Losing hope...

Posted , 9 users are following.

Hi...

I normally don't join forums... chat groups.... or even Facebook groups... but I'm really struggling today.

I've cried a lot. And I don't know why...

My TN has flared up a lot. I've had an attack a week so far, form February... mostly ones I can medicate for but two put me in hospital having to be sedated... not something I enjoyed.

For the past couple of months I've had headaches that keep me up, not like TN pain, or the aching aftermath, then I get so tired I slept for hours and hours. I also have Hasimoto's which is a thyroid disorder, and I'm one of the unlucky ones where the carbomazipen that I take effects the thyroxine usage so I can't take much or it will send my thyroxine through the roof and i become unstable. It's a constant medical battle.

I'm going to see my neurologist soon, in a few weeks, but I really can't stand these headaches... do you think it's a conflict of medications doing it? My GP thinks it stress and tension from having bad posture from tightening up in pain... I don't know... it's worse after exercising, I do yoga and Pilates to ease stress and exercise, but still have the headaches, none of my pain meds shift it, and I'm getting really depressed... I don't know if it's the TN or the headaches or the aching neck... yes add that to the list, and I feel like I'm a burden and in and out of the doctors all the time they must think I'm a pain in the behind... surely they must think I'm a loon but I just want to feel like me again... without pain although I have no idea what that's like anymore... I thought the pin in my face was the same thing everyone had, I though it was tooth ache, I've had teeth pulled... but when I got diagnosed with TN 11years ago I realised no one around me understood the pain I was actually in... after so long, people expect me to handle this alone, that I look well enough... as if hey have lost all empathy towards it, it's my battle to fight alone, and they don't seem to take it seriously, and how it has affected my metal state.... I'm lost, I don't know what to do anymore...

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9 Replies

  • Posted

    First of all my friend,never consider yourself a pain in the neck to a docor..you pay them,you are the boss so to speak,if they act anyway other then with care and respect go elsewhere,also their are more then meds to treat this look into gamma knife extremely non invasive and pretty effective,no knife involved,its laser,please google it. Please dont lose hope,look up videos on youtbe showing how people have broke free from the hell of it. Many hugs!
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  • Posted

    Hello GemLove,

    I'm so sorry for what you are going through.  The pain is dreadful and when I had it bad (thankfully under control at the moment) I just wanted to hide away.  As I'm retired it was easier for me to do that, I don't know how I would have coped if I was still at work.  Anyway, I have no advice to you except hang in there, and don't let anyone make you feel you are a nuisance - there is any answer for you - maybe the neurologist will be able to help.  I hope so.  Good luck, Heather

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  • Posted

    Hi, I personally feel your pain and like you I have never joined this type of group and I'm not on facebook, but this group is invaluable to help you realize that you are not alone. I believe that most of us have felt alone, like we're going crazy and hate to talk about our pain because it doesn't seem to do any good. You need to persist to get back to feeling like yourself! I was finally diagnosed with TN by an Occupational Therapist who I was sent to because they thought maybe I had TMJ which I didn't have but the OT said that she thought I had TN. When she read the description of TN, I cried because it perfectly described my pain. Like you I've had numerous teeth pulled, root canals to no avail and no one who treated me thought it could be TN. I still get angry about that. I had MVD surgery at Johns Hopkins in January. The TN pain is gone but I am still recovering from the surgery itself. My head feels tight but I'll take this any day compared to the TN pain. You need to speak up for yourself because non one else will. I hope you get some resolution soon and are pain free! Take care, Mary

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  • Posted

    This board is chock full of folks who did not give up. There is relief coming, but the time is not known yet. You have to dig deep and find it within yourself to carry on knowing that the light is at the end of the tunnel, no matter how far that is
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  • Posted

    Hi GemLove

    Really sorry to hear you've been in so much pain. We've all felt the despair you're feeling at some point. Just to check, have you had an MRI since experiencing these headaches? It might be a good idea, if only to find out if there's another cause. Have past MRI's, if you've had them, shed any light on the possible cause of your TN? Ask your neurologist to refer you for a thin cut MRI with dye contrast. Does your neurologist have experience of treating TN? It's important to find one who does. I find that GP's aren't much help in dealing with complicated neurological issues. They don't have the experience or the time, so I think it's important to find a good neurologist and stick with them.

    Do let me know how you get on.

    Sasha

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  • Posted

    I don't know all you're going through but man a lot i can relate to. I've been diagnosed with this for only 3 weeks but I've had rheumatoid arthritis severely for 15 years and I am 44 now. If you don't "look sick" many people will not see you as suffering. And I also feel like a loon and that they think I'm being dramatic.

    Well, you have to put out of your mind what others think because it's your suffering and only you will ever understand it, I. Have cried for wanting my life back so many times. If you haven't tried these, here are a few things that have helped me in small ways: I got a squishy pillow, neck roll and man it helps my neck a lot. I have a lot of neck pain and it never leaves. Also, I got a shower chair and a shower hose and ait under hot water as much as I can stand and it is not a medication and really helps the neck pain and the TN to a degree. It also relaxes me and helps me calm down when I am hysterical from pain.

    I wish you peace ans wellness. I am going to get a therapist because the TN and RA is making me lose my mind. Pain can take a toll on your mental health. You are not crazy, you are in pain and it's a crappy hand to be dealt. Carry on and keep searching. I hope you find that sweet spot. We all deserve to live better than this, my friend.

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  • Posted

    P.s. I don't join groups either but I've already read a lot of stories and wish I had looked for this kind of support sooner because it's nice to read stuff and go, "that's me!"

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    • Posted

      I definitely agree with you. I'm not usually a "joiner" of groups but it's reassuring to read about other people's experiences. The pain is just not explainable to someone that doesn't have TN. They may sympathize but they just can't possibly know the horrendous nature of it. The dread of an attack and the battle of side effects of the meds are a whole bag of  worms. I've got my first MRI next week and a neuro consult in about 3 weeks. We're all in this journey together I suppose.

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