TN is just a God awful disease. The pain is the MOST intense thing I have felt in life.
I’m two years and two months into this disease. I’m becoming very physically, emotionally and financially exhausted.
I wish I could go tomorrow and have my MVD. While I know it’s not full proof it’s a shot of being pain free. I can’t afford it.
Then my doctors nurse calls today and wants to take my off a pain medication that I’ve been on for six months because my insurance company won’t cover it but he doesn’t want to try the other options given. I just cried and cried. Why? Because I know this medication helps me and I’m soooo damn scared of being in pain like I was. I’m shaking just knowing this might happen.
I feel up against a wall. I keep crying and crying is causing more attacks. (I think it’s the scrunching of my face).
I’ve tried 15+ medications that weren’t pain medications. I’m still taking the max dose of neurontin daily and baclofen.
My insurance doesn’t cover alternative therapies. I’ve tried lidocaine patches with minimal relief (as I still had ice pick pain in my ear).
I can’t travel out of state to try a nerve block in my face. This therapy is not available in my state and my insurance won’t pay for out of state doctors.
Honestly what do I do? I don’t know anymore. I have good days. I have bad days. Lately the stress is eating at me.
I even quit smoking three months ago to see if it would help with the TN attacks. I don’t feel it has. Still yet I’m trying.
Since being diagnosed we’ve spent over $12,000 on my disease. We have nothing left. That doesn’t include insurance premiums. Just doctors, ER visits, tests and medications.
Antidepressants and I do not mix. I’ve tried five of them.
What else is there? What more can I do? I honestly do not know anymore.
Tigo,
I pray your journey with TN isn’t like this. I know for a lot of people they feel a lot of relief from tegretol or trileptal. I unfortunately had a reaction to them.
Thank you for your kind words. Thanks so very much.
I’m with my GP. Reason being is the neurologist I was quit seeing me when I didn’t want to do GammaKnife.
I wouldn’t mind going to a Pain Specialist at all, but under my current plan I have 5 specialist visits a year at a $50 copay any thereafter is $50 copay plus my deductible. Hence my even further frustrations.
I’m even trying B vitamins, but only started them Sunday. I’m not sure how it will affect my TN, but data suggests their benefit for nerve health.
((( Kismet ))),
I’m so sorry to read of all your struggles.
Being from Canada, I’m not familiar with the whole medical insurance stuff in the US, but maybe there are government subsidies that are available? Maybe medical charities that can help offset the cost of MVD or increased specialist visits?
Can you easily change insurance companies or coverage?
Ultimately, stress is not good for us, I often say to my husband…" What a cruel joke living with TN, I can’t cry, smile, laugh or be stressed without increased pain" so unfair…
I hope others come along to maybe offer other suggestions, just want you to know you’re not alone…thinking of you and sending positive thoughts!
(( hugs )) Mimi
Mimi,
The insurances here are complicated in the fact that it’s not always black and white. We would qualify for subsidies but my husbands job offers health insurance even though his employer contributes nothing toward the family premium. Needless to say my children and I are on the new obamacare plans, but do not qualify for subsidies to help offset costs. My husband stayed on with his jobs plan, which is a minimum plan. We have more benefits with our current plan, but not as many options. Like our plan is great if the only doctor you’ll ever need is your GP.
Surprisingly doctors office called around 9:30am to say my prescription for the alternate medication was ready for pick up. I asked his nurse (who wasn’t the same nurse that called me yesterday) what happened and she said she had no idea. My counselor was preparing to call my doctor today as well.
I just know how scared I am to be where I was two years ago. I am in a better place today, but I still deal with my TN pain every day.
I will contact the neurosurgeon to ask about an charitable ways I could possibly utilize so that I can perhaps get the surgery sooner.
It just scares me knowing how people can fall through the cracks of not being able to afford surgeries or medications for this disease.
I understand. this condition is relentless and very destructive. It has taken so much from me and has not finished with me yet. Im so sorry for your struggle there is plenty of struggle here too. I wish I had an answer I usually do but I’m finding seeing the bright side a challenge too right now. Sending u love x
Helen,
Sometimes it’s so hard to fight something you feel you can’t win against. I honestly feel I have tried most of what is out there to try except surgery. I don’t like feeling helpless, I’m sure no one does.
I hope you find relief soon. I feel like the pain is so awful and so are the side effects of medications. I hate how mentally dumbed down I feel. I am more forgetful and slower.
I am here if you want to talk more. I feel comfort in knowing we have a place to come to share our frustrations of this disease.
I so sorry to hear of your suffering. I know the pain is sometimes nonending. I know I would cry if I got a call saying I could no longer get my meds. I get my meds through my insurances mail order drug service I pay a very small amount this way. Please keep in touch and let me know how you doing.
Hi kismet. How r u doing this week? I’m laying awake with a very tense bruised feeling face. I’ve taken lots of tramadol so hopefully I’ll drop off soon. You know that impaired dummed response we develop from the drugs is awful and the never ending nature of our illness is overwhelming. At the moment I am trying to stay as in the present as I can. Botox is working for me right now and mild tn 2 pain is about the worst of it right now but out of nowhere my tears won’t stop this eve. I’m sending love hoping u r well x
Thanks for checking in on me. It’s been an trying week. Our 6th anniversary was Saturday and we actually got out and did stuff. It was a very windy day at least it wasn’t a cold wind. I tried to make the best of it even with attacks. I know my husband felt bad when I had attacks, he always do. He feels helpless, but he’s more supportive lately.
I know all to well the dumbed down feeling from meds. I’m so forgetful and mentally slow sometimes. I have a hard time getting my bearings back after really bad attacks. I would love to try Botox one day to see if it helps alleviate the pain. May switch from neurontin to lyrica as I don’t feel it’s helping as it once did.
At my last counseling session I spoke of how this whole disease is just soul breaking. The pain, the meds and the doctors. I used to be such a go-getter. First to graduate from college in my family. Always got promotions at work. Some days I hardly function and my toddler is the one who mostly pays for it. My eldest, he’s 9, has made comments on how he wishes I did more and wasn’t always sick.
I appreciate this board. I appreciate you all. I’m sorry you all has to suffer through this, too.
Helen, Sometimes it’s so hard to fight something you feel you can’t win against. I honestly feel I have tried most of what is out there to try except surgery. I don’t like feeling helpless, I’m sure no one does. I hope you find relief soon. I feel like the pain is so awful and so are the side effects of medications. I hate how mentally dumbed down I feel. I am more forgetful and slower.
I am here if you want to talk more. I feel comfort in knowing we have a place to come to share our frustrations of this disease.