Posted , 6 users are following.


ive had AS for about 15 years since i was 17.

just wondering if anyone else has ever suffered severe headaches and stiff neck?

i struggle to move my neck and whenever i lift something heavy i get a throbbing head and dizziness.

also has anyone ever heard of cauda equina syndrome link with AS and how common it is? and if theres a way of preventing it from ever occuring?

i never medicate as i cant stand the side effects.

0 likes, 6 replies

Report / Delete

6 Replies

  • Posted

    I'm sorry to hear that. I know how bad headaches can be. I have suffered from different types, including migraines .

    But, back to AS. Do you exercise regularly? There are exercises you should do to both strengthen and relax your upper and lower back and neck.

    It works, but you need to be patient and consistent.

    Of course, if you haven't done so already, check with your doctor if there is anything that you shouldn't do.

    I saw a very good doctor just the other day and he kept insisting on the importance of exercising and weight control (I gained some weight and it really does make everything worse 😦 ). He made me promise I will lose these 15 lbs I gained, since, as he says weight is any AS patient's worst enemy.

    I've watched some Youtube videos looking for AS exercises and I found the channel of "Famous" Physical Therapists Bob Schrupp and Brad Heineck. They insist on taking care of your neck area and offer advice on how to do it. I sleep with too many pillows. They strongly advise against it.

    The dizziness you mention could be a consequence of the neck vertebrae and disks tear and wear., which influences how receptors communicate with the brain creating sensory dysfunctions, including dizziness.

    Have you tried turmeric and pepper (you can buy it as supplements) to lessen the inflammation?

    Hope this helps!

    Report / Delete Reply
  • Posted

    I have had extreme neck pain from ankylosing spondylitis since 2013 it is so bad I cannot drive when I have the symptoms because using my arms is extremely painful I cannot lift anything I cannot move it is the worst pain out of all of my pains I also suffer from extremely stiff neck it’s so bad that I can’t even put my head on the pillow in certain positions because my neck just does not move like that The best thing I have found is a procedure called a cervical rhizotomy which takes away about 90% of my pain combined with Cymbalta. I have to redo

    The procedure every half a year to year but I hope that helps you it is been life-changing for me I’ve done so many different types of shots and injections in this and that nothing helps but the rise out of The procedure every half a year to year but I hope that helps you it is been life-changing for me I’ve done so many different types of shots and injections in this and that nothing helps but the rhizotomy

    best wishes

    Report / Delete Reply
  • Posted

    hello sorry to hear about neck stiffness i have sniff neck thats from ankylosingspondolitus the head aches im not sure of i had few i took 81 mg baby asprin but see dr im might be something more headaches are nothing to take litely

    Report / Delete Reply
  • Posted

    i got diagnoste with anklylosingspondalitus witch also nick named bamboo syndrome there is no cure yet i in 2014 it sucks i had stop driving witch i like to do

    Report / Delete Reply
  • Posted

    Hi. Arthritis in the neck is a very common feature of ankylosing spondylitis. One or more neck joints have acute arthritis which cause pain and stiffness. The associated muscle spasm may be driving the headaches with some dizziness. I suggest you see a physiotherapist who can reduce the muscle spasm and teach you neck care. Some tips: sleep flat and use a feather pillow; get a comfortable chair with a high back you can rest your head against; avoid a lot of travel and use a comfortable seat. When you bend over you automatically look up and this tends to cause pain: try doing it differently or avoid it. Lifting something heavy pulls on those tight muscles. So limit the weight, hold it close to you (up against your chest) and try to use your legs to do the lifting And use anti- inflammatories plus paracetamol. Deep heat rub helps to reduce the muscle spasm.

    From Liz: what I have learned over 40 years with ankylosing spondylitis in my neck.

    Report / Delete Reply
  • Edited

    Hi I feel your pain, literally. I have suffered the same problem with stiff neck, severe headaches, dizziness, brain fog and the like since I was a teenager and I'm 56 now. I actually just joined this forum this morning because have not slept all night due to neck pain & headache. It is also my most troublesome of all the AS symptoms & bothers me every day. On a flare up right now so worse. Combined with Covid inflammation in Jan, had almost unbearable pain at one point. Some things that have helped me area pillow, which can be scrunched around to align your neck where it is most comfortable for sleeping, avoid tasks where you have to look up or down for extended periods or sit/stand whatever it takes to face straight ahead. I never wear bifocals as they make you tilt your head up. Searched until I found a massage therapist that is great with necks to relax & stretch neck muscles. Warm baths, heating pads the wrap the neck. Stretches and strenthening exercises learned at physical therapy. Pressure applied to certain points at the base of the skull;you can do this yourself, just feel until you find the spots that brings relief. Neck traction devices can be found on Amazon But I actually find relief lying in bed (on my side) by placing my fist under chin and push head up and back a little. It relieves pressure and pain I feel almost always at base of the skull. It usually helps to lay flat on my back with no pillow at times Also try to eat an anti-inflammatory diet as best I can. I have tried so many doctors over the years and nothing but medicine is offered, and I also don't like to take meds. They usually just make my already fogged brain worse . If anyone else has some more advice, I too would LOVE to hear it. Hoping this community can help me too.

    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up