Tuesday, August 20, 2013

Our Family's Journey With Trigeminal Neuralgia - What YOU Need to Know.

Thank you Rebecca Thorpe.

Trigeminal neuralgia is a chronic illness my husband (J) was diagnosed with 6 years ago. 

Here are 3 Things I want you to know:- 

1. Trigeminal Neuralgia  is a brutal, relentless, unpredictable disease with no permanent cure.

What is trigeminal neuralgia (TN)?

      TN is an excruciatingly painful and debilitating condition, known as "the suicide disease."
 It is regarded as the most painful condition that is known in the medical world. It is more painful than kidney stones, giving birth or a heart attack.
 It is a disorder of the trigeminal nerve in the face which results in its overreaction to everyday stimuli, such as talking, eating and light touch.
TN triggers a violent, electric shock-like pain which can last for a few seconds to a few minutes and repeat in episodes lasting weeks and months.
 The pain can also be described as stabbing, shooting, burning, excruciating, and unlike any other pain previously experienced.
 Normal painkillers, even morphine, have no effect and initial treatment with anti-convulsant drugs can have very unpleasant side-effects.
When these medications cease to be effective, or the side-effects become intolerable, various types of surgical procedures are carried out but to date there is no known cure.
 Although uncommon, children and babies can also have TN.

2. My husband is still living with a form of this disease. 

He had brain surgery 3 years ago to put an end to  his TN which was no longer responding to strong drugs of any kind.  I wrote in my updates at that time, that the surgery had successfully taken away the brutal stabbing, electrical pain that he was experiencing in his face 24/7 without a break before the surgery. Thank goodness that still holds true and we are extremely grateful for that outcome.

However TN is a dark enemy....
and often the side effects of the surgeries which are extremely delicate and rummage around between the nerves under the brain that lead to the face, neck and head, help alleviate one kind of TN pain, but can leave you with or trigger another kind of pain. 

The MVD brain surgery is the closest surgery to a cure, but for some it only lasts for a number of years and for others just a few months. Many have suffered through multiple brain surgeries hoping for a better outcome.

In J's case, 2 other nerves in the back of his head close to his scar were damaged during surgery. These nerves are over sensitive and jangled and with no trigger or clue can act up at any time. They live so close to his trigeminal nerve, that when they act up his still extremely sensitive TN nerve thinks it is feeling pain and so J feels symptoms of something called Atypical Trigeminal Neuralgia (ATN) or type 2 TN. 

This pain often begins with a brief warning when his TN surgical scar becomes tight and painful. (He really is Harry Potter). 

It then leads to intense, one-sided head pain that bores into his forehead and often spreads down to his eye, face, mouth, gums and teeth. Mostly he is able to manage it with over the counter meds, but sometimes it takes hold and requires very strong meds, that may include injections he self-administers and in some cases he has had nerve blocks from the neurologist directly into the nerves in his head. (If you have ever had one in your shoulder or knee imagine having it into your skull in an extremely sensitive spot. I thought I might need sedating and I was only watching!)

So these last seven years (since first diagnosis) have been a journey for us in many ways. We have lived with the lows and highs of stabbing, burning, electrical pain, the hope an MVD would cure that and the news that it has. 

But J now lives with ATN as a chronic illness with deep pain that comes and goes with no warning, can remain 24/7 for days and is still a beast to contain. He still takes a concoction of trigeminal neuralgia meds on a daily basis and more meds to counter their side-effects. (We joke that we are Walgreens' emergency suppliers-the pharmacy we use!)

Amazingly to me, since returning to work after his MVD, he rarely misses a day of work and gives himself 100% to his work commitments. He lives with and manages pain, I don't think most of us can imagine.

But what has this meant for us as a family? What have we learned about living with a chronic illness and how has it changed our lives?

It is our social life that is most affected. He conserves his energy for work.The children and I all live with J's illness that has no pattern or cycle. We rarely make plans far in advance anymore. Very busy week days for J mean often, he takes it very slow at weekends.When this happens, he often sleeps for much of it, leaving the kids and I as an incomplete unit without warning or ability to plan.(Well, Jacob and I. Benjy and Aron are excellent competitiors for number of hours slept!) 

 It is a lonely, extremely painful, relentless, unpredictable and exhausting journey for J as patient and me as caregiver. 

There is no end to this for us. 

This is our new normal yet it feels very old.

3. We need YOUR help to get the word out about TN. 

TN is so rare and misdiagnosed that even the World Health Organization (WHO) does not recognize it. This means TN does not get funding, enough research or the publicity it needs to ensure sufferers receive a quick, accurate diagnosis, effective treatment and a more permanent cure.

Here are 5 things you can do to support finding a cure. (None involve giving $$$!)

  • Sign the Petition. We need 10,000 signatures on a petition for the WHO to add it to their 'Health Topic' List. Click Here to sign the petition and to learn more about the importance of WHO recognition.
  • Learn About TN & Spread the Word. TN gets wrongly diagnosed and people suffer for years, having painful and unnecessary root canals and other dental work. So if you are a doctor/dentist or married to a doctor or a dentist please go and learn about it. If you know a doctor/GP/ neurologist ask them if they know about it. J was very lucky that our primary care physician, and excellent diagnostician Dr Aimee Seidman suspected TN from the first time he visited her with sharp, electrical, stabbing face pain. She sent J to an ear nose and throat specialist who made sure there was nothing else going on and then to a neurologist who also recognized the symptoms, within 4 days of visiting our primary doctor. Many people do not get to this point for YEARS.
  • Repost this Blog Post and encourage others to read it
  • Support International Trigeminal Neuralgia  Day on October 7th, by learning more about TN and displaying the TN ribbon on your Facebook page or purchasing a TN ribbon. 

Find more support and information here:-

Trigeminal Neuralgia Support Groups

I know many of the amazing people, (some TN sufferers themselves)  who have founded these support groups. I greatly appreciate  and want to thank them for their tireless effort to support TN sufferers and their families.

 Treatment Diaries -Private and anonymous support for many illnesses, including TN  @treatdiaries

TNNME Trigeminal Neuralgia And Me -Facebook Support Group and Advocacy @TNNME

End Trigeminal Neuralgia open & closed  FB support group
@EndTN @Rambling_prose

Support For the Supporters of TN - Trigeminal Neuralgia  Closed Support group for Caregivers

Watch and share:-

iCNN has a video about TN aka The suicide Disease Trigeminal Neuralgia aka The Suicide Disease

Thank you for reading to the end of this post. I truly appreciate you finding time to understand TN and its effects. Now please help us find a cure for TN warriors and our families and leave a message to let me know what you are able to do to help, from the list above.

Have a low pain/pain free week.


 Please email me at gilly@bringingbooksofcomfort.org or leave a comment on this post below. I'd love to have your feedback. 

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  1. Thank you for writing this full, descriptive blog about Trigeminal Neuralgia.

    The more people write and talk about TN the better. We need awareness. Thank you for linking our awareness page. Everyone is welcome to that.

    I can only wish Jonny well for the future.

    Thank you for being such a compassionate caregiver and supporter.

    1. You are welcome Liz. I know how hard you are working to support other TN Warriors whilst dealing with TN pain yourself.
      We need to get the word out beyond the TN community, so that others living with this terrible pain are diagnosed quickly and accurately. I read too many stories on your site and others, about the lack of knowledge in the medical community and the incredible damage that does medically and emotionally to those suffering without a diagnosis or access to medicines that can help..
      We cannot give up hope for a permanent cure and each person taking one small step- by signing the petition and raising awareness will get us one step closer to that goal.

  2. Hi Gilly,
    As you know, TN has devastated my life and I am in pain 24/7 and had a failed MVD that also damaged my Trigeminal Nerve.
    I am doing as much as I can. Posting the information for the petition and the ribbons and I'm running the Facebook TN Awareness Day page (http://www.facebook.com/Oct7thTNawareness) where I make various posts as often as I can for people to share and I try and keep it up to date so people know what's going on.
    I also have a website (www.tnawarenessday.com) which I started because I was going to sell TN/Facial Pain awareness items like T-Shirts etc but circumstances haven't allowed me to do that for the first awareness day. However, I believe this will be an annual event and our opportunity to produce items to raise funds haven't been lost. The website now has information on all facial pain disorders. Someone actually told me that it was the most thorough, concise site for facial pain disorders they had ever seen, which was a huge compliment coming from someone who worked for a support group. But I will update it if people know of something I've missed!
    I continue to what I can, having to work around the pain like the rest of us, but dedicating as much time as I can to do all of the above.
    Thank you for doing this, as you know, we need TN to be recognised by the WHO as it would make a huge difference to the funding, resources, information and the education of health professionals.
    I have also been in contact with NASA! That is a work in progress which might lead to nothing, but I'm asking for their help.
    I'm in contact with the Department of Health here in the UK to try and get TN to be linked with the training and education of Dentists. Again, I'm waiting on their next reply. But at least they are responding!
    I also have a blog that people are free to read. It is my journey with TN (http://nikki-hopewhispers.blogspot.co.uk/).
    OK..that's enough rambling from me!
    I continue to wish you, Jonny and your family well and always look out for your messages on twitter.
    Thank you for always being such a wonderful support. I value your friendship very much.
    Thank you also, for everything you do as a caregiver, you are a remarkable lady.
    Nikki x

    1. Nikki -your bravery, honesty and drive to achieve in the face of your terrible pain always leaves me in awe. It's incredible what you have already achieved in raising TN awareness.

      Yes -what a brilliant idea to educate dental students from the start. Dentists are at the forefront for redirecting patients to doctors for TN. I know this is not how you intended to spend your time but you are doing a phenomenal job. I will add your links to the body of my post so that people can get to them directly. Nikki -you have me as a friend and support and you know how to find me on twitter! We're all in this together. Gilly

  3. My name is Tatiana and Iam from Brazil. I'm 39 years old and this week I had the 5th surgery of the TN. I still waiting for a positive answer for surgeries and treatments...
    I am following you and your page trying hard to keep more and more people knowing about this terrible illness. I also signed the petition.
    Thank you very much for all of your precious effort againd the illness!
    Lots of Hugs...

    1. Tati -I am so glad to meet you and so sorry to hear how much you have already been through in your fight with TN. What is awareness and medical support for TN like in Brazil? Is that where you have had your surgeries?

      Thank you very much for following me and for signing the petition.I hope many others will do the same. There is something very empowering about taking action and fueling hope for a cure. You are not alone. I hope you have been able to get support from the sites listed in the post and know from them that many of us understand your pain.Please keep in touch and good luck with finding the right treatment and surgeries.
      Gentle hugs to you too (so they don't hurt!)

  4. Hi Gilly, Has your husband tried having some craniosacral therapy? This can help TN and may be able to help with the other issues now. I think that anyone else considering the surgery option should seriously try craniosacral therapy beforehand. There is some very good anecdotal evidence that this can help with TN and even if it doesnt I think it is worth trying before such drastic surgery.

    If you need any help locating a therapist you can look up the cst website www.upledger.com.

    I personally havent treated anyone diagnosed with TN however I do suspect that atleast one of my clients had it - very mildly - and did have some facial relief after treatment. I write this to bring some other options into view. AS you say there is little research in this condition and even less for CST. I hope some of this helps you, your husband or other people looking for help. (for clarity I live in Israel so I am not writing this looking for clients, and saw this posted on a friends facebook page.)
    All the best

    1. Hi Daniel, Thank you very much for taking the time to read the post and leave a comment. I'm glad you have heard of TN and it has crossed your radar. Awareness across health professionals is so important. Some of the research into TN is going on in Israel. I'm a big fan of CST. It was a miracle cure for my eldest son soon after his birth when he seemed to be crying 24/7.

      I know that craniosacral therapy has been helpful for some TN sufferers before and after surgery and you are right to raise it as an option. TN sufferers oscillate between not leaving any stone unturned and for obvious reasons feeling very anxious about anyone manipulating or pressing their head or even touching it., since a gentle breeze or a kiss for example, can set off an attack.

      My husband did have some CST but it triggered more pain. After brain surgery nothing is in exactly the same place as it was before and his head is incredibly sensitive even months/years later. His neurologist was happy to support it if it helped. Everyone who really understands the horror of TN is up for trying alternatives....so your suggestions are appreciated.

      PS did you grow up in HGS?

  5. Thank you so much for all your comments. I do hope you, Johnny, and your family get better each day. I have had atypical TN since a sinus surgery in 1991. I've had over 20 prodcedures & surgeries including gamma knife & brain surgery. The pain today is just as bad, or worse, than it was the first day in January 1991. I SO need more awareness of TN. Doctors truly have no concept of the pain we are going through and how it has totally changed our lives. All the medicines have so many terrible side effects and most of the time we just have to pick the one that helps the most with the least side effects and live with that decision. Of course, none of the meds help the TN forever. They always get to the point that they don't help at all and then you start your search over again for something that will help the pain and get you through the days and nights. The scar from my brain surgery starts to hurt also and I know that is a bad sign that the TN is about to get the most painful. Again, thank you so very much for all your comments. For some reason, it helps to know that other people know exactly what you are going through.

  6. Pamela - I am so sorry to hear that you have been suffering for such a long time with ATN. Doctors/ surgeons/ dentists also need to know that their interventions near the TN nerve for sinus surgery/root canals etc can trigger TN in the first place.

    Yes we need to raise awareness. The TN community gets it. They live with it. It is everyone untouched by TN who needs to hear the stories, the devastating life altering changes TN sufferers and their families go through and what it really means to suffer with this kind of unique brutal pain without a complete cure in sight.

    I'm glad this post helped you. You are truly not alone. A gentle hug to you.

  7. Hi Gilly! I cannot believe there is such a horrible disease like this. As I was reading I was hoping that you would say that your husband was feeling better these days considering all of the pain and struggle that patients with this deadly disease have to go through! You are such an inspiration to want to go and speak regarding this. I have to admit, that my passion for health and awareness has come from family members with health conditions that they have been suffering from for years so I can totally empathize with this. I'm sure you are going to do a fantastic job! :)

    1. I know it is pretty shocking (every pun intended) that this disease exists and that there is no permanent cure or that WHO does not recognize it.. My husband is very lucky that he does not have the shock-like waves of pain any more. That piece seems to have gone. But there is so much to be done to raise awareness in the wider community.. My tweet chat is one small way I can add to the large campaign to do so.

      Some of the most powerful support for illnesses have come from family's response to caring for one of their own who is sick. Look what Michael J Fox has done for raising awareness of Parkinson's Disease.

      Thank you for visiting, reading and commenting Brittnei.Greatly appreciated.

  8. As a TN patient I can relate to your story, and how it affects every aspect of our lives, and even moreso our families lives. The more stories I read like this,the less hope I have. How can we change this if there is nothing no cure? I pray every day for news of a cure, and so far nothing .... My best wishes to you and all families like your own who are brave and supportive! Coming from someone afflicted with this horrible condition, I would give anything not to be the cause of so much torment to the people I love most

  9. Carolyn, I am so sorry to hear you are suffering from this cruel illness. You ask THE question - how to keep hope alive when we know there is no complete cure? That, I think is one of the most difficult things TN patients and their families grapple with in the face of unbearable, unrelenting, unpredictable pain.When I read the stories I feel the same way. I have found that when I spend too much time looking into the future for TN sufferers, I find a bleakness and sadness descend. So i take breaks from others' stories. After all I have my own -as you do. So I focus as much as possible on the things I know for sure that give me comfort and pleasure and are more in the moment. -the beauty of the seasons, joy in our children, moments we enjoy together and times when we laugh a lot. I pray for guidance and not to be alone in this difficult place. There is a lot of hope in all those things right now.

    I remain very hopeful that increased research and a cure are possible in our lifetime by taking an active part in advocating for those things. I know that is how many TN sufferers and their families are coping. They support others in support groups, they create posters, materials, jewelry and campaigns to raise TN awareness in the broader community. Their indomitable spirit in the face of so much struggle is inspirational to me and infectious!. They find meaning in what they are doing and this gives them purpose and a sense of control of their situation. This gives meaning to their lives and so hope is not centered only on a cure but on making their lives as qualitative as possible in the meantime. That doesn't mean they do not have dark moments or that a cure is around the corner, just that they have reframed their hope on tangible, doable,achievable, hopeful goals.
    I hope that whilst hoping for a cure seems a distant dream, you can find some some small seed of hope for yourself , that keeps you taking small steps forward knowing you are not alone and that together we will find answers and eventually a cure.

    Thank you for taking the time to stop by and leave a message. Please keep in touch.


  10. I have atypical trigeminal neuralgia. I have been suffering for over three years and am finally able to see a neurologist. I'm 26 years old and suffering daily. People see me and I look fine, but I can barely make it off the couch most days. I have never met anyone else with this condition so I've been searching the web to find others like me. I'm so sorry your husband has this too. I wouldn't wish it on anyone. I hope we can both find some answers and a cure. I'd love to talk more and I'm interested in reading more on your blog. God bless you and your family!

  11. I am lying in bed in tears yet in some strange way i find solace through youself and other writters here. I too am suffering with this cruel and awful diseae that so many are not aware of. I do not think this out of pure ignorance but simply a lack of knowledge and promotion of this disease. I feel alone and completely isolated and fearful of every attack that may come. Its the not knowing that fightens me and causes me to be reluctant to go anywhere or do anything. Bizzarely i am a health proffessional and until i began suffering with this i was unware of this disease. I find that extrordinary. I gratefully thankyou for all you do. God bless.

  12. Thanks for sharing your story. I am a 25 year old who spontaneously woke up to ATN pain in in the whole left side of my face. 16 months in, and I have still not found full relief. Despite many Medications, my face has not stopped hurting since November 2014. I wish your family and your husband all the luck in the world. If you want to, and have a chance, you can see my full story on my blog at maskingthepain.com