does anyone have type 2 pain a number 10 all the time? i cant seem to get help from my md. he wont go higher then dilauded 4 mg. i saw my neruosurgen for follow up on monday i expressed how much the pain has been for 2 years. he did not give me anything. i feel like this is a nightmare. why wont anyone help me? i really cant take this pain anymore. my family does not help. my mom does not understand. i am at a lost on what to do. but cant take the suffering no more. what should i do? any suggestions would be great. thanks michelle
Michelle, I am so sorry you are going through this. My pain med came from my PCP. When I asked my Neuro about taking the pain med he kinda scoffed at it, saying something like “I shouldn’t be taking that”. He seems to think that if I take MORE Tegretol all will be ok. When I asked his nurse about what to do when I was out of state on vacation, she asked him and he said that I could take up to 600 more Tegretol a day! Obviously he doesn’t get it about what I consider horrible side affects from my 900 mg dose that I take daily!
I totally understand, find a doctor that understands the TN is your first step. I had many diagnoises over the last 15 years and they even said it was all in my head. I finally found a doctor that understood what was going on and it is great to be treated as a person not a head case. I can not say enough do tons of research to know what is going on and find out what works for you. I even reread articles to see if there is something I missed. The best thing I have found to bring the pain level down has been to find a quiet, dark spot that I can go to and decompress my stress and let all my muscless, and nerves calm down. My mom had a hard time at first excepting this and now that I send her information all the time she is a huge supported becasue she is understanding it. She to now is doing research to stay on top of it so she can continue to support me. Don't give up there is a reason for everything and sometimes we have things to happen to us so we can help someone else. Yes this is a extermely nasty condition that sucks, but don't give up we will all learn to live with this and maybe not always be normal but will be special.
Hi, Michelle—The high pain of type 2 TN is exactly how I would explain the first few years of my experience. I was too scared to have an MVD, I chose gamma knife 2x, and now wish I could have a do-over. The GK damaged the nerve to the point where when I finally had the MVD, it took away the harsh 10 level pain but the damage from GK persists. Also, when the GK neuro doc realized the pain was not subsiding for me, he said I should go to a pain clinic because I now have a pain problem. Prior to him saying this, I only sought help from a neurologist. Come to find out the pain specialist and neurologist see TN very differently and minister to our symptoms very differently.
Have patience, sweetie. Do your research when you are not having a flare up. Interview your docs to see who is the right one for you.
I’ve taken to juicing veggies and fruits to keep up my good health and it has given me new vigor to handle this pain. Yes, I have bouts of crying here and again, but this is natural given all we are losing out on due to high pain on a daily basis. The good news is that we are gaining insight and compassion through our struggle. We are also finding friends who really get us due to their experience.
I will be praying for you everyday. Please keep us posted on your progress. Many cyber ((((hugs)))).
((((hugs))))) Michelle! Praying for you!
Is there a different doctor you can try to see? Like in between visits with this doctor, so you don't lose your chance to get your meds? =/ There's gotta be a different way to get you the relief you DESERVE!
I have type 2. I don't have as severe pain as others...but what I have done to help manage my pain to levels I can tolerate. I don't eat much anymore. I just drink protein drinks and smoothies... I let myself eat a little something everyday, but that's about it...I only get naproxen for pain relief. I am on baclofen, but my head and neck have much pain to deal with. (some days--it's unbearable) Not eating doesn't help them..but it is all I have to give me some relief.. That and no music when I can't handle it...ohh, and no baths. (it steals so much from us..)