TN

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I've been suffering TN for around 4 years but only found out 2 days ago it's long term condition. I'm in a flare up and struggling with the pain I rang my doctor and told them he said that we have to think about long term treatment I was in so much pain I didn't pick up about long term it wasn't until much later that I realised exactly what he said. I'm now on lyrica (pregabalin ) a low dose but it's making me feel drunk and feels like everything is a dream whilst feeling all the pain. I'm in shock to find out after 4 years it's a long term condition . Has any one got any coping strategies as I have 5 kids that I need to keep going for. I do have other conditions fibromyalgia, brain lesions belly pausey on the other side of my face so I'm on a lot of meds a mil tryptamine , butrans patch and and now lyrica. I really need some hints and tips to cope with the condition is there things I can do to help with the pain?

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  • Posted

    Hello

    Our Daughter was diagnosed with TN only a few weeks ago but we have researched it as soon as we were informed and knew from the outset that this is no easy fix and there is a very long road in front of us.

    As she is only 20 years old this is also very rare to have this awful condition.

    What we have found out that everyone is so individual with this condition and that you need to see a Neurologist to find out if they will refer you for a MRI scan to find out the actual nerve that is giving all the problems. Surgery can help some but not all. We have just got the emergency referal appointment for the Neurologist but it is not till the end of September, she also has a very busy life as she is about to start her final year at Uni to be a nurse so this could not have come at a worse time for her, not that there is any good time for this condition to rear its ugly head.

    However our Daughter has tried Reiki and it has helped her, we are not saying that it will cure or work forever but it has definitely helped relieve some stress and that appears to help her deal with the pain.

    If you have not yet seen a Neurologist then go back to your Doctor and try and get the referal they are not quick appointments to get but at least you will be in the system.

    All the best PaulĀ 

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  • Posted

    Paul is spot on...See your GP again and ask for a referral to see a Neurologist. All the drugs they use to help numb the pain also cause drowsiness. Some people find that after they have been on some of the drugs for a while their body adjusts and the drowsiness is less of a problem, I however have never found this to be the case for me. I have suffered with this, on and off(and increasingly 'on'!) for the past 15 years and have finally been referred to a neurologist, who I saw recently. I am now waiting for an appointment for an MRI scan and one from the pain clinic. Don't wait as long as I did, especially as you are obviously younger and having to cope with a family. I wish you lots of luck Yvette, my daughter also suffers from fybromyalgia so I know how debilitating that is alone. 

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  • Posted

    Hi Yvetteanne

    Sorry to hear of your condition but as hard as it is remember there are thousands out there like YOU with similar issues. This does nothing to relieve your pain and stress but it does mean than many other different sufferers and clinicians are also chasing a solution tooo.

    Keep researching the issues you have and while it is difficult to separate the individual problems and their treatments. I was on as much as 200Mg of Lyrica three times a day at one stage and was cast as the lead in a zombie movie without even knowing<grin>

    Stumbled about and head butted a china cabinet smashing one complete glass panel but suffered nothing but the wrath of my good wife. I am now off everything but paracetemol and oral morphine but my circumstances really represented a miniority of sufferers and my remission came as a free bonus after surgery for anothyer issue.

    I do however remember what the shooting electrical pains were like and when a THUMPING headache was a bonus day as compared to the usual crippling ones on most days.

    Unfortunately it is a long slow individual search for YOUR exact relief circumstances so keep at it. ASK Questions, don't be fobbed off by anyone regardless of their status. Keeep notes or references to what seems may help you, look for close alternatives when one medication cuases additional issues. Many medications have different reasons for extra issues. I can handle 10Ml oromorph a dozen times a day but was voilently sick when I tried a slow release morphine tablet. No doubt the combination of fillers and the like added to the issue but we tried, failed, and scratched that off the list. The search still continues even though I am 99% better than I was.

    My ultimate aim is to wake up one day and NOT HAVE EVEN THE SLIGHTEST HeADACHE for just ONE DAY. I can control them but that is not the same as NOT HAVING THEM.

    Search the world! There are excellent forums all over the world and in Australia, Adelaide in South Australia is the leading authority (imho). The US and UK naturally too but the rest of the world can't be totally free of the issues. LOOK and Learn and Learn and Learn some more and remember there are heaps of people out there to support you. Just ASK!

    Good Luck

    Baudy!

     

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    • Posted

      First Baudwalker I am so happy for you that you are practically painfree...how good is that!

      Secondly I must thank you for all your very informative postings on this site.You know your material and your advice is always sound.Also you are one of the very rare "patients" that is on this site to help others even though you are almost pain free ...once again thank you! Take care!

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  • Posted

    Hi yvetteanne,

    Keeping pain in check with meds depends on your body. I started on Carbama- zepine, work well, then developed a rash on hand and feet that took my skin off, now I have nice new skin. Then went to Oxcarbazepine, and it ran its course of 2400mg/day, stopped working. There is a list of meds on line that is a great reference guide. I am now on Lamotrigine 250mg ER/day, with 25mg IR mg in between attacks, up to 350 total a day sometimes.

    As for coping, I get out of the here and now part of life and go back to where I used to be. For instance, create a time line on paper of all the good times you have had, or think it and not write it down. Another is called "grounded". Have someone ask you many questions of where you use to go, and explain why. These are just a couple of things I do at times to get out of where I am. I hope this helped.

    We say where I live, "When the going gets tough, the tough BearDown".

    God Bless,

    Greg

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  • Posted

    As in previous replies,  do not let anyone fob you off,  insist on seeing a neuro specialist.   My husband only found out when the second attack happened that it was a long term illness.   As has been said,  check the forums available I think when u find out other people have the same problem it makes it easier.   We have been told that stress is the main cause,  but it has happened when he hasn't been stressed.   Just think a few years ago there were no computers or forums,  I think it's great that we can look things up and get lots of into on how other people are feeling and what the treatments are.   With all your problems I hope that you can get some relief soon.

    All the best,  Moira.

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