Hi i find it really really hard to cope with this condition and cant work am i the only one
Jackie has a lot of company on this one. Many patients whose pain is not well controlled or whose med side effects include brain fog, are not able to work. This is another reason why it's wise for you to learn as much as you can in advance on the requirements for applying (in the US) for Social Security Disability Insurance payments, and/or private disability.
Regards, Red
Steve, before the ATN/TN and the Meds, I could run numbers in my head faster then most could on a calculator. Now with the drug induced brain fog, I do good to remember my house number and forget about my phone number. No I am not able to work anymore.
I quit work 2 years ago, but have been steadily building up a business venture which I will be able to do from home. So a work from home option is a good one, if you havent considered this. Lots of people work from home these days with the invention of something called the “internet” … hehe …
I have not worked for about 3 years. I was attending college to get my Bachelors and have recently quit due to not being able to care for my children and the household and do my studies. I was very disappointed. I applied for SSDI and I have an appt with one of their docs next Friday. I have doctors that are backing me up stating that my mental state is not always the greatest. And my pain is daily and often. So you are not alone on this one by any means. It is so frustrating when you wanna do something and cant because of the pain.
Billi: Expect to be denied the first time. You can appeal and you most likely will be denied again. You can then appeal to an Administrative Law Judge and at this point, you really need someone who understands the whole process. I lawyered up after the first denial, currently awaiting the review date by the ALJ. And yes all of my doctors were backing me up and they had written some very strong letters of my limitations so if denied, do not give up the fight, you are just begining.
Billie Koele-Miller said:
I have not worked for about 3 years. I was attending college to get my Bachelors and have recently quit due to not being able to care for my children and the household and do my studies. I was very disappointed. I applied for SSDI and I have an appt with one of their docs next Friday. I have doctors that are backing me up stating that my mental state is not always the greatest. And my pain is daily and often. So you are not alone on this one by any means. It is so frustrating when you wanna do something and cant because of the pain.
Just struggling with this.Right now.In remition.Thank-fully my TN is not as bad as most peoples on here.Mine is more a dull consant nagging on the right side of my face.I also suffer fron bad ice pick headaches.Once or twice a year it goes berzerk!! I've not got a diagnosis yet.Doc wants me to take some tegratol when next episode happens.Tried it before at the tail end of episode.Low dose turned me into a vegetable for a month.I was so zonked I couldn't tell if it worked!I stopped taking them as I'd been off work.I just couldn't cope.The disability act keeps my job open but it is not a condition(that I know of)that is covered by DLA/DWA(in UK)
I do not always sleep well at night sometimes.Last night was bad.No PAIN its like I have an ear infection and I have a really loud constant tone.It is there during the day i just have other things to focus on so it not so noticeable. I am waiting for face to go berzerk as it has been ages since the last episode.
My job is wearing me out.I have to do lots of heavy lifting and most of the time we are SO short of staff its awful.Maybe I'm just feeling my age.But the music that plays constantly in the store drives my ears nuts.
Not sleeping well does not help.
It sounds to me as if you might have a condition of persistent tinnitus as well as a headache condition. You should be seen by an Ear Nose and Throat specialist to evaluate for the tinnitus. When you had the ice pick headaches, were they accompanied by a lot of tearing and nasal congestion? There is a variety of headache called SUNCT that is different in source and treatment from trigeminal neuralgia, which often presents with these symptoms.
Regrettably I am not familiar with the disability system in the UK. For whatever this is worth, TN in both Typical and Atypical forms is acknowledged in the US as grounds for disability under our Social Security Disability system.
Regards and best,
Red
NO.I totally understand.When mine flares up I can not work.But sick pay runs out and I can not afford not to work there appears not to be any disability allowances available.So no work no money!!But sooner or later something will have to give.If it gets worse it might be my sanity.
I have had ice pick head aches since i was a child.No runny nose.The only tearing is when i break down and cry cos it hurt so much! Will look into this. Thank you.
Richard A. “Red” Lawhern said:
It sounds to me as if you might have a condition of persistent tinnitus as well as a headache condition. You should be seen by an Ear Nose and Throat specialist to evaluate for the tinnitus. When you had the ice pick headaches, were they accompanied by a lot of tearing and nasal congestion? There is a variety of headache called SUNCT that is different in source and treatment from trigeminal neuralgia, which often presents with these symptoms.
Regrettably I am not familiar with the disability system in the UK. For whatever this is worth, TN in both Typical and Atypical forms is acknowledged in the US as grounds for disability under our Social Security Disability system.
Regards and best,
Red
I’ve been taking Oxazepam 10mg three times a day for my ringing in the ears. It took a few months to kick in but it actually helps. I know what you mean when there is no longer any stimulation. It is easy to fixate on the sounds. I also got a fountain for the bedroom to make a little background noise.
jacksharky said:
Just struggling with this.Right now.In remition.Thank-fully my TN is not as bad as most peoples on here.Mine is more a dull consant nagging on the right side of my face.I also suffer fron bad ice pick headaches.Once or twice a year it goes berzerk!! I've not got a diagnosis yet.Doc wants me to take some tegratol when next episode happens.Tried it before at the tail end of episode.Low dose turned me into a vegetable for a month.I was so zonked I couldn't tell if it worked!I stopped taking them as I'd been off work.I just couldn't cope.The disability act keeps my job open but it is not a condition(that I know of)that is covered by DLA/DWA(in UK)
I do not always sleep well at night sometimes.Last night was bad.No PAIN its like I have an ear infection and I have a really loud constant tone.It is there during the day i just have other things to focus on so it not so noticeable. I am waiting for face to go berzerk as it has been ages since the last episode.
My job is wearing me out.I have to do lots of heavy lifting and most of the time we are SO short of staff its awful.Maybe I'm just feeling my age.But the music that plays constantly in the store drives my ears nuts.
Not sleeping well does not help.
Oooh! I like the idea of the fountian. I think I'll keep that one in mind. Cheers. ;-)
Hi Jerry,
Yes I expect to be denied the first time....even tho my depression has worsened and the suicide thoughts have been raging in my head. I also have epilepsy and part of my skull missing because of a spinal fluid leak that occured after my MVD. Not sure if any of this will help but maybe just maybe I wont get denied. I should really not think negatively going into my appt I have tomorrow with the doctor SS scheduled me with. I will hold my head up as high as I can. I am hoping that the questioner that my dr filled out stating all my limitations will help. Everyone is different. So positive thoughts for me for tomorrow and we shall see what happens.
Jerry said:
Billi: Expect to be denied the first time. You can appeal and you most likely will be denied again. You can then appeal to an Administrative Law Judge and at this point, you really need someone who understands the whole process. I lawyered up after the first denial, currently awaiting the review date by the ALJ. And yes all of my doctors were backing me up and they had written some very strong letters of my limitations so if denied, do not give up the fight, you are just begining.
Billie Koele-Miller said:I have not worked for about 3 years. I was attending college to get my Bachelors and have recently quit due to not being able to care for my children and the household and do my studies. I was very disappointed. I applied for SSDI and I have an appt with one of their docs next Friday. I have doctors that are backing me up stating that my mental state is not always the greatest. And my pain is daily and often. So you are not alone on this one by any means. It is so frustrating when you wanna do something and cant because of the pain.