Dont know any more

Having a really bad day..I just wish i could be pain free just one day..I hate this..Im getting so tired of being strong i think TN is finally winning.No one really understands the pain TN causes someone.God help me and pls get rid of this pain...

Hi Marina,

I'm so sorry you're experiencing such a bad flare up of TN. Believe me, my thoughts and prayers are with you. Feel free to message me anytime. I've been there and can empathize with you.

Warmly,

Vicki

Marina, I don't of course have a magic bullet but I can offer my empathy and hope you do feel better very soon. We understand all too well and it is horrid when an attack lingers like the one you are having. Hoping for better things for you very soon, Jackie

Marina...I hope it subsides soon. Let us know when your feeling better.Will be thinking of you...K

Marina ,I hope you feel better soon ,do understand ,I am having a bad few days ,and you just get to a point when it is hard to be upbeat anymore ,sending love xxxx

oh darling, I know exactly how you feel....Hopeless, alone, tired, restless and in non stop agony. But try to remember that there ARE good days. I know exactly how you feel as do all of us. I find that trying to sleep is the only thing I can do. Ask your doctor for some sleeping pills to get you through the worst of it.

In the mean time have you tried applying either heat or cold to your face? Sometimes it can sooth.

Please reply to us all and let us know how you are, i really am thinking of you sweetheart and hoping for the pain to leave you soon. Keep on going hun.

Mica xxx

Thank you..

Vicki Dvorak said:

Hi Marina,

I'm so sorry you're experiencing such a bad flare up of TN. Believe me, my thoughts and prayers are with you. Feel free to message me anytime. I've been there and can empathize with you.

Warmly,

Vicki

I cried myself to sleep last night..and will today isnt any better.Tried to get into my doctor but cant get in umtil the 23.As for the nero doc i see i also cant get into him..All i was told was go to the ER.Ya they sure do show they care.I dont know when the last time i felted ok.I am waiting to get the MVD procedure done but who knows when ill get that call..(could be up to a yr)I just dont know how to deal with this pain until then.
Adding heat dont help it and the cold makes it worst..I dont know i just dont know .

So sorry about all this, the 23rd is just unacceptable, shocking! I complain if I cannot see a DR the same day. I think we are very lucky here. You say ER is not good! I feel for you and do wish I could make it better somehow. Jackie

Oh Marina, so sorry. :( My heart goes out to you. I tend to have all of my flare ups of TN on Saturdays when there are no doctors available and the only option is the ER. I know it's not ideal, but if you have to, just go to the ER this time to get immediate relief. The only thing that helps me is Solumedrol. Even Morphine doesn't help. You are going to make it through this, Marina. Remember that you're not alone and that we're thinking of you. ~ Vicki

Hi Marina, sorry to hear that they are putting you on hold like that :(

Yeah, having to wait till the 23rd is no good. Sometimes you just need to barge in there and not leave till the doc sees you!

A couple years ago, when the doctor was primarily giving me Oxycodone (before we knew it was ATN, though at that point was beginning to suspect it wasn't just sinus trouble given that 10mg of Oxycodone wasn't doing much of anything) I was having a horrible non-stop 4-5 day session of extreme pain (I have bouts of pain which are much more severe than my "normal" daily pain). All I could do is take the meds and force myself to sleep because being conscious was just relentless pain and I was running out of meds right before the long new years eve weekend. So, I literally just went down to his office about an hour before they closed and was pretty much begging, not necessarily for pills, because honestly they weren't doing much of anything but just SOMETHING to help since I felt like I was losing my mind.

He ended up seeing me, thankfully, and luckily a few days later I was feeling better. Sometimes the best approach is to be polite but extremely insistent :) and a lot of times doctors just don't have the heart to "throw someone out of the waiting room" so they find a way to make time.

Marina...I am so very sorry for the pain you are going through. Only those of us who have TN can ever truly understand how horrific it is. I will pray for you to find some relief very soon. You said it can be up to a year before you get the call for your MVD. Why is that? Is the surgeon that backed up? Are there other surgeons that can maybe get you in faster? I will pray for you to find a surgeon who can help you A.S.A.P. Please don't give up.

marina said:

I cried myself to sleep last night..and will today isnt any better.Tried to get into my doctor but cant get in umtil the 23.As for the nero doc i see i also cant get into him..All i was told was go to the ER.Ya they sure do show they care.I dont know when the last time i felted ok.I am waiting to get the MVD procedure done but who knows when ill get that call..(could be up to a yr)I just dont know how to deal with this pain until then.
Adding heat dont help it and the cold makes it worst..I dont know i just dont know .

Dear Marina, I can only repeat what others have written - so, so sorry. We are with you every step of the way and will always hold a safety-net for you. Be strong. Best wishes, T.

THE health care system here sucks ad.I live outside of sydney novia scotia.(in the counrty) I will be getting the MVD done in Halifax.About a yr ago i saw a nero doctor that was a complete A** that i came home and with the help of my boss we found a nero doctor in halifax that only deals with TN. I made an appointment with my doctor and told him i wanted to see this doctor.Instead of this doctor seeing me i got refered me to a nero doctor here in sydney.I was willing to take the drive to halifax to see him but he refused to see me.there is no surgeons close to me but only in halifax and i guess i aint that important to them..Like my son said they aint going through this so they dont care.I dont even know who to bug because i dont have a clue who the nero surgeon is that i will be seeing.

I have a guestion i find lately i have been having a lot of numdness at the back of my head from my ear down to the base of my neck..and it seems if im not doin to much my head seems ok but once i get up and start moving my head god my headkills..does that make since..

Yes, Marina, it makes sense. Occipital Neuralgia is fairly often sensitive to blood pressure. When you stand up and move around, your pressure goes up. We can speculate that perhaps when you stand, the compression increases between a blood vessel and either the greater or lesser occipital nerve in the cervical region of your neck. This is worth discussion with any physician whom you see for your face and head pain.

Regards, Red

i wish i could because i feel the same way.

its awful isnt elaine....i dont know bf told me make an appointment with another docotor but who wants to start at square one again.
i just dont understand how we live in a country were ppl have to suffer in pain like this and these so called doctors dont want to help us or put us on the back burners i just dont understand it..
I dont drink i tried drugs once or twice when i was younger(and hated it)and right now and im at the point were im willin to do both if it takes away the pain.But apart of me do know better.IM sorry but i have to let it out because no one around me can understand what im feeling or what im thinking.I just wish there was an easy fix to this i had enough of it.
Hope every1 else is having a pain free day..god bless

Marina, I am finding your situation heartbreaking. I wish I had the answer for you but all I have is support, I am saying a little prayer for you every day and live in hope of better for you soon. Jackie

marina said:

its awful isnt elaine....i dont know bf told me make an appointment with another docotor but who wants to start at square one again.
i just dont understand how we live in a country were ppl have to suffer in pain like this and these so called doctors dont want to help us or put us on the back burners i just dont understand it..
I dont drink i tried drugs once or twice when i was younger(and hated it)and right now and im at the point were im willin to do both if it takes away the pain.But apart of me do know better.IM sorry but i have to let it out because no one around me can understand what im feeling or what im thinking.I just wish there was an easy fix to this i had enough of it.
Hope every1 else is having a pain free day..god bless

its frustrating i know your pain and pray for a day of painliss bliss for you ! :) hang in there



sheri smith said:

its frustrating i know your pain and pray for a day of painliss bliss for you ! :) hang in there