Having focused so long on my headaches without finding a successful treatment, I decided to visit a general neurologist and start from scratch. I brainstormed everything in my body that could possibly be a symptom, even ones I’ve had so long that they seem normal. I also took a list of all the medications and treatments I’ve tried for migraine and chronic daily headache.
I liked the neurologist off the bat. She went over my list symptom by symptom, asking lots of questions and making many notes. A comprehensive neurological exam, with toothpicks pokes, followed. We closed the 75-minute appointment going over the possibilities and planning follow-up steps.
I had blood drawn to test for adrenal problems and lupus or related disorders. Since I haven’t had an MRI since 2002, I had one yesterday. I also had an MRA, which lights up the blood vessels, to check for aneurysms. This afternoon I’m meeting with the neurologist to go over the results.
No one has mentioned adrenal or autoimmune disorders (like lupus) to me before. I’m intrigued. I could probably find symptoms to coincide with any disease, but my do mesh well with autoimmune illnesses. If the test for lupus is positive, I may have lupus. Or I may have one of a long list of other autoimmune disorders (also referred to as collagen vascular disorders). A positive lupus test will mean another level of testing.
I’ll let you know what I learn at my appointment. I really feel like we’re getting somewhere, but I’m trying to not set my expectations too high.
I have been seeing Dr. Rozen ever since he came to MHNI. I was seeing a different doctor before him. I really like him! He is thoughtful, careful and really wants to help. He himself is a migraine sufferer which I think is a plus. He has not been able to get rid of my migraines but he has made a difference. And he is always searching for a way to help.
I have been in Chelsea (MHNIs inpatient program) 2 times and it is beneficial because they have time to try to find treatments, therapies, procedures that work. Dr Rozen, who trained at Mayo and Cleveland Clinic, also got me into Mayo for a complete workup and I entered THEIR 3 week program. It was also helpful, although I would say for me that it was most helpful with getting me moving and working on my attitude. They are VERY anti-analgesic there saying that taking anything for pain….even a tylenol is a crutch. I am not so sure I agree with all of their theories.
Dr Rozen has worked to find non-narcotic non-rebound causing pain relief for me and it has worked to some extent. Right now I am going through a bad spell but things were much better a couple of months ago. That isn’t his fault. i am under a great deal of stress.
I HIGHLY recommend Dr. Rozen to anyone who is interested in seeing him!
This first appointment sounds very positive. I’m so glad!
I had to travel all the way to Dallas to find out I had diabetes and thryoid disorder, so I know how hard it can be to find someone who thoroughly looks for answers to get to the bottom of what is going on with you. It’s so helpful to have someone who knows how to carefully examine all the possibly relevant factors and address them one by one. It’s a long road anyway, so it’s nice to know you’re at least being somewhat methodical about examining possible solutions.
I continue to think of you often and wish you much healing. Try to hang in there.
Hugs! – Diana
For what it’s worth, I also had low adrenal hormones last year when my headaches were at their worst. Also, Gluten sensitivity is an autoimmune condition, which I also have. I was checked for the others, like lupus, etc. but those came back negative. Any autoimmune disease can adversely affect your adrenals.
I saw a naturopath for my low adrenal levels and took adrenal supplements and cortisol supplements for about 6 months. If you turn out to have adrenal issues, there is a good book I found about it. Most mainstream docs only think it is important when it gets to the level of seriousness of Addison’s Disease, but alternative docs acknowledge that low adrenal hormone levels can seriously affect a person’s quality of life long before it gets to that stage. The book is Adrenal Fatigue, the 21st Century Stress Syndrome by James L. Wilson, N.D., D.C., Ph.D.
Good luck. I hope you find out something as a result of all this.
Hi Kerrie,
Long time follower; rare poster. But since we’re on the subject of new docs, I stumbled across Dr. Rozen with The Michigan Headache & Neurological Institute (MHNI). I’ve read rave reviews about him and the clinic. Does anyone have an opinion on this one?
4 years of NDPH and I’ve had enough and am looking for fresh ideas too. Thanks.
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Someone on the forum went to the MHNI inpatient clinic this spring and had excellent results. Here’s her story: http://www.thedailyheadache.com/forum/viewtopic.php?t=15
I’ve heard enough great things about MHNI’s inpatient program that I’m considering going myself. They have a lot of good information on their website: http://www.mhni.com/
If you’re close enough to see someone there as an outpatient, then I’d go for it. If you’re considering an inpatient program, they’ll set up a phone interview to make sure the program would be right for you.
Best of luck!
Kerrie
I’m glad you found a good neurologist to take a look at your case. It never hurts to have fresh eyes on a situation.
I had not heard of the MRA test before. I’ll be sure to ask the headache specialist about it when I see him next month.