Hi All,
Id like some advice from you MSE expert.
I've had a really tough year..I was diagnosed with a really nasty disorder early this year called Trigeminal Neuragia.it is a nerve disorder in the face just on one side of the face.,a nerve in the back of the head is being compressed by a blood vessel and causes electric shock type pain in the lower face.mine is in my teeth,gums and jaw.this illness is nicknamed the suicide disease and its said its the worst pain known to man and medicine..the triggers are wind,aircon.eating,anything to do with touching the face and hundreds of other triggers that we take for granted every day, ive been in so much pain at times I havnt wanted to live anymore..painkillers don't work for this type of illness and anticonvulsants are the only drugs that help to try to stop the impulses in the brain. ive been on 3 of the drugs and the one im currently on half help.it is a progressive illness and will get worse over time..you can get remission from it but it will always return and return worse than before.
I work part time for a large very corporate retail chain company and have worked for them as a supervisor for 15 years in the same store which is food based..
I had 5 months off work because of this disorder as I was in such agony.
work were supposed to arrange for occupational health to get involved but it didn't happen due to a manager leaving.
ive been back at work for 4 weeks and im finding it impossible to carry on as before.twice ive had to go home crying in agony.i had a badge made that says if im unable to talk or smile its due to a painful disorder I have..when the attacks strike,which if trigger it is impossible to talk or smile which in my job I have to do a lot of..these attacks can happen hundreds of times every day,I am going to speak to work at some point hopefully today to see if they will let me go from 3 nights a week to one night a week until I get an operation for this disorder,the op is pretty nasty ,next to the brain stem and is major surgery but it has the best chance of success with 70 percent of sufferers still being pain free after 10 years,i am under a neurologist waiting to be referred to a neurosurgeon so it could be 3-6 month until I get anywhere.
anyway my question is if work don't agree with me cutting down temporarily for maybe 4 months or so what can I do..the reason I want to cut down to one evening is basically to be able to keep my job once ive had the op and recovered..i don't want to resign and I don't want to have to go sick which is what im sure will happen..the problem is the aircon at work triggers the nerve jumping and is agonising for me..the anticonvulsant drugs are very strong.affect my balance and make me slur..i don't know anything about esa or any of the benefits..my hubby works full time and we receive a small amount of tax credits.we have 2 kids..occupational health were aupposed to help me back to work after my time off and check if I had any probs..my company have scaled down their hr and its all done in store with the managers,all the shops have the aircon and there aren't really office positions.dont know what to do,desparate to keep my jon until im better but will need to claim some kind of benefit in between as myself and hubby are on a low wage.
thank you all for reading.
Id like some advice from you MSE expert.
I've had a really tough year..I was diagnosed with a really nasty disorder early this year called Trigeminal Neuragia.it is a nerve disorder in the face just on one side of the face.,a nerve in the back of the head is being compressed by a blood vessel and causes electric shock type pain in the lower face.mine is in my teeth,gums and jaw.this illness is nicknamed the suicide disease and its said its the worst pain known to man and medicine..the triggers are wind,aircon.eating,anything to do with touching the face and hundreds of other triggers that we take for granted every day, ive been in so much pain at times I havnt wanted to live anymore..painkillers don't work for this type of illness and anticonvulsants are the only drugs that help to try to stop the impulses in the brain. ive been on 3 of the drugs and the one im currently on half help.it is a progressive illness and will get worse over time..you can get remission from it but it will always return and return worse than before.
I work part time for a large very corporate retail chain company and have worked for them as a supervisor for 15 years in the same store which is food based..
I had 5 months off work because of this disorder as I was in such agony.
work were supposed to arrange for occupational health to get involved but it didn't happen due to a manager leaving.
ive been back at work for 4 weeks and im finding it impossible to carry on as before.twice ive had to go home crying in agony.i had a badge made that says if im unable to talk or smile its due to a painful disorder I have..when the attacks strike,which if trigger it is impossible to talk or smile which in my job I have to do a lot of..these attacks can happen hundreds of times every day,I am going to speak to work at some point hopefully today to see if they will let me go from 3 nights a week to one night a week until I get an operation for this disorder,the op is pretty nasty ,next to the brain stem and is major surgery but it has the best chance of success with 70 percent of sufferers still being pain free after 10 years,i am under a neurologist waiting to be referred to a neurosurgeon so it could be 3-6 month until I get anywhere.
anyway my question is if work don't agree with me cutting down temporarily for maybe 4 months or so what can I do..the reason I want to cut down to one evening is basically to be able to keep my job once ive had the op and recovered..i don't want to resign and I don't want to have to go sick which is what im sure will happen..the problem is the aircon at work triggers the nerve jumping and is agonising for me..the anticonvulsant drugs are very strong.affect my balance and make me slur..i don't know anything about esa or any of the benefits..my hubby works full time and we receive a small amount of tax credits.we have 2 kids..occupational health were aupposed to help me back to work after my time off and check if I had any probs..my company have scaled down their hr and its all done in store with the managers,all the shops have the aircon and there aren't really office positions.dont know what to do,desparate to keep my jon until im better but will need to claim some kind of benefit in between as myself and hubby are on a low wage.
thank you all for reading.
