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jmb73 (@jmb73)

Occipital Neuralgia

Brain & Nervous System | Last Active: 4 days ago | Replies (116)

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So sorry you’ve had to endure all that. Just suggestion, as learned thru posts many different things can be happening same time, have they evaluated for POTS or orthostatic intolerance? as many of the things you describe are what I experience with that. Hope this helped and you find healing answers soon🙂

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Replies to "So sorry you’ve had to endure all that. Just suggestion, as learned thru posts many different..."

Thank you for your reply. Yes I was tested for pots bout 4-5 years back and yes I do have that. Plus Hoshimoto since 2009. From what my neurosurgeon and neurologist say from my brain MRI that it seems fine. Had to redo one cause one Dr said he saw a Blk mass I’ve done the tests where my head is wired to gizmos. That seemed fine as well. I do have RSD due to a Dr failing of cutting a nerve. I don’t take anymore pain meds in last couple weeks as I’m just leaning on the pain gummies n for sleep. I had been on morphine for about 13 years n the tramadol for 2. I’m not believing the tramadol is cause of my vibrations. And I’ve had a spinal cord stimulator implanted for bout 12 years. It didn’t help of course just more nuisance. But these vibrations feel just like the unit is turned on full blast. So those of you may understand that magnitude of vibrating inside. I’m 62, and past 2 1/2 years I just can’t get a Dr to pay attention of what I’m feeling. From foot dr to nuero to back or knee pain. I thought I was on the right track when I traced back to when these vibrations started which was 2 weeks after taking it. My pharmacist said it can mess w your Serotonin levels. I have a lot of nerve pain where I take Gabapentin for last year. If I miss one it looks like I have PD or MS. My vision is so distorted where I can’t tolerate bright lites. Seems to be getting worse. I still feel it’s Occipital nerves but I bring it up to either of my Neuro Drs that they blow it off n schedule me for a 6 month ck up just to make sure the lil do dads they put in for my Cervical Fushion. I feel like I still need to wear my neck brace just to help hold my head up n for cushioned support. I’ve tried all the deep breathing n that don’t seem to help. One dr says it’s probably time to go see the Mayo Clinic as next resort. But I have my appt that took a year to get in at U of M hosp n Ann Arbor. I sure pray they can help. I’ve got my CD in hand of my MRI’s of Cervical, Brain, Thoracic n Lumbar. The Neurologist I went to back in 18’ who said it was occipital issues I was sent there through pain management but those blocks just the 2 the Dr gave me hurt so bad that I didn’t wanna go back. Like they hurt me worse. I just feel so loopy drunk like and I don’t drink. Base my skull painful 24/7 n can’t find a good spot to lay on my pillow. These lite headed spells make me so sickly. Tinnitus screaming at me. But I wonder if the vibrations I have at my feet up to my waist could be in connection w the neck pain?? One Dr says it could be spinal n another said maybe brain. I’m starting to forget things a lot so Dr gave me something for Dementia to slow that down. But I can just feel this pain in back my head is causing me to feel loopy or drunk, depends on me hanging my head down as to read. It’s like a supply of something is cut off. I’m not too sure how compression on your spine could connect w that. I read once long ago when I first started googling bout these issues I have. I know I’m missing out on a lot of family activities by staying distance from them cause I don’t want my husband of 44 years or daughter to see me like this. I hurt, had chronic pain since 2007. I have extreme Vertigo so bad. Those pills for it don’t seem to help either. GOD Bless us all I pray 1 Dr can give me some answers! I just want to live again! I wish, But I Don’t, that just 1 Dr can feel what I’m going through for 30 seconds n say to me, I think I know what it is or We can try this or that! Thank you for your support n I hope I’ve touched base w someone here that’s also going through these things. I don’t just do 1 thing as my Dear Husband says, You have to have a bunch of things wrong. I feel for anyone that’s in this same situation. So for those of you who do know about spinal cord stimulators, like had one, imagine having it it turned up full speed. I usually say or say how Angry these r right now. I did have mine removed 2 years ago n they made sure to remove all leads so that’s been cleared of not causing the vibrations. I’m just so happy to google bout internal Vibrations that led me here cause I didn’t think I was the only one. Thank you so much for all the support there is here. I’m Not the only one, n it’s not all in my head. Thank you!