Losing hope...

First of all my friend,never consider yourself a pain in the neck to a docor..you pay them,you are the boss so to speak,if they act anyway other then with care and respect go elsewhere,also their are more then meds to treat this look into gamma knife extremely non invasive and pretty effective,no knife involved,its laser,please google it. Please dont lose hope,look up videos on youtbe showing how people have broke free from the hell of it. Many hugs!

Hello GemLove,

I'm so sorry for what you are going through.  The pain is dreadful and when I had it bad (thankfully under control at the moment) I just wanted to hide away.  As I'm retired it was easier for me to do that, I don't know how I would have coped if I was still at work.  Anyway, I have no advice to you except hang in there, and don't let anyone make you feel you are a nuisance - there is any answer for you - maybe the neurologist will be able to help.  I hope so.  Good luck, Heather

Hi, I personally feel your pain and like you I have never joined this type of group and I'm not on facebook, but this group is invaluable to help you realize that you are not alone. I believe that most of us have felt alone, like we're going crazy and hate to talk about our pain because it doesn't seem to do any good. You need to persist to get back to feeling like yourself! I was finally diagnosed with TN by an Occupational Therapist who I was sent to because they thought maybe I had TMJ which I didn't have but the OT said that she thought I had TN. When she read the description of TN, I cried because it perfectly described my pain. Like you I've had numerous teeth pulled, root canals to no avail and no one who treated me thought it could be TN. I still get angry about that. I had MVD surgery at Johns Hopkins in January. The TN pain is gone but I am still recovering from the surgery itself. My head feels tight but I'll take this any day compared to the TN pain. You need to speak up for yourself because non one else will. I hope you get some resolution soon and are pain free! Take care, Mary

This board is chock full of folks who did not give up. There is relief coming, but the time is not known yet. You have to dig deep and find it within yourself to carry on knowing that the light is at the end of the tunnel, no matter how far that is

Hi GemLove

Really sorry to hear you've been in so much pain. We've all felt the despair you're feeling at some point. Just to check, have you had an MRI since experiencing these headaches? It might be a good idea, if only to find out if there's another cause. Have past MRI's, if you've had them, shed any light on the possible cause of your TN? Ask your neurologist to refer you for a thin cut MRI with dye contrast. Does your neurologist have experience of treating TN? It's important to find one who does. I find that GP's aren't much help in dealing with complicated neurological issues. They don't have the experience or the time, so I think it's important to find a good neurologist and stick with them.

Do let me know how you get on.

Sasha

I don't know all you're going through but man a lot i can relate to. I've been diagnosed with this for only 3 weeks but I've had rheumatoid arthritis severely for 15 years and I am 44 now. If you don't "look sick" many people will not see you as suffering. And I also feel like a loon and that they think I'm being dramatic.

Well, you have to put out of your mind what others think because it's your suffering and only you will ever understand it, I. Have cried for wanting my life back so many times. If you haven't tried these, here are a few things that have helped me in small ways: I got a squishy pillow, neck roll and man it helps my neck a lot. I have a lot of neck pain and it never leaves. Also, I got a shower chair and a shower hose and ait under hot water as much as I can stand and it is not a medication and really helps the neck pain and the TN to a degree. It also relaxes me and helps me calm down when I am hysterical from pain.

I wish you peace ans wellness. I am going to get a therapist because the TN and RA is making me lose my mind. Pain can take a toll on your mental health. You are not crazy, you are in pain and it's a crappy hand to be dealt. Carry on and keep searching. I hope you find that sweet spot. We all deserve to live better than this, my friend.

P.s. I don't join groups either but I've already read a lot of stories and wish I had looked for this kind of support sooner because it's nice to read stuff and go, "that's me!"