What else can I do? Trying to stay positive

As many of you are, I am in pain almost all day, every day. I can't work and eating and drinking is becoming very difficult. My pain shocks last much longer than the "30 seconds to 1 minute" doctors tell me they are supposed to. I just timed one that lasted over 10 minutes, so I just turned off the timer. It's going on 30 minutes at this point.

The pain is the hardest part. After the pain, the hardest part is the loneliness. I am a people person, and my inability to get out there and work (or drive and see my friends frequently) is really difficult for me. My husband works 12-14 hr days. We might get a cat this week. That will help tremendously. I love cats.

I just started another new medication. I asked if I could STOP one of my meds with the addition of the new one, but the answer was "not until you get some relief." Here is the long list:

  • Gabapentin 1800mg
  • Baclofen 30mg
  • Topamax 175mg
  • and now Depakote, working up to 500mg

I saw a neurosurgeon who said I was NOT a candidate for MVD, just gamma knife. I didn't like that answer, so I am waiting on a referral for a second opinion to a neurosurgeon who is actually a specialist in trigeminal neuralgia.

I am doing acupuncture. I am on a low carb, low sugar, gluten free diet to see if that can help the pain. Basically I am trying anything I can.

I am doing my best to stay positive. I go to the beach to look at the seals. I go for walks. But I cry a lot. I am in so much pain. So so so so so so so much unbearable pain. I even broke down and went to the ER last week, hoping they could give me something to just ease the pain. They turned me away. I guess they thought I was some druggy.

I am in so much pain. And I hate being alone. I wish there were enough of us that we could have an in person support group.

But today I will still laugh and smile, because I am here and alive, and no pain can take that away from me.

Try to be positive and try to say I a stronger than you T N
I have found Carbamazepine to work best for me
I had gamma knife and found I have been feeling a lot better and on a reduced dosage of meds
Hope the sun is shining in your part of the world as it tends to make everyone feel somewhat better

((( LBHiker )))

Hi LBHiker,

I sent you a message, I think I'm about an hour and a half drive from you .. maybe we could start an in person support group, it's something to think about :) It is really hard to live with this horrible pain everyday without feeling isolated. I'm so thankful for this group! I hope you find some relief from your pain soon. You're not alone.


Can totally understand what you are going thru and feel for you.
To care for you mental health, which doea get affected, I would recommend seeing a councillor/phycologist to help deal with it. Also, are you in australia? If so, you can get an epc to help financially (ie. Free visits to phycologist, physio etc). if you are in aust, and are able to get to brisbane, there is someone here who I saw and I dont have any pain now. Worth travelling for :slight_smile: all the best and hope you find answers.