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Chronic Pain members - Welcome, please introduce yourself
Chronic Pain | Last Active: Apr 26 9:22am | Replies (6794)Comment receiving replies
I don't know where to start, other than saying that I have been "here" (in chronic pain land) for longer than I realized. I've had headaches since I was 10. At first they weren't chronic, but at some point over the years they have become an almost daily occurrence. I have a diagnosis of chronic migraine. I am not a candidate for the typical daily preventive meds as I have ridiculously low blood pressure. I have been using Botox for about 6 months now. There is a slight decrease in pain days but it has not been stellar. My forehead does look fabulous though 😉
I'm not sure that the migraines are actually typical migraines, or if there is something else going on. I definitely know that the occipital nerve is involved by the location and type of pain that I experience. But I also had an MRI done before receiving the Botox- they found numerous tiny white matter foci, and a lot of demyelination. To add to the back story, I have recently had difficulty with the vision on my right (intermittent blurry- have to close it and use my left instead) and great difficulty swallowing. The pain is crushing me, and to be honest I'm a bit scared. Do migraines typically change over time or am I missing something? I'm stuck waiting in cue for a neuro. The family doctor is not helping at all. Is there anybody out there like me?
Replies to "I don't know where to start, other than saying that I have been "here" (in chronic..."
@jamienolson I appreciate the link on migraines, I was planning to ask about that today! I used to suffer from migraines and my daughter does now so I looked on the discussion list but did not see migraines. Now that I have the link I will send it to her. When I had migraines I read that many people with migraines know more about them than do doctors unless the doctor is a migraine specialist. I read everything I could get my hands on -- before the day when we had the internet.
I think if you have any condition you tend to learn more about it than the typical doctor. Obviously my doctors did not know enough about cirrhosis to diagnose me for a year and four months. If I knew then what I know now I would have headed to Boston after 6 months of no diagnosis up here.
JK
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@tinydancer, hello and welcome to Mayo Clinic Connect! Thank you for expressing your concerns here. You have come to the right place!
Here http://mayocl.in/2rCQYLt is some information I dug up on Mayo's website regarding side effects from OnabotulinumtoxinA, that include difficulty swallowing.
Also, If you follow this next link you will be able to join other conversation with members on connect, discussing Migraine's http://mayocl.in/2r3bMzI There is a lot to learn from others on how they cope with symptoms- sharing information is key. 🙂
Do you seek care here at Mayo? If you weren't aware, there is a headache clinic in Rochester that patients are often referred to.
Have you ever considered or tried acupuncture? I have a family member that suffers from chronic migraines and has had great success with it.