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Cervicogenic headache one year and counting...

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Posted 8/19/2016 5:02 PM (GMT 0)
Hi all,

Apologies if this isn't in the right place. I'm looking for some similar stories as I'm feeling at a bit of a loss.

about a year ago at age 28 I had a pounding headache immediately after a HIIT workout – symptoms have been a tension type headache, neck and shoulder pain, stiffness, head rushes when I bend over, sit in weird positions or even walk quickly. I've had MRIs on my head and nothing was found. NSAIDs don't really help. Eyes, ears, blood pressure all tested. All normal. etc. etc. etc.

I've seen a physio, a chiropractor and now an osteopath. All have had some success but before long the headaches, the stiffness and disorientation come flooding back. Similarly whenever I feel better and try light exercise: straight back to the symptoms.

I had a myofascial release for the first time today (my physio always warned against it) and I feel like garbage... This is impairing my life and work on a daily basis and I'm in utter despair at the thought that I'm never going to get better.

As it's coming up on a year next week I'm wondering if anyone has gone through these symptoms for this long and come out of the other side?

Thanks in advance,

Paul
Posted 8/19/2016 6:28 PM (GMT 0)
Hello Paul & welcome to Healing Well. I had the very same thing you have going on & the only relief from the headaches was occipital nerve blocks. I was under the care of a pain mgt dr & still am for that matter. I tried everything possible & nothing helped until I went under the care of a PM specialist. You need to think about this, handling pain is their specialty & they know what treatments work as a rule.

I am afraid continuing along the line of care you are getting now is just spinning your wheels. Been there & done that.

We have a migraine forum & you may want to post over there to see what kind of feedback you get there. Please keep us posted on how you are doing. Take care.
Posted 8/19/2016 7:24 PM (GMT 0)
Hi Susie,

I'm a little disappointed – I was hoping for a story of a miracle cure! In all seriousness though it's good to know that people have been through this before and that there is at least some relief. I'd never even heard of occipital nerve blocks, so thank you for that. I'll need to look into that.

Thanks for your advice and your experience. It's much appreciated. I'll keep you posted.

Of course, if anyone else has any experience of this I'd love to hear what you've been through and tried. For peace of mind if nothing else.

P
Posted 8/19/2016 8:18 PM (GMT 0)
Hi Paul,

I too have experienced the same headaches. After a c spine MRI I learned I have problems in my upper c spine. I had c spine fusion surgery. It helped, no cure though.

I am also in PM which has helped immensely.

I agree with Susie, the treatments you are pursuing will most likely only
be felt in your pocketbook & not pleasantly.

Karen
Posted 8/20/2016 9:58 AM (GMT 0)
Hi Karen,

Thanks so much for getting back to me. I have an appointment with a new doctor on Monday so I will go begging for a neck scan. PM sounds like something I need to explore too, so hopefully this new doctor is one of the good ones. The number of times I've been waved off and told to eat less yeast or drink more water...

P
Posted 8/21/2016 3:27 AM (GMT 0)
Hi Paul and Welcome to HealingWell Chronic Pain Forum. You know about six or seven years ago I was having a really bad problem with headaches at the base of my skull going up the back of my head and down the back of my neck. I got injections from my PM but it only gave me temporary relief. I end up having a fusion done and rods and pins put in, the articular joints in the back of my cervical spine were shot, and nerves being impinged upon. The surgery was a real bear and there was a long healing and recovery time! But in the end it was well worth it, as it totally relieved the pain and I haven't had a problem with that type of pain since then! Some times it helps to have a good PM that will work with you to get to the bottom of what is causing the pain and then finding a good physician or surgeon that will fix it. My PM actually thought it was a disc problem, but the neurosurgeon I had said it wasn't the disc but the bones and the joints in the back of the spine that was causing all the problems. Anyway he fixed it by fusing C3/4 on both sides and putting in rods and pins to hold it together. I had 47 staples down the center of the back of my neck and as I mentioned the healing and recuperation time was long and painful but well worth it in the end!

Anyway I can empathize with you! I have had three fusions done at different times in my cervical spine and I know well what it is like to have pain and problems like your experiencing!
Please keep us posted on your condition and hopefully progress! When your here on this forum you are part of our Healing Well family!

Good Luck to you!

White Beard
Posted 8/21/2016 3:37 AM (GMT 0)
me just had ct scan on cervical spine. cephelagia and brachyalgia as well, for many years. I have sublaxed shoulders and arthritis in my neck, old probs, but are now compounding elements. brittle bone disease in my family. await ya results we must. keep strong.
Posted 8/21/2016 11:04 AM (GMT 0)
Have you seen a neurologists that specializes in headaches or migraines?
Did you get a contrast MRI? Have you had a complete bloodwork count done?
Seond thing and not to scare you, have you seen a cardiologists, even if your bp is okay a sudden on set headache could be heart related and a echocardiogram might be worth it, if the headache is worse in the evenings then it could be heart related, look at family history.
Start a journal of when your headache is worse, if you wake up in the morning with the headache make note of that in the journal...
Headaches can have many causes and you need to explore it more.
I get migraines and I'm doing the botox for migraines...
Stay strong you need to keep pushing for answers...
Posted 8/21/2016 9:31 PM (GMT 0)
Hi everyone. Whitebeard, that's really interesting. It sounds like a neck scan and maybe seeing a PM are my next steps. Surgery isn't ideal but... if there's any chance of anything approaching recovery...

Chartreux: I've had a couple of ECGs and nothing out of the ordinary was found. Bloodwork revealed I was a little low on Vitamin D but other than that, nothing. At any rate, I have my GP appointment tomorrow, so will push for all of these things and see what they find.

Happy Turtle, and everyone, thanks for words of encouragement. I was really despairing the day I signed up to this forum. You've all been a real help and I'm finally coming away with some hope that it gets better.
Posted 8/22/2016 4:23 PM (GMT 0)
So after an emotional meeting with my doctor, I'm going in for an x-ray of my neck. I shouldn't be hoping to find something but the alternative is looking at anxiety and stress and the thought of more of this is not a joyous one.

Thanks again for all your help. I'll keep you informed.

P
Posted 8/22/2016 4:49 PM (GMT 0)
Thats great Paul, some progress but you need an MRI too.
Posted 8/22/2016 5:03 PM (GMT 0)
My doctor basically said I didn't need one. Every step of this is going to be a fight, I can feel it...

What would an MRI show that an X-ray wouldn't?
Posted 8/23/2016 2:57 AM (GMT 0)
Paul the MRI is the gold standard, an x-ray will only show the bone, an MRI will show everything the spinal cord and the nerves coming off of it, if you have any nerve impingement it would probably show up on an MRI, and doubtful that a normal x-ray will show much. x-rays are cheap MRI's are expensive! I know well the hassle that can be involved in getting proper diagnostics done and getting doctors to listen and find the real cause! The first time I had cervical disc problems I was in my early mid thirties and in the military and it took a very long time before they finally done the right test and found the cause of my problems. I was told everything from it possibly being cancer to it was just all in my head and I was malingering and was sent to a shrink! All that time I was suffering with extreme pain, and honestly thought I was dying! Really scary stuff, and being in the military you can't just go to another doctor for a second opinion, you have to see who they send you too!! When they finally did the right test (a myelogram of my spine and then immediately sent me to a civilian hospitall to get a MRI and see a neurosurgeon) they found what the real cause of my problem! I ended up having to have emergency surgery, and had a discectomy and fusion at C6/7. I was very very lucky!

So if your doctor won't listen to you and do the test needed, then I would definitely suggest try going to a different doctor for a second or even a third opinion! After all they are not the ones feeling your pain! You are! Sadly YOU have to be your own best advocate!!

Good Luck to YOU!

White Beard
Posted 8/23/2016 3:09 AM (GMT 0)
Paul, an MRI is really what you need. What dr said you didn't need one? Whoever told you that did you a great disservice. As long as this has been going on one is really needed. I would keep pressing for one.

Take care.
Posted 8/23/2016 4:27 AM (GMT 0)
I agree with Whitebeard and Straydog, they've given you good advise. Seek out a better doctor. A doctor works for you, to keep your health good. Seek out care with a better primary that you can then ask for a referral to a neurologists, see about getting a Mri done with and without contrast and see what happens next. Contrast mris show more than a regular mri and both can be done in one visit.
Low vitamin D can incresae pain levels, you need to get a pharmacy grade vitamin D supplement anything under 400 is low and some neurologists say that 500 is to low..mine was 40, really bad...
Other disease can cause low vitamin d and headaches so you primary should've sent you to a neurologists...
Posted 8/29/2016 8:12 PM (GMT 0)
Thanks everyone for clarifying and providing further information. Once again, it's been invaluable.

After another meeting with my doctor he's agreed to refer me to an orthopaedic specialist with a view to getting an MRI. As I feared, it's scraping for ground, but I'm happy to be seeing a specialist.

As ever, will keep you informed. I've had another episode today after bending over for a little too long, which has left me sitting with my head supported and cooling down. I'm desperate to get this sorted!
Posted 8/30/2016 2:25 PM (GMT 0)
I found that getting a compound cream that my doctor orders helped with that. I used to have those headaches nearly every day of the year. I also got a rhizotomy (RF) that gave several years of good relief in combination with the cream, ice & occasional use of a soft cervical collar.

Hope you find some relief. I know how unpleasant those can be when you have them day in & day out.
Posted 9/3/2016 10:19 AM (GMT 0)
That's really interesting. Thanks for that Tirzah. I'm still awaiting my referral appointment but hopefully it won't be long.

I'm curious: when those of you who saw physios, osteopaths, chiropractors etc., did treatment provide any relief at all, for the briefest time? I always found it provided some for a short while. With the physio the neck flexor exercises I had even got rid of the worst of the headaches for a while, but the second something went wrong I was straight back to the beginning, as if none of it had ever happened.

P
Posted 9/3/2016 3:24 PM (GMT 0)
We pretty much feel to stay away from a chiro until an MRI has been done. The reason is we have seen people end up in worse shape after chiro care. I have nothing against them don't get me wrong because they do have a purpose as well. But when it comes to the spine you have to be really careful.

Work on getting an MRI done.
Posted 9/3/2016 4:36 PM (GMT 0)
Thanks, but what I mean is has anyone actually experienced that treatment can seem to – seem to – help, just for things to go back to how they were in the end? I have no intention of going back to a chiropractor – I guess this has been my experience and I wanted to see if anyone had been through the same.

Thanks again.

P
Posted 9/3/2016 5:31 PM (GMT 0)
Very early into the game many, many years ago I tried chiro care & really felt worse than better.
Posted 9/4/2016 8:20 AM (GMT 0)
Interesting. I had brief relief from a chiro (that got worse again just in time for my next session), a gradual feeling better from the physio that would then be undone by something trivial and then stayed bad, and with the osteo I generally felt worse. I think that was the first time I had a myofascial release.

Anyway, thanks as ever. It's been a tough weekend of it so it's always good to hear from you.

P
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