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Living With Facial Pain

Looking for members in England

#1

We have various members who are looking for contact with others who are in England. Post on this thread to introduce yourself.

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#2

Hi there,I’m from England…I sign in as Eileen.I live near Oxford and I have atypical facial pain.Feel free to contact me fellow Brits!

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#3

Hi

I live in Lancashire and sign in as Juno :slight_smile: feel free to contact me :slight_smile:

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#4

Eileen! Just the person we are looking for. Your friend Uncle Al was looking for you. (He told me that!) If you go to Members and search for Uncle Al, he should appear. Clicking on his avatar will take you to the messaging feature. Glad you dropped by.[quote=“Eileen2, post:2, topic:12669, full:true”]
Hi there,I’m from England…I sign in as Eileen.I live near Oxford and I have atypical facial pain.Feel free to contact me fellow Brits!
[/quote]

Seenie

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#5

Hi! I’m from England. Wiltshire.

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#6

Hi I’m Pam from Surrey England with occipital neuralgia ,like to hear from any one please

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#7

looking for Eileen who is waiting to hear back from Uncle Al…

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#8

Hi , I’m from Wiiral and have Trigeminal and geniculate neuralgia

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#9

Sorry Uncle Al but when I search for you the results come up as nobody here under that name! But I am here and if you wish to post please do so!

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#10

Hi Uncle Al,
I can’t seem to get onto your membership but I am here.How can I help you?
Best wishes,
Eileen

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#11

Hi there Pam! Which type of facial pain do you suffer from? I have type 2 and at present am on a low dose of pregabalin and plan to go up slowly.Are you in medication? How have the doctors treated you here? Hope you are having a good pain free day today!

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#12

Maybe a year ago I signed in to this site… I was confused why so many continue to have problems with TGN and mentioned I had 3 treatments over 30 years with the last one lasting pain free from 1993 until today. A lady named Eileen from England asked for more info and because I did not remember the name of the treatment I said I would try and find out. 6 months later I got a response from the hospital in Vancouver with a copy of the surgeons notes and have been trying to get this info to her since then with no luck. I am sure she was from the UK which I believe you are so gave your name a try. My procedure was called a ’ Needle Rhyzotomy ’ and I am sure it is a common procedure but maybe mine just lasted longer than most…not sure. I have a full description of what and how it was done if needed. I was knocked out a little and 2 hours later drove 300 miles to my home so it must have been fairly easy on the system. Eileen and I were back and forth 3 times but maybe this new web site
has eliminated my ability to get back in touch with her. I made her a promise I would find out what I had done and now I am unable to keep that promise until I find her. On another note… I think you live in Oxford?? look across the street to Ruskin College and you will see the room I was born in. ( 1944 ) thanks so much for your interest here…I was ready to give up… Uncle Al

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#13

Uncle_Al seems to have responded below. To message a member, you can click on their avatar (just to the left of their name on the post) and then choose “message”.
Seene

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#14

Hi Uncle Al,
How kind of you to make contact with me after all this time and I do appreciate it.I shall ask my doctor about this procedure.Can you remember which type you had,type 1 with the excruciating jolts of pain or type 2 with the continual ache? I have type 2.
Where you actually born in Ruskin College? Tell me more! And once again thank you.
Eileen

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#15

HelloEileen I haven’t been given a number only occipital nerve damage due to road traffic accident I think I should go private but as I’m 80 and saving for my future care I didn’t MRI results I’m waiting for,medication on Tegretol 600 at the moment was on 800 which made me a zombie and as I’m still playing bowls and swimming and group walking I came down to 600 my heads are like thunderbolts and excruciating but only strike every 4 to 6 weeks then I take 800 they last for 6-9 days and make me feel like I don’t want to.be around but as a retired nurse I know they will go I haven’t had one for 4weeks so live in hope but I am making an appointment at my GP to find out more,I feel that at my age neurologist is not informative to me ,also I dropped out of competion and hopefully star next year also swimming I have started walking with group but not as far I will never give up but live in hope this Tegretol will work.

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#16

Hi Jane ,seems to me that you have type 1 …your MRI results should hopefully confirm! My brother in law of 81 has type 1 and he has been offered an operation.You are certainly a very active 80 year old …well done…in view of your facial pain too.My GP whilst a good guy knows very little about this condition,I know way more.I still wonder if I should see a neurologist but would have to go private as the waiting time as you know would be very long.My pain was completely under control on 600 mg of pregabalin but I was out of this world so came down to a much lower dose which is too low so am upping slowly.I have some pain days some not usually depending on my activity levels.Good to hear from you!

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#17

Hi Juno ,I’m making contact with those of us who live in England who posted here.What sort of facial pain do you suffer from and are you on any medications? And how are you?

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#18

Hi Eileen

My pain seems to be Type 1, electrical discharges, crushing sensations etc and is currently being ‘managed’ by medication which has been increased over time. My neurologist has asked me to wean myself off Neurontin (Gabapentin) but at the same time increase my Tegretol, which does give me headaches, dizzy spells etc. I have now been referred to a neurosurgeon as my MRI does clearly show two compressions, maybe he will refer me for an operation, who knows :slight_smile:

If you are on Facebook, there is a UK based group which provides a lot of information and support from people living in various parts of the UK ‘Trigeminal Neuralgia (TN) UK’ as well as various US groups. There is also a British charity TNA Org.UK which also provides useful information, holds meetings etc which may be beneficial to you. slight_smile:

Unfortunately, the medical profession are not always aware of this condition, it is therefore important that we have support networks in place. People do not always understand and think ‘Oh, it’s a headache’ or he/she just wants attention … :frowning: aaarrrgh.

I hope that you are having a low/no pain day today and you continue your social activities for many more years x

Best wishes
June (Juno) x

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#19

To start with your response seems to confirm you are the Eileen I was looking for… is that correct?..I hope so. The answer to your first question would be Type 1 so it may be this procedure is of no use to you but hopefully that is not the case. My attacks come and go usually lasting 3 to 5 minutes with maybe 15 - 20 a day and then the whole thing would go away for 3 months or so, returning at random with no apparent reason. Even today I still get a little shock once in awhile to remind me it is still there but very manageable over all with spells of 2 - 3 years and no sign of it. My right side of my face is some what numb but I am not aware of that sensation unless I think about it. I really hope this is of some assistance and if not that you find a solution shortly. Drugs cannot be much fun. I know, because I was on Dilentin and Tegratol back in the late 80s and hated that stuff. So, Ruskin College…My Dad was a Canadian Soldier who joined up in Port Alberni which is a town on Vancouver Island off the west coast of British Columbia. He was stationed in London and met my Mom in the East Acton area of the city. They married Christmas Day 1943 and I was born 11 months later on November 8, 1944 in a room at Ruskin College, Oxford. They sent a lot of the expecting Mom’s out of town for many reasons but one was the heavy bombing. I actually spent the first 6 months of my life in and out of our backyard bomb shelter in East Acton. Mom and I boarded ’ The Athlone Castle ’ in Liverpool May 2nd 1945 and headed for Canada so my time in England was very short and not a memory. The war ended May 10th and we were 1/2 way across the Atlantic by then. We came ashore at Pier 21 in Halifax on May 13th and Mom and me were put on a train to BC. It was quite a trip for her I am sure as Canada is over 5000 km from shore to shore. Mom passed April 2013 and my Dad is still with us and doing well… My wife of ( almost 55 years ) and I live in Chase BC if you want to take a look on a map… Our home is on the west end of Little Shuswap Lake with Rivershore Golf Course as our neighbours. We are a Village of only 2500 but live only a 30 minute drive from Kamloops which is close to 100,000 so not all that isolated. … Hope I haven’t bored you and once again I hope you find a solution to your TGN… kindest regards, … Uncle Al

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#20

Hi Eileen
Thanks for your answer ,jes I did have to wait 3months before i had my appointment with neurologist but he did listen,but I had to keep saying pain isn’t in my face but on the top of my head,he sent me for MRI scan and I waited two months no results so emailed patients care which answere in a few days saying results would be sent to consultant then to me ,rubbish they will be sent to Gp I know that so am making GP appointment ,Tegretol makes me weak and dizzy so have decided to lower dose as I am pain free but anxious but will up when pain comes ,as my pain has never been a continuous one so let’s hope,I would suggest ask for neurological appointment as mine did give me a graft of every two weeks increase dose then two weeks go on next level so I’m in control of medication coming down was my choice but if no pain is here why take dose that makes me weak,it’s wrong I know but I’m trying it out this way,plus thinking of my kidneys,I would make an appointment if I was you as neurologist is aware of the working of brain and medication,so make one,as I said before if I could pay for one ,but my future care in my older days are important to me as I do ot want to sell my home

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