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30 December 2016

How a Headache Specialist Changed My Life


Three months ago I went to see Dr. Rosenthal, a headache specialist who was hired by Kaiser Permanente to work out of the North Baltimore medical center.  Dr. Rosenthal previously worked at the Johns Hopkins Headache Center.  In fact, he was the one who started it.  To say the least, I was extremely blessed to have him as my headache specialist. After almost a decade of being unable to get Kaiser to approve any requests to see one outside of their network, it seemed as though things were finally in my favor.

I was very excited to see someone who was educated in headache disorders.  My neurologist is great and has done everything he could in trying to reduce the frequency and severity of my migraines.  But we have come to a roadblock and needed help.  Before seeing Dr. Rosenthal, I was getting minimal relief from my quarterly Botox injections and was not on any helpful prevention medication.  I was in and out of urgent care for frequent severe migraine attacks and was hospitalized about three times for DHE infusions for the ones that would not break.

Even after so many failed attempts at trying to get better and for having migraine for thirty years, I still had hope.  Without it I would be doomed, and losing it will only permit my disease to take over and win.  So it was with great enthusiasm and optimism that I went into my first appointment with Dr. Rosenthal.  I saw him for almost two hours and we had the opportunity to go through my entire migraine history.  What I came away with was entirely new prevention, abortive, and rescue plans for my particular migraine.  

Some things were kept in place, like Botox and my neurostimulator.  We even discussed the possible addition of occipital leads if it was necessary to help with pain in that area. Preventative medications Atacand and Namenda were added.  I felt good about the possibility of these actually working for me.  As usual, I would give them about three months to see if I saw and felt and improvement.  Others were taken out for good, like the use of Stadol nasal spray (a narcotic) for the use as an abortive/rescue.  He never saw anyone get better with the use of narcotics so that was the first thing to go.  That included not using Dilaudid in my urgent care/ER protocol.  I'll admit that one was hard to let go of.  Not because I was addicted to it.  After being on it for ten years I became dependent on it to help me get rid of my pain, even though it was only 30-40% effective in doing so.  Without having triptans, anti-inflammatories, or DHE to abort my pain due to intolerance, allergic reactions, or ineffectiveness, narcotics became my only option.

In lieu of Stadol, my abortive was to continue using Zomig and add two Aleve and one Relpax (for nausea).  If the migraine worsened or did not go away, I would use Migranal, which is DHE in a nasal spray along with dexamethasone (a steroid) for up to three days.  I didn't have success with Migranal about a decade ago, but being that I had been getting DHE infusions with a high success rate in aborting a migraine I figured it would be just as effective.  My biggest concern was the nausea, however I would take the Relpax prior to using it to reduce that side effect.  The first time I used Migranal, my head pain was at a nine after my abortives failed.  Almost immediately, my pain skyrocketed to an unknown level of pain.  It was horrible.  That was the last time I used it and will never use it again.

With the exception of the Migranal, everything has been working out great.  For the last three to four weeks, I haven't needed to use anything stronger than Aleve for migraine pain. Two of those, with the use of peppermint and clary sage essential oil lotion (you can buy it here), has been able to get rid of my migraine.  My insomnia has also gotten better.  Dr. Rosenthal prescribed me Lunesta for sleep, but once I started taking Namenda, my sleep got much better.  Before I saw him I was only getting between 3-5 hours of sleep a night on good nights.  Now I get an average of 7-8!  I rarely need to use Lunesta which I am very happy about.

I feel as though the Botox is working much better now that I am on these preventative medications and I haven't needed to turn my neurostimulator on in almost three weeks.  I am so grateful to be in this place of healing.  With fewer migraine attacks I can finally start becoming more physically active.  I work out at least three times a week doing strength training and do ab work 5-7 days a week.  I drink a gallon of water a day (most days) and want to begin adding some cardio in once or twice a week.  My mother brought me an exercise jump rope that she no longer uses during her visit along with some exercise DVD's. Next week I plan on trying them out to see which one I can tolerate the most.

This is new territory for me and in the back of my mind I do not want to get too happy about where I am right now.  I have been disappointed and let down so many times on this journey.  However, I feel different and physically I am doing more than I have in years.  It is amazing how two hours with one doctor has changed so much in my life.  I am supremely blessed and fully appreciate how holding onto hope has gotten me here.  Never doubt the power and lasting effect of hope.  Even if it is so small that you barely have sight of it, hope will bring you out to a better place eventually.  If I can get here than so can you, because you are strong and persevere despite your pain.

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