So here I sit in horrendous pain. The lamictal isn't working, the dose isn't high enough yet (50 mgs a day) I believe and I am out of pain meds. I am scared to call my doctor - I have already been back once for more, the pain is getting out of control and he has me on a rather large dose. I don't know what to do and I can't keep going to the ER to get a shot. I have already been called a drug seeker, addict and the whole 9 yards, including being told I was doing it for attention. That was different doctor though, not my current one.
No, Sharyn, the largest majority do not understand. They’re more concerned about the DEA breathing down their necks since the pharmacies were linked up and they can have their licenses pulled. It’s a very frightening fact that chronic pain patients are dismissed and invalidated because of the epidemic of prescription pain medicine use by people who want to get high and/or have become addicted.
It’s important to know that doctors are always on the alert for the “red flags” of addiction. Asking for a specific medication is the biggest red flag. It’s very important to ask for “pain relief” instead of a particular type of pain medication. Most doctors will err on the side of allowing a patient suffer, rather than putting themselves in the line of fire.
You obviously need to have your medications and doses adjusted. Call you doctor today and tell them you need help. At the same time, be open to the form that help may take. Ask for immediate help AND a referal to a specialist (neurologist, pain management doctor, etc.). Make your doctor comfortable that you are willing to try different options.
Good luck!
Thanks Gloria! To be honest, I expected that lol. An ER doc told me she couldn't write me more meds because the pharmacy won't fill it unless it is an order from the original prescriber. The last time he saw me early, he seemed irritated. He also sees my husband (he has CRPS, something I know is right in line with TN) and took him off the same pain meds I was taking. That was a red flag for me for sure, he is worried I will use them. I would never touch my husbands meds - I know the power of pain and I could not do that to someone.
Another problem is the person that gets pain medication and sells it. In this economy, people are desperate. This is a sign they don't need it, while people who do suffer for it. Oh well, I am going to throw the dice tomorrow and hope he sees I just want what everyone does that has TN - the pain to stop!
Unfortunately for each of us, some pain meds don’t work well, while others do. Some anticonvulsants work well, while others don’t. We all have differences and similarities. Doctors are completely baffled with TN and don’t have an absolute standard of care other than to try the anticonvulsants and pain meds.
I’ll be beaming at you!
You have an absolute right to have your pain controed and it’s up to you and your doc to do the trial and error walk through. A timeline, pain diary would be helpful as if your pain gets too out of control, you may pass out. Make every effort to mark down appts, discussioms with docs, etc. Also, a multi-disciplinary approach is the best way to go with TN. And, a pain specialist may be better than a neuro for this. Please take the time to relax and care for yourself today, try some sleepytime tea during the day if the pain is bad, it will help a little. Please keep posting this week to let us know how you fare.
Sharyn said:
Thanks Gloria! To be honest, I expected that lol. An ER doc told me she couldn’t write me more meds because the pharmacy won’t fill it unless it is an order from the original prescriber. The last time he saw me early, he seemed irritated. He also sees my husband (he has CRPS, something I know is right in line with TN) and took him off the same pain meds I was taking. That was a red flag for me for sure, he is worried I will use them. I would never touch my husbands meds - I know the power of pain and I could not do that to someone.
Another problem is the person that gets pain medication and sells it. In this economy, people are desperate. This is a sign they don’t need it, while people who do suffer for it. Oh well, I am going to throw the dice tomorrow and hope he sees I just want what everyone does that has TN - the pain to stop!
I ended up in the ER today because it was so very bad. I was holding a Dr. Pepper bottle and at one point, I squeezed it so hard due to the pain, it meet in the middle and sent Dr. Pepper all over the ER waiting room. The physicians assistance gave me a shot (1 mg of dilaudid), which eased it a little and a HUGE lecture on the dangers of my CHRONIC condition. No one has taught her that chronic is 6 months and I am at 2 1/2 months.
My doctor is a physiatrist (Physiatrists, or rehabilitation physicians, are nerve, muscle, and bone experts who treat injuries or illnesses that affect how you move). He is very good with my husband, but I am wondering if TN may not be out of his league. He worked me in, when i called for a referral from him and he did it again a few weeks ago. I feel bad asking him to see me sooner yet again and am concerned of his reaction.
My mother made an interesting observation that made quite a bit of sense. She said the doctors are not really listening to me. My pain is 24/7 and NEVER stops. I see a 5 or 6 from pain meds, and once hit a 3 for 2 hours. Even the shot only brought me to a current 7 and right now I am almost back in tears. Tears don't help, they hurt. I am being treated for short term pain (4mgs dilaudid, max 4 a day) which the pain medicine lasts about 2 hours. It hurts real bad, I take a pill. By the time the pill kicks in, its not enough, the pain is horrible. I take another and get some relief. I need something to stop the pain from reaching the HORRIBLE point, it is simply taking more to stop it because the pain is so very bad. Ok, I vented enough - that felt good. Thanks to all!
Vent away Sharyn, I would if I were you. I have no advice, simply because it is out of my league. But I can offer empathy, it is shocking what you are enduring and your Dr’s should be highly embarrassed to allow you to suffer like this.
Sharyn,
You really need to be referred to a neurologist. Your current doctor is not trained in this area and you will continue the painful path you're on now. You have a rare, specialized condition and you need to see a specialist.
I understand what you're saying about the ER. The IV pain meds they give you don't knock out the pain. Unfortunately, they get very cynical because they see so many drug seekers. I finally got on the correct meds and doses and haven't had to go to the ER in a very long time - maybe a year - which is amazing because I was practically living in the ER for quite a long time!
Agreed. You need a neurologist. You are treating TN with narcotics and quite frankly, that is not what will stop it. Narcotics are more of a breakthrough medication than anything. You need to be put on a traditional medication for TN FIRST.......... with narcotics for the breakthrough pain. Really a neurologist is the only doctor that is going to come close to being versed in what TN is.
Why has your doctor not discussed any of the anticonvulsants with you? That should have been the first line of drugs. They are trying to bandaid you, instead of treat you.
Well shoot...... I just read your profile (dummy me!). Have you tried combinations of anticonvulsants along with narcotics? Have you had an MRI? Do you know if you are a candidate for a MVD procedure?
@Lisa - I am on lamictal which is anticonvulsant and have been on tegretol already which did not work either. I have also tried several muscle relaxers. I am getting an MRI very soon, as well as an EEG.
@Gloria - I read what you said and I agree with you. My current doctor is basically doing the pain management and I made an appointment with a neurologist yesterday, can you believe he can see me Thursday???? Its going to cost me $180 which I have to borrow from my mother, but I think it will be worth every dime! He said I will need the above tests first thing and some bloodwork. I would guess we will decide at that point about the MVD,
I visited my PC yesterday as well and we discussed the whole situation. He put me on an antidepressant to try and help the hopeless feeling I am getting and upped my lyrica to the max dose. I was already on 450 mgs, so that wont be too bad. Thank goodness for patient assistance! He also had to give me benicar for my blood pressure. It has always been good, but since the pain started, it has skyrocketed and will as muh as 195/125. He believes the pain is shooting it up, but that is dangerous and I don't need that added pressure. He also is inclined to believe the dentist I visited about 10 days before the onset of my pain may have injured the nerve that runs close to my nose. She was not able to pull my teeth because after 4 shots of novacaine, it still hurt and my pulse rate was too high to give me more. I am getting them pulled April 18 and hoping that will help. It did before when I first had TN 5 years ago, but it was nowhere near this bad (the lightning strikes and the ache which stayed at a level I wasn't even on pain medicine at all). There is also a good possibility that I have MS. I need to have the lumbar puncture done to confirm it, but I am terrified of that procedure. I had it done 10 years ago and it was almost as bad as TN!
I also told him about joining this group and he said it was probably the best thing I could have done. Being proactive is the first step to recovery and he said especially in cases like ours, where there are so many options, drug combinations, procedures, etc. It is so awesome to be able to read what others have tried, what worked for them and what to avoid. Thank you again!
Lesson learned, all doctors care about is their license and the DEA. He was so nice, its hard to be mad at him. He doesn't believe I have TN, but he agrees about the neurologist. He doesn't think it's trigeminal neuralgia. Here we go again. I realized that my whole head is tingling as well as my face. It isn't a side effect of any of medications, so it needs to be checked out. I was lucky enough to get an appointment on Thursday, can you believe that? Scary, lol. I am trying so hard to keep my spirits up, but it is so hard sometimes. The pain is overwhelming me sometimes - but I refuse to let it control me. I am reading a great book by Carol Levy, called "A Pained Life - A Chronic Pain Journey". It details some of the procedures and steps she went through over the last 30 years. She has a Facebook page and a website. I was amazed at her tenancity and willpower to take control of her condition despite the "naysayers" so to speak. You can even download the first few chapters to preview and its cheaper at Amazon than anywhere else.
I am not sure what my next steps will be other than my visit with the neurologist. I hurt so bad right now, and I know the stress is not helping. You are all so awesome, thanks for listening AGAIN.
Sharyn, why do you have to have the teeth pulled?
All the doctors seem to think it is my teeth setting the TN off. I have some broken ones on the same side as the TN. I personally think the dentist injured the nerve when she tried to pull them and couldn't because of my heart rate being too high to give me more novacaine. About 10 days later, the pain started one night laying in bed. The blanket touched my face and the rest is history. I do have pain in those teeth, but the TN also falls down to the bottom teeth, which are good. They actually want me to have all the teeth pulled on the top right of my mouth and get a partial plate. The dentist says there will be less risk of making it permanent. I am scared to death of her poking around in my mouth to be honest. But, I am poor and she is only charging me $55 (its a clinic where you pay based on your income). The other dentists want $800-900, which just can't happen right now.
Sharyn, So then rather then capping, you want to pull them, right?? If so, if I were you... I would wait until the nerves settle down.. for sure... Just my two cents.. I am sorry for all that you are going thru right now. This is really bad.... I hope you get some good meds soon that help you !!!! Peace, Min
Ouchhhhh, when I read about the blood pressure thing. Oh man, and then what you said about the possible nerve damage next to your nose. OH my gosh. I cringed big time. I feel for you........ :(((((
Thank you so much Min! Everyone is so wonderful and supportive. Reading and interacting with everyone is helping me keep going.