Can anyone advise me please?

Posted , 9 users are following.

Hi, I have been in excruciating pain for almost two years now and was diagnosed late 2017 with trigemenial neuralgia, this is affecting every aspect of my life to the extent that it is almost dibilitating me, I have seen a consultant several times now but keep seeing different ones who give me conflicting advice. I am on the maximum dosage of carbamazepine which is ineffective and the pain never seems to go away but my consultant doesn’t seem to be listening to me , I can’t brush my teeth, drink anything warm or cold, having a shower sets it off, the wind on my face sets it off , talking, eating , raising my voice, smiling even ?  I feel

Like I am getting messed around with the nhs consultant, I’m 37 and have always been fit and healthy , this and the tegretol have put me into a state of depression that I’m struggling to look past, I have had an mri scan and have been told everything looks normal, can anyone advise on what steps I should take? Any help would be appreciated? Regards, Martin 

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  • Posted

    Hi Martin....sorry to hear you are suffering so badly.....im at a very early stage of this having only been diagnosed yesterday. I have been prescribed tegretol and go back for a review in two weeks.

    I understand that there are other options for treatment including surgery....I am sure that there will be others here who will be able to help you more

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    • Posted

      Hi Catherine , I’m sorry to hear this but at least with a diagnosis your getting somewhere, tegretol worked for me initially and I had a few good months so I hope it works for you long term. Thank you for your advice and good luck. Martin 
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  • Posted

    Hi Martin,

    I am so sorry for your pain & discomfort. I am in the same boat. Same symptom, same pain & had no relief in site. 

    It went on for a long time. Then I read an article in a magazine about Turmeric. It is a spice or you can also buy it at the drug store. I started out taking 800 mg every morning. I was pain free for 12-14 ours at at time! 

    I still take it every morning. The only draw back was it didn't help me at night. I take Carbamazapine at night.

    They all work in moderation. If you use to much it stops working.

    I searched youtube when I couldn't sleep (sometimes days on end) There are a lot of helpful hints out there. Surgery is also an option. Someone on this web site has had relief with acupuncture. I have a date for surgery but am trying acupuncture 1st. My 1st appointment is on Monday. You don't want a chiropractor that took a week end course for acupuncture. When I went o see this guy he explained that it's a angry nerve. Your body needs to be retrained on how to heal it self. 

    I also couldn't eat, drink or sleep. Every time I would fall a sleep the pain came back so intense.

    A heating pad helps. Warm water helps NO SUGAR OR TOMATO'S OR ANYTHING WITH ACID!

    When I saw the neurologist he also suggested another pill. It is  (Have to eat when you take this) Alpha Lipoic Acid. I take 2,  200 mg if I am still in pain.  

    I'll post after my appointment on Monday. He said he should know that day if it's going to help. I have 3 appointment scheduled. Good luck & God bless you!

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  • Posted

    Hi Martin

    I feel your pain, I’ve had this for 13 years and it’s awful, the last few years it’s gotten worse and the gabbapentin isn’t working well. I used to use pregabalin but at higher doses as my neurologist was very knowledgable about medications and said the higher strength was ok but I’ve just found now that I also have ME that the side effects, especially the weight gain, are too much for me. Unfortunately due to your scans you wouldn’t be eligible for the MVD, I’m the same, but there are distructive procedures that you can have. If you google distructive procedures for TN there’s lots of information regarding them but you need to see a experienced surgeon. Also you can request to try other medications as lots of people find carbamazepine causes depression for them. There are other things that can help too like Accupuncture, but again find someone with experience in TN. Also people have found relief with crainiopaty (don’t know if I’ve spelt the correctly). Turmeric can give a little relief, I can’t take turmeric pills as they interfere with my thyroxine (always check drug interactions before trying anything new) but I’ve been making turmeric and ginger juice shots which help. The latest thing I’ve been trying is capsaicin oil after watching a video on YouTube, I’m waiting for the 10% stuff to come in the post from America just now that the guy recommended but my therapist gave me some homemade stuff that I’ve been using in the meantime and it’s helped a lot. There’s lots of things that you can try, google google google!! But always double check there’s no side effects or negative consequences to the things you try and try one thing at a time so you know what’s working. Sometimes we get lumbered with crap doctors and it sucks but that’s when you have to be your own advocate for your condition, try all the things that you can do yourself and if you want to try new medications look them all up, read about them and get a feel for which one you think might work better for you and insist they change you, unless there’s a very good reason not to go on the one you chose but then make them find a different one for you. I’m so sorry for what you’re going through. I was really struggling before finding the capsaicin oil and was meant to have the Glycerol injection and was very anxious about it but it’s now been postponed anyways. I was in beside myself with pain and thats when I started googling again and found the video and I’m so glad I did. All the best x

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    • Posted

      Thank you so much for your advice I will start researching some more I have almost settled on trying acupuncture as it’s better than apathy and a life on this medication if honest fills me with dread,  I’m so sorry that your suffering too, and sure you would agree that you wouldn’t wish this pain on your worst enemy. Thank you so much for your advice. Martin 
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    • Posted

      Good luck with everything. Just to say I’ve also had bouts of relief from homeopathic remedies but I get to see doctors who are trained in homeopathy in a hospital in Glasgow so I feel more confident in them as of course there’s so much speculation over it but there’s no doubt that I’ve had direct results from some of the remedies but it’s very hit and miss. I was sorry to read your wife is not being empathetic. It would be so helpful if she could read about the condition, if she could just read how many times it is referred to as the worst pain known to man or as the suicide disease she might begin to understand just how awful this condition is. Do look into the distructive procedures too though as if you’re saying you’d have the MRI tomorrow you might feel the same about those too. 

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  • Posted

    Hi Martin

    Sorry your Gabapentin not helping how much are you taking I was taking 900mg per day for 1 year it helped a lot with the pain. I had to get off of it and had to earn off as it is very dangerous not to follow weaning instructions. I was changed over to Taro-Garbamezaprine 200mg to start then up to 400mg per day I found it better than the Gabapentin it gave me my life back no more foggy brain, memory loss and feelings of depression. The next one to take is Aptiom it's a derivative of the Carbamazepine but works great for me too. But is very new so very expensive I take 600mg a day right now as it is cold weather here now.

    I live a more secluded life good friends come to visit and I have my animals too. I just lost my man as he wants me back to normal which I have no hope of ever reaching that again. But you have to try first to get a medicine that works for you the pain is unbearable I know. Once the pain is under control you live with your limitations. Hobbies are good do things that make you feel Happy!

    I also go to a Psychologist who helps me deal with my life as a hermit almost.

    My TN only affects my jaw area i had the surgery mvd it didn't work. I don't recommend it as I know it comes back in a few years. There's nothing that cures it yet. I have had it since may 2016 and lost my job I am on long term disability. I'm in ontario canada so we have to see neurologist for the medications I have told you about here.

    I hope this helps you it's one day at a time you have to.

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  • Posted

    Hi Martin - first of all, I understand what you are enduring.  When you had your MRI was it done with or without contrast?  There is a big difference.  Let me know if you would like further info.  Best wishes
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    • Posted

      Hi Marlene, my MRI was without contrast, (no dye injected ) . I would love further information if you could advise because if they can identify damaged or compressed nerve I would without question opt for surgery if that was an option. Thank you, Martin 
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    • Posted

      Hi Martin

      In regards to MRI mine showed nothing either and I had with and without contrast. My neurosurgeon says it is only done to elimate if you have a tumor or other they don't see the bien or artery that might be pushing against the nerve but as I said yesterday the surgeries are brutal and have little success or within 2 to 4 years the pain is back. I am checking into hemp oil and accupunture right now I've heard some people get great relief.

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  • Posted

    One year ago, I felt very much like you do now. Until last year, I was very physically fit, athletic and outgoing. Drugs do take the edge off the pain. One year later, I am now single after 20 years marriage. I live in another state. I am just starting a new job. TN changed my entire life. It is disabling. It is depressing. There are good days though. My advice is to hang in there the best you can. Note when your attacks come on and any potential triggers . Eat right and try to avoid triggers the best you can. Stress seems to play a factor with my TN. Cold wind on my ear will practically make me beg someone to put me out of my misery. Some people will never attempt to try and understand how you feel, why you're so moody, or why you're cranky. They won't understand why tears are welling up in the corners of your eyes. Try to stay as positive as possible. I wish you the best in your journey.

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    • Posted

      Thanks Eric, I’m sorry this has changed your life in such a way. Honestly I think my wife thinks I am taking the P**s and I’ve ytriwd to get her to research but she doesn’t seem interested and that hurts, I’ve not quite figured out all of the triggers, I have been keeping a diary though, thank you so much for your advice and good luck yourself. Martin 
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    • Posted

      Hi Eric

      I so sad for your wife leaving you I 've just had my partner leave me too. He says I'm dependent on pills treated me like i was a drug addict. It is hard for anyone who has not had this pain regretfully.

      I work with my doctors and yes eat well and healthy I have these gel packs that warm up when my pain is bad between medication and the heat helps a lot.

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  • Posted

    Hey Martin and everyone else on this board post. I see I’m a little late in joining this conversation, I hope you’ve got some respite. I’ve been there and still alive to tell the tale. In fact, I agree, carbamazepine effects wane in no time and surgery should actually never be an option. when I got hit by this demon 8 months ago, was going through the best phase of my life and then like a tornado turned my life upside down. I endured 4 months of 3rd degree torture but in a way it also got me to think about life in perspective. With doctors shrugging at my condition, I got down to do a lot of research and check online forums and that’s when I came across this FB TN support group. They were discussing natural ways to manage the pain and someone there recommended a kit that included ayurvedic, homeopathic and Nutraceuticals. Of course I was skeptical but more desperate and I followed the link. It’s this online help portal, and actually met this genuine ayurvedic doctor, he was surprisingly empathetic and very encouraging. I’ve been on these meds , there a several remedies in the kit a TN formula, OM formula, some 20 ayurvedic herbs such as asaparagus, bacopa, Glycyrrihiza, Hemidesmus, etc and I’m not kidding I’m on those remedies as I type and have been on them for the past 3 months and things have finally started getting normal. I strongly suggest try these multidisciplinary remedies, they even refund your money if you don’t get relief. 

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