Advice needed on severe neuropathic pain

Posted , 3 users are following.

I have been experiencing nerve pain predominantly behind my left ear/head for the last 2-3 years. It is worth mentioning that I had 3 operations on my ears, the last being just under two years ago. The first was to reconstruct the inner bones of my left ear due to years of reoccurring infections eroding and damaging the bones. This operation also included reconstruction of the eardrum. The second operation, again on my left ear was to repeat part of this procedure, widen my ear canal, and insert a grommet (still in situ) and an adenoidectomy. The third operation was on my right ear to remove a cholesteatoma and reconstruct the eardrum. These have been confirmed by ENT consultant as successful following treatment and follow up MRI.

I had much pain prior to the operations however trying to distinguish infection pain from muscle/skeletal pain, and nerve pain has been very difficult. I continue to have reoccurring infections in my left ear, which seems to be the most problematic area, and have also been told by the ENT surgeon that I have dysfunctional Eustachian tubes; therefore little can be done to stop the ear infections.

The pain in my left ear has increased in frequency and in pain level over the last two years (mainly staying at an 8/10 or a 9/10. The pain I experience is sharp shooting/stabbing pain that shoots up into my head from mastoid bone area; this is the worst pain I experience.  There is a permanent heavy ache in the mastoid area, and pain spreading into my face (eyes, nose and, cheekbone) this sometimes feel sinus related (pressure) and sometimes not, my nose does not feel fully clear but not blocked. The pain often goes down the front side of my neck (which feels like raised/itchy glands). And I have raised nodules (glands) behind both my ears. The shooting pain has become more frequent, and a fuzzy or sharp headache follows this. I have tried hot and cold compresses on my ear which seems to make the pain in my face spread, and the cold weather makes the left side of my ear/head/face much worse.  I can see how much of this achy feeling can be down to TMJ as I have a dislocating jaw, however the rest of the pain does not feel part of TMJ as I have come to recognise this type of ache in my jaw joint and under my jaw.

My NHS ENT consultant arranged a MRI scan roughly a year ago to check the overall efficacy of the surgery and to see if the ongoing problem was nerve related. He reported the MRI scan showed no concerns.

I have had an appointment with maxillo facial and was diagnosed with ‘bilateral temporomandibular dysfunction syndrome’ earlier this year. I am awaiting physio for this.

I have been for a dental and optician examinations to rule in or out these being a possible contributor, as well as having an allergy test which came back with slightly raised levels but not levels that would indicate having an allergy.

I have been having physio (privately) due to trapping nerves at the top of my spine from leaning my head to the left and raising my shoulder due to the pain experienced in and around my ear and head. Through physio the pain in my neck/shoulder and arm is getting better and I no longer have nerve pain down my left arm. I will continue to have physio to help with muscle/skeletal pain as I am prone to reverting back into the head/shoulder leaning position when in extreme pain.

Following this my father took me to see a private consultant who recognised these symptoms as being nerve related, and spoke of different types of neuralgic pain affecting the nerves in my head and face. He reviewed the MRI scans from NHS consultant and advised he could see ‘a large vessel’ and was up against the ‘Nervus Intermedius’ area. He recommended a further vascular scan to gain a clearer picture, and therefore, move forward with treatment.  This report was sent back to my NHS ENT consultant who when we attended the next appointment  did not feel this was necessary due to the enlarged blood vessel being more medial on the right side of my head. My treatment plan at the moment is stagnant and not really going anywhere. I am waiting to be seen by the pain clinic however advised this could be up to 48 weeks wait. Treatment/pain management in a year is no good, I have been unable to work properly for the last few years, and have been off work for the last 3 weeks.

I have tried Gabapentin, Carbamazepine, Nortriptyline, Amitriptyline and Pregabalin to help manage pain. These have all caused extremely difficult and recently frightful side effects. The Gabapentin made me extremely drowsy, poor memory and concentration; could not function at work. The Carbamazepine appeared more effective until I came out in an angry itchy rash, the Nortriptyline and Amitriptyline was especially worse due to being prescribed alongside an SSRI which caused a major drug interaction and I began fainting among many other frightening side effects. The Pregabalin was the cherry on the cake and the last pharmaceutical medication I took. The effects of this medication made me a mix of a floating drunk and zombie, completely unable to think or function. As the drunken dizziness wore off half way through the day a horrible headache and all over grotty feeling took over. This combined with the ongoing pain and now increased anxiety has made everything unbearable. I am now trialling CBD oil following several recommendations to try this (day 3 of trial; minimal effect with nerve pain, some pain in face has reduced. However my mind does feel clearer).

Is there anyone who has had similar experiences to this, who have found answers, or found a way forward? At the moment I am unable to afford the costs and ongoing costs of seeking help privately. I am literally at the end of my rope physically and mentally.

I realise this is a long post, thank you for taking the time to read this and for any advice you can offer.

0 likes, 4 replies


4 Replies

  • Posted

    Hi Jane, I am so sorry for the pain you are in and sorry also that I can't offer any suggestions. I just wanted you to know you were not shouting into the wind and hopefully someone will come along soon who may know of something you can try.

    I can only suggest you keep telling you doctor and see if he can come up with something that will work for you.  Maybe refer you to a pain clinic?

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  • Posted

    I feel your pain Jane2211 !! I've had 7 back surgeries over the years and thankfully my back doesn't hurt !! But about 7 years after my 7th back surgery, I have extreme neuropathic pain in both feet and toes ! I've tried all the Gabapentin meds with all the bad side effects !

    I've been going to a new dentist lately and I mentioned to him that I was going to have a nerve stimulator implanted in my back this Fall !

    This dentist is also a Pharmacist and he asked me if he could offer me an alternative to the nerve stimulator would I be interested ? I told him I most certainly am interested in what he has to tell me !

    He went into another room and came out with 2 bottles of pills and told me they are all natural supplements that will help me with my neuropathic pain !

    He told me that I should see a difference in my pain level in 3 weeks !??

    Well, I don't know if my brain was telling me right but I had some pain relief in 2 days !!

    Just last night, my feet and toes felt good enough, I walked around the block and I haven't been able to do that for many, many years !!

    I'm going to give you the names of the 2 bottles of pills and I want you to GOOGLE them and read all the information you can get on them !

    The 1st bottle is ALAmax and I take (1) (3) times a day (30) minutes before meals !

    The 2nd bottle is Acetyl L-Carnitine and I take (1) (3) times a day between meals !

    Please look up all the information on these supplements before you take them ! You will be pleasantly surprised !!

    Take care,


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