I have been feeling quite poorly for some time now and feel that I am fighting a losing battle. Neurology have diagnosed trigeminal neuralgia for the pains I am having in my ear/eye /teeth and have tried a couple of epilepsy tablets which are very strong and makes me deadheaded but do not remove the pain. I can't have an mri scan as i am so claustrophobic even taking a table to calm me down will not get me go into one of those tunnels. The pain radiates from the top of my ear and I am sure that is where the problem lies. I am now stuck because I won't have the scan but have found that taking just one prednisolone really does help the pressure and reduces the pain, the doctor won't prescribe these for me and I am now out of them. They want me to stay on the epilepsy tablets but I am not having life when on these. I am waiting for an appointment with the neurologist and if I can't get any further I am going to ask for a second opinion as I feel I am just being left trying to cope with this dreadful pain every day and night. Does anybody suffer with this neuralgia and if so does anything work??I had the second part of my shingles vaccine yesterday and shivered and shook my way through the night with an almighty sore arm this morning. I wrapped myself in my electric throw to keep warm in bed and am hoping to feel a bit better later. Anybody else had a reaction to this vaccine.
I just hope I can start feeling better soon and live a little better. Hope you are all as well as can be x
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Izb1
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Iam sorry to hear you are not feeling well. My mum has trigeminal neuralgia. She had the same symptoms as you and also headaches and was diagnosed a few years ago and at the time she couldn’t get out of bed for about 6 months, she thought she had a brain tumour, but thankfully didn’t. The NHS waiting list for tests was too long and she went private and was seen by a professor at Queens square London. After many tests and different tablets she began to live a normal life again. She now takes Amitriptyline and she’s symptom free. I hope you can get some treatment and relief soon.
Than, you Issy, this sounds like really good news for your mum and so pleased she has settled down. I have Amitriptyline for my rheumatoid so may just give them go . I did wonder at first if I had a brain tumour as that is just what it feels like but after a ct scan nothing showed up so felt better about this x
Thank you Izb1. I can’t remember the dose she takes but speak to your Gp it might be worth trying them. My mum used to say the pain was unbearable. . I can imagine how you also feel after seeing mum go through it. Hopefully you will get better soon. They said hers was brought on by giving up smoking she had taken the drug zyban ( I think it’s banned now). Iam glad you didn’t have a brain tumour but I can understand why you would think that. Take care of yourself xx
Thank you Issy.I have looked this up and you can't use it if you have narrow angled glaucoma as it increases the pressure in your eye, blast I thought I had got something there but thank you for the input. I may need to go back to the eye hospital and ask their advice x
So sorry to hear your in such pain Irene and experiencing medical people who won’t listen. Do they know the pain you’re in? No they don’t. If pred works then why can’t you have it. Is it Gabapentin you’re taking? It’s very strong and one that Pete takes.
I have a friend who has neuralgia because of shingles and experiences extreme pain. She takes Gabapentin but not too often as she doesn’t like it. She too has just been left to get on with things.
See if you can get a second opinion. I think the shingles jab often causes a reaction. I remember Pete being poorly for a few days. Hoping you feel much better very soon.
Thanks Carole. I can tolerate Gabapetin very well but again it doesn't touch the pain. I was put on Tegretel and these made me very sleepy but still suffered with the eye pressure. 6 months later I was put on Oxcarbazepine which helped the pain but made me brain dead, Just couldnt get out of the chair and it took 4 days for it to wear of. I did have a ct scan which helped to calm me in thinking I had a brain tumour. I am just at a loss now and feel they can't keep sending me away for 6 months with a different drug in the hopes this one will work x
this sounds horrendous. I’m really sorry to know you’re having such a horrible time at the moment. People who haven’t experienced pain just can’t understand how all pervasive it is. Sending you lots of gentle sheepy hugs 🐑🐑🐑🐑🐑
Thank you HH. I feel like it is getting worse and am questioning everything. I had laser holes punched into my eyes last year to help stop the onset of glaucoma, it only worked in one eye and I wonder if perhaps it is this giving me the pressure or am I just grasping at straws. Thanks for your best wishes and Sheepy hugs x
Is it possible to get this checked with whoever did the laser surgery? Or even an optometrist if they have the technology to detect any such problems? I really hope someone can give you a second opinion. And you cannot be the only person who can’t bear the MRI scanner. My mum is so claustrophobic she can’t wear tight clothes, or close doors, or go in a lift (a few months ago we stayed in a hotel where reception was inexplicably on the 11th floor and she would not use the lift, we had to walk up the stairs 🫠)! Surely health care professionals must be amenable to people who have this genuine condition. I really hope someone will give you their time to try to sort this out 🤗
I can so relate to this HH. When my daughter lived in Tenerife I had to book my seat so I was in the aisle and even heavy bedding makes me panic. It doesn't make sense really and know its getting worse. It was the eye hospital in Manchester that did the laser surgery and I will go back to them as well. Thank you for your reply its good to know I'm not alone x
Hello Irene. You Really are having a horrible time. I think, if you can, get a second opinion. Issy's post about her mother must (even if she went the private route) give you the knowledge that there is an effective treatment. I cannot understand why they won't let you have Pred. if that works for you?
My shingles jab (1st one) made me feel a little fluey for a couple of days, but nothing too bad.
I hope you manage to find some solution to all this pain, without an MRI (I am right with you on those!).
Thank you Leo 60 . I dont think they will be happy me asking for a second opinion but I don't carry on like this. How were you on the 2nd jab, I wasn't too bad on the first x
I'm so sorry you're in this miserable pain. I hope the amtriptyline will help I suppose the polo mint shaped scanners are no good for head scans- much less scary than the tubular ones. Best wishes for a speedy end to this nightmare. xxx
Thank you Alberta. The ct scan doesn't show up nerves which is what they wanted to look at . After looking it up not sure I will be able to use the amtriptyline as it makes the eye pressure worse, having narrow angled glaucoma I now have to be careful x
I'm sorry I didn't know the difference between an MRI scan and a CT scan. I hope someone can help you make a fuss until they find an effective treatment.
How I wish I had a magic wand to magic away the pain. I'm so sorry you're suffering like this. A few years ago I had my head and face scanned, for face, jaw, teeth & ear pain (after being treated for chronic migraine for many years). The scanner wasn't a tube. I had to sit on a high chair with my chin on padded thing while the curved scanner went round my head but only from ear to ear. Perhaps head scans have changed since then, have you had it confirmed that your scan is in the tube type.
I do hope you get some relief as soon as possible - they don't always get things right (my chronic head pain was due to all sinus cavities full of solid matter, not neuralgia or migraine at all (or the imagined brain tumour).
Thank you Peege. Wow that scanner sounds brlliant and I would be able to take that if I wasn't enclosed. The neurologist talked to me about having the mri scan and it takes just over an hour. but the last one I had I almost clawed my way out and I said after that I would never go in one again. You are right in saying that they are not always right in diagnosis and I feel that this is more to do with over the top of the ear as that is where the pain radiates from. Did you have an operation the clear out your sinus's, hope you don't suffer this anymore x
Sorry you are in so much pain, nerve pains are really hard to ease. I have not got trigeminal neuralgia but I have a degraded cervical spine that causes Radiculopathy where the pain radiates into my shoulders and one arm.
My doctor would not prescribe pred for pain either - I was on an anti epilectic pill called Gapapentin. I don;t like it at all, but it;s for nerve pain.
I have Morphine for my pain radiating from my neck, it works.
You sound like you are in a lot of pain and all you have is an anti epilectic tablet - There are pain killers like Codine for eg, these are not perfect but better than the misery of constant pain.
As Issy says there is Amitriptyline - Anne takes those and they work for her - I hope you get some help and soon.
Thank you Ern. After reading up on medication reactions to narrow angle glaucoma most of my medication will need to be reviewed but think I am just going to try them out see how i feel. I am so fed up of the pain in my eye and ear and the headaches it comes with. It is there all the time and getting me down. I have tried Gabapentin and they make me tired, Codeine doesn't do much for me. I was getting a couple of hours relief from the Prednisolone but have run out now . Am hoping somebody from the hospital gets back to me x
Thank you Chrisantloz72. I was sedated for an operation on my thumb and woke up half way through, I would have a major panic attack if I woke up in an mri machine. I know its silly but i just can't do it x
Not an expert, but could you have a light sedative prior to an mri scan? mri`s really do turn up a lot of info about what is going on inside. The machines are not as noisy as they used to be so if you feel giving it a try, ask about sedation. Take care, Chris.
Thank you Chris. I was sedated for an operation on my thumb and woke up half way through, I would have a major panic attack if I woke up in an mri machine. I know its silly but i just can't do it . I wish I could just switch off but the panic starts as soon as I think about it. I also cant lie flat and still for an hour because of shoulder, hips, cough. I have asked for an upright scan but apparently it doesn't show clearly enough . The neurologist did say that it doesn't always show up that the nerve has a problem . Just want to be out of pain x
Sedation sounds a good idea. My daughter has it for cervical smear tests; I had it for a bronchoscopy- painless and makes the experience less gruesome. xxx
i think my daughter is put right out- I'll have to ask her. A concession to her autism. Would they take on board the acute stress you are put under by scans.
She just said to me last time, well I just don't know what to do with you. I don't really think they understand what it means to be stressed with claustrophobia. I am trying to get hold of the doctor who did my laser surgery and see if he can advise , but waiting for an appointment is crazy. It would be great if I could be put right out x
I used to take gabapentin for similar pain in my feet, felt like I was walking on broken bones, it did the trick but took a while getting used to the medication. Eventually I weaned myself off it and, touch wood, that pain hasn’t returned.
Thas really good to hear that you are now pain free Wendy. I do take Gabapentin they make me tired which helps me to rest but doesn't get rid of the pain. I feel like my brain is fogged up and just so tired all the time so not really getting on with my life x
I had a bad reaction to both the shingles vaccine and the pneumonia. 8 years later I got shingles and had the neuralgia that had me crying out every few seconds. I've suffered from it for years. I was given antibiotics recently that brought it back. I have fibromyalgia which affects the nervous system and have bad side effects to most medication. I'm on different antibiotics at the moment, which seem ok.
Oh dear this sounds dreadful, I do hope the antibiotics work for you and you don't have any side effects. It's hard enough living with the lung and other problems without this on top x
Firstly I had to have a second mri as I had to bring up sputum due to bronchiectasis so 60mg coedine made me really relaxed and suppressed the cough reflex. Obviously I had nebulised before this and I had rarely taken any coedine prior to this
My mri was normal
I have a diagnosis of classic TN. My symptoms are excruciating electric shock pains in the jaw area which affects eating, drinking, touching. At its worse I have lost half a stone in a few days. Mine does respond to carbamazepine and lamotrigine. I have had to increase the doses over the years with initial drowsiness and falling. Dose alterations and then body getting used to these have worked
I’m lucky to have a top neurologist and specialist team with helpline
Finally, your symptoms don’t sound typical of classic TN, especially as the usual drugs not working. A second opinion. You have horrible pains that may be treated wrongly
My consultant is a head pain specialist at Royal Stoke Hospital
Thank you for your reply . I must admit my symptoms don't sounds like TN when I have looked up online , I will be getting a second opinion on my next visit as I have had my doubts for a while now x
so sorry to hear you’re in so much pain. Did you know your head is very near the opening in an mri scanner? I was on Nortriptyline tablets for nerve pain caused by my back stenosis. They are similar to Amitriptyline but I’m told with less side effects? I think you were failed by the person giving you the sedation if you woke up in the middle of your op. This shouldn’t happen and they should make sure it doesn’t. I hope you find a solution soon.
Thank you Mooka. I think the things that panics me more than anything else is your head being so close to the top of the machine, your nose can almost touch the top. I wore an eye mask last time I had one but had to be brought out almost as soon as the machine got going and almost had a panic attack, they gave me a paper bag to blow into it was quite embarrassing x
I’m sure you’re not the first and won’t be the last. Personally I’d rather go in a mri scanner than have surgery on my eyes 😱. Hopefully they will bring out something one day that’s not so claustrophobic.
Hi Izb1, you are really suffering with that pain, how grim. You mentioned seeing a neurologist but i wondered if you had been seen by a specialised pain clinic? I dont know if they could help you more? Do hope you find some relief and someone who can help. Fingers crossed, Sally
I haven't even considered acupuncture Issy but well worth a try, thank you. I am going to have to get my note book out for all these suggestions otherwise I will forget when I go back x
Sorry to hear you are suffering I haven't had the shingles vaccine so can't comment but I have had neuralgia. I also had carpal tunnel syndrome at the same time. My GP prescribed Pregabalin for the carpal tunnel but coincidentally it was also effective for the neuralgia. The GP said that because Pregabalin interrupts the messages from your brain to your nerve endings it can treat both carpal tunnel and neuralgia. It's a similar drug to gabapentin.
So sorry to heat you are struggling Izb1.sounds like not much is helping.u should b getting glaucoma sorted out to save vision.i don't have trigeminal neuralgia but do live with chronic pin and neuropathy.i am on hi dose gabapentin,without which the neuropathy is unbearable,plus strong painkillers for spinal and joint probs. Another angle perhaps to consider - could u mention to dentist to see if has any advice? Does heat help - if so little hand w armer wheatpacks are v good.I think u should go to appointments armed with list of bullet points× questions.
Be firm,tell them u can't just b left for another 6myhs - perhaps suggest they check in on u by phone eg in a mth.
Its hard to be proactive+ fight for yrself when ill as i know only too well, but it sounds like u are going to have too xxxxxx
Thanks Pat. My rheumatoid doctor god bless her sent me to the dental hospital when this first kicked off and he could find nothing wrong with my jaw or teeth. I did discuss this with my own dentist too and he checked everything for me. I also had a jelly scan to check for giant cell arthritis and must admit that the symptoms are the same so was surprised it wasn't that. I still don't think it's TN but will have to be more proactive as you say, although on my last visit I said to the neurologist that she didn't really know what was wrong with me and thought she was going to throw a fit, we nearly got Into an argument about this but she backed of in the end x
Have you checked with a dr that it’s okay to take amitriptyline ? Or checked the contras on the medicine leaflet as wouldn’t want you to be more poorly. Xx
Are you on eye drops or other meds for your glaucoma? My husbands eye pressure was exceedingly high even on latanoprost &timolol but once on dorzolamide it dropped significantly to a much lower level. I was wondering if the meds would keep it in check. Take care xx
No which is very strange. I do have an eye drop Hylo Forte which is a lubricant, another question for the eye doctor as the pressure feels high in my right eye x
Finally found the letter from the glaucoma clinic and they say that I dont need eye drops as the Iridotomy I had would prevent pressure, but think I will contact them anyway x
I've never experienced the sort of pain you are in but I had a close friend who went through it for a very long time. Her problem began with an operation on the jaw joint up near the ear (can't remember the name of it). Unfortunately, that left her in pain which they said was neuralgia and caused by the nerves in her face having been disturbed during the op.
She found out quite by accident, when playing with her granddaughter, that a plastic hair band placed in a particular way across her head reduced the pain. Granddaughter had just plonked it on Granny's head, as kids do, and Granny decided to keep it on there! She then bought a more 'adult' version (Peppa Pig wasn't doing much for her image!) which she wore for many months and it kept the pain at bay while she was wearing it.
However, severe pain returned and, in desperation, she saw a dentist who had come highly recommended as someone who could think outside the box.
He did a number of test and eventually sent her somewhere for a rather expensive special x-ray which picked up a very deep seated abscess. She had an op to drain the abscess and that was the end of the pain altogether. It was not an abscess that would be found on a normal dental x-ray.
I hope someone finds a way of helping you through this. If you have a head band, maybe give it a try? Who knows, it may help.
Thank you Moy, I am feeling pretty desperate and willing to try anything, although I can't wear my hair in a ponytail for long as it gives me headaches . I do have a headband and will try it out. I have had a problem with pain in my right eye for years and nobody can find anything wrong but the pain is certainlg getting worse x
Hello Irene. I'm sorry to read you are not doing so well at the moment. 😔 I can't help with your question about trigeminal neuralgia but I hope you can get more effective treatment. I did have the shingles vaccine and I had a slight fever and chills afterwards but it lasted less than 24 hours. I hope things get better soon. Love to you. Cas xx 🙋♀️🐕
Thank you so much Cas. This has been a long slog with these head problems I have been having and just need some relief, it seems to have been a long time and not getting anywhere. My next appointment isn't until September , no sure I can wait that long. Hope all is well with you and Chom x
I was wondering if massage therapy might help. Apparently, RMT (Registered Massage Therapy), is a well-known and frequently used treatment for trigeminal neuralgia. If you feel you can't wait for the appointment in September, please do ask for an earlier appointment. You shouldn't have to just grin and bear it. We are well thank you Irene. xx
So sorry to read about what you are going through. There is a TNA association that have a helpline and resources. I have added the webpage below in case you have not seen it. They have resources and there is a helpline number- they may be able with questions to ask when you see your consultant.
I suffered with this for years and also went through all the seizure meds and anti depressants like amitriptyline but I couldn’t stand being spaced out and still in pain. I used to just manage it with codeine the strongest I could get from the docs. After about two and half years the pain moved into occipital neuralgia then into horrendous migraines. After years of suffering they suddenly stopped and I am just left with the migraine auras which are debilitating when they come on but at least I get a break in between. Good luck.
Oh my word what a blinking disaster. I feel the same about the meds they don't address the pain and I can't stand being spaced out all day. Although I am taking anything at the moment as the pain is so bad. I may give my gp a shove and see if she will give me some codeine although I doubt she will. I am so pleased that this has stopped for you although the auras I imagine can be bad x
So sorry you're having such an awful time. I had bad problems with migraines which are caused in part by sensitive nerves around the face, principally the trigeminal nerves. One of the most effective non-drug treatments I have used is a Cefaly device, which is like a TENS machine for trigeminal nerves. It uses tiny electrical pulses to desensitise over-firing nerves. It is not cheap but it does make a real difference to the nerve pains I get on the left side of my face.
To find out more about it, visit here: cefaly.co.uk/
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