Bad day, please help!

General General TN & GPN (Old Site)
1

Hi everyone.

I'm feeling so lost right now. I had my pain management appointment today and it didn't go so well. I was highly interested in trying a nerve block, but the doctor said no one in my state does them for trigeminal neuralgia.

Then we spoke about medications. I am currently on Neurontin 800mg 3-5x a day and I took my last Percocet 5mg this morning. He wants to try me on Baclofen, which I've read some people on here are on that. He also asked my why I was allergic to Tramadol and I explained that I got a horrible rash on my arms when I take it and severe GI issues. He said, "Is that it?" I was kind of not sure how to respond. I was advised by my neurologist not to take it anymore.

So, I did ask him for a refill of my Percocet. My last prescription was written a month ago and he said no. I asked him why. He said that I was young and it's not indicated for TN. I shook my head. Then he said we would just trying adding the Baclofen. He stood up and I asked him that I have tried everything the doctors have asked me and I finally found something that helps control my pain and why he wanted to change that. At this point he got highly irritated and got a harsh tone with me. He said, "Narcotics are NOT indicated for your condition and I will NOT prescribe them!!!"

I told him I just couldn't afford to continue to go the ER or Urgent Care for a pain crisis. I have taken a dozen different drugs for this and this worked for me. He cut me off and said, "well, I'll refund your money and you can go somewhere else because I'm not writing for them"

I did cry a little when I left. I'm not understanding this. My last prescription for pain medication said I could take four a day and that was a month ago. If I took the four a day my script would have lasted 10 days, but it lasted me a month. I was trying to think what I did wrong for him to be that way to me. I just don't know what to do anymore. I'm trying!

This doctor looked at me crazy when I said I thought I had more of Type 2 pain. One neurologist didn't even know there was a different type. The pain mgmt doctor said he will refer me to a city three hours away to do my nerve blocks. I doubt they're in my network thought. He said no one in my state does them.

I wish John Hopkins was in our network with my insurance, so I could go there. I feel like neurologists here have a limited, generic knowledge of TN. I don't what else to do. My insurance sucks and a lot of places I want to go to or try aren't in our network. We're already out $7,500 this year from copays, hospital visits and medications. Our savings is drained and I know the stress is probably adding to my pain.

I have to watch the medications I take because I have a 19-month-old who has a dare devil complex. I have an 8-year-old who needs help with homework and is fairly active. I also have a husband whose left arm was severely injured in an accident at work. He just had his second surgery on it this week.

Part of me wants to throw in the towel with the doctors and medications. But I know what life was like without my medications and it was absolutely horrible at times. I wish my insurance had mental health benefits because this condition is very stressful at times. I try to stay positive, but I am just soooo tired!!!!

What should I do?!

2

Do you have a regular primary doc that can help you with this? Have you tried putting RX lidocaine patches on your face?

Have you thought about Kicking that Doctor's A$$??? I'm so sorry --- Message Red, ask him to read your posting and see if he has any ideas. Do you have the book Stiking Back? Have you looked under the Dr. Tab above to see if anyone is recommended near you?

I'm so sorry this happend to you - keep putting one foot in front of the oother when you can.

Kimberly

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That doctor is an idiot. You deserve better care from your health care provider. Contact your health insurance and ask for a list of neuros they cover. And hang in there. I know it is hard but you can do it. Anyone who deals with this and a family all at the same time is a Super Hero in my book.

4

I called my neurologist and waiting on a call back. I’ll ask then for the lidocaine patches. I try them for sure. I think I’ll also ask him about the magic mouthwash I’ve been reading about on here.

I’ve tried two antidepressants, but had bad issues with both. I need to ask if there is something else I could try for this overwhelming feeling.

I wish someone was there with me today because I was mostly confused. I did check the doctors tab and there are no doctors listed for SC.

I think more often than not I am positive when it comes to my condition, but sometimes I do feel very frustrated/overwhelmed.

My neurologist suggested gamma knife, but is that surgery indicated for type 2?! I read MVD is typically indicated for type 2.

Thanks KC for responding! :slight_smile:

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Before I was diagnosed with TN my GP prescribed Butalbital, this did not help much for the stabbing pain. However, it did seem to help make the consent pain more bearable, and it did not make me sleepy.

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clonazapam can be useful in calming your nerves and mixed with another med can help reduce pain levels--as well as help sleep

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Oh sweetie, I’m so sorry you had such a rotten doctor appointment. I don’t know who sent out the message of opioids don’t work for TN, but they need their butts kicked. Is there any other pain management doctors in your area? I would try another one. Also make sure your medical history with Tn is sent over to there office before you go if you decide to see another pm doc. A
good pain management doctor will go over this along with your current and past medications with you. I have found when seeing a pm doctor it is important to have someone with you during the appoinemt too. Sorry I know this does not help too much after the fact but that guy sounds like a total prick (sorry for the language). Also you might want to try some lidocaine ( in a cream, gel, or mouthwash) your neuro can call it in. You may benefit messaging Red too, he might have some good suggestions for you on this. It is so frustrating to hear doctors treating anyone this way, it really makes me wonder what the hell medical schools teach them, be an arse to your patients?!? Gosh if I could I give you a big hug and so sorry you were treated this way. I hope you get the treatment you deserve soon.

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I wish I had a magic wand & I could make all your troubles dissapere! I wish I was a Doctor & I could help you! But all I can do is tell you to hang in there! Some times it seems that things just can’t get worse! But you know, this is what is happening now & with the support of us here, you will cope! I know you will! You have two little ones that need you & befor you know it, they will be all grown up & in that time your life will have changed so, so much! It’s amazing how much things can just turn around & go your way! Just think, tomorrow is a new day & in a years time, all those little days add up & you may find your self in a different place! Please, just don’t give up! I know! I have been there! Similar to you! Two little children, husband has a huge accident at work & all of a sudden we have no income because I am also sick! It will all get better & I know your in pain! I don’t have an answer for you! But I do have some positive energy comming your way! Hugs hugs hugs Sally.

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I am also sorry you had such an ignorant Doctor! Yep, had one of those a few months back! So I told him to go to hell & demanded my consultation money back! Then I rated him on the internet as the worst doctor I have ever seen! He was a Neuro scientist & he was so rude! Don’t be belittled by someone just because he has a degree & the power to help you because your in pain & you desperate for help! God this makes me so upset! Darling, I hope you get well soon & your life gets better! I will wish it for you!!!

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No way am I siding with that rude nasty Dr, however he has a point about the Baclofen. Many find it boosts the power of their TN meds immensely. I feel for you though, when you do find something that works you just cannot see why you cannot carry on. red is a good source of advice as has been suggested above. Don't forget~ 50% of all Dr's graduate in the bottom half of their class~ and no they are not God, they just think they are!!

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Do not despair, please. Doctors are so ignorant of T.N. Leave this one and see if your neurologist can reccommend a doctor that does know about it. I was on Tramadol for chronic back pain before I took T.N. and was taken off it as it cannot be taken with Tegretol I was told. I was glad as Tramadol alwaus made me feel really awful and did nothing for pain.

I take baclofen and it is great for me as it has helped a lot. However everyone is different. I do not know the system in U.S. but here -N.Ireland- My neurologist sends a letter to the doctor telling him which T.N. medication he must prescribe, Perhaps your neurologist could give you a letter to take to the doctor outlining what you need.

Why can he not listen to you . I despair of these arrogant doctors. I would go to another and ask if he has any other T.N. patients so that he knows the disease. My doctors have let me down big-time but at least they defer to my neurologist and they do admit that T.N. is too specialized for them. This though is also a cop out for them to actually do anything for me.

Do not give up. I am here all day and if you need some-one to talk to, even though I am not much help, I am here for you. I have been in that despair that no-one is listening or helping, Be pro-active in finding someone and if you do not feel well enough at the moment to do that, ask some-one to do it for you. Perhaps if you post what area you are in someone on this site will reccommend a doctor to you. It is worth a try. Best wishes to you. Thinking of you,N

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I know it isn't ideal because of distance but is there a doctor in Augusta or Charlotte that you can go to? Duke University has some great doctors and they do trials and have some programs set up for people who do not have insurance coverage. Again I know the distance isn't ideal but is still a possibility. They also have hotels there that give a hospital reduced rate. Have you checked with The University of South Carolina - Columbia to see if they are doing any research or clinical trials that are free to the participant? That is a closer alternative. The only thing with the trials is that you may get the fake meds which will be of no help. They may have someone just doing a basic research study though that can help.

You may also look to see if you have a "headache specialist" listed in your insurance directory. Many of them are extremely knowledgeable about TN and can get you started in a new direction that will work on your TN.

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My husband just had an experience with pain management like this for his osteoarthritis. But he won't stand up to them. He even said his rheumatologist said he didn't know what to do for him. I told him he should have said, "You're the damn doctor, right? Then do what you're supposed to do!" So sorry you're experiencing this.

14

Thanks everyone for your encouragement and positive words. Reading the posts makes me feel better just from an emotional standpoint.

I never heard back from my neurologist today and by the time I got around to calling it was 5:30pm. Taking care of my boys and hubby was very demanding today. The downside is a snapped at my eldest son a few times and my hubby once today - that made me feel awful!!!

I fully intend to use the baclofen and I’m glad the doctor had something else for me to try. I mean I think, to date, I’ve tried a dozen drugs. So… That’s why I didn’t want to completely change it because I knew it worked.

I looked today and Charleston, SC has MUSC there. I was considering a neurologist there and then checking NC/Charlotte for pain mgmt clinics who will do the nerve blocks. I am highly interested in trying this yet as I need guidance in any surgical procedure for this and I want that guidance from a neuologist who has treated this more than once or twice.

I spent a long time last night researching clinical trials online that I could participate in. Does anyone know if you have to be in the same location as listed for the trial? I didn’t know if because it listed the person who started the study was in michigian that I’d have to live there. I’m assuming so. I will check USC-Columbia for trials for sure.

Speaking of I did find their number for counseling services at USC and may get counseling at an affordable rate. They allow their masters student do counseling.

Does anyone have gum swelling with TN episodes? That’s why I initially thought it was tooth related, but three dentists and two oral surgeons all agree its not tooth or gums.

Thank you ALL SO MUCH. It really means the world to me.

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I'm in the Charlotte area and drove to Raleigh for my MVD this past June. You may want to research Carolinaneuroscience.com. I was very pleased with the care I got and the MVD got rid of the shocking pain under my teeth. I too saw multiple dentists, oral surgeons, pain drs, etc. MVD found two compressions on my nerve. I had many days where I wanted to just crawl under a rock. But can't do that with husband and children to take care of. Don't give up hope and research, research, research!

Also, I had swelling in my face/jaw area on my TN side that would come on during really bad pain flares. Some dr's say TN doesn't cause swelling. It certainly did in my case.

Hang in there! There are many people on this site who know how you feel.

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hey kismet..so sorry to hear about your distress...take each hour as it comes and rememebr your not alone *hug*. Yes i do get gum swelling when the pain moves from upper jaw to lower jaw my lower gums puff up at the back and i often feel like pulling many of my own teeth out but most on that side have no nerves and i have ruled out dental already too, maddening! Also while that doctor might be right that baclofen works for some people...not talking to your patient like they are something under your shoe helps everyone.

How dare he act so rude, dismissive and impatient. If he took the time to explain properly his reasons perhaps you would not feel as lost right now. I realise , living in America you are paying him of course, never forget you are his boss...you are paying him to help you, when he cannot do his job in a satisfactory manner and treat you with decency..fire the idiot..there are some doctors who are gems..you will find one the sooner you get rid of this one. You deserve the best treatment, dont let people fob you off just because your diagnosis is complicated..so WHAT, thats why they are the doctors...to investigate thoroughly and keep trying to find a way to treat or possibly resolve your pain. Your research and thoughts on your own pain to the doctor are crucial for diagnosis and a good doctor will listen just in case you mention something that could be worth looking into xxx

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Do you have a help list, people you can call on to help you during crisis time? I hope so. If not, or even if you do, contact Red.