Having a very hard time being alone all day long, in pain with all this time on my hands. I am not working and single. How do I handle this before I lose it? Any suggestions greatly appreciated. Family doesn't visit, 1 friend that is extremely generous but she works a lot and has a big social life. How do I not go crazy and spend my days in tears?????
You are definitely not alone in this. I burst into tears on a regular basis. I cannot work because I just don't have enough spoons for each day. (Read the Spoon Theory Thread if you haven't.) I have a family but it is very hard for them to understand what is going on and my children and husband just want the old me back. This is a daily struggle for me and I am guessing a lot of others, too. I would say start a hobby but just getting out of bed and taking a shower can be enough to put me back in bed for days. I have found that just coming on here and realizing that I am not alone in this struggle can help me get through a few hours more. I like seeing some of the positive results that people have with some of their current treatments and that cheers me up - even when I know mine is injury related and does not have the same options as most. All I can say is that we understand what you are going through and will support you the best we can. Try and hang in there and maybe you will find that special combination that manages the pain.
Hi,
I am sorry for your situation, and can totally relate. I, too, am single and live alone. I have wonderful friends who support me emotionally, but they all have busy lives and I find my self alone a lot, which makes it all too easy to think about it and pity myself. I'm afraid there's no easy answer. I recently joined this forum for that reason. I think you are taking the right steps, reaching out here. Other things I like to do that help me in my 'alone' time are reading and movies, things I have always enjoyed. They don't require much energy, luckily! When I am feeling up to it, I spend a lot of time in my garden, sometimes even just sitting watching the birds at the bird feeder. I'm afraid that there is no magic bullet. Is there perhaps a support group that you can join in person in your area? I know after almost 4 years of dealing with this, that if there was one in my small town, population 10,000, that I'd join it in a heartbeat! I'm sorry that there isn't more I can say, just know that there are people here who understand what it's like to live day by day, and you are not alone!
Ducky
You can join a support group if there is one -- or you can email or mail all the neurologists in your area and tell them you want to start one. I love this place and come still even after "cured' to give back.
I would not have made it through without all my research and new found supporters here - well new as in 18 months ago!
I watch comedy a lot -- might help - might actually hurt -- but it was one of my tools, and still is.
Keep posting!
Mglen, keep in touch, my inbox is always open if you want to vent to someone who will not judge you. I feel for you, TN pain is hard when surrounded by loved ones. There are some suggestion in COPING WITH CRISIS at the top of the page that cover all aspects of TN that may affect you even though you don't seem to have reached crisis point just yet. Keep in touch.
Thanks for replying Ducky. U are so right about everyone having their lives-it hurts when your own family won't even visit u. I have to look and see if there is a support group in my area. One more problem is that I have hyperacusis which is extreme sensitivity to sound-so it's hard to be with a lot of people...talk about suffering!! Everyone is just awesome on this site! Thanks for your support.
Marla
ducky said:
Hi,
I am sorry for your situation, and can totally relate. I, too, am single and live alone. I have wonderful friends who support me emotionally, but they all have busy lives and I find my self alone a lot, which makes it all too easy to think about it and pity myself. I'm afraid there's no easy answer. I recently joined this forum for that reason. I think you are taking the right steps, reaching out here. Other things I like to do that help me in my 'alone' time are reading and movies, things I have always enjoyed. They don't require much energy, luckily! When I am feeling up to it, I spend a lot of time in my garden, sometimes even just sitting watching the birds at the bird feeder. I'm afraid that there is no magic bullet. Is there perhaps a support group that you can join in person in your area? I know after almost 4 years of dealing with this, that if there was one in my small town, population 10,000, that I'd join it in a heartbeat! I'm sorry that there isn't more I can say, just know that there are people here who understand what it's like to live day by day, and you are not alone!
Ducky
Welcome to the group Mglen, We understand your suffering since each one of us are dealing with TN and even though some of us have family and a few friends, it is not easy living with this and people who don't understand our pain. Although I am married, my husband doesn't have a clue as to what I go through, he works nights and all night I am alone at home, our kids are all grown up and out of the house. Just the other night I got a new medication that instead of making the pain go away, it made it worst, all night I was up walking around the house looking for things to do, listening to the bible on my phone, and watching HGTV, because everytime I was about to fall asleep the pain would come on and wake me up and I had to get up and stand up or start walking, my back was killing me all day and all night last night on top of the TN pain. When my husband got home at 7 am, I went to tell him and all he said was, "well what did the Dr. say? Why don't you just get something done?" There is no compassion, nada. I am and feel alone most of the time, my sons just call once in a while and I explain my pain, but they don't understand either, my daughter can't even help herself and her 3 kids, she doesn't even know what to say most of the time when she calls, my sister doesn't even call anymore because she doesn't know how to help me, she has her own life. Too much noise bothers me too although I dont' think I have hyperacusis. So you are not alone sweety, I'm glad you found this site. Stay in touch.
Hi Mitzi
I have the exact same thing with my family!!!! Exactly what u said. I keep banging my head against the wall trying to get some empathy or encouraging words from them. I just got off the phone with my dad, he's saying it's all in my head!!! UGH!!! I just want to shoot him. lol Or it's from stress. Maybe stress triggered it, I don't know. But it's here now just like the hyperacusis. He's so thick!
Just received a text from sister-have a great day! Really??? I know she means well, but I think she could say something else. I am not allowed to talk about it with her. Is that crazy? She just wants to burry her head.
I have an MRI tonight and I don't know how I am going to do that. I am in so much pain and the noise. Going to wear ear plugs and ear muffs...oh boy!!!
Marla
Hi Marla,
Good luck with the MRI. I don't have hyperacusis but have always been sensitive to sound - always had lots of headaches and the occasional migraine. I found the MRI VERY loud. They gave me earplugs that weren't as good as earplugs I use other times, so if you have your own, use those. I hate to tell you this before you do it, but the rest of the day was a write off for me. My head was pounding for hours afterwards. I'm not sure if maybe part of it was a reaction to the contrast used, but that could have contributed. I found myself just saying over and over again 'I need to get through this, I need to get through this, this could solve my issues, I need to know what's going on in my head, etc.' Big picture - it's a step in the diagnosis process and you NEED to get the information. As uncomfortable as it was, I'm so glad I had it done. In my case, it was not helpful, but I needed to know. In order to plan my life, i.e. whether to take extended sick leave, I needed to know. So stay strong, it won't be fun, but you need to know! Good luck!!
Ducky
Hey Marla,
One more thing to reply to you about! As far as family goes, I think it's important to avoid negativity. I don't have contact with my sister any more for that reason. My parents are so great, and my sister has a medical issue of her own, but that doesn't make her empathetic in the least! She hasn't had a job since 1993, lives with my parents and pays no bills, yet is so judgemental of the way I live my life! I've had a job almost continuously since I was 14 (42 now) and I work full time and pay my bills and she mocks the money I spend on vacations and such. Travel is one of the things that makes me happy, and as far as I'm concerned, that's always money well spent. I eventually had to cut off contact with her. It's so hard when family doesn't understand, but if it causes you more stress, you need to grow a very thick skin. I know it's much easier said than done, especially when someone you love says something like 'it's all in your head'. That is inexcusable! It makes my blood boil, in fact. I think perhaps you need to accept that they are not able to give you the support you need, and trying to get it from them is only making matters worse for you. Like-minded people are so important to find. Whether it's here or in a support group in your city, it's invaluable. I'm really lucky, I know. One of my best friends here had severe back pain for a year, and though she doesn't know my pain, she is so empathetic of what chronic pain does to a person. That's all you need to find, is someone with empathy. And you're in the right place for that here, at least. I'm new to the site, but already it feels like if I have one of those days where I burst into tears every hour, or am so frustrated I want to pull out my hair, I can come on here and read other peoples' stories and just know I'm not alone. Good luck and keep talking here!
Ducky
You are so right-it's so upsetting-I don't have a family, really. Worst part of it all, is my mom passed away when I was 20. She was just 48. I know she would be here for me. She must have sent me my friend Helen, who is like a mother and big sister to me. AMEN.
I am also new to this site and loving it.
Marla
Thanks Ducky. Because I really don't want to do it at all. My ears are so sensitive today as it is. It's not til 730PM Yes I have my ear plugs-some drugs and even plastic ear muffs. Praying to GOD all goes OK. they r also looking for MS...UGH
ducky said:
Hi Marla,
Good luck with the MRI. I don't have hyperacusis but have always been sensitive to sound - always had lots of headaches and the occasional migraine. I found the MRI VERY loud. They gave me earplugs that weren't as good as earplugs I use other times, so if you have your own, use those. I hate to tell you this before you do it, but the rest of the day was a write off for me. My head was pounding for hours afterwards. I'm not sure if maybe part of it was a reaction to the contrast used, but that could have contributed. I found myself just saying over and over again 'I need to get through this, I need to get through this, this could solve my issues, I need to know what's going on in my head, etc.' Big picture - it's a step in the diagnosis process and you NEED to get the information. As uncomfortable as it was, I'm so glad I had it done. In my case, it was not helpful, but I needed to know. In order to plan my life, i.e. whether to take extended sick leave, I needed to know. So stay strong, it won't be fun, but you need to know! Good luck!!
Ducky
I am in the same boat, alone all day and slowly loosing my mind. The boredom and loneliness is awful. I do what I can when I can, and I do have a few friends who come and take me to lunch, but those times are few and far between. My mom wont visit, she has borderline personality disorder, so everything is about her, she wouldnt even go to the hospital when I had the rhizotomy done, but I am used to that from her.
I try to make goals, today I will pay bills, read a book . Tommorrow I will bake a cake, and I also try to make goals to go back to work. This site has been a godsend for me, you find you are not alone and there are plenty of people to vent to and relate to. Best of luck, Wendy
Yes, you just have to go into it with the attitude that this is important and could be the first step on the road to a solution. That's funny that you mention MS. My neurologist said there were some 'white lesions' in my brain that looked like MS lesions, though they are not in the usual area of MS lesions, and could also be caused by headaches/migraines. I'm supposed to get a lumbar puncture at some point to see if it's MS. I doubt it is. I have an Aunt and 2 cousins who have MS so ama familiar with it somewhat, and I have no symptoms, other than the ATN, but I think that's due to bad dental work. Again, just know that even though it's uncomfortable, it could offer valuable insight into what's causing the issue. It's not that long, I think mine took just over an hour, what with setting up the IV to inject the contrast, and all the scanning. It's a small price to pay for a potentially big pay-off. You can do it!
So sorry to hear about your Mum. That's so hard. Family is who loves you unconditionally, not necessarily who is related to you by blood, so embrace people who come into your life who are non-judgemental and offer you that kind of support. Again, good luck with the MRI. I had a friend a while ago (I've since moved and we lost touch) and she probably has MS but chickened out of her MRI due to claustrophobia. While I understand her fear, putting it off for another day will only prolong the questions that run through your mind about what could be causing your pain. I feel like it's always better to know, because information is the only way you can ever find a solution. It won't be a barrel of laughs, especially afterwards, but it sounds like you are prepared, and it's the best way forward. Sorry to sound so preachy, I just really believe that it's the best thing you can do for yourself. I fought for two years to get a CT and an MRI, and I'm so glad I have that information now, even though they didn't offer a solution. I had a doctor telling me I needed to go off work and onto different drugs, when we didn't even have all the info. There was no way I was going to make a long term decision about my future based on very little info. That's just my perspective of it though. :-) Write when you feel up to it to let us know how it went!
Ducky
mglen32 said:
Thanks Ducky. Because I really don't want to do it at all. My ears are so sensitive today as it is. It's not til 730PM Yes I have my ear plugs-some drugs and even plastic ear muffs. Praying to GOD all goes OK. they r also looking for MS...UGH
ducky said:Hi Marla,
Good luck with the MRI. I don't have hyperacusis but have always been sensitive to sound - always had lots of headaches and the occasional migraine. I found the MRI VERY loud. They gave me earplugs that weren't as good as earplugs I use other times, so if you have your own, use those. I hate to tell you this before you do it, but the rest of the day was a write off for me. My head was pounding for hours afterwards. I'm not sure if maybe part of it was a reaction to the contrast used, but that could have contributed. I found myself just saying over and over again 'I need to get through this, I need to get through this, this could solve my issues, I need to know what's going on in my head, etc.' Big picture - it's a step in the diagnosis process and you NEED to get the information. As uncomfortable as it was, I'm so glad I had it done. In my case, it was not helpful, but I needed to know. In order to plan my life, i.e. whether to take extended sick leave, I needed to know. So stay strong, it won't be fun, but you need to know! Good luck!!
Ducky
Hi everyone!
I’m new to this forum. But have been watching the posts for some time. I really relate to theses discussions, so decided it was time to join!
I was diagnosed 12 months ago and since then have had sooooo many set backs (including liver failure from Tegretol). I have type 2 so am constantly in pain plus the electric shocks.
I now work from home since this sucky condition doesn’t allow me any pain free consistency or ability to drive due to the pain medication! It can be a lonely long day (although I have 2 fur kids - little dogs - for companionship, but they don’t talk much and at 15 and 17 they really don’t see or hear much either, still they are better than being alone).
Yes, it does certainly throw you bouts of not coping and not wanting to go thru another day, but if you are strong of heart and positive of mind you will get thru this despite who is around you!
This sucky condition certainly sorts out the true friends from the herd doesn’t it - I’ve certainly found out who my true friends are - family included! It really tests relationships/marriages!
I’m really lucky my job (Project Manager for a large Hardware company) allows me to work remotely - but even so some days the pain is so much that I either stay in bed taking drugs or pace the house with ice packs convincing myself to ‘stay’ in this - really hard isn’t guys, to stay sane thru all this!? Not surprised this condition is called ‘the suicide disease’.
MRI’s are a bit scary, i agree and I’ve had a few, but deep yoga breathing and nice thoughts will get you thru!
I’ve just had multiple Neuromodulation surgeries which are helping keep this condition in check. Glad that I have the privalage of a good set of specialists and great private health system in Australia otherwise at $35,000 a pop they would be simply unaffordable or the wait for each surgery would simply be too long to bare.
One last surgery to go thru in August, fingers crossed.
So far two Neuromodulation leads in my head, one at the back of the head on the right side and one at the front of my head on the right, next is an implant in my face just near my temple where the eyebrow ends and the cheek bone starts - risky but necessary to get it right over the Trigeminal branch so it controls the source of the pain.
Each Neuromodulation lead has electrodes on it that modify the nerve impulses, creating a good stimulation signal from the brain to the nerve - cool new technology that REALLY does work.
All the lead electrodes are controllable via a remote, so I can up or lower the nerve signal frequencies at any time I need to - I have the battery/computer implanted under my armpit - huge surgeries, huge scars on my neck, face and body, but quite ground breaking technology that gives hope to us all that suffer from this condition - the bouts of pain, the electric shocks can be controlled by these implants - I know first hand that this is true.
I empathise with everyone in this forum, its tough to stay ‘in this’ but there really is light at the end of the dark tunnel, its just a long lonely bugger of a journey getting there!
Love and strength to all and its just great to finally be a part of this fantastic forum of friends.
Steph 
I am in extreme pain right now-head feels like it's going to explode and the pain on face and ears. How am I going to do this MRI??? What do I do?? Tegretol is definitely not helping me. I am so exhausted and it's hard to lay my head down...so miserable and alone.
ducky said:
Yes, you just have to go into it with the attitude that this is important and could be the first step on the road to a solution. That's funny that you mention MS. My neurologist said there were some 'white lesions' in my brain that looked like MS lesions, though they are not in the usual area of MS lesions, and could also be caused by headaches/migraines. I'm supposed to get a lumbar puncture at some point to see if it's MS. I doubt it is. I have an Aunt and 2 cousins who have MS so ama familiar with it somewhat, and I have no symptoms, other than the ATN, but I think that's due to bad dental work. Again, just know that even though it's uncomfortable, it could offer valuable insight into what's causing the issue. It's not that long, I think mine took just over an hour, what with setting up the IV to inject the contrast, and all the scanning. It's a small price to pay for a potentially big pay-off. You can do it!
So sorry to hear about your Mum. That's so hard. Family is who loves you unconditionally, not necessarily who is related to you by blood, so embrace people who come into your life who are non-judgemental and offer you that kind of support. Again, good luck with the MRI. I had a friend a while ago (I've since moved and we lost touch) and she probably has MS but chickened out of her MRI due to claustrophobia. While I understand her fear, putting it off for another day will only prolong the questions that run through your mind about what could be causing your pain. I feel like it's always better to know, because information is the only way you can ever find a solution. It won't be a barrel of laughs, especially afterwards, but it sounds like you are prepared, and it's the best way forward. Sorry to sound so preachy, I just really believe that it's the best thing you can do for yourself. I fought for two years to get a CT and an MRI, and I'm so glad I have that information now, even though they didn't offer a solution. I had a doctor telling me I needed to go off work and onto different drugs, when we didn't even have all the info. There was no way I was going to make a long term decision about my future based on very little info. That's just my perspective of it though. :-) Write when you feel up to it to let us know how it went!
Ducky
mglen32 said:Thanks Ducky. Because I really don't want to do it at all. My ears are so sensitive today as it is. It's not til 730PM Yes I have my ear plugs-some drugs and even plastic ear muffs. Praying to GOD all goes OK. they r also looking for MS...UGH
ducky said:Hi Marla,
Good luck with the MRI. I don't have hyperacusis but have always been sensitive to sound - always had lots of headaches and the occasional migraine. I found the MRI VERY loud. They gave me earplugs that weren't as good as earplugs I use other times, so if you have your own, use those. I hate to tell you this before you do it, but the rest of the day was a write off for me. My head was pounding for hours afterwards. I'm not sure if maybe part of it was a reaction to the contrast used, but that could have contributed. I found myself just saying over and over again 'I need to get through this, I need to get through this, this could solve my issues, I need to know what's going on in my head, etc.' Big picture - it's a step in the diagnosis process and you NEED to get the information. As uncomfortable as it was, I'm so glad I had it done. In my case, it was not helpful, but I needed to know. In order to plan my life, i.e. whether to take extended sick leave, I needed to know. So stay strong, it won't be fun, but you need to know! Good luck!!
Ducky
Hi Marla
I hope the MRI goes well. Just relax, remember to breathe, think positive thoughts. We all are here with you!
Thinking of you. Best wishes, Steph
Hi Wendy
Yes we definitely can relate. I have had complete meltdowns screaming and crying. My dad was no help at all cause he wants to fix it and it can't be fixed. We are all looking for compassion and a hug and someone to just listen. I don't understand how others just don't do that. I am a very compassionate person and have a lot of empathy. Unfortunately, most people do not.
Good idea to set small goals. I am having a hard time going outside cause it hurts my skin. I love summer and it's a wash out for me. I am very angry as well.
Marla
I would say I am pissed off on a daily basis as well, dont fret about the MRI, I know you have noise sensitivity , I was afraid because I am claustropobic, but they put my iphone on the headseat and i could listen to music, that help and they put another headset on with mirrors so I could see the technicians and I never really noticed I was in the tube...I know people who sleep in them, but that is beyond my comprehension!
I am pissed that my life was just coming together, after years of struggle, bought my dream home, 2 months later on disability..grrrr. I use the anger as a tool to get well if that makes any sense. My Mom questions everything about this and wont listen, I just gave up , I know she is ill (mentally) so I just move on
Wendy
mglen32 said:
Hi Wendy
Yes we definitely can relate. I have had complete meltdowns screaming and crying. My dad was no help at all cause he wants to fix it and it can't be fixed. We are all looking for compassion and a hug and someone to just listen. I don't understand how others just don't do that. I am a very compassionate person and have a lot of empathy. Unfortunately, most people do not.
Good idea to set small goals. I am having a hard time going outside cause it hurts my skin. I love summer and it's a wash out for me. I am very angry as well.
MarlaI
thank you so much Steph. I will be thinking of all of u because everyone is so encouraging.
Marla
Steph said:
Hi Marla
I hope the MRI goes well. Just relax, remember to breathe, think positive thoughts. We all are here with you!
Thinking of you. Best wishes, Steph :)