1. Community
  2. Brain and nerves
  3. Trigeminal Neuralgia

S U N A and Trigeminal neuralgia

Posted , 5 users are following.

angiegirl
angiegirl

I have Trigeminal Neuralgia or I thought I did after seeing several Doctors and being diagnosed with it.  Then I went to the UCLH and was re diagnosed by Mr Matharu, has anybody else seen him and been diagnosed with SUNA.      I am in the middle of a flare up and although I have had it from about 2004 I am all on edge and frightened as its pattern has changed.  Anybody else feeling like this at the moment as I could do with a pain buddy.       Now 2700 Gabapentine a day, 300 Carbamazepine,  500 Lamotridgene.      I can think ok and function ok but like everybody else it's the fear.  I have heard about a very exspensive honey called something like Hana ! anybody use it with the B12.           I also have to sleep sitting up in bed so I don't get much sleep as if I lay flatter as you go to get up you get a strike.       Can anyone chat 

1 like, 48 replies

48 Replies

Prev Next
  • patricia_2468
    patricia_2468 angiegirl

    Posted

    Hi Angie,  I know exactly what you mean when you say that you live in fear of the next episode happening.  I've been having acupuncture for the last couple of months following a particularly severe flare up, and thankfully it all quietened down, until last night.  Went to bed and thought I'd lie flat instead of my usual 2 pillows.  Big mistake.  I felt a faint twinge almost immediately, then another.  By then  it was too late.  A full on episode came on, popped more lyrica and trileptal, then more.   Then another huge episode.  I ended sitting up for most of the rest of the night.  Ok again today but very tired.  It was very cold last night, so maybe that was part of it.  I live in Victoria, Oz.  By the way,  the honey is called Manuka.  I haven't used the honey or the B12.  It is a terrible thing we have, but how wonderful to be able to chat with others who understand what we go through.  Best of luck. Patricia
    • angiegirl
      angiegirl patricia_2468

      Posted

      Hi      I am in the middle of a flare up now. You are on medication I have not tried. How long do you have to wait for them to kick in  the ones I am on can take 3 days or more which is no heLp when you are in so much pain.   Still waiting for the DR to decide about giving me B12 injections.
    • louisa55738
      louisa55738 angiegirl

      Posted

       I am afraid to say there is no instant pain relief. My GP has prescribed me a morphine based drug to take when the pain becomes unbearable! Sorry to hear you are in pain you have my full sympathy!! Take care x
    • angiegirl
      angiegirl louisa55738

      Posted

      I was given morphine and MR Matharu said that I was to come of it as it will make the head pain worse. I was taking the morphine for my back and he said that I would have to decide which pain I could cope with , worse head pain or back pain. Aparently  us poor sufferers should take no opioids.

      my GP was amazed.   Did your Consultent say anything about it or have you not seen him yet.     Do you think morphine helps, let me know.  Have a good night.

    • louisa55738
      louisa55738 angiegirl

      Posted

      I haven't seen the Neurologist yet and my GP has confessed he knows nothing about TN. So that is interesting about the opiates. I haven't needed to use it yet, as he prescribed to use only when I next experience a head splitting attack. I now have bad lower back pain, but my Bowen therapist has said this is due to my jaw problems. When the jaw is out of alignment it puts the whole body out of alignment. There is just so much to learn and consider. Night night x
    • angiegirl
      angiegirl patricia_2468

      Posted

      I understand your issue with the pillows I can't remember the last time I payed down in bed, several years ago. I have 4 pillows and sit upright all night. It's terrible at night. I can't get the pillows in the right place to support my back and then I am slipping down the fed. I don't sleep for many hours at night.    I hate bed time !
    • patricia_2468
      patricia_2468 angiegirl

      Posted

      Oh Angie, that's miserable.  Have you tried reducing your pillows to two from time to time?  My husband mentioned to me the other night that it might be an idea to purchase an adjustable bed (hospital style),  Is that a possibility for you?  I've sat up through the night many times - horrible.  It's no wonder we have bad backs!  I've heard that many TN sufferers swear by B12.  Has to be the Methyl variety NOT the Cyan.  I believe the inj. is the Cyan. ??  There are lozenges that can be purchased over the Internet. X
  • angiegirl
    angiegirl

    Posted

    Okay,  Mr Matharu.  He is a Consultant that has done a lot of research at the UCLH. If you look him up you will see he has done a lot of research arch and he has written a lot of medical papers.  SO,   I asked my GP for a referral to Profesor Zack  she is the Medical Consultant for TNA.   UK and she is at The Dental clinic at London.   I saw her and she walked with me to. The UCLH to see MrMatharu because she said that there was more than TN going on,    That's how I got with him.          He also cares for a cluster Headaches.   Have to go now.  Sorry will try and continue tonight." Take Care 
    • louisa55738
      louisa55738 angiegirl

      Posted

      Thank you that is really interesting. I will do some research of my own now you have explained. That is really kind. I want to see a specialist that really understands TN and can help! Thank you Angie for taking the time to explain this, it means a lot x
  • angiegirl
    angiegirl

    Posted

    Hi I did try to get back yo you but we had a massive storm and it knocked our electric out so I lost all my notes to you.,,

    where do you live.     I'm in Cambridgeshire so I have a trip to London it is usually a days job to go to the UCLH.    My DR or going to contact them for me tomorrow.     I was supposed to go on holiday on Monday but my Husband said its best that we give it a miss.    I feel so disappointed as I had so much trouble trying to find a hotel and it is a special year as my husband and I have special birthdays this year.   I know it's best to cancel as if you are ill it's best to be at home I think.   Do you avoid any types of food, I avoid loads.    

    • louisa55738
      louisa55738 angiegirl

      Posted

      We have just had the storm and it flooded the dinning room. I  live right across the other side of the country from you on the Herefordshire /  Gloucestershire. I can't eat chewy foods and can't load my fork with food as I can't open my mouth very wide. I can only eat on the right side of my mouth. 

      That is a real shame about your holiday! We went to Crete in May as we needed a break, as we'd just lost our dog. We thought the heat may help with the pain, but it didn't! Also I had to sit on the plane with a scarf wrapped around my head as the AC made the pains worse! I enjoyed the break and change of scenery but it was a very low key holiday as I felt poorly with the pain and the medication. It does affect my husbands life very much too! 

  • angiegirl
    angiegirl

    Posted

    I also have dogs and although my husband walks them now as I am on crutches due to lack of balance and back problems I can't imagin life without a dog. I have 2 Rough Collies like lassie. They know when I am suffering . You must of been very sad due to the loss of your dog.   

    No dinner tonight every time I put the teaspoon in my mouth it did not like it due to the pain.  Back to soup and yogurt although if I leave breakfast till about 9-30 I can manage porridge. Then mornings are my best time.

    good night

    • louisa55738
      louisa55738 angiegirl

      Posted

      Morning Angie it sounds as though life is very tough for you.Yes loosing my dog was a huge loss, he, Monty was a beautiful golden Labrador. I rescued him when he was 6 and we had ten years together. He really was a lovely gentle boy. I miss his company and the daily walks. However I had fallen over whilst out walking several times and think it was related to my TN. Also people have said that TN is worse when you are stressed.I have been very tense and stress, due to Monty being ill and sensing I was going to loose him as he was almost 16. I am also stressed about my business. So perhaps stress is a trigger, but it's hard to tell. 

      I had a flare up of neuralgia last night, this time in the back of my head, which I haven't experienced for years! take care Angie

  • Baudwalker
    Baudwalker angiegirl

    Posted

    I have very similar issues.

    Left side of my mouth in completely numb. This varies from minor to massive and the left top lip feels like the dentist has gone mad with the needle.

    I can only chew on the right side of my jaw and have issues with quite a few different foods as well. Just can't get them where I can chew them.

    Food often remains between jaw and cheek on right side. Very sensitive to salt but no issues with hot (as in chilli etc)

    I am told what ever they try the numbness with never be reversed.

    I am in Cornwall about as far as I can get from good treatment however I have my GP well trained now.

    OK..that is my tuppence worth!

    Ray

    • louisa55738
      louisa55738 Baudwalker

      Posted

      Hi Ray have you been referred to a Maxillio Facial Specialist? Not sure that spelling is correct. If you haven't ask your dentist to refer you. I am a huge fan of the NHS, but am suspect of how it is managed! I feel that many people are told that they have got to live with problems, as it saves the NHS run practices money. Sorry to be political!! A Maxillio Facial Specialist might be able to help, anything is worth a try. Good Luck Ray! Louisa 
    • Baudwalker
      Baudwalker louisa55738

      Posted

      Hi Louisa

      Been to dentist. Removed one nasty one, x-ray'd the rest (only 7 on bottom jaw left) and ALL are clear of any dental issues.

      If I press on the left rear tooth it can give me a sharp pain but it goes very quickly.

      The GuRu's at the various hospitals have decided I have issues with the PAROTID gland. Their MRI's and PET scans and Ultra Sounds investigation says there is something amiss like maybe a dead lymph gland or a tumor (they all want it to be a tumor) there.

      So we continue next Monday with a CORE SAMPLE needle through the side of the face ner the ear to get some cells and hopefully some tissue for a biopsy.

      Then wait two weeks for a technician to determine the results and we will all know.(I use that sentence guardedly )

      After that it goes to the weekly chat line between the various GuRu's and they jointly select the next option by a consesuss of guesses or even a toss of the coin, who knows?

      Cynical? ME? never!

       

    • louisa55738
      louisa55738 Baudwalker

      Posted

      Lol! Yes I know how you feel! My husband dragged me to A & E when he came home to find me rolling about the garden in immense pain. The triage nurse was so rude. Asking if we had gone there hoping to fast track the system! If I haven't been in such pain .........

      It's more likely to be the toss of the coin, as to whose budget the next course of treatment is coming from.

      From a fellow Cynic! 

    • angiegirl
      angiegirl Baudwalker

      Posted

      Hiya sorry I have take so long to contact you but I have had terriable trouble with my internet, I am not so sure that it is iced even now!

      you are in Cornwall oh' my I think as far as where you live it's Wonderfull. Our favourite place is Perrenporth, we used to stay, until they demolished it this year at th Ponsmere Hotel. My room and balcony were directly in line with either the rock where my grown up children used to play and swim many years ago or in line with the Waterhole. This is the first time in a long time we have not gone due to the hotel not being there and I would not have been able to go due to my very long Flare up. Totally gutted!

      now back to reality,    As you have probably realised this is my best time of day.     Have you got TN or SUNA ?        How long have you had it, mine was diagnosed in 2005ish, just after a eye operation although I did have what I called toothache whilst I was in hospital.     How do you get on with your drugs.    Where would you go for a consultant, would it be Truro?

    • Baudwalker
      Baudwalker angiegirl

      Posted

      Hi Angiegirl

      Well what a difference a few weeks makes.

      The GuRu's have had another conference call and agree that I have a Tumor in or behind MECKELS CAVE.

      Basically juist beside the lower ear and then down right into the neck. They took a 'core sample' that they call a biopsy and it showed cancerous cells and the left side of the face has swolled and is VERY tender. Any touching or pressure there is 10 times the TN pain.

      They are going to do a PAROTIDECTOMY which is 5+ hours on the table and the face is very deformed afterwards. Basicaslly they can't rebuild the area where thre Paratoid is removed so quite an area of the cheek is sunken.

      The nerves that are attributed to TN actually pass THROUGH this gland so they have to be carefull they don't damage them. The nubness there already will stay as they can't reverse that now.

      I have assesment of the suitability for surgery late this month and if I pass I go straight on the surgery list. They have marker me as a priorority so as soon as there is time I go under the knife.

      Hoping the headaches and electrity shocks either reduce ir go completely but nobody knows and there are no guaranties either.

      Thery also go down the neck and get some lymph glands to see if it has travelled anywhere.

      Probably need radio treatment afterwards as well which I am told isn't nice on ther neck and face. That comes in the next installment.

      Will keep everyone updated after the surgery.

      Cheers

      Ray

    • Baudwalker
      Baudwalker angiegirl

      Posted

      Sometime after the 27th of this month assuming I pass muster at the assessment.

      I am told it will be as soon as they can fit me into the surgery list and I have been told I am marked as a priority.

      Well post in this  discussion as soon as I know.

       

    • Baudwalker
      Baudwalker angiegirl

      Posted

      Hi Angie

      It will be either Treliske or Plymouth depending who has space first.

      Not sure where You arebut they are both in Cornwall (UK)

      Ray

    • angiegirl
      angiegirl Baudwalker

      Posted

      How are you doing.  Is everything still planned for 27th.      Sometimes the waiting and worrying is almost as bad as the pain, will look for you after your op.    I would say keep smiling but i know it will hurt to much.  
    • Baudwalker
      Baudwalker angiegirl

      Posted

      Hi Angirgirl

      Yes all set, surgery pre assessment on the 27th then surgery on the 2nd August.

      Be there at 7.30 AM (who ever suggested that want a great big kick in the backsidecry

      Assuming the hospital is functioning (declared a black alert last week so operations were the first to go) I should be a different person by lunch time.

      I have been warned that the op will probably have NO EFFECT on the TN exceprt relieve the pressure on ly left cheek where the biopsy allowed the gland to expand and swell the cheek no end. Cannot bear to have anyone press on it either. That should go but bugger else because the nerve issues probably are being caused elsewhere on the face. Maybe they might cut them all and that might help.

      Neurologist says the needle and burn process is probably the ONLY way to get relief!!!!!twisted

      He says 2 days to 2 years and eventually continued applications may we kill it altogether but no icdea what side effects that will have.

      He says MVD is as usefull as protrusions on a bull!!

      At least he speaks plainly and doesn't try to hide thingscry

      OK..Toodle PIP and WhatO old girllol

      Catch you after the butchery oops Surgeryeekeek

       

Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.