I want to be well

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HI ALL

Oh my...TN pain. Of all the things to have, I didn't want rmy gp to diagnose

This. Where does it come from? They can't tell you. When will it go? 3 months the gp says. Now I could say thank goodness for medication. I have

Been given tregetol 100mg x3 times daily, increasing to 200mg. I took 100mg twice through the day and drank my tea through a straw and was confident tregetol had the pain under control. I even sipped the tea on the pain side just to prove it. I was in bed with my toes curling wondering what had

Gone wrong.

I immediately Increased the dose to 200mg and went to bed.

So far I am day 4 on tegretol at 200mg x 3 daily. My world is fuzzy and my brain is slower. I'm waiting for an mri scan as I have woken twice now with loss of sight in left eye. Only lasts a few minutes. . Has anyone else had this symptom? I'm 52 this year. I work in primary school. I need hope that I will get back there. Having next week off to get used to the drug and pain. I'm also having accupuncture. It's Friday night and instead of a few glasses of vino to look forward to, I have 200mg of medication that makes my tongue numb. Thanks for reading x

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12 Replies

  • Posted

    Hi there,

    I just read your message and I wanted to send you my commiserations and some support.

    I too got suspected TN only weeks ago and I too am struggling with the reality of this awful condition. I'm 52, like you and am waiting for an MRI scan. I'm currently on 3 x 200g + 1 x 100 Tegretol which I'm probably going to oncrease to 4 x 200g as I'm still getting electric shocks hen I eat or speak.

    I haven't had loss of vision in one eye although I have had bad side effects from the Tegretol.

    Your GP needs to refer you urgently to a neurologist once the MRI scan comes back. It really needs a neurologist to do the diagnosis and not your GP, I would say. Once you know for sure, you can decide the way forward.

    I'm in the pub nursing a pint of lime and soda and heartily wishing I had a glass of red!

    Can I suggest that you look at the Trigeminal Neuralgia Association website? It's very helpful and will give you lots of help and support. You're not alone.

    Sasha

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    • Posted

      Thanks for your reply. Family have been supportive but have no idea what TN feels like. I still don't believe I have it. I have the usual aches and pains but nothing like this pain. I have children and had no pain relief when I had them.

      I've turned into a moaning so and so. But I'm a positive person in life. I'll keep you posted. Stay positive. Thanks for responding.

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  • Posted

    I think what you are taking is the same as gabapentin.  I am working my way off of that stuff right now, and after 2 months, I never got over being dizzy, and groggy headed.  I want to start off by saying I was diagnosed with TN or cluster headaches (they are so close to being the same thing) by my doctor, but he could not say with any accuracy which one I suffered from.  .  I was told if oxygen helped with the horrible attacks, then it was cluster headaches.  After denying that it could be something as simple as a "cluster headache", I read up on them, and was surprised to find out they are absolutely as painful as TN.  Especially the part about how the attacks happen while fast asleep.  And.....TN attacks don't last for hours like cluster headaches do.  Anyhow.....My doctor wanted me to go to the ER, or walkin clinic the next time I had an attack, and to ask to be put on 100% oxygen at 7-10 liters for 10 to 15 minutes to see if that helped.  It had to be done as soon as the attack started, and I lived 30 minutes from the nearest clinic.  I found a tank of oxygen for sale on Craigslist, and i bought it.  It was worth it to me to find out once and for all what I had....and if the oxygen helped....GREAT!  It was a total miracle!!!  After less than 10 minutes on oxygen, my pains were gone!  With each attack, it took less and less oxygen for me.  Sometimes it was only 3 minutes.  Now, I was still taking gabapentin..this was just the break-through attacks.  It doesn't matter whether you have CH or TN, the surgery is the same for both, because it's the same nerve that causes both of them.  Now that I have oxygen, I would never consider the surgery.  I consider myself very lucky that the cause of my attacks are not TN, because oxygen does not help with TN attacks...or so my doctor says.  My oxygen cost $15 a tank, and a tank was lasting me about a week.  I have not had an attack in 6 weeks or more.  I was told a cycle for cluster headaches can last for a few weeks up to 12 weeks,  Mine lasted just about 13 weeks, and then they were gone!  If, or when it comes back......I'm ready with my oxygen.  I was completely traumatized by these attacks  when they started, and nobody could tell me what it was.  I went to the ER 4 times, my regular doctor, the dentist, and then I tried an ENT because I could not get in to see the neurologists for several more weeks, and I was desperate.  The ENT gave me gabapentin because he was certain it was TN, but when I saw the neurologist he is the one that brought up it could be CH.  My worst pains were in my upper front teeth, nose, and my eye!  I had lightening streaks that seared the top of my head.  But...the eye was the absolute worst.  I am so thankful to be over  that!  One more thing.....I could not have any alcohol when I was having these attacks.  Even one tiny mixed drink brought on an attack.  Watch out for that!   

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    • Posted

      Thanks for sharing your story. TN seems something made up. I don't know anyone who has it and nobody has heard of it. Hope and pray it goes as quick as it has come. Not happy taking tegretol but have no other solution. Bloods are normal and are waiting for mri which should only be a few weeks.

      I feel drunk most of the time so alcohol is not really some thing I miss. Taken my first lot of tegretol and feeling spaced out. Take care and appreciate your reply.

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  • Posted

    Hi there, I've woken up way too early so thought I'd just drop you a line to say that I hope you're ok. Do let me know how you get on with your diagnosis and treatment.

    I do understand how isolated one can feel as there's nothing physically wrong for people to see - like a broken leg etc - so they don't really understand. Also, if you're on the drugs and don't have an attack when they're there, they assume you're fine.

    I think that if you're having vision problems, then you really should let your GP know asap. You don't want to mess around with your sight. If it were me, I'd be onto that straight away.

    If you haven't been advised to already, do get your bloods done for liver and kidney functions. I'm doing a repeat test next week to see how things are going on that front.

    Like you say, it's important to stay positive, but that's difficult at times - especially when the pain hits.

    I hope you get some rest during your week off. I have to say that I'm curious as to why your gp specifically said that things should only last 3 months as that's the first I've heard of it.

    Anyway, do let me know how you get on and fingers crossed for you.

    Sasha

    I

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    • Posted

      Morning sasha

      I woke up late for a change. I've had my bloods done and all came back normal. Do you work? I have a busy job and work in a primary school. I cant imagine being off for weeks. The gp said I will get used to the drowsy feeling and be ok to go to work. Feel angry today. The pain has gone 90 percent. That is a relief but living life dizzy was not on my agenda. I suffered with endometriosis most of my life. Just got used to having no pain and now I get something nobody has heard of. I feel like it's not me that has this. Early days I suppose. My private scan could have been today but nhs waiting list is 2-6 weeks so that's not long to wait. Hubbie says if I get another eye blind episode we are going private. I agree. 400 pounds is a lot but health is important. Have a good weekend. Thanks for your support. Take care.

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    • Posted

      Morning

      Not sure if my earlier message was sent. You are new to symptoms like me. Do you work? Gp says I should have been ok to go back next week but I have a busy job in a primary school. Got says my body will get used to the side effects. I'm not so sure. Bloods are normal. Scan wait us 2-6 weeks so not too long to wait. Feel angry today. Gets in the way of what I want to do in my life. Having accupuncture too. See how that goes.had endometriosis most if my life and just getting used to no pain and I get something nobody has heard of. Oh dear. Hope it just goes away like gp said. Mmm not sure where she got that from.

      Hope you enjoy the weekend. Keep you posted.

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    • Posted

      I'm just curious, but do your attacks last for seconds to minutes, or for hours at a time?  Do you notice it occurs more during the daylight hours, or at night?  Don't expect a lot once you get in to see your neurolgist.  I had an MRI at the emergency room, and sinus scans at the ENT, so my neurologist only asked me questions, and upped my gabapentin to 300 mgs, 3 times a day.  I hope you do get used to your medication and it stops making you dizzy, but I never did.  No way I could have driven a car.  I'm 68 years old, so maybe age plays a part in that.  I can tell you what helped me to come to terms with this disease....watching Youtube videos of people having attacks of TN and cluster headaches.  This one woman was having a TN attack, and she screamed, begged, pleaded, and cried out for help.  When I saw that.....I was certain that was what I had!  I cried like a baby watching her.....she used exactly the same words I had used during my attacks. Only difference, she counted 1-2-3 and I didn't do that.  Then, I found a video of a woman having a cluster headache attack, and it was exactly the same as the TN attack.  This woman would pound herself in the head......I didn't do that, but I would have my husband take his open hand and bounce the fatty part next to the thumb and wrist of his hand along the streaking, burning area on top of my head.  Last thing.  After having an attack, my eye would be nearly swollen shut.  I would have only a slit where I could see out of that eye, but the other one would be fine.  My husband said that whole side of my face was swollen. Please go to youtube and watch some of the videos.  I thought it was very interesting to see the different attacks people have.  For some, it's only a second or two of pain, but happens hundreds of times a day.  For some it's minutes, and for others....much longer.  Both conditions are called "suicide headaches".  I'm not ashamed to say I was one of those people that had reached the end of their rope.  The ENT that semi-diagnosed me, saved my life.  If it's possible to suffer from PTSD with these attacks, I had it!  For weeks, and weeks after I was on medication, I still broke down and cried when I talked about the pains I had suffered.  Nobody can understand the degree of pain we suffer unless they have experienced it.  Nobody........  

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    • Posted

      Oh bless you and thanks for reading my story. Hope it's a story with a happy ending. I am both accepting and in denial. I have s busy life and have worked hard to get here. I've had pain all afternoon today. It's when I eat or drink anything it's at its worse. The drugs are helping but the dose I don't think is enough. I drive and go out and enjoy everything life gives you....PAUSE

      Life will be very different if I continue to suffer. I have had 2 episods of waking up with no sight in my left eye. Will see what scan sats. I'm hungry but dreading eating. Keep going and I will watch the utube videos. Take care

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  • Posted

    Hi,

    I'm a qualified nurse and am concerned about the loss of vision you have experienced. Have you only had the pain around the left eye/temple/forehead area? If so it is remotely possible that what you're experiencing is Temporal Arteritis (sometimes referred to now as Giant Cell Arteritis) or even Optic Nerve Neuritis. Loss of vision is not associated with Trigeminal Neuralgia but is a complication of both of the aforementioned conditions. You should go back to your GP and tell him/her about the vision loss at the earliest opportunity. 

    You should be referred to an appropriate specialist to have a biopsy of the artery which is affected in GCA and if Optic Nerve Neuritis is suspected then an Ophthalmologist is the specialist to see.

    If untreated or incorrectly treated loss of vision can be permanent. The Tegretol is helping with pain as it is acting on the nerve impulses but it will not treat either GCA or Optic Nerve Neuritis.

    I know this sounds scary and I apologise for this but it is important. I wish you well.

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    • Posted

      Hi there

      I have no pain in my left eye or eyes at all. It's all in my right jaw, teeth and cheek. I have read about this condition. My optician said It was an aura migraine at first but I had not developed pain in my jaw and teeth until the following week. I think the worst it could be would possibly be ms but I feel ok except for the right face pain plus the wonderful dizziness side effect of tegretol.my scan is marked urgent and I will keep you updated. Thanks for your help

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    • Posted

      You're welcome. I have bilateral TN in all three branches of the nerve, and I can tell you now the worst pain is in my eyes and over the eyebrows! My eyes were checked and are fine and the Neurologist confirmed the diagnosis. I also migraine with aura and Stabbing headache syndrome!! Life is good, lol.

      Best wishes.

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