tag:blogger.com,1999:blog-3363712305146749297.post8861793207180511670..comments2023-12-17T21:45:17.581-05:00Comments on Brainstorm: Our Family's Journey With Trigeminal Neuralgia - What YOU Need to Know.Gilly Cannonhttp://www.blogger.com/profile/18393339396656670745noreply@blogger.comBlogger16125tag:blogger.com,1999:blog-3363712305146749297.post-83275034746943340522016-02-10T13:56:56.473-05:002016-02-10T13:56:56.473-05:00Thanks for sharing your story. I am a 25 year old ...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.comErika Hinzehttp://maskingthepain.comnoreply@blogger.comtag:blogger.com,1999:blog-3363712305146749297.post-3589357789476966302015-07-26T19:01:03.535-04:002015-07-26T19:01:03.535-04:00I am lying in bed in tears yet in some strange way...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.<br />JudithAnonymoushttps://www.blogger.com/profile/12054129047203895999noreply@blogger.comtag:blogger.com,1999:blog-3363712305146749297.post-91030466917439800532015-06-09T03:24:52.550-04:002015-06-09T03:24:52.550-04:00I have atypical trigeminal neuralgia. I have been ...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!Jessica Black Robertsonhttps://www.blogger.com/profile/09482910888206606272noreply@blogger.comtag:blogger.com,1999:blog-3363712305146749297.post-39139569607860646372013-09-09T12:27:57.311-04:002013-09-09T12:27:57.311-04:00Carolyn, I am so sorry to hear you are suffering f...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.<br /><br /> 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.<br />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.<br /><br />Thank you for taking the time to stop by and leave a message. Please keep in touch.<br /><br />Gillyx<br />Gilly Cannonhttps://www.blogger.com/profile/18393339396656670745noreply@blogger.comtag:blogger.com,1999:blog-3363712305146749297.post-43217350359549645592013-08-26T11:25:48.775-04:002013-08-26T11:25:48.775-04:00I know it is pretty shocking (every pun intended) ...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.<br /><br /> 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.<br /><br />Thank you for visiting, reading and commenting Brittnei.Greatly appreciated.<br />GillyxGilly Cannonhttps://www.blogger.com/profile/18393339396656670745noreply@blogger.comtag:blogger.com,1999:blog-3363712305146749297.post-35184530948593309032013-08-26T03:33:19.759-04:002013-08-26T03:33:19.759-04:00Hi Gilly! I cannot believe there is such a horribl...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! :)Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3363712305146749297.post-34094879356812016112013-08-22T12:09:41.092-04:002013-08-22T12:09:41.092-04:00Pamela - I am so sorry to hear that you have been ...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. <br /><br />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.<br /><br />I'm glad this post helped you. You are truly not alone. A gentle hug to you.<br />GIllyxGilly Cannonhttps://www.blogger.com/profile/18393339396656670745noreply@blogger.comtag:blogger.com,1999:blog-3363712305146749297.post-1622699660494599632013-08-21T19:36:24.813-04:002013-08-21T19:36:24.813-04:00Thank you so much for all your comments. I do hop...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. Anonymoushttps://www.blogger.com/profile/09579967473122223292noreply@blogger.comtag:blogger.com,1999:blog-3363712305146749297.post-6479132444048134882013-08-21T17:52:16.398-04:002013-08-21T17:52:16.398-04:00Hi Daniel, Thank you very much for taking the time...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.<br /><br />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. <br /><br />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.<br /><br />Gilly<br />PS did you grow up in HGS?Gilly Cannonhttps://www.blogger.com/profile/18393339396656670745noreply@blogger.comtag:blogger.com,1999:blog-3363712305146749297.post-89862786581475097792013-08-21T17:32:23.462-04:002013-08-21T17:32:23.462-04:00Hi Gilly, Has your husband tried having some crani...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.<br /><br />If you need any help locating a therapist you can look up the cst website www.upledger.com. <br /><br />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.)<br />All the best<br />Daniel Daniel Tarlownoreply@blogger.comtag:blogger.com,1999:blog-3363712305146749297.post-12086873857513309722013-08-21T13:16:28.310-04:002013-08-21T13:16:28.310-04:00Tati -I am so glad to meet you and so sorry to hea...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? <br /><br />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. <br />Gentle hugs to you too (so they don't hurt!)<br />GillyxGilly Cannonhttps://www.blogger.com/profile/18393339396656670745noreply@blogger.comtag:blogger.com,1999:blog-3363712305146749297.post-23179179873046720222013-08-21T13:08:48.753-04:002013-08-21T13:08:48.753-04:00Nikki -your bravery, honesty and drive to achieve ...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. <br /><br />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. GillyGilly Cannonhttps://www.blogger.com/profile/18393339396656670745noreply@blogger.comtag:blogger.com,1999:blog-3363712305146749297.post-42309640811452775482013-08-21T12:55:58.044-04:002013-08-21T12:55:58.044-04:00You are welcome Liz. I know how hard you are worki...You are welcome Liz. I know how hard you are working to support other TN Warriors whilst dealing with TN pain yourself. <br /> 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..<br />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.<br />GillyxGilly Cannonhttps://www.blogger.com/profile/18393339396656670745noreply@blogger.comtag:blogger.com,1999:blog-3363712305146749297.post-16213305954839132392013-08-21T09:41:51.829-04:002013-08-21T09:41:51.829-04:00My name is Tatiana and Iam from Brazil. I'm 39...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...<br />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.<br />Thank you very much for all of your precious effort againd the illness!<br />Lots of Hugs...<br />TatiTatihttps://www.blogger.com/profile/08379000160914682424noreply@blogger.comtag:blogger.com,1999:blog-3363712305146749297.post-72733203592726076742013-08-21T08:49:19.928-04:002013-08-21T08:49:19.928-04:00Hi Gilly,
As you know, TN has devastated my life a...Hi Gilly,<br />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.<br />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.<br />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!<br />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.<br />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.<br />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.<br />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!<br />I also have a blog that people are free to read. It is my journey with TN (http://nikki-hopewhispers.blogspot.co.uk/).<br />OK..that's enough rambling from me!<br />I continue to wish you, Jonny and your family well and always look out for your messages on twitter.<br />Thank you for always being such a wonderful support. I value your friendship very much.<br />Thank you also, for everything you do as a caregiver, you are a remarkable lady.<br />Nikki xAnonymoushttps://www.blogger.com/profile/17595883105194819344noreply@blogger.comtag:blogger.com,1999:blog-3363712305146749297.post-38306039616456498512013-08-21T05:33:10.586-04:002013-08-21T05:33:10.586-04:00Thank you for writing this full, descriptive blog ...Thank you for writing this full, descriptive blog about Trigeminal Neuralgia. <br /><br />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.<br /><br />I can only wish Jonny well for the future.<br /><br />Thank you for being such a compassionate caregiver and supporter.<br />LizRambling Prosehttps://www.blogger.com/profile/05465813762893479775noreply@blogger.com