Hello from Seattle area

Finally after about 3 months I was advised to go to a neurologist. On a scale of 0 being the lowest and 5 being the highest, I was always at a 4 or 5. I felt like I was wearing a tight football helmet from the inside out and something was very swollen inside my head. I was started on Keppra which helped lower the area of the pain gradually to the size of a baseball cap but never really lowered the pain. On Keppra I lost 1/3 of my hair and after 6 months also had bleeding colitis and had to get off immediately. This was replaced with Topamax which I remain on today.

Not long after as I was building up gradually on topamax, I had what I called "nerve storms". I would feel like I was getting blisters on the tips of my fingers and my toes, even though I was not, and then my headache would increase rapidly. My legs to my knees and my arms to my elbows would tingle terrible and hurt with what would be like the worst growing pains. This cycle would last for 4 days. This lasted for 6 months 1 to 2 times per month until my GP suggested I try xanax which ended the problem.

At this point I told my neurologist I wanted to be put into a comma to rest because NO migraine or pain meds worked on this headache. She referred me to the University of Washington. The first available appointment was in 7 1/2 months and not even in the headache department.

I sought out a new neurologist that specialized in headaches. He knew my headaches were connected to the origonal sinus infection because I never had abnormal headaches before that time. He ran tests on my spinal fluid, its levels and looking for a leak. All proved inconclusive. That is when he had me read articles from the Mayo clinic and from Dr. Rozen at the Michigan Head Pain and Neurological Institute (MHNI). Dr. Rozen's research fit me perfectly. This neurologist encouraged me to go to Ann Arbor to see him. To make a long story short, I did just 1 year ago and was in the hospital there for 2 weeks. He was able to get my pain level to zero. IV Phenergan got me to a level 2 and IV Benadryl with IV Droperidol got me to a zero.

For most of the year I have been able to maintain headache levels at zero. I have to keep up with daily meds, I stick to the migraine diet, I do pilates and walk, I do biofeedback therapy and I see a good counselor. I work part-time jobs for flexibility and rest. And try to keep a good support group of friends around me because my family has been tough to work with.

Daily Meds:

CO Q - 10 400mg

Acidophilus 4/day (Topamax gives me yeast infections)

Vitamin C 1000mg

Vitamin B Complex

Vitamin D 2000mg

Centrum Silver

Topamax 100 2x/day

Clonazepam 3mg

Melatonin 10mg

Singulair 10mg 2x/day + Minocycline 50mg 2x/day

This is Dr. Rozen's protocol for going after the cytokines left in my CSF after my sinus infection.

His first chioce is doxycycline but I had a terrible reaction to this drug. I was off all cycline drugs all summer and just started back on minocycline and am hoping for the best.

Abortives:

Skelaxin 800mg, Phenergan 25mg Seroquel (new) 25mg

Thanks for listening. It has been a long, hard journey and still is because bottom line they do not have a cure. susangf

I have seen several. The Dr. that helped me the most and sent me to Ann Arbor was Dr. Steven Singer in Kirkland. I began seeing a general neurologist Dr. Ellen Modell in Edmonds who was very nice but she just did not have any idea what I had and did not know what to do with me when I did not respond to any medication migraine and/or pain. Then I got a second opinion from Swedish Dr. Sheena Aurora who said she could not help me. Then I was referred to UW and had to wait 8 months and could not even get into the headache clinic. That is when I called Dr. Singer. I had gotten his name from a friend. I was fortunate and got an appointment within 1 week on a cancellation. Once he had me figured out as NDPH and knew he could not get me out of pain, he sent me off to Dr. Rozen at MHNI. They can not get all NDPH people to zeros but they were able to get me there and I have been able to maintain it most of 2007/08. Dr. Rozen is one of the leading researchers in this country on NDPH.

Hope you are enjoying your new home! Sorry you have to deal with these headaches. Susangf

My husband also saw Dr. Aurora and then Dr. Singer. Dr. Singer was the one that reffered my husband to Dr. Mathew here in Houston, since we were moving here. I wonder why he didn't refer us to Michigan..... Either way, we are living in Houston now and if Dr. Mathew isn't going to cut it, we'll be on our way up to MI.

My husband spent 5 days in the hospital on the IV drugs, the last 2 of which he was in severe pain due to kidney stones that they attribute to the Topamax. While in the hospital he got from a pain level of 8, to a 2-3. Then they pumped him full of narcotics due to the kidney stones and now that he is home and kidney stones passed, his HA pain is back up to 5-7. (this all happened last week) We're back off to the neurologist this Friday to see what he has planned next. I am wondering if the IV drugs weren't given a fair chance due to the kidney complications. I would sure hate for him to have to back into that hospital, but wonder if he should.

I called the clinic in Ann Arbor today and found out they are out of network for our insurance (Premera BC) as they are apparently for all insurances. We're, of course, disappointed about that, but we'd pay a LOT to get rid of this headache once and for all. They told me they could get him in as soon as 3.5-4 weeks. We're making our decision about going up there after we see his neurologist here Friday.

Thank you so much for the information and I'm so glad you are a success story! I hope my hubby can be one too.

I know that I have heard stories of both of the big name hospitals (MHNI and Jefferson in Philadelphia) being able to break the headache and people doing a lot better, but I have also heard stories of the headaches breaking and coming back, or just stubbornly refusing to break. They probably do have at least a few more options up their sleeves at the researching hospitals since your husband may end up being part of the research, or they may know of things that haven't been published yet.

On the other hand, it did sound like something they were doing with the IV therapy at the hospital where you were was working, even though it hadn't broken the headache completely and, like you, I wonder if they may have been on the right track and just got interrupted by the complications or by the painkillers they had to use for them. Let us know what you two decide and how things go.