Trigeminal nerve problems

Hi I just joined. Almost a year on from having a stroke in the hindbrain that has left me with right sided hypersensitivity, I have been unable to get any help or understanding for some symptoms. I hope someone may be able to offer advice. I have a persistent left-sided nasal drip which cannot be explained. Also the left eye can get very irritated and I can't read. At worst, there is also pain above the brow. The trigeminal nerve affects all these areas.

These symptoms become worse after I have had an 'episode' -- a moment of queerness, starting wth a electronic-type high pitched sound in my brain with vertigo-type light headedness/dizziness. Whenever I have one of these bouts, I am very unsteady and unstable for 3 days minimum afterwards and have to remain lying.

Whenever I feel I am recovering, I have another episode that sets me right back. I have no idea what causes these setbacks.

NHS is not offering help other than medicine to block runny nose. Wish I could see a neurologist. Any one with insights?


8 Replies

  • Hi did you have a medullary stroke also called Wallenberg?

  • I don't know the name, but it was hindbrain so maybe medulla. They did not detect it at first, only from subsequent MRI after my brother I insisted for further investigation as he also had hindbrain stroke. I'm now doing some googling into this and see the connections, particularly with the 'root' of the trigeminal nerve, it's pathways and my problems. Thanks f🙏 r the info and lead.

  • That's ok. I had a medullary stroke they are fairly rare and are not always diagnosed immediately. There are many symptoms and balance and dizziness are some of the main ones. There is not a lot of info out there but it's worth looking into and mentioning when you see neurologist. Please get in touch if you want to know anymore. Good luck

  • Thank you. This is helpful.

  • I think you should push for a referral to a neurologist to look into this properly

  • Thank you. I will now do so.

  • We get these problems. They might cross the boundaries of 2 or 3 specialists but not fall into the remit of 1. Each person who's had a stroke might have very many of these. Where do we start?

  • I had no warning for mine. Got up in the morning,( washed, dressed and went downstairs to make a cup of tea and toast before going to work. I sat down and my left side just dropped, thought it was a stroke so called my husband who rang the ambulance that was at 6.00 in the morning. At the beginning of the week i had been to work then gone for my usual Monday swim done everything i normally do so can't understand it as we are told to keep fit and active

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