Today I was told at my headache specialist that she thinks I have occipital neuralgia.
(because I have stabbing pain in my neck and headaches behind my eyes, and when I laugh or sneeze or cough I have pressure in my head)
She doesn’t believe I have a chiari that is causing my pain.
She is thinking about putting a nerve block.
Have you has any experience with this?
(sorry for writing so many forums 
)
I have had my 2 major & right minor Occipital Nerves blocked. They do help with headaches. There are some side effects of the injections. There are some tips I will give you & your Mom. Did she say where you Occipital Neuralgia came from if you don't have Chiari? Have you had any head injuries? What did she say about your hearing loss? I would just like for you to know what she thinks links all your symptoms.
What is her speciality other than a Headache specialist? Is she a NL?
These blocks will help your headaches, but you will still need your medication. It doesn't make the headaches disappear...just a little more bearable. I have daily headaches & could never quit my medication. I am interested in a new therapy for pain. I just learned about it today & my Dr's were already done for the day but will let you know what I find out tomorrow.
Do you both mean an Occipital Nerve Block? Not to scare you, but (as I did with the Botox injections) I had an extreme adverse reaction to having a nerve block. My understanding is that this is very rare; for some reason I just seem not to be able to tolerate getting injections in my head. That wasn’t the worst part - the worst part was that my doctor did not believe me and denied me pain medication. Again this is very rare, but I would recommend just asking your doctor beforehand how she will treat you should you suffer any adverse side effects. We always just assume these things will work or not work; we don’t count on getting worse. Good luck and I pray you will experience some relief!
Sparkyschick,
I am headed into get Botox injections today. My headache specialist (NL) suggested them for the Occipital Neuralgia because I have exhausted all the neurological meds and this is the least invasive, next step. I have heard of people having "bad reactions" or of the injections not working. She said that she has had success with all of her patients just at varying degrees. I am a little nervous, of course. I am hopeful, but not too hopeful because nothing has helped thus far. Can you tell me what happened, just so I can know what to look for in the event that something adverse would come up? I just want to be prepared. I have had so many reactions to other meds that I am quite fearful. I just don't want anymore pain on top of the ON pain. That in itself is ENOUGH!!! Thanks!
Sparkyschick said:
Do you both mean an Occipital Nerve Block? Not to scare you, but (as I did with the Botox injections) I had an extreme adverse reaction to having a nerve block. My understanding is that this is very rare; for some reason I just seem not to be able to tolerate getting injections in my head. That wasn't the worst part - the worst part was that my doctor did not believe me and denied me pain medication. Again this is very rare, but I would recommend just asking your doctor beforehand how she will treat you should you suffer any adverse side effects. We always just assume these things will work or not work; we don't count on getting worse. Good luck and I pray you will experience some relief!
Oh my gosh, I just saw this, sorry! Nicole, I am hoping that everything went smoothly for you and you have found relief.
When I had my Botox injections, everything was fine until about day 4. All of a sudden I developed tremendous pain and weakness in my neck. The pain was so intense that I needed to use extra muscles to try to hold my head up, only problem was my neck muscles were paralyzed from the Botox. So for a full month I couldn’t hold my neck up on my own. I had to bring an airplane pillow to work to be able to work. My muscles were finally able to re- engage at the month mark, but the intense pain remained, 24/7 for another 2 months. The doc kept asking if the Botox helped my headache, but there was no way to tell because the neck pain was so overpowering.
I had a very similar reaction with the occipital nerve block, minus the paralysis, so I could hold my head up, but it still took a lot of effort with so much pain. Fortunately the most severe pain only lasted about 6 weeks instead of 3 months. I will never, ever get injections in my head ever again. I’m not sure why I can’t tolerate them.
As I mentioned before, I know others can have success, I would just make sure your doctor agrees up front to give you pain meds if something goes wrong. Mine would not give me meds and the pain I experienced was torturous.
Sydney,
Did your Dr. tell you your neck would be swollen? If not you might want to call the on call Dr. & ask if that is normal. I have had many Nerve Blocks and C Spine injections and never had swelling.
It's better to be safe,
Tracy Z.
I forgot I even posted this until I saw it now! I had awful pain a few day post injection. I just thought I was going into a "flare up." But the iggest issue is the neck weakness!!! I was in the shower a few days after and felt like I couldn't get my head back up after leaning it back after washing it. It was so weak and still is. I keep saying it feels "floppy." And it feels heavy. I don't have as much pain in my occipital area but it feels like the pian in other areas around my head and neck is now worse.
I am just not sure what to think about it all. Did you contact your doctor? What did they say? I also feel like it is more work to swallow/chew food. Not like Chiari choking, just like those muscle are soooo tired. Oh and I almost feel more foggy. This probable has nothing to do with it, but I feel like the botox seeped into my brain lol. I just feel so strange. I was hoping it would all let up, but it will be two weeks tomorrow and I am going to contact her then. Thanks for the info!!!
Sparkyschick said:
Oh my gosh, I just saw this, sorry! Nicole, I am hoping that everything went smoothly for you and you have found relief.
When I had my Botox injections, everything was fine until about day 4. All of a sudden I developed tremendous pain and weakness in my neck. The pain was so intense that I needed to use extra muscles to try to hold my head up, only problem was my neck muscles were paralyzed from the Botox. So for a full month I couldn't hold my neck up on my own. I had to bring an airplane pillow to work to be able to work. My muscles were finally able to re- engage at the month mark, but the intense pain remained, 24/7 for another 2 months. The doc kept asking if the Botox helped my headache, but there was no way to tell because the neck pain was so overpowering.
I had a very similar reaction with the occipital nerve block, minus the paralysis, so I could hold my head up, but it still took a lot of effort with so much pain. Fortunately the most severe pain only lasted about 6 weeks instead of 3 months. I will never, ever get injections in my head ever again. I'm not sure why I can't tolerate them.
As I mentioned before, I know others can have success, I would just make sure your doctor agrees up front to give you pain meds if something goes wrong. Mine would not give me meds and the pain I experienced was torturous.
Poor girlie!! I hope you find some relief soon<3. I think about you often are you feeling better today?
@ Nicole, my doctor had never seen that reaction before, so she pretty much flat out told me that she didn't believe me. After it went on for 2 weeks and I kept calling her crying, she finally did some research and saw that this can occasionally happen and then gave me some mild pain medication. When I got the nerve block and had basically the same reaction, that doctor flat out accused me of drug seeking and would not give me pain medication and told me to go to the ER. To be in such horrendous pain and treated that way, that was my lowest low in my Chiari journey and finally made me want surgery.
Sydney, I agree with Tracy - have you called your doctor? I don't know what a "normal" reaction is after a nerve block. The good news is that since it doesn't have the paralysis effect like Botox, hopefully any adverse reaction should wear off quickly. I am hoping by now you've called your doctor and are on your way to feeling better!