Occipital Neuralgia: UPDATE: Hello everyone... - Pain Concern

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Occipital Neuralgia: UPDATE

Hecate930
Hecate930

Hello everyone (:

I hope you all had a good day, despite these nasty pains!

I had posted something last week about me possibly having Occipital Neuralgia. I had my appt today with the pain specialist/neurologist and, well, it turns out that I do! Honestly, in a good but weird way, I am relieved. Wanting to know why the things that happen to our bodies, may just be in our DNA. I have Occipital Neuralgia and Chronic Migraines. I get my first nerve blocks on May 19th. And I’m already counting down the days 😆 He also started me on NORTRIPTYLINE, in hopes it helps for the pain. I’m excited to finally have some answers and things starting to happen.

37 Replies
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Good for you. I have it as well. I have neck injuries that affect it. Try to keep your neck strong and posture to keep pressure off the nerve. Did you talk to him about riboflavin? Ask him about that it can help too. I didn’t find much relief from the nerve block but I don’t handle steroids well. Know that your head will feel numb and weird back there like it’s not your own lol. It also doesn’t last long. That’s my experience with it. So watch that texting posture

Hecate930
Hecate930
in reply to guitara69

Oh man, sorry to hear that! I did not talk to him about riboflavin. I have no idea what that is. Haha I’m new to this whole thing with someone actually helping me out with my neck pain and chronic migraines. My doctors just pushed me off, and never even touched my head or neck. Or asked where things hurt. And I’ve had this for 15 years!!

Thank you for the tips!! I have been trying to have better posture lately. I’ve noticed it’s gotten very sloppy.

He also is ordering me a MRI and physical therapy on top of it all. So, that’s good. He said if the nerve block doesn’t work, I have to “fail” the physical therapy, (by it not working for me) and he can do a procedure in a slightly different spot where he goes in and cuts/untangles the nerves. (Something like that.) I had a migraine of course so my concentration was a bit off. But he said this procedure has the highest success rate.

So, one way or another, I will find relief!

guitara69
guitara69
in reply to Hecate930

Oh you’re very lucky he’s willing to do surgery should you need it. Great doc and good game plan. The riboflavin is a vitamin in the b family it is shown to help with them. But yes my neck is a mess weak my migraines are constant it will take some time to correct it don’t stop doing the exercises even if you get the surgery. The stupid migraines make it harder to move too and sit right strengthen making posture worse. Don’t let up on exercises I got very sick still am and weaker mine are off the charts. My stimach is hot mess from other meds my posture is brutal from being laid up and my neck headaches much worse. Hence my suggestion about exercises. You’re in good hands I would love that surgery don’t know why they’re not doing it for me.

Hecate930
Hecate930
in reply to guitara69

Yes, I am very lucky to have been referred to him. And oh wow, a vitamin? Can you buy it on amazon or a vitamin store? Or is it only a prescription?

I’m so sorry to hear about the terrible migraines and neck pain. It definitely takes a toll on us, in every way possible. I will definitely keep doing the exercises and strengthening positions. Thanks for the tip! Also, I’d ask your doc about something like this procedure! -This certain doctor I am going to is a spine pain management specialist whose specialty in college was neurology. I don’t know if this makes our cases different? Because he’s a spine pain management specialist? Idk.

guitara69
guitara69
in reply to Hecate930

Riboflavin is vitamin b2 so yes you can order it online. You want 400 mg a day it doesn’t work right away you have to stick with it.

I’m in Canada. You guys have a great system really as you get to see specialists and get surgeries right away it’s just costly. We wait sometimes a year or 3 to see someone all true and mris can be a years wait too. People die. We pay monthly for health insurance. And private pay for all other things. I was off work waiting over a year for nerve blocks. I’m financially ruined from stuff they missed where I could have been an active citizen but now have mental health issues from stress and recoveries from illness slow specialists surgeries. I wish I was American and had insurance lol. But I love Canada too just geez I am not impressed with our medical system. If you’re healthy it’s fine. They seem to take care of kids & cancer ok too. Though not in all cases very slow my dad almost died because referrals too slow.

Hecate930
Hecate930
in reply to guitara69

Oh my. This seriously hurts my heart hearing this from you guys!! I am so sorry! It’s just so inhumane!! - I am glad your dad is okay. Although, doesn’t help the way the health care system works there. Ugh. I wish you two could just come to the states on a vacation and somehow get healthcare and get things taken care of!!! Ha 😐😐😐😐

guitara69
guitara69
in reply to Hecate930

Girl .. me too lol!! But I’m very happy you have this opportunity to get better !! Thank you and count our blessings right ?!!

Hecate930
Hecate930
in reply to guitara69

Of course!! I felt very blessed when you guys have said this. I didn’t realize how much better healthcare we had here! My heart goes out to you all!

My story mimics yours. I’m Canadian to and I’m financially ruined saving my life.

Yes I saw your post mine started with my reproductive system over n over not believing me. Been a mess. Our system sucks not quick enough. Big hug.

As far as I’m concerned I was gas lighted and tortured. Doctors are still profiling and abusing patients! It’s disgusting. I no longer trust them whatsoever.

Hope it works. If it does I'll talk to my pain consultant.

What dosage of nortriptiline are you prescribed? I'm taking 50 MG at night.

Hecate930
Hecate930
in reply to Entela15

Thank you! As I’ve stated in my comment above, if that doesn’t work, I have to “fail” physical therapy and he can do a procedure with the highest success rate. They go in and either cut or untangle the nerves. I had a hard time comprehending him at that time due to my migraine. But soon enough!!

Also, he has me on 50mg as well. But I have to start slow. Week 1- 10mg. Week 2-20mg, and so on.. he said that keeping the dose low (50mg) is where they find the most affective benefits for pain relief. (:

Entela15
Entela15
in reply to Hecate930

Thanks for the information. Please keep me updated how things go. I'm already on 50mg of nortriptiline but I still have pain. Maybe I can suggest these procedures to my pain consultant when I get to see one.

I take it you're in America and you can see a consultant much quicker than in the UK. Here we have to wait. But it's good to know that there are things they can do except medication. Hope I it works out for you. X

Hecate930
Hecate930
in reply to Entela15

I will definitely keep you updated! I’m sorry about your pain still :/ maybe see if you can switch to something else?

Yes, I am in the states. I had to get a referral from my doctor though. It took about a month and a half to get in with this new guy. Why does it take longer in the UK? If you don’t mind me asking.

Again, I don’t remember exactly what he said about the best procedure. It may have had something to do with the blood vessels as well. My mother was in the appointment with me. I will ask her if she remembers more about what he said exactly. I will report back.

Entela15
Entela15
in reply to Hecate930

It takes much longer here because health care is not private. It's owned by the state. It's actually very bad. I had a very good pain consultant who resigned from her job because she was fed up with the management. She didn't have the freedom to treat patients as some of the meds or procedures are expensive. I've read botox is an option but that's expensive therefore I won't be offered it. So they will try various medications and keep switching just so to avoid procedures that you've been offered. I've heard quite often from consultants that nerve blocks don't work or botox doesn't work so basically you get so fed up that you give up in the end. That's my experience of dealing with doctors and pain consultants for the last 3 years. Whearas in the states it's a lot better. I've seen it with my own eyes. So I'm sure you'll get better. And I have to pray to God real hard to get better.

Hecate930
Hecate930
in reply to Entela15

Oh my god! How terrible! I am so sorry. I can’t imagine how frustrating that is!! I can’t say anything to make this matter any better. I’m sure you’ve heard this multiple times, but just keep trying. Although, that seems almost impossible with your health care system. Much love 💕

Oh wow! You're the first person I know that has Occipital Neuralgia!!! I was diagnosed with that a few years ago, but was told nothing could be done about it other than corticosteroids which didn't really help it much. Keep me posted on how the nerve block goes.

Hecate930
Hecate930
in reply to LilAnnie5

It’s so nice knowing there are others out there going through the same thing! I’m sorry about your situation. I will definitely keep you updated (:

save your money the nerve blocks wont help go see a chiropractor

Hecate930
Hecate930
in reply to brian502

Well, due to my insurance, it is free. Also, I have talked to some that is has worked. Some it has not. But in order to get this other procedure done, I will have need the nerve blocks.

I have been to a chiropractor, unfortunately with no luck.

What about botox? Is that an option?

Hecate930
Hecate930
in reply to Entela15

For me? Yes, Botox is an option. He offered it to me, but from most people I know who have gotten it, the rebound headaches from them were much worse. I’ve heard amazing success stories, as well as stories like the ones from people I know.

It’s kind of like the nerve block shot theme. Some people it works amazingly for, and others, it doesn’t work at all. But at least with the nerve block shots, I have nothing to lose compared to the Botox, I could be in even more pain than before. If that makes sense.

I'm happy u have gotten an answer the meds the dr prescriped is that generic , wishing u good luck on your nerve block shots

Hecate930
Hecate930
in reply to Phyl1030

Thank you! It’s such a relief (: as far as the Nortriptyline goes, I don’t believe it’s a generic. But is similar to amitriptyline. And thank you!

GR8 that you are getting your nerve blocks so quickly. I was diagnosed the same and have been waiting from Dec2018. They have bumped me back time and time again.

I will get my pain randomly which ranges from feeling punched in eye, pressure from behind eye, eyebrow or/and down side face being cut open. Sharp needle pains. Classic migraine, then (hard to explain without sounding stupid so I'll keep it short) migraine outside the skull. If you get it, you'd know. My pain is daily, for hours or just minutes here and there all day.

Anyway, when you get your blocks I would be interested to know more about the results if you felt OK with sharing that.

Hecate930
Hecate930
in reply to Darob311

I’m sorry about all the pain!! It’s NOT a good time.

No I totally understand what you mean by “migraine outside the skull”...well... at least I think. Like even touching your head hurts. Like someone took a bat to it, so it’s super tender! Is that what your saying?? If so, I GET IT!!

And of course I will share the results!

Right on. Good luck.

Thank you so much!

Hello Hectare, hope things are going well for you. I see that your thread has somewhat gone off topic now 🤔 let's try to get it back lol. I was hoping to be cheeky and ask you about the injection you had. I've been diagnosed with chronic migraines too after years. Mine seen to be different from yours in that they appear to be the cause of my facial and dental pain. However, at Kings College Hospital in London I have been seeing a variety of people via the dental part which includes a Headache specialist dept. I have been offered an injection which is out into the back of my scalp. Being an extreme baby I'm rather terrified about this. I have a lot done to me over the years and I've become frightened of painful procedures. May I ask if you don't mind, was it painful to have the injection. I was told also that they last for several months but everyone's experience is different with the success. I hope you are finding it does help you.

Haha yes posts tend to do that sometimes 😊

So as for the injection, it is a nerve block that will go into the back of my head, close to base of the neck. I get this done on the 19th this month! As for pain, my Pain Specialist has said that they numb the area first, and also in the shots there are numbing agents in the shots. And I can’t remember if he said for either the shots or this other procedure after the shot, that I can be put under with anesthesia.

So they do numb you!!! That’s great they offered you something!! I would ask a few questions like if they numb the area, and things like that!

💕💕 hope you find relief soon too!

Hi Hecate. Thanks for replying. I shall be watching to see how you get on. At Kings I wasn't offered to be numbed first 🤔 but it sounds very much the same thing. It's definitely interesting I've just got the hurdle of "abject fear" to get over 😱😁 I'm afraid I'm possible a bit of a baby lol

But definitely I would be really interested to know how you get on. Is it in the UK that your being treated?

All the best Colleen 😊

Oh trust me! I get it! When I go to even get a migraine shot or blood drawn, I get very dizzy. I cannot look at the needles. I have to close my eyes. I have no idea how big this needle will be, and I don’t plan on knowing!! 😂😂 so I will be asking him to keep out of sight til my eyes are closed.

I’m in the states. (:

I will definitely keep you updated!

Have a wonderful day Colleen 💕

Hey you too. Hope you and your loved ones are safe and well in the USA. Yes needles are scary things 😱. I will be always grateful for you being my guinea pig 🐹. Be safe, be pain free. All the best from (at the moment) sunny UK 💖💖

I just wanted to share this with all of you!!

’ve found this device, and it is absolutely AMAZING!!! I couldn’t be more in love. You will need AA batteries for this device.

amazon.com/gp/aw/d/B081PMRZ...

Also, make sure you buy extra gel for this! It only comes with 2 little containers of gel, and you will be going through a lot of it. Especially while figuring out how to use it properly. Here is a link to the gel that I bought.

amazon.com/gp/aw/d/B00AMGV0...

What is it Hecate? 😊

Hey everyone 👋

Just updating you guys who wanted an update. I got the injections a few days ago, and my neck feels great! No pain. I do also have chronic migraines tho as well, as I’ve been experiencing it now for about a week. It’s still here. Tonight is when I start 40mg of nortriptyline, but, I don’t see the nortriptyline helping for my migraines.

But again, my neck feels amazing!

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