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Posted , 7 users are following.

dianme17090
dianme17090

I'm new to this site. I've needed you guy for so long. I thought I was alone. I got bells palsey 10 years ago. It's left me with TN and horrible pain. I have worked with it as a dental assistant but I can't

Stand the pain. The most I can do is go from my bed to the couch. I'm on all the same meds as all of you.

My question how do you pay for everything in life. I've applied for disability just waiting for an answer.

This has taken over my life. It scares my when they call it the suicide pain because I feel like I'm close.

0 likes, 10 replies

10 Replies

  • Hellsfairy
    Hellsfairy dianme17090

    Posted

    Hi dianme, At least you now know you're not alone, that is always good to realise. There is some good advice on here too. The meds are probably responsible for you not being able to do much...I feel like that most days. 

    I was already on ESA and DLA before my TN started, so I didn't have the same problem as you're having with regards to managing to pay for day to day living. If you are in the UK you shouldn't have to wait too long for your Benefits to kick in, although initially you will be on one rate and then once you have been assessed it might be that you get a little more.

    I hope that things get sorted for you financially soon, stress is one thing it's best to avoid with this illness. Hang on in there, you are not alone with all of this xx

     

    • dianme17090
      dianme17090 Hellsfairy

      Posted

      Thank you for answering me. I have my 2nd apt. tomorrow with a disability dr. I'm so afraid to go because it seems like most Dr's don't believe TN is real. I just pray he know something about it. I'm not sure how to act. If I show how I really feel I'll be laying down on his table the minute I get there. I'm so stressed I'll do something wrong and get denied.

    • Hellsfairy
      Hellsfairy dianme17090

      Posted

      I hope your appointment goes well. You must be completely honest about how this horrible disease affects you, don't try to be 'brave' show it how it is for you. If you have any problems with the person you see refer them to your GP(who hopefully does believe you!). Ask them to contact your GP directly if they need anymore information.

      Are you in the UK?

    • dianme17090
      dianme17090 Hellsfairy

      Posted

      I will be honest. Just thanks for just listening to me it's helped so much. I'm in Arizona in the USA. I'm not sure how the system works. I've been waiting to be approved for 8 months.

      I'll let you know how things go.

    • Hellsfairy
      Hellsfairy dianme17090

      Posted

      Sending love and hugs to you from the UK. Never feel you're alone sweetie xx

    • greg66242
      greg66242 dianme17090

      Posted

      Hey Dianme,

      Wow, somebody from where I am planted. Please let me know what happens. Oh..I am.in Tucson, and you?

      God Bless,

      Greg

  • Valkyrie
    Valkyrie dianme17090

    Posted

    Hi Dianme,

    glad you found us at last. I guess many people with Tn have wondered if it would be better to just end things but I think the label "suicide disease" was attached to tn a fair while ago when there were not as many options as there are today.

    I assume you are under the care of a Neurologist and not just your GP?

    I spend quite a while doing just like you are, bed to couch in a super-heated room. I thought my life was pretty much over and was sad to think that the rest of my life might be like that. Fortunately, that's not the case. It took a while to get the meds right and also to choose a treatment (there are many) but things are a lot brighter now. What exactly are they saying causes the pain in your case  and what meds have you been given to try, also what dose. Sorry to be so questioning but others on the forum will be able to tell you what they take and what they did and it helps to know what you are doing now. There is help for you out there but you must slowly (and when you can) read up online, ask questions and never give up looking. xx- Val

     

  • Valkyrie
    Valkyrie dianme17090

    Posted

    also, maybe print something off your computer about Tn in case the person you see has not realised how painful and debilitating it can be. Hello from me in Australia!

     

  • moira23432
    moira23432 dianme17090

    Posted

    Reading and Printing all u can really is helpful,  also writing down questions you need answered,  the pain is so great that it's impossible to think straight when u see specialist at time.  Best wishes,  Moira,  New Zealand.

  • Tnhurtsme
    Tnhurtsme dianme17090

    Posted

    Hi im from texas. An i have been battling side effects from oxcarbazepine the muscle pain sucks ive got a script for cymbalta but ive been afriad to take it my pain is constantly crushing my face the electric zapps arnt there abymore but the pressure is gabapentin as been a life saver until i get used to it an quits being as affective
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