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Why is my head severely tight with Trigeminal Neuralgia?

Posted by lasthurrah9 @lasthurrah9, Apr 3 10:44am

In 2017, I had a Microvascular Decompression performed for Trigeminal Neuralgia, left side of face, no more shocking, but, my head is extremely tight, like a tight rubber band around it, like in a vice, every waking hour, additionally, the top of my head is very sensitive, can barely touch it, if I scratch it, it hurts, I have to sleep propped up, can anyone relate?

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lasthurrah9 | @lasthurrah9 | Apr 11 12:35am
In reply to @beachlife67 "@lasthurrah9 Go see every doctor you can until you find an answer. And if you find..." + (show)
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@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.

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@beachlife67
I feel at this point, the Microvascular Decompression has done its job for over 9 years, I'm 81, I'm done with doctors, I'm learning to cope, as you say one day at a time and I do find joy and peace when I work in my gardens.

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swimmers43 | @swimmers43 | Apr 12 7:46am
In reply to @lasthurrah9 "Hello swimmers43, you are a warrior, you have deep resilience, unwavering determination and a relentless desire..." + (show)
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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.

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@lasthurrah9 Thank you for your reply. I am so sorry for your situation and that it led you to attempting to take your life. I am glad you didn't. I recently had one week of happiness with no pain as the Baclofen combined with the Carbamazepine worked to take away the pain and make me feel like myself again. And then, it didn't. So disappointing and distressing. I can't sing, talk, smile, laugh without making the pain increase. I am tired. I'm ready to become a hermit, go into a cloistered convent...be quiet without demands from others excluding my beloved husband. Friends always say I need to get out, be with them, etc. I don't. I'm happy at home. Good luck to us my friend.

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Geri | @geribuck | Apr 19 12:49pm

I have the same exact issue. Four months after my MVD, I got the severe headaches that felt like my head was in a vice. I saw a neurologist at Mayo Clinic and I now have occipital neuralgia. I am now in a pain management class that Mayo has. It’s about resetting your nervous system. I highly recommend meditation videos for you.

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lasthurrah9 | @lasthurrah9 | Apr 19 7:13pm
In reply to @geribuck "I have the same exact issue. Four months after my MVD, I got the severe headaches..." + (show)
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I have the same exact issue. Four months after my MVD, I got the severe headaches that felt like my head was in a vice. I saw a neurologist at Mayo Clinic and I now have occipital neuralgia. I am now in a pain management class that Mayo has. It’s about resetting your nervous system. I highly recommend meditation videos for you.

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@geribuck I will look into you suggestions, thank you.

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Geri | @geribuck | Apr 19 9:10pm
In reply to @lasthurrah9 "Hello Geri, I'm hugging you now, I felt so alone, I felt anguish, until you came..." + (show)
Profile picture for lasthurrah9 @lasthurrah9

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.

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@lasthurrah9
I just realized I replied to you before today. I also have allodynia. It’s so hard for people to understand if they don’t have all the pain we suffer from. I try very hard to stay active. I started playing pickle ball after 11 months of not doing much of anything. It takes my mind off the pain and doesn’t make it worse. Google meditation for chronic pain on utube.

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lasthurrah9 | @lasthurrah9 | Apr 20 8:34am

I also have a very sensitive head to the touch, i.e., combing and/or washing my hair, laying my head on the pillow is a tough one at night, I must also have allodynia, pushing yourself to be physically active does work, pickle ball is wonderful, I cut lawn and work in my gardens during the warm seasons, winter, I walk on my treadmill, I find when I work my body, my mind is better.

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