We all look so normal on the outside and I find people don’t understand because they can’t see it. I try to explain it. That’s not true I really do just avoid. I’m lucky in some sense that I’m a paramedic and have medical field friends so they understand TN but not the pain. I have lost so called friends because I had to cancel so many things. Do any of you find this in your lives? How have you all had a social life? I have one more surgery and I need to get back out in the world and wondered?
TWO BAD YEARS _ Yes, in the year of TN and the year of post op MVD :
I lost most of my friends, identity, job possibilities, and much more - I GAINED PTSD, depression and anti depressants....
year 3 has been MUCH better - new job, 2 friends, but had a teeny stroke,,,,
Life - 1 step forward, two steps back -!!!
Actually in those two years, I got married (first time in 15 years ) as a wife, I was struggling to look happy! Not his fault!
and the only thing that helped me keeping afloat was volunteering at hospice - holding hands - ice chips - blankets
And group support facilitating kids and adults who had a loved one die.
So I would go do those two gigs and mostly my days were not as bad as the people I tried to help.... I didn't think about my pain too much - what did I have that day that was life and death???.... BUT
Sometimes, its a fine line, I had some really dark days, and nights, and dark thoughts....
BUT then again.... here is something for your current situations : Look in Search Box - or google "Spoon Theory"
Give it to friends and family!
At 50, I made a new friend at work.... so life comes and goes!
Marriage is much better now that he saw that my stroke was EXACTLY how I was on the meds - so he is much more understanding of living in Trileptal HELL before and a little after MVD.
When you are better, you will get some life back!
That’s a beautiful story thank you for sharing it. It has put a smile on my face. I kinda figured I was going to just be alone.
I am going to start volunteering. I love the thought of going to hospice.
Once again thank you it’s stories like this that help keep hope alive.
Yes kc has it right, it gets better!! Remember to try try and try again for different alternatives of medicine. I used to be afraid to be looked at as an addict, but its worse to be addicted to the pain and loneliness. And gabapentin helped me after giving it 3 different tries
Thermotronica you put that so perfectly about being addicted to the pain and loneliness - yes, that is the worst thing. Before I had found out what was wrong with me I was in such a dark place. I remember on a particularly bad day a friend had called me and she said to me - I don't feel like I'm talking to you anymore - I'm just talking to your pain. That hit me hard! But I kept searching and one thing this has taught me, you keep going somehow. I lost faith, family were sick of me, friends were baffled. I cancelled out on people too numerous times back then, became a hermit with the pain.
Stephanie things do get better. I never thought they would, but we are all warriors - we have to be! You will get your life back, it may not be the same one as you had before and it's ok to grieve for that too. Things change, sometimes we don't have control over what happens, but I can say I'm in a better place now certainly than 6 months ago. I can educate family and friends - people say what do you have? Tri-what? But hey, it's ok. I'm beginning to accept. It's still hard to think about how life used to be before this monster hit, but you WILL have a life again. I never thought I would! And finding this site has been the best :-)
I am mostly frustrated. I can say the first 9 months after all of this happened I didn’t want to live. I am 100% better than I was. You know the 5 stages of grief? Well I’m just making my way through them lol.
I haven’t had much luck with other drugs. I have been on gabapentin and just keep increasing it. I feel like I have tried all of the drugs there are. I love this site because I can see different drugs and things people have done. I must say I do find myself a little jealous when people are talking about being pain free. I’m happy for them just wish I could find that.
My husband is the one with TN. We are older and most of our friends understand our need to cancel plans at the last minute. One dear friend, however, just doesn't get it. He means well for sure--he calls and invites him to do things, but often when they get together he has planned an event far beyond what my husband can/should do. The hard part, is often he will push himself through and then he pays later.
I was a police officer with 23 years in an ready to retire in two more. We changed The Chief of Police and had a man in the interim taking stock of things. He trusted me and I would tell him straight forward of any issues. During this time. He started preparing me to be a Lieut. This perturbed the other Sgt who then started a campaign of character assassination with the jr. Officers. He was very good at it and started making me a pariah.
It was during this time that my pains started and over a couple months I ended up on a cocktail of medications. This in turn caused some serious bi-polar problems for me. Never had it before but my heart goes out to those that do.
Suddenly our interim chief left and the city hired a man who they did not want but felt that they could not go through the hiring process again. He started to interview the officers and found they really liked the other Sgt. But, me not so much. He became embittered towards me and thought I was faking Tri-Geminal to get out of work. He didn’t believe a cadre of specialist Neurologists and Surgeons who were very familiar with the disorder. He figured I must be fooling them.
Life finally became unbearable between the pain, his animosity and the medications side effects. I retired and tried to explain to him, do you want me to be in a pursuit when a pain hits? How about having a gun drawn down on somebody? If they don’t see the malady or don’t hear a familiar word like Cancer some people become skeptical.
But even with all that life is good. I’ve cut down my meds and just sucked it up for some extra pains but I recovered clarity of thought and realize it could be much worse…it could have been cancer…
Hi guys, I too suffer from the monster and this ifs my first time experiencing a pregnancy with it. It’s debilitating, as I fight to eat, drink, talk etc. I have two boys and a husband and I feel so bad for them. They are forced to have to watch this torture daily and th hat makes me sad. I am on tegretol 200mg at night, but that’s not doing much. Monday I go a pain specialist to see what else I can do or take. Never thought my pregnancy would be like this. I’m scared about the health of my baby, I’m scared that I will not be able to care for my children even after the pregnancy, I’m just a basket case. No one seems to have answers for me. I just want to get through this pregnancy we without being in this pain. How do you increase the chance of remission? What am I doing wrong? I’m praying that Monday will be my day of solutions. I need help so bad. I’m 22 weeks pregnant. Can someone just offer me something.
I just had an Aunt attack me, and ask me then "Well then, How are you sitting her talking to me if you are in so much pain then?" I said, Well it's a choice. I can either choose to get out of the bed each day and live my life and not feel sorry for myself or I can lay in bed and be in pain when I wake each morning feeling like I got ran over by a Mack Truck. Besides taking daily meds, praying, reiki, therapies, and getting monthly shots directly in my scalp and skull and shoved up my nose, I choose the first because otherwise I wouldn't have a life, and If I were to choose to Lay in bed and Just be in pain instead of getting out and living my life-1) I feel more of the pain 2) I think about the pain more 3) I am in a more depressed, anxious state. 4) I would miss out on all of you wonderful people. So the next time you wonder why I am acting the way I am or don't seem as vivacious or happy, or seem a little off, it could because I am a wee bit of pain you can't see 24/7 that wears on my mind/body/spirit. I don't tell you this to feel sorry for me, but so that you can understand my pain, and STOP JUDGING ME AND OTHERS WHO ARE IN CHRONIC PAIN AND POSSIBLY RELY ON THE WONDERFUL WORLD OF ALTERNATIVE HEALERS, GOD, PAIN MEDS, ETC. We made it here because we relied on those things and we relied on you, family and friends to show support and understanding. Haven't you ever had a silent struggle you wished someone understood better before they cast judgment on?
That's what I do say. ;) Take care of you.
My story is long and confusing. I have just recently self diagnosed my self with the help of my General Practioner. I believe I have side sifting Chronic Paroxysmal Hemicrania to go along with my bilateral Trigeminal Neuralgia and occipital neuralgia. I have had the constant headache for 20+ years. About 6 or 7 years ago things started getting worse for me and it became increasingly difficult to hide what was going on because I think that the autonomic symptoms were getting worse. About 4 years ago it appeared I had hurt my neck at work. All of a sudden my headaches, face pain, and neck pain seemed to be tied together. Things went down hill from here. I think this is the point were my headaches changed from Hemicrania Continua to Paroxysmal Hemicrania but I had no idea that I would not being able to hide my pain or symptoms any more and would spend the next 4 years spending all my money, losing my composure, losing my grip on my job, losing my job, family fell apart, marriage fell apart, slowly lost my best girl friends, lost house,completed bankruptcy, and putting all the pieces I could find back together in another state. My out of control16 year old constantly keeps me so stressed my husband and I are losing our marriage still.
This war on pain has not won me yet. I am fighting everyday to keep my sanity, stay out of pain, and to find inner peace with myself and all my pain.
Hang in there, we can do this together! Tree
Girl, I feel you 100% I contemplated suicide multiple times. I found God or God found me. He literally saved me. I also found Reiki. Do you have atypical TN? LIdocaine shots have helped with my pain the most, but none of those anti-seizure drugs helped at all, they just made me loopy. Do you know what caused it? Take care.
Stephanie said:
I am mostly frustrated. I can say the first 9 months after all of this happened I didn't want to live. I am 100% better than I was. You know the 5 stages of grief? Well I'm just making my way through them lol.
I haven't had much luck with other drugs. I have been on gabapentin and just keep increasing it. I feel like I have tried all of the drugs there are. I love this site because I can see different drugs and things people have done. I must say I do find myself a little jealous when people are talking about being pain free. I'm happy for them just wish I could find that.
My heart goes out to you. Best of luck at the pain clinic. You will be in my thoughts and prayers.
Shadirah said:
Hi guys, I too suffer from the monster and this ifs my first time experiencing a pregnancy with it. It's debilitating, as I fight to eat, drink, talk etc. I have two boys and a husband and I feel so bad for them. They are forced to have to watch this torture daily and th hat makes me sad. I am on tegretol 200mg at night, but that's not doing much. Monday I go a pain specialist to see what else I can do or take. Never thought my pregnancy would be like this. I'm scared about the health of my baby, I'm scared that I will not be able to care for my children even after the pregnancy, I'm just a basket case. No one seems to have answers for me. I just want to get through this pregnancy we without being in this pain. How do you increase the chance of remission? What am I doing wrong? I'm praying that Monday will be my day of solutions. I need help so bad. I'm 22 weeks pregnant. Can someone just offer me something.
I was on anti-depressants, anxiety meds, anti seizures, but none of those anymore. Now I am just on percocet, topomax for the headaches and facial/ear pain and arm and eye pain ( I have atypical, post herpectic, ramsey hunt, geniculate neuraliga, which basically all one in the same thing). But those other drugs were just making me "foggy" mess.
Reiki and God cleared my mind and eating a better diet. Food can do so much. HOpe you find a regimen that helps. We are all so different in what helps each one of us.
I'm curious about trying gabapentin 3 times. My husband was on it, but was weaned off due to side effects. New meds help about the same, but not completely. Any suggestions?
thermotronica said:
Yes kc has it right, it gets better!! Remember to try try and try again for different alternatives of medicine. I used to be afraid to be looked at as an addict, but its worse to be addicted to the pain and loneliness. And gabapentin helped me after giving it 3 different tries
On a daily basis I have to remind myself that through it all I have blessings and some have it worse. I am the soul care taker of my 52 year old permanently disabled husband who is in a wheelchair, had a leg amputated and in kidney failure. He was in the hospital over 2 1/2 years, has been home a year. It is tough to care for someone when you yourself have pain, but each day I do it, some are rougher TN days than others, I do increase Gabapentin as needed, decrease on those blessed better days. Sometimes life throws us challenges we never thought we could make it through, but I want to keep on. Friends and family have all but disappeared, between my TN and his illness/disability, that I think is a shame and should I ever be so blessed to make new friends I will always be there for them, I do get disappointed in people but have had to learn to expect nothing that way there is no disappointment! This site is definitely great for support. One day perhaps there will be more answers about TN, until then just gotta keep on! Off to take down my outside Christmas, just got my electricity bill, lol, think I over did the lights this year, sure was fun putting up and enjoying, but taking down and bill not so fun! Hang in there and know we are all here for ya!
Betsy
I just want to praise all you long-term sufferers and those with additional problems. I had my husband watching and listening and doing for me, all day long, for just three months. It was all consuming and debilitating, I kept crying that I could not go on any longer. Mine became easier, and Amitriptyline, Tegretol, Ibuprofen reduce it further (anti-convulsants just added to the problem!). I do not know how it can be lived with and I think you lot are marvellous. Hope and pray you will all find some better relief soon, or better still, say goodbye to it completely. Love and very best wishes to all, Dove.
I get really annoyed when people think that it is all in my mind. some drs even sujjested to see psychiatrist. All this is due to TN sufferers look normal on outside.
Others could not see or feel the pain.
Just hearing all the stories really puts things into perspective for me. Everyone has been and are still going through so much, but you all keep going. Stephanie, I understand the frustration, we do look normal - and going thru the 5 stages of grief - I'm still lost somewhere in that process LOL! At least you're TRYING meds. I'm not even there yet .... being a total wimp about it. I'm one of those people that's sensitive to a lot of stuff - foods and definitely medications. It sucks! Just in the last 2 years I can no longer take aspirin or any ibuprofen products (motrin, advil etc) makes me really sick. My neurologist has offered me: first tegretol, then neurontin, and then elavil to try. I keep saying no, not yet, so he left it last time that he's always at the other end of the phone, just call and he'll send out a prescription for whatever I want to try if things get too bad. Right now I live for hot showers (the steam and hot water seem to quiet the nerves firing for a few minutes), ice chips, my heating pad and eating cold coconut oil that I keep in fridge, it soothes the mouth pain sometimes for a bit. So I'm stuck between a rock and a hard place, I want to get rid of this exhausting pain but I don't want to be sick from meds side effects. I worked for years in customer service - can't even imagine holding down a job like that now! It's like being a prisoner from the inside out some days but I just count my blessings and hope this doesn't get worse and worse.
So over time I've tried some alternative things - I tried acupuncture but I couldn't afford to keep doing it (plus I didn't like the needles much!) and a few reiki sessions. I loved the reiki, it was very relaxing but as soon as I got up the pain came back. I see someone posted here that reiki helps them - maybe the person I was going to wasn't that great at it - it's so hard to know. I also tried a few different herbal supplements and homeopathic tablets for a while but sadly without any improvement. I think the ATN pain is so hard because it never stops, and from what I've read it doesn't always improve with medication. Frustration has become my middle name so I understand where you're coming from 100%. I'd imagine that further down the road I'll probably get desperate enough to try something for pain but for now I'm still toughing it out. I can control it to an extent because I know now what makes it worse (certain foods, weather changes, stress, lack of sleep, loud noise, talking too much ... pretty much normal life). At least being on this site you know you're not alone!
Good one Stephanie......it's a sad state of affairs for sure!! People might feel rejected due to the canceling or think we are stuck up or messed up. When I had my car it was even worse. Can't drive in pain or on heavy meds! So a car was kind of useless in that regard and it gave the appearance that I was a capable independent single lady. Ha, so not true. So the only thing left for people to think I guess was that I was a snob or something, maybe, I can't read minds but that would be my guess.
I haven't had a social life now for about 3 years and even then it wasn't much, so it's my kids and grandkids. They are great but I miss having someone my own age! Even Church people just kind of gave that blank look when I'd try to explain why I didn't work and we all know what that "blank" look means. I've tried but it's like being the in "betweener". I'm not in a wheelchair so I can't be in that group. I can't do all the things normal people my age do so I can't be in that group. It's like being a social "outcast". Can you say "leper". Sometimes I wish I had a sweet, understanding, compassionate husband who would be "on call" for when I felt good to go do something but that's hardly fair. And who would take this on at this stage of my life. But I do have a great and sweet dog who only gets to go out for walks when I'm able, he's so understanding, lol, he has a nice big yard to run around in and I'm here to let him in and out all day and night so he likes that.
I've thought of a book club but you're expected to be there and to talk. Oh oh, can't promise that.
I have back and knee/ankle issues so I can't join a walking club. I used to love going out for dinners or wings but I take for ever to chew my food now and unless it's my family I'd feel awkward not to mention there's many days when all the noise would be a trigger. We need people who won't get upset if we have to cancel but in reality people don't like that!! I don't blame them. That's why this site has been such a God send, it's not in person but I still feel like I'm socializing in some way!
Life has changed and it's taken time but for the most part I am at peace with it! This is a huge part of having a rare disorder and I'm so thankful to Ben for starting all of this and for Scott who jumped in to help make it happen and of course for all the other people here! :)