I saw a new dr today who obv. doesnt know a thing..or am i loosing my mind? he told me that tn can go into remission forever, and going for surgery would be the last thing to do and wouldn't recommend it bc its invasive. I was told to stay on my amitriptyline but he wasnt happen i was on vicoden so added prozac to help with my pain? I live in Florida and im from NY, everywhere i go down here no one can answer my questions correctly and now i see why im so confused. I cant keep fighting this. I went to this DR bc of my mad blurry vision and red eyes on top of the TN and he said eyes look great but go see an eye dr. All i wanna see is my bed. HOw many people and gonna make me think my life is over and im gonna live on meds, i refuse unless i for some reason cant have the surgery or i do and it doesnt work. Im literally letting all my emotions out from the past year and i cant stop crying. All i can think is why did this happen> what did i do? i know silly and i shouldn't feel sorry but im plain scared and life is now all maybes. I hope moving back to NY will help because im at my breaking point. The only support i have is my mother. I still have more work to do on my mouth (caps) but im so closeto being done i cant wait. Ill have the perfect smile for a life where i may have nothing to smile about. I dont want pity, i just want others to understand and let me talk about my fears. Its scary when no one knows whats wrong with you ( my vision) that comes and goes throught the day ...i just want to feel like theres hope, i know im very depressed and could use some people to talk to and cheer me up...i wont give up because i cant...but feel its already beaten me :(
Oh that is so frustrating just for me to hear, and I’m sorry your having to fight this so hard. (((Hugs))) Because you are doing a great job on fighting TN and putting up with some nutty doctors. Have you looked over the recommended doctors for TN on this site yet? You might have to travel a bit, but from the sound of things, it will most likely be worth it. Look up at the top if your screen on the right hand corner there is a tab called Doctors you can see if there are any in your state or other states close by.
As for your vison, gosh that must be scary. Did that crazy doctor even give you a referral to go see an eye doctor? If not, I have words to say but they are not very nice so I won’t type them out on this site. You could call up your insurance company and tell them what is going on and that you need a reliable eye doctor. Not one who just does eye exams for glasses and contacts. Also try call the pharmacy and talk with the pharmacist, see if any of your medications cause this type of side affect.
Boy, I wish I could give you some better advice on what to do. But I do have some words of encouragement for you. This may feel like a losing battle and others may have thrown in the towel by now, and lost all hope. You on the hand have not lost hope and are really doing a great job trying to find help to get the answers you need. Keep going the answer for you is out there. All is not lost yet. At some point soon you will come out the other side and be that much stronger, the much wiser, and even better version of you. I know you can do this, and I’m cheering you on and have you in my thoughts that you will get the help you deserve. I know your depressed right now and it may feel. As if things won’t change for better way but they will, even if its a different (omg I just forgot the dang word I was gonna use, so forgive if this sounds totally off) result than what you were hoping for. Lastly as the old saying goes as one door closes another door opens, well your door is just a stuck but if you keep pushing on that door I promise it will fly open for you.
Till then remember we are all rooting for you to cheer you on, and anytime you that you need to you can whine, cry, and just vent away. We’re all here to support each other through the good and the bad. (((Hugs))) because you are strong and can do this. Hope this helps and you have a better day tomorrow that is pain free with no loses of vision.
I’m so sorry Jen. My neurologist didn’t think I should do surgery and should stick to the meds that were not helping. I went to a pain management Dr that after hearing my history agreed with me needing to try something different and gave the ok to see a neurosurgeon. Is that something you could do? But def go to the eye dr as soon as you can. Find out the cause of the blurry vision. And please don’t feel alone. There are many of us that have gone through or are going through similar feelings. My life stopped when I was 20 and all this pain hit me. I finally just had my MVD 9 weeks ago and I feel hope for the first time in 10 years. If you ever need to talk, post or send me a message. 
Hang in there. You’ll find a plan or an answer.
Vent away here whenever you want. We understand. Talk away.
Jen
I wass uffering blurry vision it first happened at work I thought I was going blind, I went to get my eyes checked I needed a stronger prescription and they told me I was suffering from ocular migraines as well.Since my new prescription and using eye dropsmorning and night touch wood I hhaven't been as bad. Hope you can find a Dr who is helpful to you.
I wish you could be happy Jen instead of suffering Jen. You are at your breaking point and I understand that. I wish I could give you relief, but I cant. You vent away, hun!
(hugs) I have also been told that it can go away and never come back for some people. It is probably rare. When you get to NY, look up some good TN docs there and see if they can help you. Keep your eye on your goal and don't stop fighting.
Hi Jen,
Just like ‘wanderang’ , when I was at the eye dr in Dec, I was told I suffered from ocular migraines. Those are the easy part of this tn mess.
I really can feel your frustration, as I too have gone through the gamut of emotions just like you are right now. But let me explain how much further I’ve let those emotions carry me, so you can hopefully relate and not feel as though you are the only one with the hurt and heartache. …
I was diagnosed in 2000. I’ve lived with those damn meds in my purse, my bedside, my vehicle, my desk… I would walk into my neuro’ s office crying because I just couldn’t bear the anxiety of the situation anymore. “Oh! Well there’s another pill for that!”. Grrrreat… I’m already suffering major side effects from the other 3200mgs of trileptol I’m taking. That was the day I informed him I had made the decision to have the MVD. To which he said “I don’t have a dog in this fight, and I don’t recommend it”. I did it, it was unsuccessful, 2 months later I did the gamma knife, it was unsuccessful. Now to your point, (and this was April 2011 & August 2011 respectively), afterwards that long episode went into remission until three weeks ago… my experience has been each episode is longer than the previous one. I was (like you) living elsewhere when I did all of this. Last April I packed it up and moved from Seattle back to Ohio to be back with family and more friends for support. It was the best thing I’ve done so far. I have a new neuro, whom I trust explicitly.
Long story even longer… get around support as soon as you can, if you can. If you don’t feel comfort and trust with your Dr., keep looking for one until you do. You are paying them to take care of you so don’t settle. You shouldn’t have to. I think we all have to accept there is the unknown associated with this condition. But knowing you’re not alone, knowing there are people to “talk” to when you need to, and educate yourself as much as you can. We’ll all get through it together. As this is a great place to come to and lay it down…
I’m sorry for the long response, but I felt compelled because of the parallels I sensed.
Sending hugs your way…
Pam
So sorry for you. Such pain is tough to bare all alone. The doctors will figure it out. Be as assertive as you can and enjoy the moments when you feel okay. Thank God for your mother and I hope you are able to make further connections with a pain support group in the area you find yourself living. Please let out any emotions and thoughts you have on this site. I sure have and it helps.