Occipital Neuralgia

Hi Rachel. I too have been having occipital nerve issues. Back in 2018 I was sent to a neurologist and she automatically said it was inflammation of that nerves. So she said a block would help. It hurt so bad I cried hard. It made the pain worse at back my head and neck. Many migraine’s. Drs would have me take daily shots but they never helped. It took 8 long months just to get back to the same level I was before the block on each side. Back of my head. You mention Ablations. I’m curious how those work. I’ve been suffering with this nasty pain back curve of my head past 5 years. I had taken a bad fall earlier that year and hit back of my head on a 2 liter pop bottle. I can’t get my neurosurgeon to listen and pay attention to me bout this. He did do a Cervical Fushion at C4 through C7. Says it looks fine but he can’t explain migraines n pain at back my skull/neck. I have tinnitus screaming so loud past 10 years. If I hold my head down to read and then look up I feel loopy drunk like. I kind of get the feeling like blood supply or oxygen or a nerve pinched tight that when I walk I stumble. A lot. Head fuzzy. It’s a miserable feeling and I tend to lie down a lot and social distance myself from my family. I don’t want nobody seeing me feeling like this. I tried something not on purpose other day but by accident. Instead of taking pain pills as I have been since 15 yrs now I’ve tried the THC and CBD gummies. They help w some pain. But I just don’t wanna get to used to them. I mainly try 2 per day for pain. But I took it round noon and these r 30 min. Acting but I was coloring and had my head down few hours but I never felt any pain relief so 5 hours later I get up and after 10 min. I’m starting to feel the gummy. So that’s how I’ve come to the conclusion that a nerve or blood supply is cut off where I couldn’t feel the gummy’s. So 8 hours laters approx. I started feeling the gummy working. I started getting lil munchie then. So does this sound possible of something being cut off in order to me feeling this way? My head is drunk most of the time and I stumble where I fall. So embarrassing. Headaches are back my head and front forehead plus behind my ears. Does this sound like a ablation situation? I’m starting to loose trust in some Drs. I don’t know if they’re worried bout doing more or just settle for doing that fusion. I need help. I’m begging for help. I can’t do another year of this. How do I get a Dr to pay attention to this ? Even he gave me a shot for migraines and said I shouldn’t have anymore fore good year. Wrong. I have 50 plus a day. I’m sure that Neurologist I saw back in ‘18 knew it was occipital as she said but I was scared to go back cause I got hurt with the 1st nerve block. Any ideas from anyone here? Much thank you and Be Safe Folks.

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Hi Rachel. I too have been having occipital nerve issues. Back in 2018 I was sent to a neurologist and she automatically said it was inflammation of that nerves. So she said a block would help. It hurt so bad I cried hard. It made the pain worse at back my head and neck. Many migraine’s. Drs would have me take daily shots but they never helped. It took 8 long months just to get back to the same level I was before the block on each side. Back of my head. You mention Ablations. I’m curious how those work. I’ve been suffering with this nasty pain back curve of my head past 5 years. I had taken a bad fall earlier that year and hit back of my head on a 2 liter pop bottle. I can’t get my neurosurgeon to listen and pay attention to me bout this. He did do a Cervical Fushion at C4 through C7. Says it looks fine but he can’t explain migraines n pain at back my skull/neck. I have tinnitus screaming so loud past 10 years. If I hold my head down to read and then look up I feel loopy drunk like. I kind of get the feeling like blood supply or oxygen or a nerve pinched tight that when I walk I stumble. A lot. Head fuzzy. It’s a miserable feeling and I tend to lie down a lot and social distance myself from my family. I don’t want nobody seeing me feeling like this. I tried something not on purpose other day but by accident. Instead of taking pain pills as I have been since 15 yrs now I’ve tried the THC and CBD gummies. They help w some pain. But I just don’t wanna get to used to them. I mainly try 2 per day for pain. But I took it round noon and these r 30 min. Acting but I was coloring and had my head down few hours but I never felt any pain relief so 5 hours later I get up and after 10 min. I’m starting to feel the gummy. So that’s how I’ve come to the conclusion that a nerve or blood supply is cut off where I couldn’t feel the gummy’s. So 8 hours laters approx. I started feeling the gummy working. I started getting lil munchie then. So does this sound possible of something being cut off in order to me feeling this way? My head is drunk most of the time and I stumble where I fall. So embarrassing. Headaches are back my head and front forehead plus behind my ears. Does this sound like a ablation situation? I’m starting to loose trust in some Drs. I don’t know if they’re worried bout doing more or just settle for doing that fusion. I need help. I’m begging for help. I can’t do another year of this. How do I get a Dr to pay attention to this ? Even he gave me a shot for migraines and said I shouldn’t have anymore fore good year. Wrong. I have 50 plus a day. I’m sure that Neurologist I saw back in ‘18 knew it was occipital as she said but I was scared to go back cause I got hurt with the 1st nerve block. Any ideas from anyone here? Much thank you and Be Safe Folks.

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All one sided headache problem folks, please check out Cluster Headaches. They are called “clusters” because they come one after another usually. More severe than migraines if you can believe that. Always involve only the same side of head. Teeth, ear, jaw, all will be in hard pain. The cure is O2, yes Oxygen. At first sign of one start breathing deep and long breaths pulling air thru your nose, exhale thru mouth.. Do so until pains subsides. If this fails see you doctor and get RX for E-tanks of oxygen. Set flow meter to 8 to 10 (a lot). Clusters are the worst headache imaginable. And so simple to eliminate. Best to all. And get those shoulders out of your Ears and try relaxing some! Treetop

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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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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!

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Hi, i have those internal vibrations in my head and body and the Neurologist is clueless about it have an appointment on the 22nd of March to do some test and encefalogram. Now i also am having like anxiety very bad that can't sleep, Took a 0.25 xanax last night and after five hours i woke up at 3:30 am and with my blood pressure on 150/84 so i have to take some tea and Parcha fruit that they say lowers the BP. I am going crazy with these vibrations and not knowing what are they from.

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I did have the EEG test and of course my Vibrations was really angry that day. It was my birthday so I remembered it. Was a painful test of prickling my legs but the tests came back fine. No problem on its end. So that didn’t register these Vibrations so what could these be from? Don’t wanna did you bout the test but that’s how it came out for me. Get MRI’s all over your body. Like my Dr ordered Brain, Cervical, Thoracic n Lumbar but only thing my Neurosurgeon saw was the cyst n my spine at mid back area that may be preventing fluid to flow through properly. So I’m wondering could these be from a disturbed nerve ? Do Nerves show up on MRI’s ? I’m not sure bout that. So just wondering n will do a Dr Google search. I pray you have luck w your upcoming test. When ya get those results please respond back. Take care n hugs 🤗

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