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susangf
susangf
Rank Member
Online Status OFFLINE
Member Since 10/16/2007 09:19 PM
Last Online 06/08/2013 07:47 PM
Gender: Female
Birthdate: 04/11/1951
City: Fox Lake
State: Illinois
Country: United States of America
Occupation: Caring for Ill parents
A little about me: I have been dealing with NDPH for about 5 plus years. It started after I had a sinus infection in the fall of 2004. I never really had more than a routine headache before that time and beginning after the infection was gone in January 2005, I had a headache that never went away 24/7. It was a pressure headache that felt like I was wearing a tight football helmet and something was swollen inside my head. On a scale of 0, being the lowest, to 5, being the highest, I was usually at a 4 or 5. No regular migraine or pain medicines helped. Keppra helped a little but I lost 1/3 of my hair and after 6 months had bleeding colitis. I was switched to topamax which also helped a little. In 12/05 I began to get what I called "Nerve Storms". First I would feel like I was getting blisters on the tips of my fingers and my toes even though I was not, then my headache would increase rapidly, and finally my legs and arms would tingle and hurt like the worst growing pains to my knees and elbows. This would last for about 4 days. I would get these 1-2 times per month. After 5 months of this I asked my neurologist at the time, to put me into a comma so I could rest. She referred me to the University of Washington. The wait was so long for an appointment, about 8 months, I found another neurologist, specializing in difficult headaches, in the mean time. Through my PCP Xanax helped stop my "Nerve Storms". My new neurologist did studies on my spinal fluid for levels and any leaks. When these proved inconclusive he gave me an article by Dr. Todd Rozen at MHNI and advised me to go to Ann Arbor to see him. The descriptions in Dr. Rozen's article fit my situation exactly and I went to Michigan 11/06. I was evaluated and hospitalized for 2 weeks and left at a 0 pain level. With the daily medicines and abortive medicines they were able to find for me, I have been able to maintain mostly 0's since. There have been some bumps in the road and I have to live a very regimented life - sleep, diet, exercise, biofeedback, physical therapy, good counseling, stress control... It is a lot of hard work. Todd Rozen MD now practices at Geisinger Health System in PA. He is usually working out of the Neuroscience Clinic in the Wilkes-Barre location. I had one Major relapse in the fall of 2008 when my headache started and would not stop. The same abortive that helped me in the hospital in MI IV Droperidol plus Benadryl did the job again to stop my pain. I live at mostly 0 pain levels even in very stressful situations. I get 1 or 2 severe headaches per month that take 2 to 5 days to shake. I remain so thankful to Rozen MD for stopping the constant pain cycle. I continue to see Rozen MD to keep the best approach to NDPH. Thanks for listening.
Update 5/2013 I am still living in Illinois but soon hope to return to Seattle. I am in the process of weaning off medications and doing so without getting any headaches. In 2012, I had 2 Headache free months. In 2013, I continue with even with better results. I continue to see Rozen MD 1X/year at Geisinger Wilkes-Barre Susangf
My Hugs
MDJStaff gave me a Hug
01/01/2012 04:51 AM
a HugWishing you a healthy 2012 with lots of people, helping people!

MDJStaff gave me a Hug
12/30/2010 11:46 PM
a HugBIG hug for you & yours!
We wish you an amazing 2011, May all your wishes come true & all your troubles fade away.
We hope that together our community will continue to prosper and help so many all over the globe. People helping people at its best ;-)

rafsmiley37 gave me a Hug
12/26/2010 08:55 AM
a HugI hope your Christmas went well, I am currently amassing Rick's records so I can fax them to Dr. Rozen's office, they said once they get them in they would review his case and call if they think he can be helped, is this how you started?

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