Hi…Well this is all new…I was a member ( still am ) of the old site and this website dragged me through some of the darkest days of my life…Can anything be as bad as Trigeminal Nuralgia Type 1 and 2…Yes…sadly it can…as I found when I awoke in a French hospital back in January 2012…AD…never a word uttered before…AD…the deep dark monster reared from peoples nightmares that exists in the real world…AD…is lifelong…plunging you into a living hell from which there is no escape…AD that propels you into a brand new world…your old life forgotten…family and friends dissolve like asprin…no one understands…You are mentally destroyed for a while…but then a glimmer of hope…you live with this monster…It becomes your only friend…it is a welcome now to your new life…Pills are routine…plunging you into a sleeping cocoon till you wake the next morning…who is ther…Yes…your new and only best friend AD…Afer living with demons this past 5 years…I am ready to tell me story…I am going to write a book…I was a successful business women before this monster appeared…Google me…Carol Harmer… Much has been written on the subject…but I defy there be a story like mine…what do I hope to achieve…well I want to drag this monster into the open…I want to share my story and hopefully bring AD out more in the public eye…Drugs have not changed since 2012…No more help out there…It has to change…Lives are ruined…families lost…It is time to stop…There was a wonderful lady on this site who took her life…no names to me mentioned…but I am sure she was not the last…THis isnt a cry for help for me…it is a cry for help for ALL of us living in this darkened world…laid low by medication…struggling to explain to the outside world just how this has devastated our life…and it is NOT a migraine…Wish me luck as I start to wrote the book on behalf of all of us…we will be heard…It would take a politician to have this a week before funds were pumped into research…but we DO have a voice…and I will be heard for us all…Love and Hugs Carol
Thank you for your post, I really wasn’t fully aware of what Anesthesia Dolorosa was and how severe the symptoms are, you have great strength and I wish you luck with your book.
Whilst I was refreshing myself on AD I stumbled on a personal blogspot of a woman who helped cure her husbands AD using “Mirror Therapy” like the way they us it to cure phantom limb sensations in amputees. She says it probably works best if you stay in the role as patient whilst someone else takes care of setups & therapy because the key part is the illusion that the brain thinks it is looking at the opposite side, link below.
I have TN1 and TN2. I started my career as an analyst as well selling daily and futures in electricity. I lasted about 15 years then started my dream career in decorating. I thank God I have flexibility in my schedule now. I can’t even imagine…Just curious, what procedure caused the AD?
Carol, I can fully relate to your anguish as I have had AD as a result of Gamma Knife and a Glycerol Injection gone wrong because they were misdiagnosed treatments.
I have had this condition for almost 15 yrs. now and take heavy
doses of Lyrica, Tramadol, Klonopin, Topamax, Sertraline plus topical and oral Lidocaine. which numb the nerve.
I take medication 6-8 times a day (got to write them down or I forget which I’ve taken).
If I miss a dose, the facial pain comes roaring back. It is continuous, except for sleeping. Without my meds I would go crazy with pain. I Thank God for the medication! Medication is literally pinned to my clothing in case of emergency.
I have had to modify my life, declining or changing plans if the pain is too great
And, yes, people do not understand what this pain is like. What a monster!
My medications have not changed in about 10-12 years. only the dosage.
I am so happy that you have written about Anesthesia Dolorosa.
Yes, I 've lost many opportunities in my life but now I don’t fight the pain so much
Interesting, scientists can put a man on the moon but can’t find a way to stop a continuously firing nerve! Yes, we sorely need new medications that treat rather than just bandage!!
Carol, it’s me again!
I just want to tell you that you will be in my thoughts and that I am so happy you are going to write your experiences in a book. Keep positive and have faith that life will change for you and me.
I heard about the " mirror Theory “…Tried it…for a year…nothing…didnt help me at all…not one jot…So I gave up…I have researched and researched this…People with true AD…caused through cutting the nerve never reach a pain free life…They can lead a drug fuelled life where each day rolls into one…but pain free…no sadly not… I truly wish there was an answer…Education that brain ops can lead to this would be good…but at no stage on my TN did anyone even mention AD…I was physically sick when I was told I had this…A life of this…not even terminal cancer would be worse…with terminal cancer there is an end…with this you lead a " normal lifespan” 20 more years of this…I cant even think about it…I wipe it from my mind…dismiss it…cant even contemplate it…
Melanie…I was a FX and Futures trader since 1983…I loved my job…loved the buzz of the markets…Was extremely good at what I did…I had TN1 and 2…when a particular flareup left me hospitalized for the first time in Dec 2011…I was offered an alternative procedure to an MVD I jumped at the chance…I would have cut my head off at that pouint…what I didnt know was that it wasnt a new procedure…It was the severe the Trigeminal nerve which is banned in most countries except France…was never told the risks…AD never mentioned…It was supposed to be a 45 min procedure…5 hrs later I awoke in intnsive care…paralised from the top of my head to below my chin…My eye…mouth face had dropped…I couldnt speak…I couldnt even scream which is what I felt like doing…It was too late…my nightmare had just begun…
Jat…I have been positive for 4 long years…I have lost my husband…my family…my friends …my buisiness…my life in Spain…basically my life…I have nothing more to lose…I will never have another partner as I know that no one could ever cope with a partner that has AD…if anyone could have done it was my husband…but he lost his wife in 2012…leaving me in 2015 was par for the course…I have run out of faith…there isnt any left in me…The only thing I cling onto now is to wirte this book…to drag this so called " rare " disease out into the open…to channel what energy I have left to making people aware of the daily struggle we all have…I just hope I can do it…for all of us…
Oh Carol, thank you for replying to me. I did not mean to upset you or cause you even more stress. I understand your losses and your pain. I applaud your intention to write your book. Go for it! And, maybe write an article for Neurology or TNA Quarterly Magazines. If there is any way I can help you (minimally), please let me know. We sufferers need to stick together and let all of our frustration and agony out. The rest of the world does not understand but those of us who do are good listeners. Peace, Joanne
---- Carol_Harmer ■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■ wrote:
Carol: I feel for you! I have a good friend whose TN, types 1 &2 were caused by a botched root canal. He had to take a disability, early retirement. He takes morphine on a daily basis. The good news is that it doesn’t compromise his activities at all. You need a good pain specialist to prescribe it, at least in the US. His only side effect, as expected, is constipation which he can control with OTC MIralax. Good luck to you.
Thanks for reply, just thought the mirror thing might be worth a try, but fully understand “been there done that”, so much of this medical stuff really is “horses for courses”, nevertheless all power to you.
Oh Carol how I wish I could ease some of your pain. My TN2 journey began Christmas of 2012 and I remember reading your story since. I am so sorry to hear of all the loss you have endured over the years. You are an inspiration and I so admire your strength. Sharing your story and raising awareness is a wonderful idea, we are here to support you every step. I remember trying to come to terms with having TN and what I thought was my life being over at the time, and i remembering concluding that if I could help just one person with TN, then it wouldn’t all be for nothing. I think you are going to help many people by sharing your story. Best of luck to you Carol, hang in there, a warriors path is never easy. Sending you healing thoughts xx hugs
Thank you all for your replies…Yes… a warriers path is never a easy one…but I never believed it would be this hard…Yes I know there are limbless people…3rd world starving etc…but TN and ATN and AD has been deigned as the worst pain a human being can tolerate…THE WORST PAIN !!!..ok…my question is…if its the worst pain to endure…tell me …why isnt the medical profession doing more…much more to find …not a cure…but at least a standard set of drugs that are not 20 years old and do not make your mind turn to mush…That would at least be a start… The other start would be for the medical profession to stop lumping us in with addicts and trying to ban some of the medications we need to take to help us get through the day…I find it disgusting…and I know each and every one of us would opt for never taking so much as a asprin if there was a “” cure “” out there…It infuriates me beyond belief…One Neurosurgeon… one Neurologist ( male )…to have this and the whole world would know how we suffer…and we would never be classed as addicts ever again…How disgusting that we have to fight this as well as our " monster"…Tamzee…I remember you from my dark days of 2012…I haven’t felt strong over the years… I have fell to pieces many times over the past 6 years…but in the darkness of my own room…my own mind…I have been so frustrated when I have been dismissed by family and friends as having Migranes…I have wanted to on many occasions scream my frustration and say " pick up a f***ing book on TN…ATN…AD…then tell me iv got a f***ing migrane !!! but I havent…I have stayed silent…took their dismissal of me inwardly…built another massive brick in my wall…Can I be hurt again…No…I cant…there is no one I care about anymore who can possibly hurt me…Its been done…Writing this book in my forthright way…I hope one day my sons…my ex husband ( now ensconced with his new wife ) and my immediate family will actually pick it up and read it…and although the pain that has been inflicted on me wont subside…ever…at least if they feel something…a teeny tiny grain of shame that they didnt take the time to find out what was wrong…that I wasnt a hypochondriac overnight…That.I didnt want to take all the medication that made me sleep…slur my words…stagger about…more importantly that I wasn’t a drunk…as friends and family insinuated…as if I could drink with these drugs !!! what planet were they on…why wasnt my word good enough to the people who supposedly loved me…
Well…although the hurt wont diminish…I have come through the other side of that particular pain…My book will be for all of us…we all have been down the same road…but I am sure that most of your have had the love and support of your family and friends…sadly that wasnt my story…but I will get it written…I have no idea how to publish it…so any help on that front would be greatly appreciated… We are all warriers…and one day the war on this affliction will be over…Love anf hugs to you all xxx
Firstly,I am soooo sorry for your pain
Secondly-nothing will be done until one of the big shots of their kid gets this disease is whatever it is.
Thirdly,there is a good article on the net on the war on opioids.If you would like I will send it to you.
Fourthly-the last doctor I saw had me fill out forms,and they were all about head-aches.I just wanted to toss them .I refused to fill them out-telling the doctor I do NOT have headaches.
I have no experience in publishing books.If you have a large library near you they may have programs.You could even do an e-book.I would buy a reader just to see your experiences.
Doctors have no clue what we have.
We get lumped into whatever experience that they have had in school.
I am so glad someone has found the stamina to write a book.
The biggest problem is the nervous system and brain are a mystery. You can’t “fix” what you don’t understand or know about. We simply do not know how the complex human body really functions on a fundamental level.
For example, if you are under 12 and have constant seizures that don’t respond to medication there is a radical surgery in which the quarter or half of the brain where the seizures are based is removed. REMOVED. They take out you brain. And you know what? You recover with minimum problems. The body even fills in the space where the brain was with a jelly like substance. No one knows why or how.
Our bodies are astounding. When it goes right its really right but when it goes wrong it can be really wrong and impossible to “fix” because we simply don’t have the knowledge yet.
Medicine is a work in process. Unfortunately with the nerve pain we’re all so far ahead of the science we’re almost on our own.
Carol, I was wondering if you have heard of the Gamma Knife treatment or Micro-Decompression of the Trigeminal nerves. My TN was “drop to the knees” painful, always in tears and wanted to die, was unable to function in general or do my job. After researching the internet I discovered these procedures. Was referred to a neuro-surgeon, had the Micro-Decompression brain surgery (not as scary as it sounds). I still take pills (3 Lyrica and 6 carbamazepine) but my pain is under control. There is no pain like TN. It’s rated the top 10 most painful diseases in the WORLD and they don’t call it the suicide disease for nothing. I wish you the very best and good luck with your book.
Another curiosity on the epileptic front, for many that don’t respond to the medication going onto a ketogenic diet, <50g of carbs per day can minimise or completely eliminate seizures. A low car.b diet requires significant changes in body chemistry, the question is whether it is masking or eliminating the seizurer issue?
Yes I have heard of the Gamma knife procedure…and the micro-decompression…Sadly …whatever the surgeon did to me in France wiped out any chace I had of ever having anything done to my brain after that…The fantastic surgeon in Spain told me that I should never have another procedure because of the past one…and that no matter how hard it was to cope with …I had to cope…He was as gutted as me…but there it was…To be fair after France and the butcher…I would now never let anyone near my brain again…its all I have left…and with anymore damage to it he couldn’t predict the outcome…That was enough for me…Dont get me wrong…There are days when I just want to die…to curl up in a ball and just die…but the human spirit is a wonderful thing…and you instinctively want to survive when the chips are down…Sparky…I do keep to a very low carb diet…I too heard that…does it help…its so hard to say…with AD it is 24/7 pain…but there are varying degrees…usually pain at a 4 I can live daily with…I never used to be able to…but over the year my body and mind have adjusted…so a 4 I take in my stride…its when it goes above 8 that is the problem…and it is happening more and more I guess as the body gets used to the drug doses…also…sadly as my surgeon in Spain said…after three years the TN pain came back with a vengeance…so for me it is a double whammy…I just think that with the TN and AD being so rare we are the forgotten few…There just isnt enough research done…and as Smiles said…even Neurosurgeons do not really understand the brain that well…its way too complex and therefore we fall by the wayside…*I think I understand the whys of it…but unless you suffer the crippling daily grind of pain and meds and life changing things that occur to you …there is no way on this planet that you can understand what we go through…I also dont think our plight is publicised enough…every other illness and disease is out there and spoken about daily…but there really isnt that for us…I just hope I can find the strength to write this book which I am so passionate about…and also as I said to find a publisher who is willing to take a chance…I am not famous…so it is going to be incredibly hard to do this…but I do feel our story has to be told…I dont know what it will achieve…but even if it gets it out there and gets it discussed then that is a start…it really is…who knows where it will lead…love n hugs…
I am so sorry.
I am sharing the same living hell, the very same nightmare.
After undergoing balloon compression surgery, I woke up and quickly realised there was something seriously wrong…
I spent two weeks in hospital and was diagnosed with refractory trigeminal neuralgia until my neurosurgeon admitted it was, in fact, anesthesia dolorosa.
Good on you for writing a book.
How are you going?
I can say I am dfoing ok…but we know that living with this hell you are never ok really…You accept…there is a difference…I believe…strongly …that because AD is a by product of a procedure of surgical intervention the medical profession is loathe to admit any liability…they close ranks…rarely admit anything…but the crucial point is that AD is rarely mentioned when undergoing any form of surgical procedure…Also TN sufferers would in times of a flare up agree to anything to take away the horrific pain…BUT…TN sufferers need to be aware of all the facts before agreeing to surgery…and AD happens more often than not with surgical procedures…and quite frankly it is worse than TN…and if anyone had told me that I would have been left with a worse condition than TN I would have laughed at them…but I certainly would not have agreed to any form of surgery…EVER !!..TN isnt 24/7…AD is…I would also have tried not to be superwoman…to carry on as normal…I am not normal…I never will be again… I…sadly …have had to accept that…
Trying to write my book I have found it so emotionally draining…I have had to visit places in my mind that I would much rather forget…but I am going to do it…even though it is painful…I feel that I have a story to tell…and hopefully be a voice for AD sufferers…who I feel have been forgotten…