Yesterday I had my first outpatient appointment with the neurologist that saw me as an inpatient when I was admitted with excrutiating neuralgia in my arms after being on Tegretol for a few weeks. I'm currently on gabapentin and amitrip. The medical consultant changed me onto gabapentin as she was convinced the neuralgia was a side effect - after about 5 days the neuralgia subsided after switching to gabapentin. The neurologist claims that gabapentin, even at maximum dose, is a "weak" anticonvulsant which is why I am still in pain on gabapentin. He also reckoned that tricyclic antidepressants are "useless" at controlling neuralgias. He recommended going off gabapentin and back onto Tegretol as the TN was well controlled on it and to see if the arm neuralgia was really a side effect (to which my husband hit the roof when I got home and told him - he said what are we just supposed to wait until I am admitted into hospital again) ... after only a few weeks on the Tegretol when I was admitted my liver function was very deranged and I was neutropenic (neutrophil count of 0.9) which scares the pants off me also. I said to the neurologist I am pretty much out of meds anyway and he didn't want to prescribe me anything so I have to pay to see my GP tomorrow :( I also asked him for a pain specialist referral to which he said oh they will just tell you the same as me, we will see how you go. EXCUSE ME?! How would he like to wish he could pass out from the pain for relief! I went in well prepared with all sorts of stuff to discuss/ask for which he told me as a nurse I had read too much :( I have never ever been made to feel so angry and despondant by doctor as a patient :(
I don't know what to do at the GP's tomorrow, the neuro was sending the recommendation of Tegretol to him. Meanwhile I have tegretol listed as an allergy on my medic alert bracelet because I had so many doctors agree that it wasn't a coincidence. Do I try it again? He mentioned sodium valproate too which is just as nasty to your liver. I'm scared of worsening pain titrating off and on a new drug and going through all those side effects yet again while my body adjusts (especially the Tegretol "brain fog" and sheer exhaustion).
Oh gosh -- I was told I read too much marterials also on one of my son's conditions -- REALLY?
Have you tried Lyrica?
Have you tried Lamictal?
Lyrica is not an anticonvulsant - Lamictal is -- but must be tirated up sooo slowly --- I know you probably know this!
I really wish for you that you could get a new start with a new doctor.
Why the hell would he send recommenation of Tegretol?
Can you talk to a pharmacist in the interim?
Is there no way to get another med that is NOT available where you live? What do people do who live near you that need Trileptal for seizures and such? It would be your second best option, I just don't understand why you have to go thru this
I think I need to take my list of medications used for TN to my GP tomorrow and go screw the neurologist let's try some of these. I also asked the neuro about baclofen and got a no from him as well as every GP I have seen. He said it's a last ditch effort (maybe he needs to look at all the people on here on it!). My pharmacist is a bit airy fairy ... he frowned at me when I came in for a repeat because I had titrated dosages myself haha (my GP said go for it as you can manage) ... my pharmacist is convinced TMJ is the root of all TN and told me to do TMJ exercises! Basically, here you are on carbamazepine or sodium valproate if you are epileptic, though in saying that I have seen the odd patient on keppra and topiramate. I have a big What is TN printout from the TN Association in Australia outlining everything that is used there (we should be fairly on par with them for drug availability) so I am going to take that with me. Myself and several doctors are convinced the tegretol put me in hospital, my MRI was clear and neurological exam clear so no lesion was causing the arm neuralgia, I am damn sure it wasn't coincidence! And my GP signed off the form to agree that tegretol should be put on my medic alert bracelet (it says "allergy penicillin & carbamazepine" and "trigeminal neuralgia". At least the neuro FINALLY agreed it was TN so I have a formal diagnosis ... was going to hit the roof at him if he said it wasn't (even in hospital he refused to concede I had TN, he reckoned more than a few seconds of pain means it's not TN?!). I knew I would have a battle with him, when I rang to confirm my neuro appointment I said can I see someone else and they said no see him first (I work for the same hospital system - I walked through my work to get to the appointment, I am well aware I am within my rights to ask for someone else). I guess at least I now know what it feels like to be a disempowered patient - maybe it'll make me a better nurse :/
If more than a few seconds of pain is not TN then I don't have it and many here have mush longer periods of pain. Ohhhhhhhhhhhh I get so fed up of so called medical professionals as your neuro messing with our heads. I am disgusted for you.
That’s is so frustrating. I’d like to smack that neuro in the face for you, what an absolute jerk! Since I had liver, kidney, and super messed up blood work from carbamazepine none of the doctors will even think about prescribing it again for me. You sound like you had an even worse reaction to it. His comments to you were inappropriate about your occupation and having " read too much up on". Who cares what your occupation is. You are trying to be an active member of your health team care, there is nothing wrong with that. I would fight to have a new and different neuro. Playing the fool with your care like this is unethical and could be perceived as medical malpractice. I am so sorry you went through that. Is there anyway you can file a complaint against him at the hospital? Really hope you have pain free or less pain soon.
I worked with a nurse friend to make a spreadsheet of all my meds - what, when, effectiveness, side effects, outcome. It seems better than anything else I've tried for communicating with various doctors, including some like this. Of course in my chart it probably says something awful and unfair, but the point was that they were not reviewing my records carefully or listening to me, so it was really on me to keep track.
If you don't have something like this, maybe try it and take it to your GP. I don't think it's safe for you to be on Tegretol and I think you should refuse. I have been down a similar road, and in the bitter end if something terrible happens you and your family will be the ones dealing with it. Sorry this is happening to you.
I went to see my GP this morning and he said he is not happy with the Tegretol recommendation and he said yes well he may not think it was the Tegretol but the medical team at the hospital did :) I told him that the neurologist didn't want to do a pain service referral and he said he would wait for the neuro's letter next week sometime and if he only suggests Tegretol or has no real plan of action then my GP will do a pain service recommendation himself and say that I've had an official diagnosis. My GP is sticking with the same meds for now even though the gabapentin doesn't take away the pain (at least it isn't as frequent or as strong as without it) and will add in/swap to a different anticonvulsant depending on what the neuro has said/hasn't said. Sodium valproate may be our next plan of action.
A spreadsheet is an excellent idea. I have had a pain diary but now I am having pain with no patterns or anything, though writing down when I had changes in meds or doses in it is helpful. The neuro said well how often is bad pain ... a few times a day, there's pain on and off all day frequently but I just make myself ignore it or take codeine if it's nasty. He reckoned any surgery is a bad idea unless there's hundreds of attacks. I feel a bit like I have been put into a "too hard basket" ... which is why I am hoping to see a pain specialist and there has been a doctor mentioned to me by the pain specialist at my work that is an ENT/ORL specialist who specialises in head and neck pain so I am going to try and somehow see if I can see him through the free public system somehow.
Oh man -- you have to have hundreds of strikes to consider surgery???? WTF??? has he heard of thousands of successful MVDs by prominent doctors? I hope your journey in the medical system gets easier going forward!
I have to ask, is that your real name? If so it's very pretty, if not, it's very pretty LOL
I have had a horrible day, I have downed opiates to try and numb things, I have all of about 5ml of liquid oxycodone and 2x 5mg capsules left over from prescriptions months ago ... today my GP said "have you got enough paracetamol?" (acetaminophen for you guys in the US) ... I said yes loads because I haven't touched them! I may as well be eating candy eating those things. My GP doesn't like to give out anything stronger. I just hope that someone will listen to the fact that nothing short of narcotics will help on a really bad day. I think being a nurse doesn't help as we are a group that is known for drug abuse :/ I think the next time I see any doctor I will ask them if they have ever wished they could pass out from the pain because then you won't feel it anymore - I have wished that many times.
Thank you ... it's not my birth name, I changed it legally 15 years ago when I was 20. If I can't be bothered explaining I tell people it's portuguese, if I can then I tell people that it's a Smashing Pumpkins song (which it is) ... it was kind of a nickname because I was a huge Smashing Pumpkins fan back then and it kind of stuck. I liked it, I thought it was very "me", I had moved out of home and it was kind of like a new beginning. My birth name was Jo. That was it ... not Josephine or Joanne etc and people would assume it was and then I would have to go "No, it's just Jo" ... so I went from 2 letters to 9 lol! Much more out there like me and my personality!
Don’t do it!!! He is not hearing you, not paying attention to your labs, your concerns, won’t refer you to a pain doc…apparently because he knows everything…can you get a new neurologist??? I’m in the states and I’ve gone to three neurologists…finally this one listens. He’s treating you like a “case number” not a “human patient”.
I pray you gp is much more compassionate. I’m glad tegretol is listed as an allergy now. I hope that helps:)
Hang in there…you will find who you need. Keep pushing your needs!
Laurieanne
Ok sorry I didn’t read on to the rest of the responses before I replied. Now I have:) I’m so glad you GP is listening and agrees with you not the N@&^%(((& !!! I’m so sorry you’re in such pain.
My new neurologist suggested MVD for me. I’ll be consulting with neurosurgeon to see what he says. I’ve been a on Lyrica and gabepentin. both give me bad side effects. He said basically this is the way your life is going to be (on the meds foggy head sleeping, can’t work) or I can do MVD and get my life back. I was quite surprised because I thought he would just try me on another med. But I"m young…my kids are still young. I don’t want to live like a zombie anymore…and still have break through pain. So If My Insurance will let me, I’m going to do it.
Have you considered this option?
Hope you’re feeling better!!
I tried Tegretol and while I think it helped with pain, I ha terrible memory loss. I lost a lot of valuable jewelry. Needless to say, I got off that med right away. Hope you are doing better. Hugs, julz
Laurieanne, I know some countries have socialized medicine. My husband goes to Sao Paulo several times a year, but I forgot to ask him. Anyway, keep looking for a good doc. Remember you are the paying client. My first question whether it is a dentist or doctor I want to know if they have ever treated anyone with TN and if so, about how many. Hugs, Julianne
Porcelina said:
I have had a horrible day, I have downed opiates to try and numb things, I have all of about 5ml of liquid oxycodone and 2x 5mg capsules left over from prescriptions months ago … today my GP said “have you got enough paracetamol?” (acetaminophen for you guys in the US) … I said yes loads because I haven’t touched them! I may as well be eating candy eating those things. My GP doesn’t like to give out anything stronger. I just hope that someone will listen to the fact that nothing short of narcotics will help on a really bad day. I think being a nurse doesn’t help as we are a group that is known for drug abuse I think the next time I see any doctor I will ask them if they have ever wished they could pass out from the pain because then you won’t feel it anymore - I have wished that many times.
Thank you … it’s not my birth name, I changed it legally 15 years ago when I was 20. If I can’t be bothered explaining I tell people it’s portuguese, if I can then I tell people that it’s a Smashing Pumpkins song (which it is) … it was kind of a nickname because I was a huge Smashing Pumpkins fan back then and it kind of stuck. I liked it, I thought it was very “me”, I had moved out of home and it was kind of like a new beginning. My birth name was Jo. That was it … not Josephine or Joanne etc and people would assume it was and then I would have to go “No, it’s just Jo” … so I went from 2 letters to 9 lol! Much more out there like me and my personality!
I think the next time I see any doctor I will ask them if they have ever wished they could pass out from the pain because then you won’t feel it anymore - I have wished that many times.