My partner has recently been diagnosed with TN. I have been trying to learn as much as I can. We live in a small country town and the doctors are hopeless. I asked for a referral to a Neurologist only to be told “they’re difficult to get into”.
I hate seeing him in so much pain and I cry when I read the stories of long time sufferers and hope that wont be us…
He didnt respond to Tegratol at all, and hasn’t responded to gabapentin yet either. He is taking high doses of OxyContin just to get by… He is depressed and feeling like a zombie from the meds.
I don’t know what to do… I try not to let him see me cry because I know I need to be strong for him… He caught me out last night and I knew then that I need to be stronger here.
you have to insist on seeing a neurologist... simple as that. A G.P. can assist you in your pain management etc. but surgical options are available to TN sufferers and that alleyway is opened up by seeing a neurologist who will conduct an MRI and then, if something can be done, onto a neuro-surgeon. There are also other medications he could try and that is why it's worth getting into see an neuro. Sometimes the wait can be 3 months, but this is unfortunately how the system works here in aus/nz ;-(
wishing you both all the best. Read your story and had to offer some help ;-)
I agree with Luke and Janelle, insist on a referral from your GP and ask him if he can get an early appointment for your partner. If he can't, make the appointment yourself and stress how much pain your partner is in and could he be put on the cancellation list. I have done this myself on a number of occasions and have nearly always got an earlier appointment.
My husband feels the same as you, but just by being there and acknowledging that you understand the level of pain he is in, will help. I often think that people don't realise how painful TN can be. Also let him know that there are numerous medications he can try and he will find the one that works best for him. It can take a while for medications to work, sometimes weeks, so I know its easy to say, but be patient.
Surgery not an option for me, but I have definitely found relief by the combination of meds I am on now.
I take 600mg am and 450mg pm of Trileptal and 50g Endep at night. Don't despair, there are quite a few different medications he can try. My neuro told me its really trial and error working out what works for each individual. It won't always be as bad as it is now.
When he gets an appointment, don't leave without making a follow up appointment. Even now I always make an appointment for a few months time just to keep in touch and discuss options.
Hi, I am sorry to hear about the pain that both of you are in. I was diagnosed with TN nearly three years ago. I have just been through a horrendous breakthrough of pain and it is very difficult on the family as well. My husband just wishes that he can help. What he does do for me is he brings me a hot water bottle. I have always found that the heat helps with the pain and gives me something else to focus on. It is said that if the pain doesn't respond to Tegretol, that it may not be TN. I think this may be worth considering. Has he had his teeth checked carefully? Has he had any work done recently such as filing replacements etc? I have been doing a lot of research into dental issues and TN, and it seems that there are a lot of connections that are not always considered or known by doctors, such as allergic reactions to metals in restorations in teeth (such as Mercury) or ligaments being left after extractions.
I have not managed to get an appointment with a neurologist yet. It seems that here it is acceptable to be drugged for the rest of your life! After the recent session I had, I have got an appointment with a general medicine specialist some time in the next 6 months! I have been waiting 2 months now! I am also on a 6 month waiting list for an MRI and I won't get the appointment until then. I can't go straight to a neurologist, as we don't have one here apparently! We have been so stressed with the constant horrible pain and the inability to get help! You do have to keep going back and back to the doctor. It has been almost 3 years for me, although some of that time the neuralgia was reasonably under control. We are now investigating the possibility that I am reacting to the amalgam filings in my tooth on the side where the neuralgia is as I have had a severe allergic reaction to something on the same side of my face which is just settling now (had the filing replaced). Just an idea.. Good luck
I am 14 years into this and have undergone an MVD or Micro vascular Decompression
This was in 2006 and I was much like your husband BUT my ex was not a caring person. Note The EX part.
It is slowly wearing off now but not nearly as bad as pre op. (I am 42)
The MVD did help a great deal but not 100 % pain relief. Much much improved
I am on 4 drugs. It took a long time to get the mix right.
Its a long road but it does get better.
Few Medications to ask about (Australia)
Eplim (antiepiltic)
Endep (Triciclic anti depsressive) Note does work on TN.
Topomax
Now there is also something I sugesst you try ASAP. You can get this from the chemist without a script
Lignocane lotion. Note 5% not the lower 3%.
put it on the face and it will numb up and it works wonders after a while. also around teeth and gums.
Well worth a try.
The one I got is Xylocaine 5% ointment 15 g from astra zenenca
Check all phamacies and see if they have it and give it a go!
This has made the last two months bareable for me. If i get a bad stretch I put on all over my affected area nad it goes numb and I forget about TN for ages!!!
I think you partner is lucky to have you.
I also would From my perspective say that if surgery was offered and his quality of life is that bad then it is a very valid option. There are risks but they are offset by the TN complications.
Simon
BrookeyLee said:
Have any of you found relief or undergone surgery?
Brookey, there is a great deal of information on this site for partners and significant others of TN patients. Start with the fact sheet featured at the top of our home page. Then you might find help in an article called "Coping With Crisis", under our Face Pain Info tab. If you want to talk with other patients in Australia or New Zealand, there are several face-to-face support groups of the Trigeminal Neuralgia Association (TNA) in major cities. I'll dig them out for you if you want a point of contact.
I totally understand where you are coming from, my mother has just recently been diagnosed with TN. We live in a small town and we were just lucky enough that when i took her to the Doctor there was a Locum on knew straight away what it was.
The meds she has been put on have eased her pain but now she cant get out of bed because shes dizzy and feels sick. Shes so angry because she cant do anything and feels useless. I hate seeing her like this its so upsetting, i go home to my family at night and cry.
Im so glad i found this site, now i have some hope that i can find more info and maybe get her the help and proper meds she needs.
How do you go with lyrica it makes me very dizzy i am now on a very low dose and it does not hold the pain can. You tell me about the neuro surgeon you recommend mr bhadu why you think he is good as i am looking for one
I love lyrica. i was on 300 mg a day but now down to 150mg before that I was on the maximum does of gabapentin and lyrica. It is nice not taking tablets all day. I found that to be extremely bad for my happiness. Constantly being reminded that I have TN by having to have tablets.
Why I suggest Mr Kavar is because he is very experienced with TN. He understands the complexities of it and knows that it is tricky and painful. He does not make rash gung-ho decisions. He has done MVDs on patients who have shown no evidence of any reason for TN on x-rays but performed the MVD and found rather large compressions.
I work in the medical industry and see and read a lot about TN in my job. He is the only person I would go to.
Thanks for the prompt reply i also work in medical industry so have been looking for ages i will take your recommendation and ask the gp for referral tomorrow by chance can you recommend a gp i am in yRra glen and am trying one tomorrow i also have an appointment with a gp next week in camberwell iggy soosay i am new to melbourne and have had bad experiences with gps so looking for some pne honest who knows about this condition
Yes , it is very hard to find a GP that knows about TN. I do not know of one in Yarra Glen i am sorry. I have one I go to who doesnt know much about it TN but is lovely and interested in helping me. I also have a GP down the road from where I live who I go to if I am too sick to make it to mine. He scoffs at TN in a really belittling way. Ho hum. I cannot recommend a GP I am sorry but I would recommend a neurologist that also has interests in MS as it is common in MS patients to get TN.
or
Mr Ronnie Freilich is a Neurogist who knows a lot about TN. He is not my neurologist but I would highly recommend him.
I just wanted to add, that I disagree with Flipper. Taking oxycontin in a prescribed way managed by a pain management dr or your physician is safe. I think Flipper has read stories about abuse maybe rather than safe practices. There are many articles on the net relating to this issue. If you search the net for “long term use of oxycontin safe ?” you will find 100s of pages related to this. Again I think flipper is thinking of abuse and the bad name opioids are given in pain management.
Good luck to you both tomorrow. I can recommend drs in Sydney, as I’ve been fighting ATN 5 years. Message me if you are willing to consider Sydney, but a warning they are very expensive as they are the best. I noticed a huge difference between them and the other 10 or do neurologists I’ve seen in Melbourne and Brisbsne.
Thanks
Luke, I think the GP in question should be referring the patient to a specialist to further investigate the pain. Instead of trying to bandaid it with oxycontin.
Saying it is too hard to get into specialists is just a fob off. Sure if you want to get seen at an hospitals outpatient clinic you may wait a while but a private Dr there shouldn't be the same kind of wait
Personally I think that oxycontin should be initially prescribed by a specialist with repeats and supervision from a GP.
That is just my opinion, i realise that others will not agree
I agree Flipper oxycontin can be very useful but t is not good enough that GP's will not refer on as most of them manage the situation poorly and the patient become more isolated overwhelmed by the disease process if it is not properly managed and they are not given a comprehensive assessment to establish the types of neuralgia and then given a choice of treatment options the best people to do this are the experts!!