My experience with TN since age 13 and need tips!

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I'm 18 years old and have had a form of this condition since I was 13! When the first started having this pain my whole body would shut down as sort of a defence system. It almost looked like I was having seizures. This happened many times when my pain would peak at its highest level. My parents would keep bringing me to A&e and I would be admitted! When in hospital as an in

patient the doctors kept telling my mother that children don't get TN and that it was all in my head (on my 3rd admission the doctor had me stay on the burns ward to show me what 'real pain' was) thankfully once I reached age 14, private doctors elsewhere out of the children's hospital would consider seeing me. I stared going to see a doctor who did some more scans and confirmed my condition and told me in fact children too can have TN. He started proforming  stelate ganglion blocks. These started to work and would take my pain away for about 65 days each time I would get one. I have had 28 of them since and would recommend this treatment as sort of a firefighters solution! As I progressed through school and exams started coming closer I started to look elsewhere for a more long term treatment. I was put in contact with another doctor who started DHE (dihydroergotamine) infusions on me. These take away my pain for about 4 months but the treatment can be toxic and therefore it can only be administered every 6 months. So you see my problem of this 2 month gap of extreme pain. I am stranded in this gap at the moment. I have been admitted to hospital for pain control and they have been administering morphine to me. I have my final exams in 2 months and am very worried that I will not be able to sit the . Does anybody have any tips to manage pain? All normal life has stopped for me and I am struggling to cope! 

Many thanks

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  • Posted

    Hi,

    I'm sorry you've been through so much and at such a young age. I'm a pensioner and I've had TN on and off for over twenty years. My Dr Diagnosed TN straight away just from small symptoms I gave her, but when the first lot of medication didn't work then she wasn't convinced it was TN. Strange. So after seeing a Dentist, I was cleared of any dental problems so my Dr had to accept it was indeed TN. So I can understand the differences of opinions between Drs.

    I see you have been put on Morphine as the only form of medication, ask your Dr about putting you on Trigeminal Neuralgia. It is the best medication there is, in my opinion, but there are side effects. I didn't like the side effects but once the medication settled down I was ok. I can't take them now because of my age they don't work, so I'm now on Pregabalin. There are other options you can consider such as operations. Discuss these options with your GP too. He/she should give you the options that are available. But as you are so young try the medication first.

    With some patients these are enough, other patients have had to resort to different operations when nothing else worked. Operations were not an option for me, but I guess I'm one of the lucky ones. There are so many different levels of pain with TN that with some patients on here they've tried everything and when they've opted for the alternative they've been pain free for some time.

    Good luck and let us know how you get on.

    Gloriana.

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  • Posted

    Hi,

    Sorry, I typed the name Trigeminal Neuralgia instead of the drug Tegretol (Carbamazapine). Well it is still early morning lol.

    Glorian

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  • Posted

    I hope by now the doctors have sorted you out.  I have recently had MVD and at the moment I am pain free. Operation Monday, home on Thursday bit wobbly but felt fine. 2 weeks after I am back at work normal (well as normal as I ever was) and Im an old crock of 59 so you should walk it.  Good luck with whatever you go with.
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  • Posted

    What is MVD? I don't think I've heard of it
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    • Posted

      I know not every insurance covers accupuncture, but I personally, would try that first. You might need to go a few times depending how you feel. It can bring the pain down significantly low. Which in my case, it's working, as I'm still in the process of recovering. The second thing is called dextrose injections to the area/s. I would recommend this first, but you gotta be specific on where the pain is. I actually did this one time and it brought the burning sensation down. I moved, so I didn't get a chance to try it again, but it did go down. This method does work, but the doctors won't tell you They will play dumb. You really have to do your research on this one, because not every insurance covers it.
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