trigeminal neuralgia, seriously cant cope anymore, tips please

Hi Gill - I just read your post and my heart hurts for both you and Laura.  I was wondering if your suffering is the cause from TN?  I have been suffering with this horrific disease now for 11 years.  

Hi Marlene, Yes, I have the dreaded TN. It's an uphill struggle because when you don't have the darned thing , you spend your life in anticipation of it. It's difficult to plan ahead as you can never be sure whether you will be able to attend the planned appt. or trip e.tc. Hence we haven't been on holiday for 5 years. You can take comfort from the fact  that my diagnosis was over 20 years ago so in many cases, in earlier stages there are longer periods of remission. Thermocoagulation helped me and gave remission for over a year. I've had 4 of these, buit my neurologist is reluctant to go further down that path.

I have to try to think that however bad it gets, there are always those in underdeveloped countries who are even fearing for their lives as well as  being unable to access treatment for the suffering of this.

 When I have a bad or prolonged attack I have no alternative but to sit it out and pray. 

 I'm sure we all find that people (even GPs) think youi have face ache and have no understanding of what you're going through. I'm lucky that I have a very good family which has really helped. I do hope you have the same. 

 Love to you Marlene and keep hoping there's better times ahead.

Hi Gill - thank you for your post.  I have been a member of this wonderful group now for a little over a month and have had the opportunity to chat with several members.  I have a question to ask and I feel somewhat embarrased but did we exchange posts in the past?  My memory seems to fail me at times so this is why I am asking.  I have had this horrific disease now for eleven years.  I am 61 years old.  Back in June 2009 i had to leave my place of employment because it was impossible for me to gt up, get ready and go,  I was heartbroken as I loved my job and friends so much.  Since 2006, when I was diagnosed, I always made plans to visit, shopping, friends over but all that had to stop.  I have even had to cancel important dr appointments!  My pain is constant - never goes away and certainly no periods of remission.  I just went on holiday with my sister - first time away from home in 12 years.  Thermocoagulation is a new medical term to me.  What exactly is it?  I have had brain surgery.  Unfortunately the MVD surgery was unsuccessful.  I know exactly what you mean by waiting it out - this can seem like forever and I just try to concentrate on prayer.  I have the most wonderful and compassionate doctor.  She is so kind and treats me very well.  Without her, I do not know where I would be.  Have had several appointments with pin specialists.  With the exception of one, I would have been better of just staying at home.  I did have two treatments  I had a series of 5 nerve blocks that trigered the pain so bad I would be in bed for a couple of days.  Then I attempted botox injections.  I had sixteen injections to the side of my face.  This also blew u and became very ill.  Love to you also Gill.  Wishing you the very best with many happy days to follow.  Thank you for reading my rant.  Somehow, this does help me feel a bit better.

Hi Marlene , Lovely to get your email. How I sympathise with you. We have to know this pain to realise what others with the same condition also suffer. No-one else could possibly understand . I must adnit to a few tears sfter reading the posts of so many of us, particularly the young. I'm sure we all share the hopelessness and frustration as we look for a way out. At the moment I have had this for 6 weeks this time around, with no abating.of the pain. The only way I can avoid it is by staying perfectly still. It's a great life, isn't it.? I'm certain you also feel like either hitting out or dissolving into tears ( yes, eaven that's painful.) I keep searching the internet for new research. I'd be the first to volunteer but I'm sure there would be a queue of us, I can't believe people can suffer like this and seem to be just forgotten while research for less painful conditions goes on. I have a friend whose mother had cancer and also t.n. . She said that of the two she would rather have cancer 

 I think you're very brave to undertake surgery and I wonder if it was Microvascular Decompression. My neurologist will not perform this on me because of my age and general condition, but I think this is the one you may have. had. This offers the most hope of a full recovery and I have a friend who has had complete relief for over 20 years but I suspect that it's a failure in your case. To answer your question. I have had 4 Thermocoagulation procedures which involve attempting to burn the nerve under anaesthetic. Half way through you are brought out of the anaesthic to ensure they have the correct nerve ( not nearly as scary as you may think) and then left to sleep it off for a little while. You may not remember any of this when awake. As soon as you're fully awake you may go home providing you have someone to drive. You may have numbness . I have this , but I'm sure after what we suffer it's a small price to pay. If successful it can last for a long time ( I've had 12 -15 months ) buit the nerve does tend to regenerate, I'm afraid. According to several sites on the internet it can be performed several times but my nearologist tells me he's not prepared to operate on me again.

 Our lives are turned upsidedown by this awful thing and I'ts dreadful that you had to give up your job. At the moment I'm also very upset. At the age of 46 my son and his lovely lady have decided to have a family but their twins were born at 26 weeks and one and a half pounds each. They're now 6 weeks old and not out of danger but I'm hearbroken that I don't feel I can make the 60mile journey to see them.

  I hope you can discuss the procedure explained with your doctor and get things moving. Do let me know the outcome..

 Just a word to anyone in the early stages. Our posts must seem very discouraging but I'd just like to add that this thing can be very slow yo develop with long periods of remission. Not everyone has it a acutely as we do and if you're much much younger ( I'm 74 and was diagnosed over 20years ago) there may be many new ways of treating this in the future. My love to you Marlene, and prayers to every one of us who suffer from this awful thing

Hi Gill - thank you for your recent post.  I truly appreciate it.  Referring to your frind who has both TN and cancer and her response she would rather have TN is so very sad,  I remember when I started my journey back in 2006, I was sure I would find a cure.  That did not happen.  One pain specialist I had an appointment me told me that TN is much more worse pain than cancer.  So here is your confirmation.  I did have micro vascular decompression in Nov 2009.  Unfortunately, the surgery was not successful.  In the right side of my face I have areas that are frozen.  Especially my lip area, above the lip, tongue is hal frozen as well near my rright temple.  I will be like this for the rest of my days,  I have had the opportunity to speak with three people with the same condition and are now living pain-free lives.  I am so happy for them.  Your surgery seemend to hold alot of promise but with your period of remission that is very good.  I don;t live even for a few seconds without pain but days my pain level is tolerable and I can go out to visit, shop, appointments, etc.  Travel is so difficult - I have to always make sure that the journey will happen on a day with decreased pain levels.  I will pray that you can soon see your grandchildren soon.  I am 61 years old and this TN strted in my early 50's.  I remember the first pain specialist I saw,  he was very kind and told me that there was no cure - only pain meds to lessen the pain.  I am on 8 pills per day plus a sleeping pill.  Without the sleeping pill, I would not sleep.  My TN was not slow.  One day at work in 2006 took this horrific pain in one of my teeth and it has not stopped.  The only thing that happened to me was that it left my left side and now for years has greatly affected my right side, Not good.  I have come to believe that although our symptoms may be a bit different, pain levela are the same thing.  God bless you.  I always love to hear from you.

 

Hi Marlene, I'm so glad you replied. I think we can take some comfort from the fact that fellow sufferers really understand what we're going through. I'm only too sorry that they have to suffer too. Our cases are so similar although I haven't had MVD. My neurologist advises against this because of my age (74) and condition. I too started with this in my early 50s and after various procedures I also have numbness of one side of my face and tongue but it would be a small price to pay if a cure had been found. Over the past year I too have had little relief and have often had to use my husband as a spokesman for me as speaking is so painful and can bring on a more lasting attack. I dread the thought of needing dental treatment and I've been unable to wash the right side of my face. I also have a trigger spot on my scalp so washing and combing my hair is dicey and visiting the hairdresser impossible. The slightest touch or breeze can give me an 'electric' shock. I'm used to wearing make-up and having some colour in my hair but all this is taken away consequently it's an overall glum situation.I feel scuffy and unkempt  When this darned thing started I knew exactly what it was as my mum also suffered from it. It's very unusual for this to happen in the same family but I was familiar with the symptoms. She never suffered as much as me so it's possible to have milder forms but we're not so lucky are we?  Two or three years ago I was having acute attacks lasting up to 1 and a half hours - absolutely and completely unbearable and several of these in one day. This was after a procedure which distubed the nerve. Now I'm back to the usual pain level which is very much like yours,  I'm so sorry MVD didn't help you. I know it's the thing most likely to. I'm also on high meds. I don't know if they're helping because I daren't stop them to see. Where are we going with this thing Marlene and what's in the future for us. It's not much of a life at the moment , is it? Love to you Gill

Hi Marlene, Do you know of the Facial Pain Association. I've just been reading up and have joined. There appears to be a periodical which is either posted or on line ( not sure which ) Anything is worth a try, Love Gill

Hi Gill - thank you for your message.  I will certainly goggle it and do some research  Thank you for thinking of me.  God bless you.

Complementary and Alternative Medications (CAM)

As in traditional medical treatments, the effectivenes of all CAM treatments depends on several things, including the person's state of health and the skill and knowledge of the practioner Every person responds differently to treatments, and even though most of these remedies are non-invasive, they still may have potential risk and complications

 Ask if your doctor will give you the upper cervical chiropratice, injection in the cervix.

or Acupunture

Biofeedback Cassaicin

Homeopathy Nutritional therapy

electrical nerve stimulation

TENS (Transcutaneous Electrical Nerve Stimulation)

vitamin B-12 injections

Vitamin Therapy

Botox

Hello   (far from Stupid) You've been so helpful to several people on this forum and it warms my heart that so many people respond to others in pain from this awful condition, I've tried acupuncture and as the condition was already in remission at the time, albeit for a short period , I really can't tell whether it helped. I get so acute the I can't bear even being touched by a feather so I'm reluctant to try again. I've also had themocoagulation ( burning of the nerve) four times which helped for a year or so but haven't tried any of the other treaments you suggest. I'll certainly ask my neurologist about these if I can get appointment . The man is so busy with other brain surgery patients that it takes me months to tie him down. I get the feeling that he believes that after seeing me  for over 20 years he can do nothing more for me so is inclined to put me on the back burner I can't have MVD because of because of my age (74) and general health. Thank you again for being such a help, Gill

Hi Gill, I am 66 with this hideous condition.  In case this helps....I got a treatment that tho needs repeating is great for us older folks. A radio frequency surgery where they stick a needle in your cheek, find the nerve and burn it.  Immediately afterwards the pain is gone. I take a few Tylenol for a day or two and that's it!  The problems..a numb section on my face. For me it is my jaw which makes eating challenging and all kinds of interesting sensations but the TN is gone gone gone.  Until it returns which it did two times. The doc learned from this and did a harder burn the last time and it has been over a year so far.   Here's hoping the nerve nerves fully recovers and I am free!  Anyway, it is called radio frequency surgery.  It is also used on soldiers with nerve damage and pain. 

Hi Alicot - so happy to read your post and to know of that you are now pain free.   This is such wonderful news.  Radio frequenct surgery sounds like a positive surgery.  I have never heard of this.  I live in Canada and will check in with my physician and get her feedback.  Thank you so much for your post,  I am always interested in learning of treatment techniques.

Thanks for your response. The trick now is....will it last.  It came back twice and he really burnt it this time...more intensely!  Here's hoping it actually lasts for a while! Geez! 

 

Hi Alicot - I am totally with you hoping your recent procedure will last.  I am very interested to know how you are doing now and in the future.  Very best of good wishes!

Hi Alicot, It's so kind of you to reply. I'm really impressed with the way eveyone helps each other on this forum and it's been a great comfort to me that we respond to someone else's pain.. Only we sufferers know just what we go through. I'm so sorry that you have had this thing, obviously for quite some time and I do hope that you've found lasting relief. I've found that each of us respond differently to the various treaments so I'm sure that you've found the one that's right for you.. Yes I've had the procedure that you mention 4 times with differing results. My neurologist calls it Thermocoagulation.. He is very reluctant to do this again because he tells me that each time he operates it becomes more dangerous. because of the placement of the nerve. The last time ( 15 months ago )  he told me he would try to ' knock the nerve out completley '. I didn't loose the pain altogether but it reduced enough to let me get on with life. Now I have it back and haven't washed my face  for days. I dread even answering the door or phone because I seem to get an attack every time I speak. My poor husband now has to do the shopping and hospital visiting my son and his girl who have had premature twins at only 26 weeks. It's really hearbreaking not to be able to speak to them and to see our tiny babies. This thing can affect every aspect of our lives but I would add to any new sufferer that each case is different. Although it doesn't run in families, my mother also amazingly had TN but in her case it was managable. So please don't despair.. Thank you so much for your reply.  and do keep in touch, Gill

Hi Gill - I just posted you a very long message.  Not paying attention to what I was doing, I lost it - can you believe this.  Will send the message again in a few hours.

Hi Gill - a few days ago a member from this group had submitted my name and I was accepted. It has only been a few days for me, but so far, really like the group members.  Giving and getting good responses.  How do you feel about this group.  Bless you.

Marlene, I think this is the most wonderful group and I'm really glad I found it. I think you've been particularly helpful and have responded to each anfd every one of us. What a help to find people who really understand what we go through and try to help each other.. How are you at the moment.? Love Gill

Hi Gill - thank you for your loving words.  I have no one who understands what I go through on a daily basis.  I must admit, I was a bit cautious when I joined this wonderful group ( my very first group) but am so thrilled that I did. the support is kind and compassionate and feel that perhaps if I make a comment, will help at least one person.  My sleep is very off.  Have ben experiencing this now for awhile.  I do take a sleeping med but will only put me to sleep for no more than 3-4 hours.  I am on disability so really have no structure in my life.  My activity level is down and I;m sure that this is part of my sleep problem.  Today, pain level is about a 5 - this is good.  Sure hope your day is better.  Please keep in contact as I always enjoy reading your posts.  God bless you Gill.