Is there really any hope for a TN2 patient

General General TN & GPN (Old Site)
#1

Several months ago I looked into options for perhaps having surgical options for my TN2. I live in Farmington NM. The best an only option for TN surgeries is Albuquerque. I talked to a surgeon there who looked at my MRI and said there was no way for him to do any surgery on me as TN2 patients do not have any positive results from surgery. He checked with the various surgeons who do the different types of surgeries and they all concurred.

I then contacted the Mayo Clinic in Arizona. It was October at the time. The person I spoke to said that they were undergoing a major upgrade in the Neurology Unit and that it would not be open for patients until around March. I asked him about insurances and explained I was on Medicare and had a secondary insurance as well. He said they do not bill Medicare themselves but would give me the information so I could bill them. He also explained that Medicare patients were billed 20% on top of the billed amount. That took me out of the game of going to the Mayo Clinic to see if there was anything they could suggest. I totally understand billing the Medicare patient an additional 20% as Medicare pays peanuts to doctors for their services. But if I was able to still work and had better insurance, I could afford the additional 20%. As it is, it's a no go for me.

So, I've been looking over the medications for TN2 patients on this site and they are much varied. I'm comparing them to mine which is 3600 Gabapentin split to 1200 3 times a day 1500 Trileptal split 600 in the morning and 900 at night. Up to 80 mg baclofen. 50 mg of Elavil in the evening. I can use up to 30 mg of Klonopin during the day at .5 mg a day with the preference of no more that 20 mg per day. I take 2mg of Dilaudid every 6 hours for break through pain. I also use Lidocain Nasal Spray 4% Topical Solution to help with the continual burning pain up my nose

Those are my TN2 meds then there is Requip for restless leg syndrome, B12 shots for pernicious anemia every month caused by my Whipple procedure as well as being on Lantus and Novolog for 1.5 diabetes caused by the same Whipple procedure. On top of that there are a variety of meds for allergies and asthma.

I am considering trying to up my Trileptal to 900 mg in the morning again. The first time I did this I was so ill I couldn't make it out of bed. I had extreme nausea and such pain in my stomach I couldn't get out of bed. I talked to my pain management NP today and all my confusion about only taking the Dilauded when my pain got to the point I would normally go to the ER has been cleared up. I was on Lortab 7.5mg 4 times a day and then I would take a Dilauded if I was at the pain level that I would go to the ER with. Now I understand he only wants me on the Dilauded. My problem with that is I am a single woman. I cannot drive safely while on Dilauded. I would be driving like I had drank a 6 pack of beer if I remember that feeling correctly or a lot of vodka. I can't put myself and others at that level of danger. Of course, then on the other hand I find that taking the 900 mg of Trileptal at night is putting me to sleep so completely that I don't know if my stomach adjusts to it that I will be any better off on the extra Trileptal every day.

I have a question for any of you TN2 folks. Have you tried prescription marijuana? if so has that helped in anyway. A friend of mine saw a documentary on the benefits of prescription marijuana and thought it might be something good to try. When I spoke to my psychiatrist about it she though it might be worth a go but she said she did not think my pain clinic was pro marijuana nor did she think my neurologist was. Since I have PTSD I have the option to work around all of that through her. I just don't know about it. If I could leave the rest of these drugs alone though I'm willing to try it.

I am so frustrated and have been in tears all through out today. I even spaced out calling a friend to cancel lunch with her today. She had been sitting at the restaurant for 15 minutes before she called. I'm sick about that. I am a Christian and believe that Christ has a purpose for this pain and that should He choose, He could heal me right now. I think He wants to work at a different kind of healing and that is within my spiritual self. I praise God for giving me a wonderful church family who I can call out to at any time. However, I know that I want to be independent and do things on my own. Perhaps that is what He is teaching me, how to lean on others.

I also know my carnal self is so frustrated and depressed. I want an end to this. I need the pain to stop or the medication side affects to stop. I can't keep going on like this. I know it is getting close for me to call my psychiatrist and tell her I'm barely holding on. I don't know how much longer I can do so. I am living in a sea of despair and being drugged out might be what some people think is great, but I don't want to live this way. I want to play in the college orchestra, play on the worship team, teach Sunday school, be at Bible Study, stay awake and completely enjoy church. I want to be a good conscious CASA volunteer who can enjoy the foster kids assigned to me and help them, their parents, their foster parents, case workers and other people that are assigned to them so we can all work for the best outcome for those kids. I want to actually wash dishes, clean my house which is atrocious. I can't do any of that if I am sacked out asleep or in a drugged out fog. Right now I have NO life, NONE at all. I hate all of this TN2 stuff and all that goes with it. I thought the worst part of my life was being locked in the psych unit of my hospital and state psych ward 10 years ago because my life had really gone crazy and all the bad things past and present had caught up with me. I lost my job and my way in life. But you want to know something? Being a crazy person is far preferable to being a person who is going crazy because of daily pain and agony and one who is fighting through drug reactions. This I'm sure sounds horrid to anyone with TN1 but I wish I had TN1 rather than TN2. At least there are some surgical options there. I know that neither form of TN is positive in reality. I have a friend with TN1 and it is slowly wrecking her life as well.

I'm done rambling. If you read this, thank you very much. May God bless you and please have a grand day.

Gloria

#2

Hi Gloria,

I'm so sorry you have been having so much pain and trouble. Have you tried the Nortiptyline, or Amitryptiline (not sure on spelling) options. It took me 10 months after diagnosis to get a doctor to try them, but they have been a life saver. The other 4 drugs I have tried (most of which you are on) gave me debilitating side effects before I got on a high enough dose to help me. but I have gotten my pain down to a livable level with mild side effects on Nortriptyline. The one that worked second best for me was Lyrica, it had THE BEST pain relief, on day three I was 100% pain free, but by week three I was horribly depressed (worse than just because of pain) and I was very suicidal because of the drug, so I still recommend people try it, but get a close friend or family member to watch your moods.

It took me about 8 months, to go from my lowest weekend of despratly wanting to die, to where I am now, mostly happy. I had to quit a job that I loved and move in with my parents, I had to start seeing a pain focused councilor, and I had to get on a drug that actually helped.

I am only 25 and I know the YOU HAVE NO FUTURE! fear very well. I have lain in bed crying for the jobs I likely wont have, the friends invites I decline, and worrying I will never find a significant other who wants to put up with this crap and all the ways in impacts me.

Lord knows I am sick of dealing with it!

at my darkest I read over all of the TN1 stories on here and begged God to give me that instead, at least most those people had breaks, or had more successful surgeries. I have no way of explaining what 24/7 acute pain does to your brain and body to someone who doesn't know. I try hard not to use curse words, but it F***s you up! There is no better phrase. I try not to think about the reality that it may only end when I die.

I freaked out one of my friends grandparents when I told them that I didn't want to live past 65-70, because more than 35 more years of this sounds like more than I want to live through. Now I try not to tell that to people who don't understand, but this is an amazing place to share, because we know. Oh boy, do we know!

I wish you all the luck in the world, and the will to keep fighting the system,and the doctors for what you need. See if you can find someone to insert one of those implanted nerve stimulators I have just started to hear about.

:) -Erika

#3

ps. for me, the answer to the question "is there hope for us?" is "yes, we can have a life, and some relief, but it will not be the same life, and that is ok." *hugs*

#4

Thank you Erika for your encouraging words. Writing for me is an outlet and I guess I really needed it today. I can't imagine being 25 and looking at living life with TN2. You are correct that there is hope for those of us who have TN2. I was just so frustrated. A lot of it is the medication issue and re-reading what I wrote I realized I did leave off that I am on Elavil/Amitriptyline as well I take 50mg every night.

I think part of the frustration for me is I have fought with migraines since I was 13 as well as severe depression, though my parents never really saw the depression I struggled with. My fight with psychiatric problems continued until I was finally seen and fully diagnosed by a wonderful psychiatrist and doctor when I was 44. When I was in my 30's my fight continued not just with psychiatric problems and migraines but severe fibromyalgia and osteoarthritis. I finally had a what essentially was a "nervous breakdown". They don't call it that anymore but that is what it was. Through the next six years I fought not only to regain my sanity but had both knee's replaced, had a complicated procedure done called a Whipple procedure where the surgeon was expecting to find cancer but only found a benign grisly growth in my pancreas. But the process took out my gallbladder, my pancreas head and a bit more but he did leave as much as he could, my duodenum, half my stomach part of my small intestine and then I was replummed. I also lost both my parents and my brother.

Finally, in 2012 after a hard fought battle I was able to get off most of the pain meds I had been on for the severe Fibromyalgia, and I was able to get off of every psychiatric medication I was on except for Clonazepam. I was on a low dose of Gabapentin for the Fibromyalgia but other than asthma and allergy meds I was the most medication free that I had been for years. In May of 2014 I found that what I thought was severe migraines and my PA thought were severe sinusitis problems that I had been fighting since the summer of 2013 was actually TN, which was diagnosed by a ENT doctor. I found out after meeting with the neurologist 6 months later (I had two appointments canceled by the neurologist group because the physician I was supposed to see had moved. Then I got bumped by them another time. I don't know what they were thinking other than a TN patient isn't going to die from their disease. And I actually understand that. I am lucky I am not dealing with cancer or any of the major abnormalities that can affect the brain to the point of immediate death or inability to think and move and what-not. Finally, I found I was dealing with TN2 rather than TN1.

Not only was I diagnosed with TN in May 2014 but type 1.5 diabetes (which means I live my life like a type 1 but instead of disease attacking my pancreas it was damaged via surgery. But hey, I got 9 years of good use out of the piece that was left in there. It just can't decide if it is going to peter out or if it wants to drop me by squirting out insulin. Such fun! I was also diagnosed with pernicious anemia, again cause by the loss of the pancreas.

I did mention I am on Amitriptyline. I was on Nortriptyline early on when I was given my first antidepressant. I found that I had a hard time with the side effects. I have found Amitriptyline a much kinder version of the tricyclic medications. My psychiatrist, knowing I am trying really hard to stay off of psychiatric medications said that the low dose of Amitriptyline that I would be on to redirect my brain to deal better with the pain should be as nothing compared to everything I've been on.

Well to finish out, later today I got off my pity pot and got up and forced myself to do some laundry and dishes. It wasn't much and I really wanted to go to ladies' Bible Study but the Dilaudid makes me a zombie let alone I wouldn't trust me on the road. Then I laid back down again. As you say Erica, it's not the life I want but it is a different life. And that is okay. Thanks for that.

#5

Some of us just got the short end of the genetic stick I guess... We certainly did, I have 7 chronic health issues, I was born with 2 and I added one about every 5 years. None of mine have been quite as severe as yours thank goodness, but they cause daily pain, and exhaustion and just make life difficult. Most are with my digestive system, I will just say that eating is an ordeal, and something is broken every step of the way from mouth to...the other end. My MOST painful problem is chronic Kidney stones, I have had 8, the second one popped my kidney when I was 15, that ended in surgery, the 6th lasted 6 weeks and also ended in surgery. the others were about 72 hours each, and no pic-nic, but I almost feel used to those by now. ATN is my second most painful, but might have messed me up more because at least the kidney stones have a few months to a few years between them. A nurse friend told me that Kidney stones, TN, and breaking a femur were the 3 most painful things a person could live through. I like to joke, "I've done 2 out of 3, only one more to go! then I can really tell you what is the worst!" I like dark humor, it suits many of my moods.

My mom and I joke that there should be a Lemon Law on bodies so I can send mine back. I am sure yours would fall under the same category!

Hang in there, and I am glad the writing helps, it helps me too. :)

Best of Luck,

Erika

#6

Your story just made me cry I’m 28 and I can totally relate. Breaks my heart how many of us live in a pain nobody but us will ever understand and what it does to you mentally. Its like dying inside. But we have to remain positive

#7

It is now a few months down the road with more down times than up, but I keep thinking about what Erika said, ""yes, we can have a life, and some relief, but it will not be the same life, and that is ok." I try every day to make it okay. I see my pain doctor tomorrow. I just wish he and my neurologist would work together more. Heck, I wish I had a disease that allowed me to see my neurologist more than once every six months or if she ends up busy then, when she can schedule me in. I know there is really no point in her seeing me as I have an illness that can't be made better with medication but perhaps can give me some sort of in between so I have good days and bad days. At this point all the medication just makes me want to sleep for 10 to 14 hours of the day or more. I can't figure out if it is the medication or depression. But when I got so frustrated at a form that didn't work right for my monthly CASA logs I just thought I best chill out.

I'm not getting done things that need to be done, but God has provided some much needed help to do some of the yard and outdoor things for me so I did not have to stress over that. I keep thinking if I could just get something done, even one thing today, maybe two tomorrow and build on that I can work it out. I used to be a runner back before my knees went to crap and had to be replaced but I loved that high. I keep thinking if I can just get on the exercise bike and do 10 min for a few days and slowly increase it maybe I can work back to that high.

I was talking to my psychiatrist last month, I saw her on a good day. I told her if she had seen me the previous week she might have admitted me. I asked her about pain and there gets to a point were the drugs aren't the answer and she said the best thing to do is to distract myself in another activity. There is a FB game I play that I've noticed helps me to do that, but that is not DOING anything. It just hurts to much when I get up and move. Why is that? Does that happen to anyone else. I have the burning up my nose continually. It gets worse just when moving in a car or walking around in my house. In fact, breathing through my nose with the left nostril make the pain sere, I have the lydocaine spray, thank goodness, which helps but does anyone else have that problem with the burning pain in the nose getting worse? I've found having a cold a blessing because I can't breath through that nostril.

Ah, the things we live with when we have TN2. Isn't this fun folks! Well we do have a life, just not the one we planned for. I take full advantage of the good days survive the horrible ones and do the most I can to with the bad ones. Hang in there one and all! I know I am.

P.S.I don't know that I've mentioned this but you see the dog that is my avatar? Her name is Shawnie. When I'm really upset and in need she is the one dog of my four that is so in tune with my emotions. She will come over and lay by me, put her head as close to me as possible and give me a dogie hug. She doesn't leave until that overwhelming emotion passes. I am blessed to have such a wonderful dog!

#8

Hey Gloria,

Your doggy looks like a Border Collie, I have a "Borador" Border Collie/Labrador. She is an amazing dog, and hyper focused on me, she loves leaning her head on my lap, and I call it Doggy hugs too. I know if I would let her she would be a giant lap dog.

I hope you have as many good days as possible and can be forgiving of yourself on worse days. I tend to get really angry at myself when I know I am not doing something as well as I used too. I am still in the process of learning my new limits.

Good luck and give the Dog a treat from me!

-Erika

#9

Thanks Erica,

Shawnie is indeed a Border Collie. Though she is a rescue dog from the dog pound, I found out the original owners and she is a full blooded registered dog. They just couldn't keep her because they didn't do their due diligence to find out how much work it takes to train and settle down this breed of dog. She was just too much dog for them. Herding dogs take a lot of work to settle down. Though my favorite herding dog is an Australian Cattle dog (they are great wash and go dogs, Border Collies take a lot of brushing to keep their coats mat free) I love Shawnie as much as any ACD I have owned!

#10

I am glad you and Shawnie have each other. I got Angel about 2 weeks after my pain started, as much as she can drive me nuts,like today when she managed to lick a piece of toast in my hand, she can be a big comfort too.