Recently Diagnosed trigeminal neuralgia, advise/tips! Help Please

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I am 26 years old and was just diagnosed with Trigeminal Neuralgia. I have never followed or participated in a blog before so I am hoping I am doing this correctly. I just really need help, tips or anything at this time would be very helpful and much appreciated.

I was diagnosed with Trigeminal Neuralgia a few weeks ago. To keep it short, I had horrific (the most unbearable pain) I have ever felt on the right side of my face. I thought it was a cavity and after Xrays and exams I was referred to a Neurologist where I was diagnosed with TN.

I am having a very hard time comprehending how/ why I got this and although my family is supportive I feel no one understands what I’m going through and how horrible the pain can be.

One of my concerns is now the right side of my neck, back and arm are stiff on in addition to right side of my face having TN. The neurologist said it’s just my nerves acting up and there is nothing they can do. I really can’t live like this and was just curious if anyone else has had the back and neck pain on one half of their body and does anyone know the likelihood everything will just go away? Thank you for your help in advance.

Michele

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  • Posted

    Hi Michele,

    Has anyone suggested you see a physio or chiropractor? i am sure i read on the internet that it can help some people to lessen the symptoms and you seem a candidate given that you have the stiff neck and back. Its a thing i have not heard of before myself. BTW: i dont think there is a right or wrong way to participate. We all just try to respect each other and be helpful i think. Stay with us, there are some quite knowledgeable people in this group and we all have different experiences to share.

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    • Posted

      Thank you for your response. Someone actually did suggest a Chiropractor which gives me hope so I am going to try and make an apt as soon as possible. I am really happy I found this site as I started to fell very alone and depressed being diagnosed with this and no one really understanding.
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  • Posted

    You are lucky to be seen by a neurologist my GP and dentist diagnosed mine just had my 3rd flare up in 2 years this last one was the worst ever nearly passed out with pain and was sick, I have now been of work for 4 weeks although it's calmed down its still niggly It depends what flares it up I find hot water bottle helps but cold irritates mine just keep up with your medication x
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    • Posted

      Thank you for the reponse. My dentist told me she thought I either was going to get Shingles or have TN - and directed me to see the Neurologist. The pain is unreal and I wish I was able to take more time off of work. No one understood and couldnt comprehend why I wanted 3 days off of work due to the pain, so during the pain I would come into work sad
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  • Posted

    This damn TN is really a hard thing to determine and consequently hard to deal with. You just have to let it run it's course from day to day on the ups and downs and live with it in the interim. I am only taking a low dose of Lyrica supplemented with Tylonol every 5 hours. I'm finding out rather quickly that is not going to be the answer so am going back to the neuro guy for some options. I hope you get some answer's sorry I don't have any other than moral support.

    dick.

    dick

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    • Posted

      Thank you for your response. I take Oxcarbazepine which works but usually wears off within 4 hours. However, I dont feel the sharp pain I felt before using the medication, it's more or less just hurts to eat and constantly feels like something isnt right with your mouth but I will take that over what it orginally was. Moral support works great so thank you! It helps to hear from people that are going through what I am. It makes me feel less alone. I hope your Neurologist can provide options that are helpful for you. 
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  • Posted

    Hi Michele

    Good to hear from you. I've been suffering from TN on and off for the last 2 years and when I have an 'attack', I take Tegretol - almost certainly the drug of choice prescribed by most neurologists.

    I experience pain on the left side of my face, pain that runs along the jaw face and up to my cheek bones. These are 2 of the routes taken by the trigeminal nerve branches

    and is consistent with most sufferers of TN. I'm concerned, however, to read that you have pain in other parts of your body, namely the shoulders etc.

    May I recommend you see a physiotherapist - one who is proficient at diagnosis and is trained in acupuncture. The difficulty is finding someone who is good! There's no point in seeing 'any old physio or chiro'! Ask around, get recommendations, check a few out and pay for an initial assessment. If you live in Kent, I can recommend someone to you. Good luck! Colin

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    • Posted

      Hi Colin, 

      Thank you for your message. I am going to look into going the acupuncture route - as anything at this point is worth a try. I live in Chicago, IL and will ask around for referrals. 

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  • Posted

    I couldn't gong to work the pain was that bad I was on my knees, I was being sick, and high temperature due to pain. I haven't seen a neurologist, or been referred to one, but that's because I have only had 3 flare ups in 2 years and it's beingbdealt with underrated GP, if it gets worse they will refer me,mit was just a case of the meds worked but needed increasing, but people if you notice people are on different meds it depends what works for you, I'm on gabapentin paracetamol and Ibuprofen can't drivevon gabapentin as it makes me drowsy and I sleep. As said just had 3 or 4 weeks of work min that time I've had 3 visits to the dentist and 3 to the doctors. 

    I have arthritis in my neck and issues with my shoulder, I have just been referred toms rheumatologist as my GP thinks my TN and shoulder are all linked, but we will see, I totally know where you are coming from regarding people unfortunately they will never understand the pain unless they experience it themselves,, it's rare to get it on both sides I have had it on my right side but last 2 flare ups have been on my left side, I get pain in my forehead, left side of my face I have a different feeling in my leftvside of my face to right I get jaw pain teeth pain upper and lower jaw ear ache a he's just above my ear which is the start of the Trigeminsl nerve I think it's the ganglion and the nerve comes out of that 1,2,3 forehead upper jaw and lower jaw, 

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  • Posted

    Hi... I am so sorry for u... but There is alot y can do to treat this!!!!!.... i had surgery that caised mine long story short I have had it for almost 6 years and am 33... there are two types TN1 and TN2

    My TN is type two from damage.

    TN 1 is caused usually from blood vessel pushing on the nerve. I know I will get reviewed by the moderator but got to this site for info http://fpa-support.org/treatment-options-trigeminal-neuralgia/ They explain the types of treatment u can have amd what meds are available. .. the most common are tegretol and Lyrica. TN can push u to the brink especially at a young age but don't take one dr.Opinion as the answer. If I' did I wouldn't be living a reality normal life. If u have questions or can't use the link; Google TNA facial pain Association. It come up.

    oh and you need to search for a nuerosurgeon that treats facial pain. I am not knocking your doctor or anyone's I just have learned that you need to find the cause to treat it and sometimes it takes going to get other opinions......of u have questions I be happy to answer but do not want to overstep...

    Here is the link http://fpa-support.org/treatment-options-trigeminal-neuralgia/

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    • Posted

      hi!my TN is atypical due 2 severe damage & as far as I no the area I live in don't do surgeries, I'm not doing 2 bad at the min so if it ain't broke,don't fix it?!mind I'm 15yrs older than u & not a gud candidate 4 surgery due 2 my heart murmur,if I woz a horse I'd av been shot eh?lol! em x
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  • Posted

    Hi Michele82354,

    26 so sorry. Most of us get this 20 years later. Yes episodes can be outrageous like nothing else, but it is manageable with medication. You are on something?

    Your doctor is helping to find an explanation? Mine is MS, an annoyance to manage, nothing major now that I have the right medicine. So don't sweat it too much ok.

    eddie13

    Eddie13

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    • Posted

      Hi Eddie13, 

      The Neurologist doesnt seems to have answers which makes it more fustrating. I am having an MRI scan done this Friday - which I am very nervous about getting the results. I have epilepsy as well so I had an MRI done not to long ago and they said if there was something there they would of seen it but they want to do another one to double check. I try not to pitty myself because people have it worse but its just hard to grasp right now. 

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  • Posted

    hi!everything u describe is everything I felt,thought & goin mad at,u get used 2 the way u now av 2 live life & all the specialists u go 2 c & all the different meds u get,I no ow much pain u go through I av TNtype2 so I get pain 24/7,so u c there is a few of us the same don't panic 2 much u can always find sum1 on this site yeah? em x
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