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Life long migraines - change with age & new diagnosis w/ cervical stenosis

Hello all, I'm new to these forums.

I got my first migraine when I was in 6th grade. It was horrible. From then on I'd get migraines with awful aura / scintillating scotoma, numbness in my face and hands. Then when my vision would clear the awful headache would come. I never had nausea (never vomiting) with the exception of just having stomach irritation from taking medications (which was always relieved by eating). Noise and light always bothered me in the early years. They would start, follow a predicable process and in 24 - 36 hours I'd be fine. I'd have them about twice a month unless I had some kind of crazy stress going on (lack of sleep etc).

I traced it back to fall off a horse onto my head/neck and never having any kind of rehab therapy, since from that day on my neck always hurt and I started a cycle of self adjusting, which at some point also included a constant nagging feeling in my left SI joint.

I also had chronic non-migraine episode headaches, and to this day it is easier for me to count the days in a month when I don't have a low to moderate headache (base of the back of my skull thru my eyeballs, like someone is squeezing my eyeballs and hit the base of my neck with a baseball bat).

Over my later teens and 20's I had ct scans, I saw a DO that would do mild spinal adjustments. I kept a food diary, and did bio-feedback therapy. Most all of those practices fell by the wayside as I wasn't getting any return in control or pain relief.

Then as the years went by I had a few prescriptions, the two I remember were Maxalt and Imitrex. I also saw a chiropractor on and off. Both when I had the money / insurance.

Then in my mid 30's my migraines began to change. No more numbness of face and hands, no more smell sensitivity. I'd get the pre-headache visual fireworks show but then when that would clear I'd have an almost intoxicated feeling (not a fun one) where I feel'ditsy', have what I would describe tunnel vision with a change in my vision (higher contrast, everything bright).

Lately I've been having an increase in the migraine activity, not an increase in pain, but I'll have multiple episodes of the visual crap. I've also had non-stop (the classic 'crick in the neck' type) pain either down my neck and / or into my shoulder blade area. I do get relief with a TENS unit. It gets better but it's been there for over a year now. I've had a non stop bad headache for over 4-5 days now with no relief taking high doses of NSAIDS. Sometimes the only way I can get a full nights sleep is with a TENS on, or else my neck or my left SI joint wake me up multiple times a night.

I finally went to the doctor last week who sent me for xrays and their office called me back saying I had arthritis in my neck with cervical stenosis, and they are getting me into see a neurosurgeon.

So... I'm here. My husband is deployed right now and I'm just seeking the comfort of others who are going through this.

My mother, who is an RN, suggested I get seen by the neuro and an osteo.

From what I've been told my father had bad headaches. Unfortunately I seem to have passed on the migraines to my youngest son (who also has neck issues). My oldest son has escaped this fate.

  1. Hi KatieH,

    Thanks for sharing your story with us - Welcome!!

    I'm sorry you've had such a rough go of it, let me see what information I can give you that may help.

    First let me say when we have new and/or different symptoms, it's important to discuss them with our doctor to rule out anything more serious. If you haven't had a chance to speak with him, please contact him.

    Migraine is thought to be a genetic neurological condition that when our overly sensitive brains encounter certain stimuli (or triggers) an attack may occur. You mentioned keeping a food diary, I wonder if you've kept a detailed migraine diary for at least three months? This can help us identify our triggers and any patterns our attacks may have. If we can learn what our triggers are and avoid the ones we can, we may be able to reduce our migraine frequency and severity. Here is information on migraine diary's;

    Neck pain can complete our diagnosis because neck pain can be a symptom of an attack and is actually more common that nausea. This article has more information for you;

    Neurologists may be fine doctors but have difficult time being experts in one area because they treat so many different conditions like multiple sclerosis, stroke, epilepsy, Parkinson's and others. Migraine/headache disorder specialists are just that, experts in one area - migraine and headache - are have extra board certification in headache medicine (which is different than being certified in neurology) whereas all neurologists do not. Here is information on how migraine specialists are different and how to find one; and

    I hope this helps,

    1. Hi KatieH,

      Ugh I'm so sorry to hear you are suffering so much. I really relate to your experience and I hope I can offer some support.

      I went through something similar in terms of my migraines "changing" and found it very frustrating to get doctors to listen to me. I experienced my first migraine with aura at age 6 and suffered from them off and on throughout my life (I' now 41). Eight years ago, though, they changed. I was experiencing a new type of headache that was NOT a migraine - but the neurologists at the Headache Center didn't seem to listen to me. The pain would start in my right shoulder blade, progress up my neck, over the back of my head and through my eye. It was the worst pain I'd ever experienced - completely debilitated for 3 days and vomiting the entire time. Then it would spontaneously resolve itself.

      After seeing literally dozens of different specialists and taking 20 different types of prescriptions, I finally had a cervical fusion (C5-C6) for a herniated disk and stenosis, thinking it would solve my headaches. Unfortunately, it didn't (fortunately, I didn't have any complications with surgery).

      I finally started doing my own research and found out that I wasn't suffering from migraines at all. I was suffering from cervicogenic headaches - a very, very different condition where the problem is actually in the spine and surrounding muscles - the headache is actually just a side effect. For me, the cause is poor posture (sticking my neck forward like a "spectator" watching a sport," sitting at a desk all day hunched over, and arthritis in my neck below C6 is to blame. And the reason for the nausea? Well, turns out that the muscles were spasming in my neck directly near the occipital lobe area, which is near the area in the brain that regulates nausea/vomiting. The reason they would spontaneously resolve is because the muscles would finally become fatigued from spasming (which is what a TENS unit does to them).

      What has really helped for me is intensive physical therapy (with a much more powerful TENS unit), massage therapy, posture exercises, and chiropractic adjustments. I was also given Dihydroergotamine Mescalyte HCL injections as an abortive treatment (awful drug, but man it works!). I went from 4-6 headaches a month (each lasting 3 days) to about one a month now.

      I really hope you can find some relief. Please be sure to ask the surgeon if he thinks the stenosis is the cause of these headaches - they may not be. I would encourage you to see a physical therapist before having surgery - although if you do have the surgery you will still have to go afterward. Neck surgery is a serious recovery time - I was on disability for over 2 1/2 months. For the fusion, they took bone from my hip, which was incredibly painful.

      1. I hate migraines.

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