I have had a really bad day, the pain is very bad and I am not sure what to do next because my GP has refused to prescribe me anything.
I was diagnosed with type 2 TN 3 weeks ago by an ENT specialist who told me to go back to my doctor to discuss medication. She put me on 75mg of amitriptyline per day at my first appointment when she realised it was nerve pain and that I was desperate for it to stop, so I've been taking it since the middle of April.
The pain has been a bit worse over the last couple of weeks and since the weekend has got much worse. It's not the worst pain I've ever had but it's getting close, and I'm having real problems sleeping because it gets worse when I lie down and doesn't stop overnight. I am getting close to the limits of what I can take because it just won't let up. But my GP won't prescribe anything - he hasn't had the letter from the ENT specialist telling him about my diagnosis and he doesn't know much about TN so he wants to refer me to a pain clinic where I can get help from an expert. That's good, but he can't arrange the referral until he gets the official letter from the specialist with my test results and diagnosis, which he expects to take another 2 weeks. Then I will have to wait for an appointment at the pain clinic, and I have no idea how long that will take - I had to wait 10 weeks for the first ENT appointment (I am in the UK and dealing with the NHS medical system). Until then I have nothing other than the amitriptyline because my doctor won't give me anything.
So I am not sure what to do. I don't think I can cope until the weekend with the pain the way it is now, let alone several weeks. I explained to my doctor that I was desperate and having problems functioning because of the pain, but he has still refused me anything. When he said that I was so shocked I couldn't speak, or cry, which is what I wanted to do. It felt like having a door slammed in my face. I am really struggling and am not really sure what I can do now.
I'm so sorry that your pain is so bad. I pray that someone on this blessed site gives you some advice. I am relatively new to this affliction so I don't know how I can help, but I will pray Ruth13.
Ruth, make an appointment to see your GP, tell him again that you are at the end of your tether and cannot possibly wait several weeks to gain some help. Ask him to call a neurologist at the nearest large hospital and ask for advice in interim help. Call the secretary of your ENT and beg her to put a rush on communicating with your GP as you are in extreme pain. I am British too and my GP had never seen anyone with TN before me. S o he asks for immediate help if I experience pain crisis. Sometimes it pays to be stubborn and dig our heels in, we are the only one who ever actually feels our pain, you deserve better than you are presently receiving. Keep in touch.
Jackie - I will definitely go back asap, and thank you for your suggestion as I really didn't know what more to say to him today. I will keep trying. It does help to know that I can come here and get support.
I am new to this site, but have type 2 TN as well, and my GP doesn't even know it exists! I've had to be very pushy to get results. I know you are in dire need right now, and the only thing I can think of that helps me even a little bit when I can't take meds (due to work) is Anbesol or Oragel. I'm not sure where your pain is, but mine is along the lower jaw, and when I apply numbing agents to the inside of my mouth as close as possible to the pain area, I have a bit of relief. I'm not sure that it gets deep enough to affect the nerve, but at least it feels different for a while, if you know what I mean! Sometimes the boring pain is just so mind-numbingly annoying and frustrating, that just a hour or two of a change is a help, mentally. I also just recently got a prescription for a stronger lidocaine spray yesterday, and actually logged on to this site to thank the person who suggested it to me! I just took a 'hit' and for half an hour now, it's been almost blissful. I know it's short-lived, but it's enough to keep me sane. Other than that, I just encourage you, like others here, to get the ENT to send the letter ASAP. I've found with my useless GP (who is my 4th, by the way!) that bursting into tears often makes him feel uncomfortable and more willing to believe me. I really believe that unless they can see in your face how bad you are hurting, their tendency is to think you're a druggie. It's very insulting and unfortunate, but persistence is key. Another drug I have found useful, that is not a narcotic, is Flexeril 10mg, also known here in Canada as Cyclobenzaprine. It's a muscle relaxant, and for some reason it helps my acute periods of pain, especially late at night when it's built up over the day due to talking. I hope you can get some relief soon! Good luck.
Thanks everyone for the comments. The pain has eased a little so I got several hours sleep, which means I've got a bit more energy to go and get this sorted out - I'll be on the phone as soon as the ENT's office opens.
I have the letters sorted - the clinic is 2-3 months behind with letters but I'm on the fast track list. Unfortunately my gp is not prepared to take my word for how much pain I'm in and is flatly refusing to do anything more until he gets the letter. He appears not to believe my report of the diagnosis, because he has treated someone with type 1 TN and their pain was completely different to mine. He wouldn't even listen to me this morning - I can't work, I'm drinking with a straw because it's more comfortable and every movement hurts my face a bit more, but all he said was that he'd refer me to the pain clinic when he had all the information. He still seems to think that that is enough.
Wow, what a nightmare doctor! Is there any way for you to see someone else? I understand how when you're in pain, it's the last thing you want to do, calling people and talking about it over and over! I ended up writing a 'report' of sorts, with the dates of procedures, symptoms, when they started, when they changed, who I've seen, meds I've taken. While it took a while to compile, it's so easy now to add to it, and when, for example, I saw a neurologist this year finally, I gave her the three pages and didn't have to tell it all. Again! My GP only knows about typical TN as well, and the first time I met him (my good GP prior transferred to another province) after 20 minutes he told me he thought my pain was psychosomatic. I was flabbergasted and told him what BS I thought that was, considering he just met me. I'm sure I'm not his favourite patient, but there is no one else for me to go to in my small town, and I just had to keep at him. Yours sounds even more stubborn though, and if there's any way you can switch, you should do it for sure. With mine, I almost printed out medical journals talking about ATN! As hard as it is when you're suffering, you are your own best advocate. It would be great if someone could just believe us and tell us exactly what we need and be willing to help, but more often that not that is not the case. I mentioned in another post about muscle relaxants - do you think he'd be willing to give you even 10 pills of something like that to try? It's not a narcotic at least. Good luck, and keep fighting!
First, CALL the ENT and tell them the situation. Ask them to either prescribe to you or get that referral over to your GP's office STAT! Sometimes just a phone call doctor to doctor will help.
Second, can you try a new GP? I don't know how your insurance works, but you really should be seeing a neurologist. Appropriate meds are anti-seizure medications and sometimes it takes a combo and seeing what works for you. Your GP and this ENT do not sound like either are knowledgable about TN so you really have to get to a neurologist.
If your pain gets extreme go to the ER. Red (researcher up here at TN site) wrote this attending physician itinerary for if you need to go to the ER and are in too much pain to describe...
Don't accept less than decent treatment. You need a neurologist and proper meds. This condition is a monster.
I am sitting here trying to distract myself from a bad bout of pain and looking at you in empathy, I think we have all had our struggles with the medical profession. You really need to start on an anti-convulsant (usually carbamazepine/tegretol first and usually a good reaction to that is an indicative diagnosis of TN). We have all struggled to either find combinations that work or pain killers that will work/someone will prescribe. I know none of the GPs I saw will touch muscle relaxants without you seeing a neurologist first :/ If the pain gets bad enough go to the emergency department (I too am luckily in a country where it's free and I have taken advantage of it - been there twice now!). An emergency doctor may be able to start you on something and I am sure it's just like our system, your GP will get a copy of your diagnosis and treatment there. I was lucky enough to see someone in an emergency department that immediately recognised it and whacked me straight onto oxycodone without batting an eyelid, I will be eternally grateful to her for the correct diagnosis and the empathy she showed me - I wasn't going mad! So there are people out there who can help, I hope you find some decent help soon x
Having had a bad few days I ended up at the emergency department of the hospital on Saturday. They were brilliant, gave me something to help immediately and muscle relaxants to help for a few days until I can get back to my gp. They did a number of tests that they thought the gp should have done already and also found a copy of one of the letters from the ENT, which they have given me. They have also explained what the gp needs to do now and the doctor who treated me has provided us with his contact details if the gp has any questions. The main point of it was that he needs to get the right tests done and then refer me to a neurologist who will actually have some knowledge and experience of TN.
I am back to the gp tomorrow with my boyfriend as back up - I didn't take in all the details of we were told at the emergency room between the pain and the medication I was given so he is coming along to make sure that the gp gets all the information. I was so grateful for the staff at the emergency department who understood the problem and made sure I was seen quickly. And I have now had 2 nights where I have actually got some sleep, as well as having much less pain, so things seem more manageable. Thank you all for your support and advice.
I'm so glad you have some help :) Seems emergency doctors are a lot more experienced (I guess GPs can be rather sheltered while an emergency doctor sees anything and everything!) :)
Can you go in person to the ENT and pick up a copy of the letter? Call them and tell them your situation. Then take the letter in person to the other Doc. Be a squeaky wheel and call daily if necessary.
I'm so happy to hear you are having less pain and getting sleep! Yay for the ER doctors getting things figured out :)
Take care and stay strong!
ruth13 said:
Having had a bad few days I ended up at the emergency department of the hospital on Saturday. They were brilliant, gave me something to help immediately and muscle relaxants to help for a few days until I can get back to my gp. They did a number of tests that they thought the gp should have done already and also found a copy of one of the letters from the ENT, which they have given me. They have also explained what the gp needs to do now and the doctor who treated me has provided us with his contact details if the gp has any questions. The main point of it was that he needs to get the right tests done and then refer me to a neurologist who will actually have some knowledge and experience of TN.
I am back to the gp tomorrow with my boyfriend as back up - I didn't take in all the details of we were told at the emergency room between the pain and the medication I was given so he is coming along to make sure that the gp gets all the information. I was so grateful for the staff at the emergency department who understood the problem and made sure I was seen quickly. And I have now had 2 nights where I have actually got some sleep, as well as having much less pain, so things seem more manageable. Thank you all for your support and advice.
I can tell you that I have the pain in my upper teeth and lower jaw as well as a pain that feels like an earache, I cannot ease the pain completely, but I do lower my pain bar a few notches with a heating pad. I lay my face on it and watch one of my favorite shows. If I am close to going to an ER because of pain, I take an Oxycodone 10. I am also on carbamazepine 2x a day. I hope the heating pad works for you also. Good luck.
Having been back to the gp I now also have carbamazepine to take in the hope that it will reduce the likelihood of such severe flare ups in the future. Having given him details of my visit to the hospital on Saturday he has also said that I can go back to him (rather than the emergency department) for additional help if things do get this bad again. Despite the lack of help last week he does seem to have reacted to the phone call and my referral to the pain clinic is already in the post. I am feeling much better for a few days with less pain and more sleep (have been sleeping about 14 hours at a time since Saturday), so hopefully this will help, and have a follow up appointment to discuss how I am getting on in 3 weeks. I feel a lot more hopeful about finding a longer term solution as well as grateful to the people I saw at the hospital who were all helpful and knowledgeable.