I passed out my eyelid would snap shut and hurt like a TN attack and then I would drop (and I don't take any medications for my TN so thats not why I fainted) No more fainting spells have happened again so far but everything sets off my TN now. The slightest turn of my head, wearing my hair down, even brushing my teeth. Sometime attacks just come out of nowhere. I try to keep it hidden but lately all I want to do is stay in my dorm and lie in bed all day. Has anyone else had problems with a sudden and extreme worsening of their symptoms? DO you have any suggestions for helping with the pain or ways to try and avoid attacks? I have an appointment with my neurosurgeon (whom I haven't actually seen in ten years because my parents didn't want me on medications) in a week but any suggestions that can help tide me over until then are greatly appreciated.
Pleasssse call the nurse at whatever doc… doc at school , doc at general doc…or even the neuro you are gonna see…this is not a MED, topical cream, like for burns etc…but kills TN PAIN
ask them to call pharmacy into you for LIDOCAINE CREM
if you can ask for a script also for stronger but
more money and more relief is lidocream patches for face
Works for 12 hours ON the pain immediate, but cost more
I called my doctor and she said she couldn't prescribe it without the permission of my neurologist, and then my neurologist said they didn't want to give me any until after I saw them next week. I just don't know what to do anymore.
Kc Dancer Kc said:
Pleasssse call the nurse at whatever doc..... doc at school , doc at general doc....or even the neuro you are gonna see....this is not a MED,,, topical cream, like for burns etc....but kills TN PAIN
ask them to call pharmacy into you for LIDOCAINE CREM
if you can ask for a script also for stronger but
more money and more relief is lidocream patches for face
Works for 12 hours ON the pain immediate, but cost more
I was in a car accident whpllash and concussion. Really caused alot of neck face jaw pain and migraine 24 hours a day for months. Diagnosed with Occipital neuralgia from the accident. Causes shooting pains in neck and behind ears and over the top of head.Caused by tightening neck muscles trapping nerves.
Temporary relief with occipital and trigeminal nerve blocks. 2 times worked. given 2 months apart. Lidocaine and cortisone in the back of the head.
My back of hed hurt so much I could not lie in bed on my back with pressure on head.
My next step was a chiropracter who is adjusting my back neck and jaw. Also doing deep muscle therapy called Graston tech. It breaks up scar tissue.
GO see someone who can do nerve blocks neurologist who specializes in migraines can do it first then get to someone who can do Graston ( chiropracter) and adjust you r neck..
Go to see someone who touchs you...... not just talks to you and gives out pills.
Dear Pixelkam: I cannot believe you have tolerated TN pain without meds! Yes, the sudden and extreme worsening of TN symptoms is a common event. I've had TN for 8 years (mine 1st arose at age 54 and I am now 62). First arose suddenly and severely, after 2 1/2 years went into remission, then this spring started twinging, then rapidly progressed to raging constant severe pain so that I could not even blink my eyelid. Got so bad I was seriously considering surgery so went to the Mayo Clinic in Rochester, MN. They gave good advice on med protocols. Stabilized on meds for about a month. Now having bad breakthrough pain. So this week will be consulting again with the neurologist. Suggest you immediately go cold turkey on all CAFFEINE (colas, teas, coffee, chocolates, etc) as these are CNS stimulants and will irritate the trigeminal nerve. Also avoid chewing, long conversations, any activities that are physically exhausting. Avoid aspartame (artificial sweetener, diet drinks, etc). Try to avoid any stress and excitement, get all the rest you can. Meditate or pray, whichever is your choice. Do whatever you can to stay calm, quiet, positive until your appointment. I will be praying for you. Let us know how your appointment goes.
Thank you for the tips. I've been going to the gym on campus almost everyday but I will stop for a few days and see if that helps. Definitely no more gum for now on. I'll also cut soda cold turkey and drink only water to see if that helps as well. Hopefully I will finnish my assignments early tonight and get some rest. Hopefully my fainting spells will stop thanks to these measures also. THank you so much
VAgirl said:
Dear Pixelkam: I cannot believe you have tolerated TN pain without meds! Yes, the sudden and extreme worsening of TN symptoms is a common event. I've had TN for 8 years (mine 1st arose at age 54 and I am now 62). First arose suddenly and severely, after 2 1/2 years went into remission, then this spring started twinging, then rapidly progressed to raging constant severe pain so that I could not even blink my eyelid. Got so bad I was seriously considering surgery so went to the Mayo Clinic in Rochester, MN. They gave good advice on med protocols. Stabilized on meds for about a month. Now having bad breakthrough pain. So this week will be consulting again with the neurologist. Suggest you immediately go cold turkey on all CAFFEINE (colas, teas, coffee, chocolates, etc) as these are CNS stimulants and will irritate the trigeminal nerve. Also avoid chewing, long conversations, any activities that are physically exhausting. Avoid aspartame (artificial sweetener, diet drinks, etc). Try to avoid any stress and excitement, get all the rest you can. Meditate or pray, whichever is your choice. Do whatever you can to stay calm, quiet, positive until your appointment. I will be praying for you. Let us know how your appointment goes.
I was in a car accident whpllash and concussion. Really caused alot of neck face jaw pain and migraine 24 hours a day for months. Diagnosed with Occipital neuralgia from the accident. Causes shooting pains in neck and behind ears and over the top of head.Caused by tightening neck muscles trapping nerves.
Temporary relief with occipital and trigeminal nerve blocks. 2 times worked. given 2 months apart. Lidocaine and cortisone in the back of the head.
My back of hed hurt so much I could not lie in bed on my back with pressure on head.
My next step was a chiropracter who is adjusting my back neck and jaw. Also doing deep muscle therapy called Graston tech. It breaks up scar tissue.
GO see someone who can do nerve blocks neurologist who specializes in migraines can do it first then get to someone who can do Graston ( chiropracter) and adjust you r neck..
Go to see someone who touchs you...... not just talks to you and gives out pills.
I agree.Stopping the carbonated beverages and coffee helped me tremendously.As a lifetime coffee drinker it wasn't easy,but it made a noticable difference for sure.Tea doesn't effect me the same.I heard on here it is the acidity not the caffeine.I doubt you have blood pressure issues,but i took an extra pill to lower mine and it helped also.Good luck and try to relax as much as possible.
VAgirl said:
Dear Pixelkam: I cannot believe you have tolerated TN pain without meds! Yes, the sudden and extreme worsening of TN symptoms is a common event. I've had TN for 8 years (mine 1st arose at age 54 and I am now 62). First arose suddenly and severely, after 2 1/2 years went into remission, then this spring started twinging, then rapidly progressed to raging constant severe pain so that I could not even blink my eyelid. Got so bad I was seriously considering surgery so went to the Mayo Clinic in Rochester, MN. They gave good advice on med protocols. Stabilized on meds for about a month. Now having bad breakthrough pain. So this week will be consulting again with the neurologist. Suggest you immediately go cold turkey on all CAFFEINE (colas, teas, coffee, chocolates, etc) as these are CNS stimulants and will irritate the trigeminal nerve. Also avoid chewing, long conversations, any activities that are physically exhausting. Avoid aspartame (artificial sweetener, diet drinks, etc). Try to avoid any stress and excitement, get all the rest you can. Meditate or pray, whichever is your choice. Do whatever you can to stay calm, quiet, positive until your appointment. I will be praying for you. Let us know how your appointment goes.
My TN only acted up once every couple of months...I didn't even know what it was. When I had my daughter in April 2012 the epidural didn't work and I have a very hard labor. My TN went CRAZY!!!! I started getting horrible attacks and maxed out on Tegretol and still having attacks...this was on my right side. Then in October 2012 TN started on my left side. The left side had more triggers and bothered me on a daily basis. I have MVD on the left side in January 2013. I was pain free on both sides for 7 months. Just within the last 3 weeks my TN has returned on the left side. I was taking 400mg of Tegretol, but 3 days ago I had to increase to 600mg because they pain is already starting to increase. I bought an over the counter lidocaine cream (from Amazon) 5%, it dulls the pain but doesn't take it away. My doctor didn't seem to want to prescribe me any yet since i could increase me medication.
Everyone is different we know this, but for your initial symptoms of whiplash, you simply must get after your body and stretch…and keep stretching for the rest of your life. Put you’re effort ino the other parts of your body not to just focus on our TN issues. We are all here to share…right? I too was Ina terrible auto accident which could have cost my life, T-Boned drivers side @ 45 mph and she never hit the brakes. During my rehab which was over two years I focused on the stuff below my brain…simple to say but focused I was, still taking my meds every day as I was before but have been feeling wonderful since, knowing that in an instant it could come back with a vengeance. Was my accident a God sent…who knows but certainly a healthier response to my over all health with a better focus on the totality of ME.
BEST OF LUCK, know go to the internet and get some great exercises that you do easily at home whenever you wish and stretch stretch stretch.
I will be 64 in a couple of days, but have also lost over 18 lbs during the process as well. I was never heavy bur now better toned in along long time.
PT will assist if you have the insurance or money, but you do not need them, because they will teach the same exercises that you can readily find online. If there is a ligament issue etc and need to get an MRI, (I had 8 along the way) it will assist you to the evaluation process to focus again on the subset of excercisesto do.
Be well…!