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Constant headache/severe neck pain/ made much worse by stretching

KatiepecbvdaKKatiepecbvda Posts: 6
edited 11/28/2014 - 5:09 PM in Neck Pain: Cervical
So I'm in so much pain and doctors can't figure it out. I've had neck and headache problems for a long long time but I've literally had a headache nonstop for 4 months now that hasn't gone away even though the neck pain usually isn't too bad in the morning and progresses through the day depending how much I do. I always read that you should do stretches on your neck to help it feel better, but when I do I pretty much want to die for the next 24 hours. And it's not that I'm over stretching or doing it wrong. I've been to massage therapists and PT people before. I'm doing it right. Oh and it's weird but before or soon after my neck starts hurting it heats up a lot. Like it is radiating heat from it. Even sometimes before it starts hurting, when my neck gets hot I know I'm about to have neck pain and a head ache

I just had MRIs of my brain and neck. They said nothing remarkable except sinus blockage that could be causing the headaches but Ive had sinus headaches and they aren't this severe. I am only 27 but my upper back and neck are curved into a hump. Even if I stand up straight I can't have good posture because my spine is in that hump, but the vertebrae are still all spaced fine is what the radiologist said. I did PT several years ago when I was having severe headaches and neck pain (but never a constant 4 month headache) and the therapist basically told me it was unfixable. If I just did all those exercises and focused on my posture every day forever I could keep it from getting worse.

Then 4 years ago I went to a neurologist who said my headaches are migraines (I don't know if I agree) so he put me on Elavil (amitripltillin) to prevent headaches which helped significantly. And I also have a history of passing out which ended up being deemed a heart issue so I got put on Propanolol, which also happens to help prevent migraines and that helped significantly too. It seems my neck pain and headaches are connected. if one hurts, the other hurts...So the last 4 years my neck and head pain were manageable and didn't get really bad again til recently. And I have increased my dosage of both of those meds. And the dr even prescribed Topamax as well 3 months ago when I was dying in pain. Over the years, I have tried Yoga, massage, chiropractor, acupuncture, inversion table, essential oils, nutritional things, chiropractors, PT, stretching, posture and neck exercises, nerve block injections, TMJ surgery, hot/cold therapy, and probably some other random things I can't think of right now


  • LizLiz Posts: 7,832
    edited 11/26/2014 - 8:58 PM

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • KatiepecbvdaKKatiepecbvda Posts: 6
    edited 11/28/2014 - 4:04 PM
    Thank you for the welcome. Any advice anyone? Please help. I am trying to move to the Philippines in a few months to start an education program for homeless and poor kids, and the medical system there is not very good, so I am trying to fix my pain soon. I can't get into the neurologist til Dec 8 and the Upper Cervical Chiropricator for about a week I think.
  • Ok thanx. I looked at the articles. I have never had an EMG done. Is that only for back pain, or do you think that could possibly show the problem in my neck?

    I recently got back from spending 3 months volunteering in the Philippines, and then a couple months later this nonstop 4 month headache started so I was sure that this headache was caused by Encephilitis caused by a bug bite of some sort because that causes neck pain too (esp after I got really sick there and tested positive for some virus that can cause Encephilitis but apparently a lot of people get it but it stays dormant), but I'm pretty sure the MRI would have showed if my brain was inflamed.
  • rtconant1rrtconant1 Posts: 348
    edited 12/03/2014 - 2:35 PM
    I had ACDF surgery in September and October I had the worst headaches ever! It sounds like what you were going through with your headaches. They made my jaw, ear, sinuses, the whole left side of my head, the back of my head and my neck just pound. It also made me sensitive to light and sound. I talked with my neuro surgeon and they adjusted my gabapentin dose and told me to make sure I was taking the muscle relaxer religiously. They also prescribed an oral steroid but that didn't really help. When I talked to my physical therapist, we looked at a diagram that was on the wall of the physical therapy room and he narrowed it down to the suboccipital nerves at the C2/C3 area. He then felt the area in question in my neck and noticed that it was tender and swollen. He tried a procedure called dry needling that I think is similar to acupuncture but I am not sure since I have never had it before. He stuck the needle in the area which seemed to "release:" the nerves and then massaged them. It took about a week but I started getting relief little by little. I notice I start getting them again though when my neck is irritated.
    I don't know if my story helps you at all. I feel for you for what you are going through. I hope you get relief soon. I wonder if you need to find another doctor for a second opinion.
    Tracie C
  • I'm starting the whole physical therapy thing again. I just tried the chiropractor again 3 times a week for a few weeks and it didn't help at all. My neurologist currently has me not taking any of my over the counter meds or Norco that I take for the headaches and neck pain for 1 month. He prescribed other medications I had never heard of for that time. He thinks my body might have gotten so used to Excedrin that it was causing the headaches so I'm doing the 30 days to humor him. The neurologist's next step is the Botox injections since I've basically taken almost every migraine med, done massage, Chiro, acupuncture, PT, everything.

    I do have a weird question. I know when things get inflamed they get warmer. But my neck gets super hot every day before it starts hurting, like I can feel the heat radiating off of it. Is that common for neck pain?
  • Pamela9PPamela9 WashingtonPosts: 42
    You could probably cook eggs on my neck! It gets hotter with the 4 hours of wearing the Bone Growth Stimulator, and then like you, it hurts. Sometimes the discomfort from the heat is worse than the neck pain, but ICE< ICE<ICE. I also use Bio Freeze spray.
  • I'm sorry I hat happens to you. My question here is moreso whether it is normal for people with chronic neck pain to have it get really really hot before and when it hurts. And if not, What could be the reason for it
  • WxguruWxguru Posts: 14
    edited 12/31/2014 - 11:22 AM
    It sounds like you have what I have....Occipital Neuralgia....look it up if you haven't heard of it. Praying you get some relief soon.

    Nobody on the forum is medically qualified or permitted to make a diagnosis this is just an opinion and you should be discussing it with a medical professional.

    Spine-health moderator
  • That sounds exactly like what I have. The neurologist I had a few yes ago gave me neurontin and elavil. I stopped the neurontin. Then he tried the nerve blocks in the occipital nerves and all over my head and it took away all the pain for like 3 days. It was amazing. It just didn't last very long

    My new neurologist seems like he tells everyone they have migraines. But I think it's so much more than that. I'm in so much pain right now I can't stand it. I switched health insuramce so hopefully the new one covers the Botox injections in my head cuz that's the next thing I want to try

    What do you do to treat your Occipital Neuralgia? All of the at-home treatments I do but the relief almost 0.
  • WxguruWxguru Posts: 14
    edited 01/08/2015 - 8:32 AM
    I am currently in physical therapy and something that has really worked wonders for me...that was recommended by the head therapist was an Occipivot. It is a little deal you lay your head in and it has bumps like fingers...and you can put your sensitive pressure points in the occipital region on it and while it may hurt for a time...over the long run it does help relieve some of the pain. Best yet...only $335 on Amazon. It also gets great reviews.
    Not saying this Def will work for you but it has for me. I also use heat and do some muscle bbuilding exercises in therapy to help strengthen that area.
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