We dumped our old neurologist
because she wouldn’t prescribe pain medications to my wife we have a new neurologist appointment on Monday any suggestions on what to ask him and what to say
Would not prescribe narcotic pain meds? Those barely work for us
Mostly we take anti seizure meds, or two meds, many use topical pain meds on face or in mouth.
Here are our favorites
And
http://www.livingwithtn.org/forum/topics/taking-a-poll-here-please-instant-help-for-pain-now-topical
Have you read STRIKING BACK BT DR KEN CASEY. .?
Tis our TN bible
My wife takes six hundred milligrams of oxcarbazepine. She has topical lidocaine and topical mouthwash the lidocaine seems to help him but when she has break through pain nothing seems to help what kind of figure out how we can get some relief for that
We order the book yesterday
I have been to 2 neurologists. They would not give me pain meds. I have been dealing with this for over 4 years and have tried many combos of medicine. I have also tried chiropractor, exercises and accupunture. When you ask for pain meds they treat you like you are a drug seeker. I have spent thousands of dollars trying to find something that will help. Some of the meds help at first but I have such brain fog I can't work. I work with numbers all day and I don't know the difference between a 2 and a 4. My spelling is horrible because I can't think of the right letter. Then they up the dosage of the meds and it starts all over until they try something different. I hate this. I am going to quit work in a month and try for disability. Even if I can't get it I am not able to work and it is ruining my quality of life
Mr. Lee your story sounds exactly like my wives she’s gone through so much medicine everything is foggy she can’t remember last night she decided she’s going to get off oxcarbazepine I don’t that’s spell correctly , they won’t give her pain meds. They treat you like you just some kind of drug addict looking for drugs I hate this disease I hate this disease she also worked with numbers and she’s on short-term disability
I was taking Carbamazepine. I stared with 400 mg a day and was up to 1000 mg a day. It was changed to oxcarbazepine. I started with 300 mg a day and now up to 800 mg a day. The first neurologist I went to said I don't treat pain.and would not give me any pain meds. The one I am going to now gave me a one month supply of vicodin and told me I could not take that medicine forever. If they could only feel the pain one day for 10 minutes they would have a different attitude. I have days when I just lay in bed curling up in a ball with an ice bag on my head crying. I am far from being a baby about pain. I have had a hip replacement, broken ribs knee surgery and many other injuries but I have never had a pain anything close to this. Your wife is so lucky to have you to support her and understand. It is hard on the spouse and I admire how understanding you are. I think my family doesn't have a clue what I am going through. Everytime I miss a ballgame or school function I get the cold treatment. They totally don't get it. I have not been out to a restaurant to eat for three years. Eating and talking will sometimes set it off and now I am afriad to go. Hang in there with your wife and please try and understand how hard it is. I know it is also hard on you because you feel so helpless. Prayers and peace.
p.s. This website is the only place I feel I can talk to people who understand. It has been a lifesaver to me
Hi I don't have much more too add except to say what medications I was one. Gabapentin daily, tegretol daily, and Ativan and klonopin as needed. Best of luck.
Fernando - you are the best husband in the world. Thank you for being there for me.
Lee,
My neuro wouldn’t even give me lidocaine mouthwash, even when I said it was getting too hard to brush my teeth- CRAZY! I work with numbers too and can’t imagine working right now. My thoughts are with you and hopefully you’ll be able to get disability.
Mr. Lee you can reach out to me anything time you wish. I know how horrible disease can be and what is done to my wife so feel free to reach out anytime you wish. Good luck sir.
I am VERY FORTUNATE to have a Neurologist, Pain Management Specialist and Psychiatrist who get it! In addition to anti-convulstant (Nortryptyline), a long lasting opiate (methadone), Botox injection (in upper back and base of skull) and anxiety medications (Ativan and clonazepam) to help me with anxiety and sleep. I tried 14 different medications, numerous treatments, etc over the last 4 years (18 months were spent bed-ridden in a ball), nearly had MVD surgery twice, until I found this current combination of medications. I know all this could change in a heart beat so I count each day as a blessing.
Lee, I am with you, websites like this are a God send, to be amongst people who "get it" is so validating. Most people, no matter how hard they try, just don't get it.
This is from the Facial Pain Association Website (http://www.fpa-support.org/2011/01/making-the-most-of-your-consultation-with-a-healthcare-provider/)
Making the Most of Your Consultation with a Healthcare Provider
Mariann M. Ward, RN, MS, NP, Department of Neurological Surgery, University of California at San Francisco
Be prepared! The more organized you are prior to your appointment, the more beneficial the appointment will be for both you and your Health Care Provider (HCP)
Bring a notebook with you to your appointment with the following information in it about your face pain and be prepared to discuss these topics with your HCP.
1. Give a clear and concise description of your pain including:
- Onset: When did the pain begin and how long did it last? Has the pain recurred? If so, how long after the initial episode did it recur? How often is the pain occurring now?
- Location: Where on your face (point to it) does the pain start and does it spread. If it does spread- where?
- Character: What does the pain feel like? Is it sharp, electrical, burning, dull, throbbing. Is it constant or episodic? Are there specific triggers to your pain? What makes it better? What makes it worse?
- Severity: Is your pain mild, moderate, severe, or incapacitating? Has the severity changed over time?
2. List the medications that you are currently taking for your face pain including:
- Dosages and administration schedule
- Effectiveness
- Side effects
3. List the medications you have tried in the past for your face pain including:
- Total daily dosages
- How long you took the medication
- Effectiveness
- Reason for discontinuing
4. List all medication allergies and your allergic response.
5. Medical and Surgical history:
- List concurrent medical problems
- List prior medical problems, surgical procedures, and dental issues and procedures.
6. List evaluations and treatments by other HCP to date, and outcomes.
- Bring copies of prior imaging studies (MRI, CT scan, X-rays) and reports - A CD of Actual Scans, not just report
- Bring copies of consultations, treatment and/or operative procedure reports
- Did any procedures/treatments help?
- If so, for how long?
7. Share your views on what you think is causing your pain.
8. Ask "Do you think I have Trigeminal Neuralgia?"
- Why or why not?
9. Ask about treatment options available to treat your specific face pain.
- Medications
- Surgery
- Complementary/Alternative
10. Inquire about the health care provider’s specific medical and/or surgical experience in treating patients with facial pain, including trigeminal neuralgia:
- Do you specialize in treating patients with trigeminal neuralgia and/or face pain?
- How many patients with TN do you see each year?
- What diagnostic tools and treatments for TN are available at your institution?
- What treatment option(s) do you recommend for my pain and why?
- What are the pros and cons of each surgical procedure for treating my TN?
- What is the success rate of each procedure in your hands?
- What is the complication rate of each procedure in your hands?
- If I wanted a second opinion regarding my diagnosis and/or treatment options, who would you recommend I see?
Updated on 03/22/2012