Saturday, October 25, 2014

Sunday, May 02, 2010 LKB, Community Member, asks

Q: Does anybody know if ankylosing spondylitis can cause headaches that are severe at times? Is the tes

I have read that ankylosing can create a lot of problems  including bowel troubles, but does anybody know if it can cause headaches. I have been suffering for almost 10 years and have not found a correct diagnosis, but funny it seems that everything I feel as far as pain is very much like the ankylosing spondylitis. I have at times severe headaches. Is that a possible complication from this disease!????

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Answers (7)
Elizabeth Roberts, Health Guide
5/ 3/10 2:41pm

Hi LKB,

 

Technically, this isn't a question for this particular IBD web site. But, I looked it up here - http://www.medicinenet.com/ankylosing_spondylitis/article.htm - and don't see that headaches are a symptoms of ankylosing. This seems a stretch as a cause for your headaches but if you have any of the other specific spinial symptoms you may need to check it out with your doctor.

 

Best of luck,

Elizabeth

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LKB, Community Member
5/ 3/10 4:52pm

Thank you for the link. I am just at a complete loss and my frustration level is so high I can't even explain it. Thank you for taking the time to look for that site. 

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Elizabeth Roberts, Health Guide
5/ 3/10 5:57pm

I understand how frustrating this can be for you. My mother has had chronic, severe headaches my entire life (so 40+ years). She has seen every specialist possible and all to no avail. They can find no reason for her debilitating headaches. So, she's just had to figure out how to handle them on her own.

 

Keep being your own detective. Sometimes it's how you're going to find the answer in an odd way. It could be a food you're eating, or some environmental factor, or something physical, or, or, or.

 

If the traditional Western medicine world isn't helping don't hesitate to look at Eastern medicine. My mom finds that acupuncture helps her somewhat. And maybe even a nutritionist could be helpful, they look at things differently than traditional health providers. There has to be some one or some thing out there that can help you even just a bit, you just need to keep looking.

 

Best,

Elizabeth  

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LKB, Community Member
5/ 3/10 6:58pm

Thank you, thank you for caring and you don't even know me. I will indeed keep being my own detective. What I know thus far is this. I have arthritis in my back for sure. Don't know where else. I have idiopathic scleritis of my eyes. I have Irritable bowels. (Chronic diarrhea) I have SI joint dysfunction, I suffer from chronic head, back, shoulder, clavical, hip and thigh pain. I am going to have an MRA on my brain and an MRI on my SI joint so maybe that will show something. Who knows. I feel for your mother and I wish her the best. I hope more than anything she has found some relief and my journey will continue. One day I will find the doctor that suddenly can figure it out. I know what I have is not going away, but the frustration is that if I had an official diagnosis I could then have the best available treatment. I have had shingles and Bacterial and Viral meningitis. There just has to be a reason. Thank you and please, please tell your mother that for that many years she will be an inspiration for me to keep going......... I will also look into the accupuncture.       Thank you!

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rmac2123@hotmail.com, Community Member
10/14/10 8:42pm

My son has been diagnosed w AS.  It took 2 years for a correct diagnosis.  The headaches he had every day were the focus of headache clinics, neurologist and other specialists.  finally we saw a rheumatologist and within 10 minutes she knew it was AS.  She did tests to confirm that it was.  The headaches through off doctors for a long time.  They are caused by stiffness and problems of his upper spine.  It hurt to move his head.  We are so relieved to find out the problem and get proper treatment.  Hang in there.

 

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joyhubb, Community Member
10/23/10 1:16am

To the person with AS asking about headaches:

 

My son, 39, has a severe form of AS and has had four major back surgeries so that he can be upright, but has not successfully accomplished that.

 

Headaches may not be a part of AS but it depends on where the headaches are and what they feel like.   My son had Chiari Malformation which caused severe pressure headaches.  The kind of headaches that feel like his eyes were going to pop out.  From what the Chiari Institute told me, many people with AS also have Chiari.  The way my son was diagnosed with AS was that he had a terrible case of iritis.   Whe the opthalmologist did blood work, he found the HLA-B27 gene.   This gene is usually one of the major diagnosing tools for AS.  

 

He had a sinet MRI and 9t showed the Chiari Malformation (a protrusion of part of the cerebellum) was protroding into his cerebral spinal space causing periodic blockages of cerebral spinal fluid.   The last back surgery he had last December, 2009.  During that surgery, the surgeon fixed the Chiari. 

 

That may be the problem.  If you would like to get in touch with me, my e-mail is:

joyhubb@insightbb.com

 

Thanks.

 

Joy

,

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nortonll, Community Member
2/25/12 2:55am

Hi i thought i was the only one having this issue to. i have migrines everyday. not sure if it's from stress or what. joy if u find out please let me know to thank's lisa

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nortonll, Community Member
2/25/12 2:55am

Hi i thought i was the only one having this issue to. i have migrines everyday. not sure if it's from stress or what. joy if u find out please let me know to thank's lisa

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Claudiapatx, Community Member
2/ 7/12 12:34am

My husband also has AS. And YES, he suffers headaches ALL the time. He says they are "behind " his ears, either one side or the other. But he has them all the time. Very little helps. Humira gave him a little relief, but cause major problems with his gallbladder. So he had to stop that. Hope this helps.

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art, Community Member
12/25/12 5:29pm

Hai

My wife having the same problem , AS with headeache  tha happend for several months , we went to many diferent kind of medical treatment from west to east ...and thank God at last the headeche that has been going on for over 3 months finally disappear by the help of one of the therapist that practice in Perth Australia ,what  he did was just giving presure around her necks and pull the head a few time and amazingly within second all the pain are gone .

 

My advise is to  find the local Physiotherpist that understand about Anklyosing spondalysis .

God Luck

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claudiapatx, Community Member
12/25/12 10:45pm

Thank you Art...At this point he is ready to try anything. But that makes a lot of sense. What exactly did they do? What do we ask of them?

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LSMCC, Community Member
1/30/13 3:00pm

LKB I have had Ankylosing Spondylitis for over 35 years. It is part of my Crohn's disease experience. I have been going to a headache clinic at University of Pittsburgh Medical Center in Pittsburgh, PA. My neurologist explained that A.S. can causes an outgrowth of bony spurs on the spine. In the neck, they can nick the spinal cord which causes a small leak of cerebrospinal fluid. This lowers the pressure in your head and causes the brain to "sag" downward causing a pretty spectacular headache. Mine are somewhat alleviated by lying down. The diagnosis is "postural headaches" due to A.S.

 

I don't know where your headaches are located. Mine are at the base of my skull radiating upward. Gabapentin (Neurontin) helps significantly. You may need to see a neurologist. I pray that you can find help for your headaches. They certainly can wreck a day.

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LSMCC, Community Member
1/30/13 3:01pm

LKB I have had Ankylosing Spondylitis for over 35 years. It is part of my Crohn's disease experience. I have been going to a headache clinic at University of Pittsburgh Medical Center in Pittsburgh, PA. My neurologist explained that A.S. can causes an outgrowth of bony spurs on the spine. In the neck, they can nick the spinal cord which causes a small leak of cerebrospinal fluid. This lowers the pressure in your head and causes the brain to "sag" downward causing a pretty spectacular headache. Mine are somewhat alleviated by lying down. The diagnosis is "postural headaches" due to A.S.

 

I don't know where your headaches are located. Mine are at the base of my skull radiating upward. Gabapentin (Neurontin) helps significantly. You may need to see a neurologist. I pray that you can find help for your headaches. They certainly can wreck a day.

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James Javorsky, Ph.D, Community Member
7/11/13 7:07pm

I as well have ankylosing spondylitis and have had numerous headaches.  Before AS was diagnosed, I rarely had headaches.   Now, I do.  I have cervical issues (two sets of the vetrabae are fused) so it is hard to turn my head the full distance I should be able.  I believe the headaches arise from my cervical spondilitis, it starts at the back of my head and then goes upward till the back half of my head has a headache.   I have reviewed deeply the connection between Headaches and AS and have found some research references about it.   Because I am a university professor, I have access to numerous databases.  I do not have the references on hand and will have to dig them up because I reviewed this a few months ago. 

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By LKB, Community Member— Last Modified: 07/15/13, First Published: 05/02/10