Thursday, 22 March 2018

Day By Day, Hour By Hour.

It has been a long time since my last post. It has been quite difficult to put pen to paper, I haven't been in the right head space. 

My pain has been absolutely horrendous. It has gotten worse and worse, to the point where it leaves me incapable of doing anything. Trigeminal Neuralgia has taken over my life, despite my valiant efforts to fight this monstrous condition. The pain is so intense now, it's difficult to function. I do have good days, where the pain isn't as bad. It allows me to be normal for a while, paint a smile on my face and pretend that everything is fantastic. That is almost as hard as dealing with TN. I will write more about that soon. 

What is normal though? Are any of us normal? I don't think so. I have had so much time to reflect on why TN has decided to invade my brain, why I have horrific Migraines and why I have Fibromyalgia. I admit I have spent quite a lot of time feeling sorry for myself. That was foolish, as it serves no purpose. I see things a lot clearer now, it's like a cloud has lifted. We are all unique, we all have our own little quirks and issues. Some happen to be worse than others, and some people seem to have everything laid out in front of them. Why is that?? 

I have been grieving for the life I used to have. My job, friends, and freedom. Trigeminal Neuralgia has taken it away, snatched it out from under me almost 5 years ago. I am now almost accepting the inevitable truth that I will have TN for the rest of my life. It's a hard pill to swallow, but I know things could be a hell of a lot worse. 

My pain is awful now, so bad that I cry my eyes out. I bury my head in my pillow to hide this from others. This is my Battle and I must fight it. I have wonderful support. My family are there when I need them, and I do need them often. 

Fibromyalgia has also decided to wreak havoc on my body. It's insane. I feel like an old woman at times, every bone and joint in my body scream in pain. My shoulders, elbows, hips and feet are really bad. I am always tired, even if I sleep. It's wearing me out. I have an appointment with the Rheumatologist soon, so lets hope he will have a magic wand and make it go away. If not, I will just have to keep going. Taking things day by day, and sometimes hour by hour. I have managed so far, no point stressing about things I can't control. 

26 comments:

  1. Please know that you are not alone :) I am a young person living with the same pain so I understand your struggles. I have had the pain for 2,5 years and it has been a life changing experience. I am slowly trying to build up my life again and learn to enjoy the small things in life.

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  2. I just wanted to say you are a superwoman and I salute you for your incredible strength. I know you have probably researched every last method of treatment but have you tried Chinese acupuncture? It may take a while but it could provide you some relief. Also guided meditation tapes on pain relief.
    Life gives us such difficult tests yet we still manage to hold on to hope because humans are just so strong. For me I just don’t want to give up because I have my loved ones and I still pray to be able to do some of the things I want to do while I can. I’ve asked the why question many times but sometimes I just imagine myself bearing this pain perhaps for my loved ones, and it gives me a bit of relief in that sense. I’m not religious but it does make me feel better if I’m bearing sins for my family.
    Anyway I sincerely hope you find some relief for your pain. There are also a supplement called quercetin which may help, do look into it. And myelin sheath support supplement.

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  3. I have burning feeling on my right side tongue and cheek. It happens for months since nov 2017. It never stops. The pain is constant. I dont know if it is TN or not but must be something wrong with my nerves. I want to see doc but i'm too afraid with the result. I just told myself, i will bear it for my kids to see them grow. I'm tired crying, but i still do it, as constant as the pain. Hope it only a dream, and i will wake up soon.

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  4. I have a few questions for everyone who bravely posted their pain. What medications is everyone taking for their pain? I take 800 mgs of Carbamazepine, which is now a fluffer for this pain, and as I post this message my right nostril feels as if it is on fire and every breath is filled with pressure and pain!

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    1. Yes, I also take Tegretol 800mg. If masks the pain for a while.

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  5. I’ve just been told I have this. I just started to get the pain but it was only really bad for 2 weeks then 95% subsided. It will come up around my left eye making it water and blur. I have read a couple of your posts and my heart goes out to you. For my pain I am starting with just plain Advil. I have Tylenol 3 for days that might get worse. Thank you for writing all this for others to read and get an idea of what to look forward (not) too.

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  6. Hi. My dad is 79 years old and diagnosed with TM. I spent 11 days in the hospital watching him go through the most terrifble pain. I wish I could take his place. He screams in pain. The meds don't seem to help. What are the surgeries that I read about? No one talks about them. This is new to us. I hate it but I have to learn about it. I am my dads caregiver. My strong daddy is now in tears.

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    1. I want to console you who suffer from this curse. I have spent hours, days, months, and 5 years researching the curse we share. My most recent find is 5 famous people who have and have had a surgical procedure called MVP(Microvascular Decompression). I will reply as soon as I can stop crying from the horrific pain throughout the right side of my face, whivh now causing vision problems in my right eye. I will spend as much time fighting us all. TN has stolen the vibrant lives we all had and I want to find a solution for us all.

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    3. My father is 89 years old and had suffered many years with the pain of TN. He had multiple treatments of gamma knife, radio frequency, glycerol and lots of drugs - all of which were only moderately effective. He has a fairly bad case of TN. It was excruciating to watch him suffer. He went to the "best" doctors in New York City for treatment but ultimately they were not able to meaningfully relieve his pain. He also went to pain management doctors in New York City who were similarly not able to provide him relief. As almost a throw away at the end of an appointment where my dad was pressing for any alternatives, one doctor mentioned a surgeon on Long Island who might be able to help him, but the doctor (who was supposedly an expert in this field) did not remember his name. After some research, we connected with this doctor on Long Island - he is a neurosurgeon who performs Percutaneous Balloon Compression. We were able to get my dad in fairly quickly (he was essentially unable to function due to pain) and he had the procedure done. The amazing thing about the procedure is that it is done on an outpatient basis (even thought he is 89 years old) and, unlike gamma knife, the relief is immediate. No waiting for the pain relief to kick in. And no pain from the procedure itself. It is incredible and to this day makes me quite angry that no expert recommended this procedure to my dad even thought he suffered for many years. The only downside is that he has some residual numbness on his face, but given the pain he was experiencing it is an easy trade off. Sometimes you have to repeat the procedure which my dad just did yesterday (he was starting to experience pangs of pain) and he is pain free today and back to his regular active life. I can't recommend this doctor and procedure enough. Here is his contact information: http://jeffreyabrownmd.com/trigeminal/balloon.html. I hope this post brings relief to other sufferers out there.

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  9. As a sign of gratitude for how my husband was saved from neuralgia, i decided to reach out to those still suffering from this.
    My husband suffered neuralgia and it was really tough and heartbreaking for me because he was my all and the symptoms were terrible, we tried various therapies prescribed by our neurologist but none could cure him. I searched for a cure and i saw a testimony of so many people who was cured from neuralgia. and so many other with similar body problem, and he left the contact of the doctor who had the herbal cure to neuralgia. I never imagined neuralgia has a cure not until i contacted him and he assured me my husband will be fine. I got the herbal medication he recommended and my husband used it and in one months he was fully okay even up till this moment he is so full of life.neuralgia has a cure and it is a herbal cure contact the doctor for more info on drwilliams098675@gmail.com on how to get the medication. Thanks for reading my testimony .

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  10. I was diagnosed with stage 3 breast cancer in August of 2010. A precious friend told me about Dr Itua Herbal Center in West Africa,She gave me his contact number and email address,I contacted him quickly so he give me guaranty that his herbal medicine will cure my cancer and i will be heal forever I said Okay.I ask him about the process for the cure,he ask me to pay for the fees which i did and within 7 working days he sent me the herbal medicine then he instructed me on how to drink it for two weeks to cure.I told Gomez my friend about the herbal medicine so he gave me go ahead to drink it.So after drinking it for two weeks i was cured I'm so grateful and i promise i will recommend anyone with cancer to him and that what i'm doing.Dr Itua Herbal Medicine makes me believes there is a hope for people suffering from,Parkinson's disease,Schizophrenia,Cancer,Scoliosis,Fibromyalgia,Fluoroquinolone Toxicity
    Syndrome Fibrodysplasia Ossificans Progressiva.Fatal Familial Insomnia Factor V Leiden Mutation ,Epilepsy Dupuytren's disease,Desmoplastic small-round-cell tumor Diabetes ,Coeliac disease,Creutzfeldt–Jakob disease,Cerebral Amyloid Angiopathy, Ataxia,Arthritis,Amyotrophic Lateral Sclerosis,Alzheimer's disease,Adrenocortical carcinoma.Asthma,Allergic diseases.Hiv_ Aids,Herpes,Inflammatory bowel disease ,Copd,Diabetes.
    Here Is His Contact Info......[Email...drituaherbalcenter@gmail.com/Whatsapp...+2348149277967]

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  11. I have been in pain for weeks now. Still trying to work , asking for prays to keep going. Praying for myself. It is getting harder as the 5th year approaches. I don't know how much more I can take. I am tried. So tired of pain day in and day out. My Neuro MD suggest the Gamma knife, I am not so sure. 5 years of pain my quality of life is shriveling. I push and push so my kids do not see me give in. I am losing the battle. Even now as I write tears are running down my face. I want to scream!!!!

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    1. I’m looking at the date of your posting and cannot believe you have not looked for an Upper Cervical Chiropractor. Not your regular chiropractor. They have helped and are helping people with TN.

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  12. As a sign of gratitude for how my husband was saved from neuralgia, i decided to reach out to those still suffering from this.
    My husband suffered neuralgia and it was really tough and heartbreaking for me because he was my all and the symptoms were terrible, we tried various therapies prescribed by our neurologist but none could cure him. I searched for a cure and i saw a testimony of so many people who was cured from neuralgia. and so many other with similar body problem, and they left the contact of this doctor who had the herbal cure to neuralgia. I never imagined neuralgia has a cure not until i contacted him and he assured me my husband will be fine. I got the herbal medication he recommended and my husband used it and in one months he was fully okay even up till this moment he is so full of life.neuralgia has a cure and it is a herbal cure contact the doctor for more info on drwilliams098675@gmail.com on how to get the medication. Thanks for reading my testimony .

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  13. My mum has TGN and is being treated very successfully by a homeopath .... big doses of arnica!! It made a difference almost straight away.... long may it last!!
    You’ve gotta try everything and approach natural medicines with an open mind! Don’t knock it till you’ve tried it.... my mum is now coping on no medication except for the homeopathic remedies and has been mostly pain free ..... it’s early days but we are at last optimistic about a treatment .... especially one with no side effects!
    I wish you all huge luck with your journeys and hope you find this helpful. :)

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  14. ALL THANKS TO DR WILLIAMS
    I was diagnosed of neuralgia in 2011, I have tried all possible means to get cure but all my effort proved abortive, until a friend of mine introduced me to a herbal doctor , who prepare herbal medicine to cure different kind of diseases including neuralgia , when i contacted this herbal doctor via his email, he sent me the neuralgia herbal medicine via courier service, when i received the herbal medicine he gave me step by step instructions on how to apply it, when i applied it as instructed by Dr Williams i was totally cured from this disease within 1 months of usage. any body with similar problem can Contact this great herbal doctor via his email drwilliams098675@gmail.com for advice and for his product,and thanks to you admin for such an informative blog.

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  15. I want to share what may have helped me. I don't have what are the typical set of symptoms to TN. I do have pain symptoms in the vairous places the trigeminal nerve goes to though. Here in San Antonio, it seems most headache oriented doctors will refer people to a physical therapist at what last I heard was called the Texas Migraine institute, or something. While he did indeed acurately describe the development of my symptoms, and I'm sure the chin tuck method (with pesonalized angles, etc.) he subscribes to generally works (I think there are a few such places that use the same method, search "head, neck and facial pain" treatment centers?), I s not one of the lucky ones I guess.
    I ended up spraining my back from arching my back doing YouTube chintucks for a bulging disc(no angle with that method), and have had to stay on my sides for a few years, with the light kept low vow my eyes.
    Recently, I started trying to actively relax, using what I learned from my experiences with dealing with back tightening frequent guilt, and a book called "you are not your brain". Basically, I tried not to fight the tension, and let it work itself out as I tried relax. I also every once in a while tried doing 50 or so reps of chin tucks at different angles and "size" I guess, which always seemed to make things worse rather than better. Even more recently, my aunt started getting people to pray that I would get well by the summer or maybe the end of summer. 1 week she fasted for most of the day for five days. Unknown to me at the time.
    Trying to relax, maybe with mindfulness meditation, maybe not (I have ADD, so its tricky), I kept feeling like what I thought was a disk bulge at the time squeezing back into place or something. I was also excited that my muscles seemed to make my head do chintucks on there own as I relaxed on my sides (a folded or wadded up throw under my head, of the right thinness and density, keeping my head aligned rather than cocked to the side, as much as I could easily manage anyway.).
    Then one day, I felt my head push something backward during one such automatic chin Tuck, and I started feeling poked by something, and other wierd seeings in my mouth. This happened the first day of my aunts fast. On the third day, I came back from the pain management doctors, had a fit about being made to jump through hoops like an animal by doctors, cried out to my Father, and went upstairs. (I can be upriht for short periodds).
    Then I felt something break in my lower left neck. This brought significant improvement (ostensibly because there s less pressure/irritation from things at the top of my neck and/or base of skull).

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  16. A nignt or so later, my neck contracted powerfully but slowly, and I felt short taught strings in the sides of my neck. One one the right broke, which yielded further improvement with regards to my symptoms. Since then I have felt a lot of weird but distinct and clear sensations; sometimes it will feel and sound like something is tearing, sometimes I will feel something like small stick being broken away by something long and narrow pointing ugwards. The most interesting is when something thread like would catch on something like a forward poking splinter in the top of my back, and tbe tug would directly increase face sy.ptoms. Likewise, the rignt pressure would offer sudden relief, or I would just feel poked.
    Regardless, whenever I practice mindfulness meditation or otherwise and successfully relax my muscles (easy to concentrate or strive, which isn't reelaxing), I will feel different things that feel helpfull and exciting.
    I have also experienced help from various gaba-ergic substances; like tramadol and L-theanine. Tolerance creeps up on me with tramadol, the most helpfull one. L-theanine no longer works. It took me 7+ years I think before I "stumbled" upon relaxing in a helpful way, I bope it helps you and others too!

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  17. Oh! I forgot. Cyclobenzaprene 3 (three) times a day may have been key.

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  18. I am Sophie from Canada, I once suffered from a terrible and chronic neuralgia ,since 30years now , the doctor told me there was no permanent cure i was given medications to slow down its progress, i constantly felt my health was deteriorating as i constantly go out of breath,and this illness was really terrible especially when am going out with my friends, i have this constant disorder for about 30 years, this was really a terrible illness ,on thin one day that i was going through the internet,and i came across a post of Mrs kate on how her husband was been cured from neuralgia through the help of Dr Williams herbal product, I contacted this herbal doctor via his email and explain everything to him and make purchase of his product,few days later he sent me the herbal medicine through courier service, when i received the herbal medicine, i used it for 1 months as prescribed by Dr Williams and i was totally cured within those week of usage,on thin now i have not experience any sign or characteristics again . for more information you can email him on drwilliams098675@gmail.com for help

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  19. Hi Sarah,

    I have atypical trigeminal neuralgia, also. left side of the face. on all 3 branches.

    I'm going to make a long list of what helps me out. Hope this might help you, too.
    hugs.


    *B12 supplements
    more units that for regular usage. This is strictly for trigeminal neuralgia.
    It might work out for other things as well, but I have not researched on those, so I cannot say.
    A few medical studies found decreased levels of b12 on patients suffering from trigeminal neuralgia, and that supplementing helped them.
    I don’t know how people should deal with this if they are eating mostly meat, but for plant base diet eaters it’s good anyway to supplement with b12.

    *Magnesium
    It just somehow works.
    It either relaxes or reduces the inflammation by inhibiting some substances to pop into our bodies.
    Science is only partially sure, yet for me I feel a difference.
    Magnesium also helps with diabetes, from what I know.

    *Caffeine
    It just works. Somehow. Strong one. double expresso. good coffee.
    For me coffee reduces my iron levels, so I try to supplements on those from time to time.

    *Exercise
    Certain slow exercises inspired from tai chi and/or yoga do help with this.
    They mainly focus of various neck rolls, and shoulder/chest openers.
    I sooo don’t like doing them. They are super boring. And it’s hard for me to make a routine out of them.
    But whenever I do them, I feel better afterwards.
    And doing slow exercises kind of get one to be in tuned with the body – it’s therefore easier to feel what the body needs in certain occasions.


    *Omega 3
    I have read a lot of medical research studies on how omega 3 helps with pain management, especially with that related to nerve pain.
    Choosing what omega 3 works for you is personal, but needless to say it has to be good quality.

    *Infrared lamp
    This has been highly recommended by a doctor.
    Since I was in severe pain, I got the lamp first, and researched afterwards.
    There are a lot of commercial websites, and it might be harder to dig for the actual medical research, but it is there.
    In a nutshell infrared light therapy is good for pain management, and also for helping wounds heal faster.
    It doesn’t have to be anything fancy – there are lamps at 20-30-50 euros, which you can buy and use at home daily.
    It is safe. It’s not just a heat wave, it works a bit differently, by inhibiting some substances inside our bodies and helping generate others.
    For me it does work.
    To set the expectations – it does not make the pain totally go away, but it does make a difference.
    If you use it on your face, it’s recommended to get a pair of google or to keep something in front of your eyes in order to protect them.

    *Hot beverages
    Sometimes it’s the comfort feeling.
    Other times it’s the fact that the hot liquid touches the upper part of my teeth, which connect to the nerves.
    But sipping on warm/hot beverages is nice.

    *Healthy eating
    I try to eat as much as possible clean food & clean recipes, as this reduces the inflammation.
    I also mostly eat a plant base diet – the way it works out for me is that it helps balance out the hormones, and that’s good overall.
    The plants part might be harder for some people, depending on the climate and life style.
    I would say that what’s helpful is staying connected with your body, and eating accordingly.

    *Meditation
    This helps out with pain management.
    It does not make pain go away, but it makes it not be the focus of my life.

    *Doing things
    I know that when it hurts a lot it’s easier to just sit in bed, and do nothing.
    And that’s perfect sometimes, especially since the pain takes a lot of energy and the body needs rest.
    For me it’s nice to still make the effort to do things to brighten up each day.
    Like wearing sparkles on my cheeks bones, and a pinkish lipstick, dressing up pretty, taking a walk, doing a fun diy, meeting family and friends.
    It helps the mind focus on something else, and creates fun lovely memories.

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  20. p.s.: http://tnaaustralia.org.au/2015/12/18/vitamin-b12-in-trigeminal-neuralgia-management/

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