Can I have trigeminal neuralgia or neoropathy and body paresthesia?

@tinatoren I’m so sorry you’re going through all of this.
I can relate to the neck, head pain connection. I have occipital neuralgia. My skull and neck are not aligned properly and it gives me lots of pain in my head. The nerves under the scalp are inflamed and cause numbness and pain all around the face. For me, my scalp is sore, my face feels numb down my nose to my lips, jaw pain…
The tingling you mentioned is also there occasionally.

I’m not a doctor. It sounds like you are having some neurological issues and need to find a neurologist who has the skill and compassion to help you!
“Begging for help” sounds like you have to go through a GP first. I’ve seen comments like that before.
I wish you all the best.
Susan

Thanks for replying! I thought the trigeminal nerves ver inside the skull and could not be affected by cervical spine miss alignment. I've been abusing my neck for years both with half sitting in bed because of reflux and hiatal hernia. Also sitting with my head forward beading and crafting plus moving this fall with packing and lifting boxes. My back is in bad shape but I was told that the facial nerves are inside the skull and can only be affected by neurological diseases. Im so afraid I got nerve damage from Nexium and Prilosec since I ate a high dose before this happened. Now my esophagus and stomach have started to hurt so much I can't function but I'm so afraid of going back on acid blockers incase the caused the neuropathy! I don't know what to do!

@tinatoren
If you have been abusing your neck, check out Occipital Neuralgia.
There are easy neck stretches that you can do that will help alleviate the pain in your face etc. You can see videos on YouTube.
I am doing the stretches myself to keep my head from hurting.

The stomach issue is a common problem from my experience. I had to finally get a prescription acid blocker myself. I take Pantoprezole because the aspirin I take for my heart tears my stomach up. The same with Prednisone. My stomach hurts with those things.
Blessings
Susan

Thanks for the tips!

hi, can you see another neurologist, get your primary to send you to another one? second opinion? you still need to wait for mri WITH contrast dye results. Radiologists these days usually work in places where there's an online portal, you might be able to see the tests yourself, without having to wait so long. Print out copies of the reports and bring them to another neurologist. Good luck,

Thanks for the tips. I will try to do that!

So for 6 years now I have had weird tingling, numbness, pain in my face and sometimes down my arms and body that has changed over the years in the way it feels and the intensity, fluctuating from better to worse and back. It seemingly happens out of nowhere and 90% of the time I'm sitting or laying down. It feels like nerve and joint pain. I get really hot, my eyes water, I get dizzy and confused. I've seen 6 neurologists and they have either said it was PNES or they didn't know and sent me on my way. Has anyone else experienced weird feelings in their face and body also accompanied by weird uncomfortable emotional feelings and fleeting thoughts- like trying to remember a part of a dream of a dream? Been on meds, SSRIs are not working and actually make symptoms worse. Any insight or shared experiences would be greatly welcomed and appreciated. Thank you- K

Hello @kcole82 and welcome to Mayo Clinic Connect. I feel for you having been going through this for so long and without some answers to help better understand what is going on.

I wanted to connect you with others who have experienced similar symptoms, so you will notice I have moved your post into an existing discussion that you can find here:
- Can I have trigeminal neuralgia or neuropathy and body paresthesia?: https://connect.mayoclinic.org/discussion/can-i-have-trigeminal-neuralgia-or-neoropathy-and-body-paresthesia/

I did this with the hopes that members @tinatoren @ekelks and @SusanEllen66 could come back in to connect with you and share what they've learned along their journey.

Have you considered seeking another opinion at a multidisciplinary hospital where physicians work together to come to a diagnosis?

@kcole82 Hi. I was wondering how old you are when I read your questions, if you're a woman experiencing menopause, cuz some of your symptoms kind of sound like they might be that. But -- Pain in your face. Can you describe it? Both sides? Sharp? Does it travel? Is it the same kind of pain in your arms and anywhere else? SSRIs -- are you taking anything else that might be contraindicated? Depression, fleeting thoughts of ... suicide? Have you told your psychiatrist about this?

The neurologists, what tests did they order? Did they order an MRI of your brain with contrast?

I think @amandajro is giving you good advice about being seen by a team of doctor.

Also, have you had Covid? Have you vaccinated to the fullest extent? Have you had all vaccinations, flu, hepatitis A & B, chicken pox or shingles vaccines? Etc.

Hope this proves helpful. Also, keep a diary of what your symptoms are, who you've seen, what meds you take, what tests you take.

Best of luck, hope you feel better as soon as possible. Definitely discuss the SSRI meds, see if something else can be used if they're making you feel worse.

Call a hotline, please, if you need to talk to someone. Talking to strangers when you're in pain can be really really helpful.

@kcole82 hi sorry you are having such a hard time! Would you mind telling me what PNES stands for?

Thanks, Susan