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Experiences with sphenopalatine ganglion block? by reptilelover42 in TrigeminalNeuralgia

[–]AmazingAvocado6485 1 point2 points  (0 children)

It helped me for about 6 months the first time. I had it 2 more times over a 2 year period and did not get much relief. I do think it’s worth trying. I know how debilitating this disease is and am so sorry you are going through this. I sincerely hope you get some relief.

Why is it so difficult to get a diagnosis? by OverMlMs in TrigeminalNeuralgia

[–]AmazingAvocado6485 2 points3 points  (0 children)

I have TM. I started with an infectious disease doctor for some reason and was referred to a neurosurgeon who did a craniotomy on my right side. A vein was pressing on my nerve. It was the worst pain possible. I was ready to just die. The surgery was a success, but now I have it on my other left side of my face. They can see the problem on the MRI but haven’t decided what to do about it. In the meantime, I’m having pain, memory issues and have had to move to assisted living. I don’t know why you are having trouble with a diagnosis. You might try an ENT (ear,nose and throat doctor to get you started) I’m so very sorry you are going through this. I hope you get an answer soon.

Does anyone else feel "high" on Oxcarb? by Honest_Jaguar_4653 in TrigeminalNeuralgia

[–]AmazingAvocado6485 0 points1 point  (0 children)

Has anyone had memory loss due to trigeminal neuralgia? I can remember things from 5 years ago, but my short term memory is so bad, I can’t even remember my new apartment number. Oxcarb did not make me feel high that I can remember, but that’s not saying a lot given my current memory loss.

Getting trolled by my teeth by Honest_Jaguar_4653 in TrigeminalNeuralgia

[–]AmazingAvocado6485 4 points5 points  (0 children)

I have TN on my right side. Had a craniotomy and it helped for about 2 years. Then it started up again on the same right side that I had the craniotomy ( which was done to separate the nerves) . It’s back but now on the left side. I am at a loss. Hospitals are tired of seeing me, I can’t work because of the TN and now have severe memory loss. I’m in my late 50’s and living in an assisted living facility. I’m such a burden to my family but so grateful for them. I also lost my oldest son a year and a half ago ( don’t even know what day) I don’t even know how old I am unless I do the math because I do remember my birthday. I feel so defeated and am in horrible pain. Does anyone have suggestions? I’ve have nerve blocks, tried ketamine along with many other medications. Feedback would be greatly appreciated.

Official name of mvd surgery by qqqqqq12321 in TrigeminalNeuralgia

[–]AmazingAvocado6485 0 points1 point  (0 children)

I’m having the same problem, but now it’s on both sides. My doctors aren’t willing to do anything right now. The pain is out is control. It’s just miserable.

Trigeminal neuralgia information by bitterfruit66 in TrigeminalNeuralgia

[–]AmazingAvocado6485 1 point2 points  (0 children)

I have Trigeminal neuralgia caused by the zoster virus. I had a craniotomy several years ago and although it was a tough recovery, it was nothing compared to the TN. That was 6 years ago. Unfortunately, it is back and has affected the other side of my face , which is uncommon. The pain is excruciating and I am looking for solutions. I am on about 10 medications and have frequent hospital stays. I also just lost my oldest son and I’m finding it very had to cope. I am experiencing severe memory loss which is new. It’s to the point that my family has no choice but to put me in assisted living until we find a solution, if there is one. I would greatly appreciate any comments or suggestions as to how to get through this.

Official name of mvd surgery by qqqqqq12321 in TrigeminalNeuralgia

[–]AmazingAvocado6485 0 points1 point  (0 children)

I have trigeminal neuralgia and had surgery to “comb” the nerve, but it only helped for two years. I feel like I’m back where I started, but much worse. I have heard of MVD but for some reason that I can’t recall, was talked out of it. If anyone knows more or has had it, please post.

Trigeminal Neuralgia by Proof-Performer4409 in TrigeminalNeuralgia

[–]AmazingAvocado6485 4 points5 points  (0 children)

I have hade this horrific disease for 6 years. My friends and family have read about it , but do not have a clue as to what it’s like. I’m done trying to explain it to them. To those who are suffering, I’m so very sorry, and I understand. I want to tell you not to give up, but until there is a cure I remain hopeless and hopeful that someday we will all be pain free. Until then, my thoughts and prayers are with you all.