Trigeminal Neuralgia, Brain Tumor, Tinnitus — How to Live a Normal Life?

Hello Everyone,

After three years I’m finally posting to ask for advice. Has anyone found a way to make life livable? Family gatherings, football games for your kids, a horn beeping in traffic. Those put you on your knees.

I’ve tried high doses of Gabapentin, anti-anxiety meds, marijuana, and alcohol. Nothing has helped. I tried meditation, diet changes, Reiki, and acupuncture. Nothing helps except sleep and no noise period.

At this point my marriage is in shambles. I need to quit my job. Anyone have anything that works?

 

Hi @Chris Nesselroad, sorry to read of your troubles. Has the brain tumour gone? Did you take antidepressants or anxiolytics/benzos like Valium, Xanax or Klonopin?

 

Tumor will always be there. Two surgeries and a round of radiation. I’ve tried high dose 1800 mg of Gabapentin, marijuana, two different anticonvulsants, anti-anxiety, physical therapy, and much more but none of them worked. Currently on no meds.

Thank you for asking.

How do you cope?

 

@Chris Nesselroad, I am so sorry. You have been, and continue to go through, a lot.

I had to go to a psychiatric hospital when I first got intrusive tinnitus. They put me on high dose valium plus I reinstated an antidepressant that I thought might have been the original cause of my tinnitus. It probably was not.

I do not work. I try to get my sleep, I take antidepressants and have Valium to take.

Have you had a look at the Research News page? The University of Michigan signal timing thread talks about Dr. Susan Shore and her device for tinnitus. We are expecting results on this next month. In addition, there appears to be nerve blocker treatment in South Korea that has had very good results. Have you ever tried nerve blockers? With your trigeminal neuralgia, that might be something worth looking at.

Best wishes.

 

@Uklawyer, thank you for responding and for some insight to how you are coping. It is sad that we are all suffering. I hope that Dr. Shore from Michigan has great results.

No, I haven’t tried the nerve blocker, looking it up right now.

Thank you again for responding. While I wish no one had to go through this, I’d be lying if I didn’t admit it isn’t comforting to know that someone understands where I’m coming from.

Best wishes to you too.

 

@Chris Nesselroad, you are right: no one should have to go through this. But people do, and there are people on here that understand you. People on here and elsewhere also suffer from additional problems. It is not easy, but this one is particularly difficult. Hopefully, we are getting much closer to treatments that will make a huge difference to those that suffer from this.

Is the tumour related to the neuralgia and tinnitus?

 

It’s a left sphenoid meningioma and it’s wrapped around my eye nerves and my carotid artery. They gave me three weeks to not lose my eyesight due to pressure against pituitary and optic chiasm. Hence brain surgery number 2. It’s currently 2.5 cm by 4.8 cm.

I honestly don’t know what happened or how the ear was damaged. When I asked them about Botox to kill the nerves in my face they said it would have to be administered too deep into my head. I think it’s either from the pressure of the tumor, or it could be damaged from brain surgery number 2. So either pressure, damage from brain surgery. I didn’t have any symptoms before that.

 

Has any of the tumor been removed? Looks like tinnitus is a possible symptom.

 

@Chris Nesselroad, sorry to read about your situation. I have an acoustic neuroma that was treated early last year. I know we don't have the same type of tumor, but I can understand your situation.

How are you doing now?

 

Trying to train my replacement at work and go down in hours. Maybe change my job. I’m still moving and trying to live the quietest life I can. Lol. Thanks for inquiring.

So yours was pretty recent. Did they take it out or did they do radiation?

 

I had Gamma Knife in Jan '21 and it has shrunk almost half in size upon reviewing my 1 year MRI. Unfortunately, my high frequency hearing is pretty much torched but other than that I'm ok.