Why is my head severely tight with Trigeminal Neuralgia?

Welcome to Mayo Clinic Connect, @lasthurrah9, and sorry to hear your head feels like it's in a vice and the top of your head is extremely sensitive. How very uncomfortable.

Here's some information from Mayo Clinic that may be useful:

- Trigeminal neuralgia https://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/symptoms-causes/syc-20353344

Did the microvascular decompression improve some symptoms of your trigeminal neuralgia? Did the tightness appear after the decompression, or did you have it previously?

The microvascular decompression relieved me of the severe shocks, which was and is a great improvement since 2017, the tightness came after the decompression gradually, today, it is a constant, at times it is so tight I have to talk to myself to calm myself because I feel my head will explode, it is a very scary feeling, plus, I forgot to mention, it is affecting my sight, blurred vision even after having cataracts removed in both eyes and my ears feel clogged, as if you are in an airplane and you can't clear them.

I had MVD a year ago. I’m going through exactly what you are. The headaches are awful. I describe it the same way you do like my head is in a vise. I do find that heat helps when it’s at its worse. I also still have horrible pain in my jaw from TN2 but my shocks are gone from TN1. Sometimes I wonder if these headaches are worse than the shocks.

Forgot to tell you that after MVD surgery the surgeon diagnosed me with Occipital Neuralgia. That might be what you also may have.

Hello Geri,
I'm hugging you now, I felt so alone, I felt anguish, until you came forward and shared your same affliction, I am so sorry you are suffering, I do not have Occipital Neuralgia as the condition is a piercing, throbbing, or burning pain that often feels like an electric shock, originating at the base of the skull and spreading to the upper neck, back of the head and behind the ears but I do have extreme sensitivity to touch (allodynia) on the scalp, often making brushing hair, wearing a hat or showering painful, I will apply a heating pad as you suggest.

@lasthurrah9
I have had the same symptoms for 2 1/2 years with no answers, along with vertigo episodes and constant dizziness, off balance, disequilibrium, eye strain for the last year. MRIs, CT, X-rays, all show nothing. It’s debilitating. I found that heat aggravates it and so does ice. I’m at a loss since I can’t tolerate medications with the already constant dizziness I have.

Oh, beachlife67, you are dealing with so much pain, my heart reaches out to you, I planned to see a neurologist but after hearing what you have been through, I too believe the tests will show nothing, how do we learn to live with this?

@lasthurrah9
Go see every doctor you can until you find an answer. And if you find the magic, please report back. Wishing you luck! Until then, take it one day at a time and find some peace in each day. I do find being outside in nature helps my mind deal with it all a bit better.

13 years living with 24/7 pain from a dental procedure gone wrong. Diagnosed as trigeminal nerve disorder. Symptoms = face in vise, burning lips and mouth, aching (rarely a sharp pain midline from mouth to crown of head left of median. Thought I was having a stoke the first time it happened.) One neurologist told me the specialty has really not done very well by patients in this area. Same neurologist said the diagnosis is for when they don't know what it is or what to do. Seen by multiple neurologists, neurosurgeons, oral surgeons, naturopath for >1 year, acupuncture for 2 years, various meds, supplementals. I am also a slow metabolizer of prescription drugs. Two things have helped a little : Alpha lipoic acid, a supplement, and carbamazepine 50 mg am and 50 mg pm. Recently started Baclofen, 1.25 mg am and 5 mg pm, as a booster which makes carbamazepine more effective but am having a hard time tolerating it (lack of balance, nausea, body feels like dead weight). I am sorry for everyone's pain; I empathize. I am so glad I have access to your comments. Radio frequency ablation and balloon compression are on the table for consideration but I have been reluctant. Apparently for good reason. Thank you all. I am praying for you.

Hello swimmers43, you are a warrior, you have deep resilience, unwavering determination and a relentless desire to keep moving forward despite physical or emotional pain, I admire you, I have given up, that's ok for me, neurologists do not have enough knowledge of our rare, torturing disorder, the horrible meds are a perfect example of the lack of interest in making this disease tolerable, there's not enough of us who have it, I was fortunate to discover Dr. Michael Lim, Johns Hopkins, 2017, I was so desperate with shocking pain, could not take meds, horrible side affects, I even tried to take my life, his Microvascular Decompression operation saved my life, but, after 9 years, the trigeminal neuralgia is rearing its ugly head with this tight, vise like condition in and around my head, this monster hits us in many different ways.