Oh Bellalarke - I am so very sorry to hear this. Your ex’s lawyer needs to be educated about the elusive nature of TN!!! I would like to know how he even found a lawyer. I am trying to find one to help me retrieve my belongings and money I invested in the home we remodeled after my ex & I reconciled and then after I spent almost $100K (remodel, new furniture, household bills & taxes and his credit card bills) he got drunk and threw me out, threatening to call police if I did not leave. And I can’t find anyone willing to help me. Anyways, this is about you. I am so sorry. Your ex and his lawyer are among the scum of the earth. You were married a long time and gave him children! In my book… he owes you!!Are you in Canada?
Hey I too when dealing with a very bad flare up pace around and cry which I guess is just a way to pour it all out some times I feel very down if my medication is having affect and lack of sleep coupled with many commitments I will sometimes verge on thoughts of suicide which I know I am a very happy person at all other times with a mostly lucky life so I think the pain for me honestly causes these thoughts as it gets so severe I have learnt to just focus on when the pain comes to an end I feel scared too at times as its frightening how much pain can just strike you down!
Actually also I always feel like I’m scared to make a big deal and often think am I just overreacting is this pain just nothing for others I went through that a fair bit when doctors kept saying it was just dental pain and nurofen should help the pain I just kept thinking dear god what is wrong with me why can’t I handle pain and I would just go about my days work uni totally unable to think past this pain but at the same time too embarrassed to complain about its…which is silly I know but sometimes it’s hard to gage exactly what everyone perceives as pain etc
Gabapentin is notorious for affecting peoples short-term memory.
Hope said:
I'm 7 months into the worst of it and diagnosis. I always thought I had a high tolerance to pain or at least discomfort. This has brought me down. I've stopped crying quite so much now as the meds are taking care of the worst of it. I have type 1 and 2 bilateral. Only type 2 on the right. The left side is the big problem. I'm not sure if I'm dealing with my emotions very well. I mostly avoid talking about it now because nobody understands. I feel mad at everything people say to me about it. Like they know what I'm going through because they had such and such. I know my pain doesn't make theirs any less though. I'm trying to do most of the things I would have done before, if I can. I smile and nobody knows. I'll cry when I'm alone though. I miss my memory a lot. The meds just take away my short term memory. I make stupid mistakes and I have to hide it at work. I don't want anyone to know I'm on meds. A combo of oxcarbazabine, gabapentin and lyrica for me. I miss running. I've always been a runner. I usually can't muster it now. I miss making big dinners for my big family. The meds make me lazy. I have a big life at home with lots of work to be done. It's harder than ever. I'm worried I will have to take another leave of absence from work. I am barely getting by. I reduce the meds to function at work and take more on my days off. I can't afford not to work. I'm not sure about my long marriage. I'm putting all that aside for now. I've always been a joyful person before this. I have a lot to be thankful for. That's for sure. I don't want to lose myself to this. TN is all I ever think about anymore. It's the pains fault. I'm practicing self hypnosis and mediation from YouTube to help. I wish I had learned some of these techniques years ago. It's hard but I'm going to keep practicing. I feel better since I'm whined and complained. I think I will try to run tomorrow.
*I raise my glass of wine to you caseyjoenz
Thanks for listening all.
HI mimi
Iam Newly in this group. ( march 2013) when I am in a flare up i can feel it creeping. one day then it is there. Weather changes and Stress is a trigger. Thunderstorms and the back to nice , back to thunderstorm . :-( Iam in 600mg Tegretol it works. but like this weekend . The tingel sensation comes back half my tongue (never had that before) . I try to read so aim not thinking oh my pain (headache to). And the feeling the whole face is swollen up. now a bit on the other side (freak) .
Sewing helps me too. I knitt but i get dizzy from it:-(. I eas happy last week I could go back to work for 3 hours. It felt good.
and the yesterday Eyes open good morning Here iam . Have all a very good sunday . Pia
Bellalarke,
I just read about your day…makes me want to do two things…First fly over to you and give you a hug , make you a cup of tea and just be there for you, and second…fly to where your ex is and just tear a strip off him with my words of disgust. I’m incredibly frustrated I can only imagine your feelings. If you were 100% well health wise, I’d do the same, but the fact that I know some of your struggle makes me angry that you have to “deal” with this on top of your health issues.
"What doesn’t kill us makes us stronger"they say… Who the hell were “they” anyway???
Ugh, I’m just very very glad that you have your daughters support and love and this wee grand baby to hold and smell.
You have shown incredible strength as well you are a beautiful person for your daughters to look up too.
I pray that all this hassle you’ve had to go through will turn out in your favour. …
Thinking of you my friend with loving thoughts , Mimi xx
Hi Apple & Socks,
Welcome, thanks for sharing your thoughts and emotions too.
By reading through this thread I feel this overwhelming sense of how strong we all are to go through all that we do. I know we don’t feel strong. But we should take some pride in knowing that we get by against many odds and most importantly “WE ARE NOT ALONE”!!!
(( hugs )) Mimi
Yes! I've reduced the gabapentin to just 300mg at night so I can function at work. It's funny that for me, it's the very short term that's affected. I can remember what I did the day before and all. I just can't always remember the details of what someone told me or what I read just moments before (at least I can read a magazine twice and it's all new to me, ha ha) I believe this iscaused by the 900mg of oxcarbazapine as well.
GoAskAlice said:
Gabapentin is notorious for affecting peoples short-term memory.
Hope said:I'm 7 months into the worst of it and diagnosis. I always thought I had a high tolerance to pain or at least discomfort. This has brought me down. I've stopped crying quite so much now as the meds are taking care of the worst of it. I have type 1 and 2 bilateral. Only type 2 on the right. The left side is the big problem. I'm not sure if I'm dealing with my emotions very well. I mostly avoid talking about it now because nobody understands. I feel mad at everything people say to me about it. Like they know what I'm going through because they had such and such. I know my pain doesn't make theirs any less though. I'm trying to do most of the things I would have done before, if I can. I smile and nobody knows. I'll cry when I'm alone though. I miss my memory a lot. The meds just take away my short term memory. I make stupid mistakes and I have to hide it at work. I don't want anyone to know I'm on meds. A combo of oxcarbazabine, gabapentin and lyrica for me. I miss running. I've always been a runner. I usually can't muster it now. I miss making big dinners for my big family. The meds make me lazy. I have a big life at home with lots of work to be done. It's harder than ever. I'm worried I will have to take another leave of absence from work. I am barely getting by. I reduce the meds to function at work and take more on my days off. I can't afford not to work. I'm not sure about my long marriage. I'm putting all that aside for now. I've always been a joyful person before this. I have a lot to be thankful for. That's for sure. I don't want to lose myself to this. TN is all I ever think about anymore. It's the pains fault. I'm practicing self hypnosis and mediation from YouTube to help. I wish I had learned some of these techniques years ago. It's hard but I'm going to keep practicing. I feel better since I'm whined and complained. I think I will try to run tomorrow.
*I raise my glass of wine to you caseyjoenz
Thanks for listening all.
Oh @bellalarke. I'm so sorry to hear your situation. It just shows how misunderstood (or not understood) this disease is. Unbelievable they should do this to you on top of the pain you have to deal with. I'm so happy you have your daughters and oh my gosh, a new baby to help distract you. It's funny what a short time ago I knew nothing about it. I thought my back hurt bad...whoa. It's so nice to hear Mimi say how strong we are. I really didn't know how much those words help until recently. I was talking to my mom on a bad pain day and of course started crying on the phone. She said I was strong and that she knew that probably didn't help to hear. But I said, no it does help to hear that. Those were the words I needed to hear. Take good care bellalarke.
@apple Your story sure resonates with me. We all seem to have so much in common. I too thought I must be over reacting some how. I just couldn't deal with the pain. This was just before and after the diagnosis. I too thought I must be going crazy. I had unusual dreams every night that I was losing my mind and people were starting to catch on. I wanted to sleep to have a break from the pain but was afraid of my dreams. Thankfully I much more together now. I am NOT crazy. Thanks to a good neurologist who understood TN and validated what I was going through. That in itself made me cry buckets. Take good care.
I really related to several stories here. All I can do is share what has happened to me with you. Most of it posted already somewhere on this site. It's been 13 years now. I am 5 years post a failed MVD. The new diagnosis was Anesthesia Dolorosa and TN. I'm doing better than I have ever been. I still have pain. I like sleep a lot. I take Tramadol, Gabapentin, and an anti-depressant. When I was prescribed Clonazepam (Klonopin) sp... It changed everything. I have less pain because I have less stress Still, when I got off the opiate train I had to learn how to deal with pain differently. (I'd taken oxycontin, the worst drug and even had a Medtronic Pain Pump. It's amazing what this disease will make you do The pain eased after I stopped taking opiates.
After a failed Stereotactic Radiosurgery and MVD, I felt like I'd just been cursed. I took that lemon and squeezed it til I couldn't anymore and finally...
Spring forward: 2013 and some several years later I am prescribed an opiate drug that I use only for rescue. Not a daily thing. On the pain scale I haven't seen a 10 in a while because I stay away from stressful situations.. 8 is a very high # to me. It's most people's 10
I think. I have a lot of regret about things I did and didn't do. I grieved a decade. My 40's. How could such a successful woman become so sick? It's a miracle today that we moved and I gained a different attitude towards my pain. If I have to take an opiate to so I can talk, well, I'm doing that. Is there such a thing as remission? If so, I must be having it or staying home alone is the best medicine. Talking is a huge trigger. I love to talk.
BACK in the 90's I was a working marine life photographer. I'm diving and taking photographs again, but not "working" so to speak... just out trying to have a good time.
Often the fear stops me from doing things I might otherwise do. Many times my husband encourages me to come for dinner with colleagues. I have let go stopped grieving those lost years and cramming as much enjoyable life experiences as I can. If things get bad, I go get an icepack and hopefully a bed or sofa nearby. i do travel a lot globally. At least a dozen trips a year to a great variety of places. Thank God I can do that again!!!
Excuse me because when I edited my thoughts were so complex. I couldn't figure out how to get a lot out in just a few words. Please feel friend to friend me.
I don't bite!
An Ocean of Hugs for the women and men who suffer.
THANKS SO MUCH Hope and Alice... i really needed to real this.
Hope said:
Yes! I've reduced the gabapentin to just 300mg at night so I can function at work. It's funny that for me, it's the very short term that's affected. I can remember what I did the day before and all. I just can't always remember the details of what someone told me or what I read just moments before (at least I can read a magazine twice and it's all new to me, ha ha) I believe this iscaused by the 900mg of oxcarbazapine as well.
GoAskAlice said:Gabapentin is notorious for affecting peoples short-term memory.
Hope said:I'm 7 months into the worst of it and diagnosis. I always thought I had a high tolerance to pain or at least discomfort. This has brought me down. I've stopped crying quite so much now as the meds are taking care of the worst of it. I have type 1 and 2 bilateral. Only type 2 on the right. The left side is the big problem. I'm not sure if I'm dealing with my emotions very well. I mostly avoid talking about it now because nobody understands. I feel mad at everything people say to me about it. Like they know what I'm going through because they had such and such. I know my pain doesn't make theirs any less though. I'm trying to do most of the things I would have done before, if I can. I smile and nobody knows. I'll cry when I'm alone though. I miss my memory a lot. The meds just take away my short term memory. I make stupid mistakes and I have to hide it at work. I don't want anyone to know I'm on meds. A combo of oxcarbazabine, gabapentin and lyrica for me. I miss running. I've always been a runner. I usually can't muster it now. I miss making big dinners for my big family. The meds make me lazy. I have a big life at home with lots of work to be done. It's harder than ever. I'm worried I will have to take another leave of absence from work. I am barely getting by. I reduce the meds to function at work and take more on my days off. I can't afford not to work. I'm not sure about my long marriage. I'm putting all that aside for now. I've always been a joyful person before this. I have a lot to be thankful for. That's for sure. I don't want to lose myself to this. TN is all I ever think about anymore. It's the pains fault. I'm practicing self hypnosis and mediation from YouTube to help. I wish I had learned some of these techniques years ago. It's hard but I'm going to keep practicing. I feel better since I'm whined and complained. I think I will try to run tomorrow.
*I raise my glass of wine to you caseyjoenz
Thanks for listening all.
uwfotogal - I am interested in some of your comments. I take clonazepam 0.5 mg at night...it's the ony way I can get an adequate amount of rest. Right now I am on chronic pain management with oxycontin 10 mg 3 time/day. It still doesn't take away all the pain, but does keep it down to about a 2-3 level. I still have innumerable spikes throughout the day, but they are usually tolerable. If they last too long and become intolerable, I take a breakthrough oxycodone 5 mg. I had to stop taking anything with tylenol in it because my liver enzymes became elevated from it. I would like to stop taking the opiates (because I can't risk taking them and driving) and wonder how effective tramadol is for TN pain relief. I was prescribed it post-op after my second MVD and it did NOTHING to help my post-op pain, but also I did not have TN pain post-op. It came back about 9-10 months later. So I am wondering how effective it is for TN...although my current diagnosis is neuropathic trigeminal pain. Gabapentin did NOTHING to relieve my pain and totally screwed up my ability to think and function. I stopped all antidepressants also, because every single one I tried changed my personality into someone that was not very nice. Now I just cry a lot and do nothing but stay in the house. I don't enjoy anything anymore because I just feel miserable so much of the time.
uwfotogal said:
I really related to several stories here. All I can do is share what has happened to me with you. Most of it posted already somewhere on this site. It's been 13 years now. I am 5 years post a failed MVD. The new diagnosis was Anesthesia Dolorosa and TN. I'm doing better than I have ever been. I still have pain. I like sleep a lot. I take Tramadol, Gabapentin, and an anti-depressant. When I was prescribed Clonazepam (Klonopin) sp... It changed everything. I have less pain because I have less stress Still, when I got off the opiate train I had to learn how to deal with pain differently. (I'd taken oxycontin, the worst drug and even had a Medtronic Pain Pump. It's amazing what this disease will make you do The pain eased after I stopped taking opiates.
After a failed Stereotactic Radiosurgery and MVD, I felt like I'd just been cursed. I took that lemon and squeezed it til I couldn't anymore and finally...
Spring forward: 2013 and some several years later I am prescribed an opiate drug that I use only for rescue. Not a daily thing. On the pain scale I haven't seen a 10 in a while because I stay away from stressful situations.. 8 is a very high # to me. It's most people's 10
I think. I have a lot of regret about things I did and didn't do. I grieved a decade. My 40's. How could such a successful woman become so sick? It's a miracle today that we moved and I gained a different attitude towards my pain. If I have to take an opiate to so I can talk, well, I'm doing that. Is there such a thing as remission? If so, I must be having it or staying home alone is the best medicine. Talking is a huge trigger. I love to talk.
BACK in the 90's I was a working marine life photographer. I'm diving and taking photographs again, but not "working" so to speak... just out trying to have a good time.
Often the fear stops me from doing things I might otherwise do. Many times my husband encourages me to come for dinner with colleagues. I have let go stopped grieving those lost years and cramming as much enjoyable life experiences as I can. If things get bad, I go get an icepack and hopefully a bed or sofa nearby. i do travel a lot globally. At least a dozen trips a year to a great variety of places. Thank God I can do that again!!!
Excuse me because when I edited my thoughts were so complex. I couldn't figure out how to get a lot out in just a few words. Please feel friend to friend me.
I don't bite!
An Ocean of Hugs for the women and men who suffer.
A question that really makes you stop and think. I’ve had surgery and am now pain free so relieved that for now it’s over. In saying that though I don’t think that fear ever leaves you. Still find myself worrying about " what if tomorrow it comes back??" Also in saying that I am so happy when i think back to where I was last year at this time. All of us should be very proud of ourselves…it takes a strong person to deal with TN during pain periods and after.
Take care of you❤️
Linda
So happy that you had a successful surgery and are now pain free. Please try not to worry about if or when it will come back. Just focus on enjoying your pain free life :) Wishing you pain free days for the duration......
Linda said:
A question that really makes you stop and think. I've had surgery and am now pain free so relieved that for now it's over. In saying that though I don't think that fear ever leaves you. Still find myself worrying about " what if tomorrow it comes back??" Also in saying that I am so happy when i think back to where I was last year at this time. All of us should be very proud of ourselves...it takes a strong person to deal with TN during pain periods and after.
Take care of you❤️
Linda
Hello and thanks for responding. Yes, I’m in Canada and ex is in another province. I think he really had to lawyer shop because one time he wrote to me stating that he knew his legal goose was cooked so would I just let him off the hook anyway. (Can you hear me laughing!)
I am sorry for your woes with your dumb- ass as well. Big sigh…big medical issues and legal matters and exes make a wicked energy draining brew. I hope you can make some progress.
Thanks for sharing Mistee, it really helps to know that a balance can be found with the help of good medical care and a really good friend. Wishing you continued pain- free days.
Mistee Humphreys Shelton said:
At this moment in my journey…i am living a, relatively, pain free life. Over the past year, with the help of two different doctors, and really good best friend, i’ve gotten my medication combination worked out. As long as i stay on schedule, i am pain free most days. Of course, there are some days that the pain comes back, such as when i have my period. (sorry, indelicate to mention that, i know).
The price that i pay for this pain free existence is that i’m a complete babbling, dope up, idgit most of the time now. I’m always sleepy. I have trouble with concentration. I have trouble speaking sometimes…i’ll either forget the word i’m trying to say or complete nonsense will come out of my mouth. My typing ability as suffered greatly. I used to be able to type an accurate 70wpm, now with the hand twitching and inability to spell right anymore, i backspace almost as much as i go forward so i do good to hit 35wpm.
So, all of this has led to some extreme emotional ups and downs. I wasn’t dealing well with the pain, I’ve mentioned in other posts here that there was a point that i was actively considering suicide. That is true. I was making plans and moving toward carrying those plans out. I was in so much pain. Even with the initial diagnosis, and the start of medications, i was so depressed. The dr told me TN never…never…really goes away. That it’s a life long condition. I would think of how horrible it was going to be to live with this for another 50 years. FIFTY years…that’s a long time. Those kinds of thoughts were leading me to kill myself. I am a strong person, but every one has their breaking point…and that was mine.
Anyway, a couple more trips to the er and more medication-fiddling with the doc and things started looking up. i tabled those suicide plans (but they are always there…just in case. Even now)
As things got better with the controlling of my pain, and finding you guys and knowing not only was i not alone, but that my fight with TN didn’t seem nearly as bad as others here (horrible to say i guess, but it’s true. Sorry.)…my outlook on life began to improve. I also discuss the depression with doc, and he prescribed some MORE pills for that. And i began to feel a little more “empowered” and began to feel up the challenge of dealing with this.
As things stand now on my journey…i’ve got good support at home in the form of a loving, caring, understanding husband…i’ve got good support from my best friend who has agreed to be my doctor liason and who now goes to my appts with me and helps with dealing the all the mess of that. I’ve got a place to come to when i need to be reminded that i’m not alone and that things aren’t as bad as they could be…, and i finally seem to have found a combination of medicines that is working.
So, for now…i am in a good place, emotionally. I am coping well with both my “crazy” med as well feeling really able to handle living with TN. I am even happy most days now. I am living a relatively normal life, with only occassional reminders that i have TN. I am no longer giving active thought to ending my own life. Most days, i am thankful to be alive. Really…i often think how grateful i am that i’m still here. Standing on my porch in the early morning, looking over my flowers and plants and watching the bugs flit around, while i drink my coffee…I’m smiling. Which is a big deal in and of itself, right? There were times that just smiling would be so painful that i’d nearly fall to my knees.
Now i just take things one day at a time and don’t let my emotions get out of hand. I learned to do that things where you only live in the second you are in. Are you in pain THIS very second? No…so just let it be. Deep breaths and letting go.
~Mistee
For all who are following this thread I want to express huge gratitude to Mimi who had the great idea and courage to start this thread and to keep checking in to respond.
On Saturday afternoon when I didn’t know where to turn, I remembered this thread and logged in. Just having a place to pop into and let it all hang out gave me enough strength to tidy up the place where I was house sitting, water the garden, go over to my daughter’s and hug the baby and then head up the highway for home. Not too much traffic, had enough time to get some food and catch the ferry home. I was elated to get here. Slept for 12 hours, had a quiet day. Pain under control.
In two weeks I have a consultation with a neurosurgeon. Glad I’m going but dread having to tell the whole pain story of the past 3 1/2 years over again. This morning feel like I would rather just cut my head off! But I guess if I can make a joke I’ll be okay-
Oh thanks so much Mimi, I’ll take that cup of tea-:). You’re welcome to fly out anytime! As for the ex, you can just get in the car and dive down to Okatokes to tear a strip off him…
The kind words really help. And the virtual hugs, love them-
Peace and Happiness to All
Bellalarke
Mimi said:
Bellalarke,
I just read about your day…makes me want to do two things…First fly over to you and give you a hug , make you a cup of tea and just be there for you, and second…fly to where your ex is and just tear a strip off him with my words of disgust. I’m incredibly frustrated I can only imagine your feelings. If you were 100% well health wise, I’d do the same, but the fact that I know some of your struggle makes me angry that you have to “deal” with this on top of your health issues.
"What doesn’t kill us makes us stronger"they say… Who the hell were “they” anyway???
Ugh, I’m just very very glad that you have your daughters support and love and this wee grand baby to hold and smell.
You have shown incredible strength as well you are a beautiful person for your daughters to look up too.
I pray that all this hassle you’ve had to go through will turn out in your favour. …
Thinking of you my friend with loving thoughts , Mimi xx
Bellalarke - Glad to know that you are doing better. Hope your days continue to be good ones
I was typing a really long response for this, but it just did not seem right. At this point on the horrible roller coaster TN ride to be honest I’m numb with my feelings; and it sucks. At the beginning I was very good about being upbeat about the whole TN deal, I was not going to let it bring me down. Last year after getting some very good doctor opinions about surgery (an MVD to be exact) and being told I was a poor canadit more than once by different doctors, due to it would be to high of chance to cause my harm than good; it was crushing. Now a year later and I’ve gone through the whole medication list for TN. In the end it’s been determine I’m acutely sensitive to the drugs used for TN, I’m numb about having TN and life in general. My own personal coping skills have left the building. The very idea of that is strange and a bit bewildering. At this point I’m thinking of finding a consolsor for chronicly ill patients to help me get a grip back on everything. Although my sweet husband does try to understand and support me, it would be unfair and crippling to our marriage (I think) to lean everything on him. Being a depressed numb to everything person is not what I want to be. In all I’m not copping well or at all at the current moment. Sorry.
I do want to say though in the past I talked with friends and family about how everything was going. I planned on my garden if not working in it. Threw my self in school work or work in general. Did baking, cooking, did crafty things, and relished in kids childhood. Enjoyed music, movies, and playing video games. Anything to get my mind off of TN even just for a little bit. I also looked on the bright side of things. Looked at what TN taught me to enjoy the small things, slow down, and anything that is positive. Also having a motto such this will past its just a stage, I have TN it does not have me, and tn will not rule who I am nor will it ruled life. All this helped out for me to be positive until very recently and I’m sure these things will help others too. I’ve just very recently come to a new stage or path in my journey with TN and I need more help in dealing with it is all.
I hope this helps at least someone. Sorry my post is not very upbeat. Things are just rough on TN front and it pulling everything with it right now for me. Hope you all have a great day that is pain free.