Back in May I had horrible headaches and extreme spasticity in my shoulders and neck. After a week I went to instant care. Dr said I most likely had an MS flare causing the bad spasticity and that was causing tension headaches. He put me on a six day taper of prednisone and some acetaminophen with caffeine. Helped a ton. After about two weeks it was completely resolved.
That lasted about three weeks. Now it’s back with a vengeance. Went to instant care again this week. Actually saw the same Dr. He still calls it tension headaches. Refilled the prescription acetaminophen but not the steroids. This time I’m just getting worse.
At this point I think it’s occipital neuralgia. Most of the pain is on the right side only. I’ve been dealing with pain in my right ear for about six years too.
Now I’m debating going to the ER for help or trying to wait it out. Conveniently I’m scheduled for a mri on Monday so maybe something will turn up then. But I’m not sure they will look for occipital neuralgia if they don’t have a heads up,
Research says heating pads help so I’m trying that. I just need to pain to stop.
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StacyHayward
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Stacy, I'm so sorry this is happening to you! I get extreme spasticity in my neck, shoulders, and even the back of my head. I've been struggling with it for years, and it keeps slowly getting worse. You may need treatment for a relapse.
It's pretty hard to get a heating pad to conform well to your neck. I really like to use this, although I'm wearing out my microwave reheating it all the time:
You might need baclofen for the tight muscles. I usually need at least 10 mg to make a difference. It makes me drowsy, unfortunately, so I do always have to consider that, especially in the morning. Do I want to be fuzzy and have pain relief, or do I want to function well? If you can't get baclofen right away, oral CDB helps. I've gotten some great deals online from Bluebird Botanicals. If you are on disability and send them proof, they will give you your own discount code that's good for a couple of years. You can sometimes find good promo codes here if you're interested.
A good topical pain cream also helps. A strong CBD cream is helpful, but if you're new to CDB you have to start slow, especially if you are trying oral CBD as well. Also it's pretty expensive. Some people have good luck with IcyHot or lidocaine cream. Just be careful with the heat if you numb yourself up with pain cream so you don't get burns.
I would recommend seeing a pain specialist. I get nerve blocks, both for the neck in general, which isn't horrible but is better with sedation, and occipital nerve blocks, which is just a few quick injections in the lower part of the back of your head. I round out my plan with Botox injections every three months. My insurance covers it if my doctor calls it cervical dystonia. I basically have to poke around with my fingers trying to find the really painful "trigger points" and mark them with a Sharpie (except for those on the back of my head under my hair, in which case I have to try to remember to tell the doctor where they are). Then my doctor gives me injections in those places.
None of these things, by themselves, fixes me. But all of them combined help make it easier to live with. I hope some of this helps you! Good luck. 🩵
And you're still having this much pain? Holy crap, I'm sorry to hear that. That is a lot of baclofen. I don't know how you stay upright!
I have a baclofen pump, which works great for my legs, but doesn't do anything for the head or neck because of gravity, and fewer receptors in the upper spine.
Baclofen doesn’t seem to bother me. Gabapentin though…whew! I can handle exactly 400mg. Anything more than that my blood pressure skyrockets and I nearly pass out.
I'm sorry gabapentin causes you such serious problems. But I'm happy for you that you can tolerate baclofen so well. I have trouble tolerating many meds, and I'm taking a lot of them. The worst is a mood stabilizer that could almost be considered a home lobotomy kit, it affects my brain function so much. But if I don't take it, I get so angry I feel like I'm losing my mind. I wasn't sure if it's from MS for a long time, but I tend to think it is because MS affects our brains so much. I'd hate to think that there was more going wrong up there than the MS! I hope you can get some help with your headache/neck muscle situation.
Thank you. Yeah, the medication is bad, but feeling angry and out of control is worse. I'm hoping that maybe my body will adjust to it over time. That would be great.
My daughter suffers bouts of occipital neuralgia. So far, no one has known what to do to help her. I hope you get some answers and some relief quickly.
Has she tried occipital nerve blocks from a pain specialist? They are helpful for me. Just a few quick injections in the lower part of the back of the head.
have you been to an ear nose and throat doctor? I did not have the same complete situation you are dealing with however pain in my ear for long time ended up being TMJ. My regular Doctor nor going to emergency a few times did not lead to answer for my ear pain. I was repeatedly told that my ears were fine.
Hello my new friend! Sorry you are going through this, you are not alone! I’m scheduled to have a MRI on August 3rd and also have inner ear pain? My Primary Doctor checked my ear and said they looked fine? I think I read that you said you were seen by the same doctor; but is he a Neurologist and one who specializes treating MS? Makes a of difference! Please keep us updated and hope you continue to feel better! Blessings. NeeC
I did Nurtec till it got too expensive, but it did work. I started doing Botox injections in my head about a year ago and they do it every three months. It has worked great 👍🏼 and very few headaches and not nearly as bad. Has been working great for me 👍🏼🙏🤪😉
I stay behind on this site. How are you feeling, Stacy? I hope & pray you are better. Did the MRI show anything?Sorry, but I have a poor attitude about these doctors who just throw an Rx at symptoms, & move on to the next patient. 'Scuse my bad attitude. I do hope you feel better.
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