Phantom Pain

I am a bit frustrated today. For about 5 months now, I have been experiencing mild to sometimes severe pain in the lower back of my head, both sides, all the way across really. It creates tension in my upper neck too. It hurts my head/neck to turn my head too far in either direction. I have seen my doctor but she doesn’t really know what it is, especially since the pain is on both sides. She suggested possibly Occipital Neuralgia (nerve pain) and prescribed me medication to see if it would help, although from what I have read it is rare for that to affect both sides at the same time. The medication made it a little better for a while but now it is getting bad again. I see my doctor again in a couple weeks and she will refer me to a neurologist.

I hate going through this. I am a severe migraine sufferer, so I have been through all the tests and MRI’s before, many times over which have never found anything wrong, other than that I have some nerves that are mixed up (happened in-utero) in the part of my brain that affects personality and the sense. That actually helped make a lot of since about how I am, to me anyway.

Anyway, my doctor didn’t order any MRI’s or anything, mostly because the pain is on both sides. Alcohol affects it and makes it worse but she has never heard of that. According to her, my lymph nodes were not inflamed or enlarged. I know what migraines and tension headaches feel like and this is not that. Not to mention that this has been nonstop for 5 months so far, with varying degrees of pain and discomfort. My husband had thought that maybe is was from emotional stress that led up to the wedding, but the wedding is over now; I have released a ton of stress and emotional pain – and yet the back of head pain persists and seems to be getting worse.

So here is my fear – I see the neurologist, get the tests and they won’t be able to say what is wrong. I am afraid that this is just how I will be now for the rest of my life, in physical pain. It affects a lot of my waking day. I have done a lot of research online and everything seems to usually be related to pain on only one side. I don’t want to keep taking these pills for neuralgia if that’s not even what it is – I hate taking pills. I guess I will just have to wait, explain it all to the neurologist and see what he wants to do. Just so frustrating…

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16 thoughts on “Phantom Pain

  1. You might want to discuss this with a specialist who deals with migraines. I have a family member who is an MD and worked with a research study at the University of Maryland. They found that the pain spreading across the neck can persist in someone who migraines even after the headache has ended. Women are 3 to 4 times more likely to suffer from them and risks increase if you hormone levels are out of balance. My wife encountered problems when she had a bad reaction to birth control. I’m not a medical expert but they may want to check your hormone levels and do some blood work. That and its far cheaper than an MRI etc…Hope you get to feeling better soon.

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    1. Thank you. I have worked with someone on my migraines for the last two decades. This is something new, something very different. I actually just learned of something called New Daily Persistent Headache. It actually is the closest thing I have come across to match what I am going through. I will be asking the neurologist about it once I receive my referral.

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  2. Sorry you are feeling such pain. I can relate as my back and shoulders are in pain everyday and like you I do not like to take medications. I hope you find the cause and find some relieve in your pain. Take care!

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  3. I’m sorry you’re experiencing this. Have you tried a chiropractor? A misalignment in the vertebrae can put pressure on the spinal nerves that can cause all sort of problems. Medical dr’s don’t look for these minor misalignments.

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    1. I actually did, 6 visits and it made it worse. After I stopped going, I found out that neck adjustments, if done at all wrong, can cause stroke. It’s not worth the risk to me. But I do appreciate your input.

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  4. Just a thought, could it be stress related? I developed an unexplained cough that the doctors couldn’t diagnose. Once I was on depression meds and anxiety meds it went away. Seems it was a stress cough. Stress does weird things to our body, maybe something to think about? Does the pain increase when you’re stressed?

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