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Chronic Headache & Migraine Summit

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29 September 2016

I Can Finally See The Light!

The last five or six weeks have been hell.  I have been stuck in an intractable migraine with status migrainosus for over thirty days.  If that isn't some form of hell than I don't know what is because it is the worst EVER.  This particular migraine had me in urgent care three times and hospitalized for DHE infusions twice.  Obviously, my current treatment plan (or lack thereof of one) has kept me in this chronic pain hell.  This is what my chronic migraine treatment plan entailed as of yesterday morning:

Prevention

Visits to urgent care and DHE infusion therapy
  • Botox every three months
  • Neurostimulator
  • Mindfulness/Meditation/Guided Imagery
  • Diet (no gluten, dairy, soy, sugar, and all other food/alcohol triggers)
Abortive
  • Zomig
  • Zofran
  • Ibuprofren
  • Acetaminophen
  • Benadryl
Rescue
  • Stadol Nasal Spray
  • Dilaudid

Two months ago I was looking through headache specialists in my area trying to find one that will accept my insurance.  Finding one that seemed like a good fit, I asked for a referral from my PCP to see him.  She kindly forwarded it to my neurologist who then let me know that Kaiser has hired a headache specialist that will be working in the Baltimore area in October.  That was major news since I have been denied to see any other headache specialists by Kaiser over the last seven or eight years.  Naturally, they denied my referral but who cares! I can finally see someone who can help me!

After a very painful and long August and September I was seen by the great Dr. Jason Rosenberg yesterday.  Prior to coming to work for Kaiser, he was the director of the Headache Center at Johns Hopkins (lucky me!!).  He only had myself and another patient scheduled that afternoon so he spent almost two hours with me.  It was nice not having a time constraint which made the appointment flow seamlessly where it needed to go.  We discussed my long history with migraine, all of the medications I have tried in the past, procedures that may have helped or not, sleep habits, and the big elephant in the room - my weight.

Thanks to the wonderful antidepressant Paxil, I gained almost fifty pounds.  Before I started on it a few months ago I was already overweight due to taking Lyrica for migraine prevention. At that time I was only 30 pounds over my normal weight and was really trying my best to lose it.  I switched antidepressants because the one I was on was not working very well.  My psychiatrist did let me know that it can cause weight gain but I was willing to try it again (I was on it years ago with no side effects or weight gain).  Well, here I am weighing 248 pounds and very embarrassed and depressed about it.  I could lose 100 pounds and still be 18 pounds over how much I should weigh for my height (5'7"). *sigh*

How do you lose so much weight when exercise causes exertion headaches which then turn into full-blown migraine attacks?  I have hardly any will power when it comes to food because food is everything and it makes me happy.  Yes, I have an unhealthy relationship with food. But I am also the one who makes homemade yogurt, kefir, almond and coconut milk, and spice mixes from scratch.  So basically I am a food addict conundrum.  Dr. Rosenberg wants me to lose one pound a week by either eating 500 calories less a day or burning 500 calories more a day.  My daughter was with me at my appointment and she basically became my drill sergeant yesterday.  She will keep me accountable and on track and boy do I need that in my life right now. I also plan on getting in touch with my naturopath again so that she can help me in losing weight properly,

The next topic was sleep.  I have insomnia and have been struggling with not sleeping enough for almost a decade.  My current sleep aid medication, Atarax, also causes weight gain.  Something that my psychiatrist did not tell me.  No wonder I feel hungry after I take it! As an added bonus, not getting enough sleep causes the build up of cortisol in the body which then causes weight gain.  Naturally, I was switched to Lunesta and was given a sleep plan:

  1. Schedule consistent bedtime that allows 8 hours time in bed.
  2. No TV, reading, music in bed.
  3. Use visualization techniques to shorten time to sleep onset.
  4. Move your last food to at least 4 hours before bedtime; limit fluids within 2 hours of bedtime.
  5. Stop naps.
A new prevention, attack treatment and rescue plan was started.  First of all, away with the Stadol.  He has never in 10 years helped anyone who has stayed on a narcotic, so that's gone.  I will continue with Botox, keep my neurostimulator and if all else fails add occipital leads.  I will remain on Wellbutrin for mood management as it is headache neutral.  He would like for me to try Atacand (candesartan), a low side effect blood pressure medication that can prevent headaches.  If Kaiser does not cover that drug than we have two other options to try - Zonegran (zonisamide), a gentler cousin of topiramate or Namenda (memantine).

For acute/attack treatment I have two ways of "knocking out" a migraine.  The first is to take Zomig + 2 Aleves + metoclopramide 10 (Reglan) and ondanestron (Zofran) for nausea if needed as a backup.  If I need something stronger, than I would take metoclopramide + ondanestron and wait 20 minutes, then DHE nasal spray (Migranal) one spray each side, wait 15 minutes and repeat.  I can do no more than 8 sprays in a 24 hour period and can use it for no more than two days per week.

As a rescue I will have the steroid dexamethasone (Decadron) at home to keep me out of urgent care/ER.  I can take 12 mg of dexamethasone for up to two days but no more than two times a month.  We also tried an occipital nerve block on the left side yesterday to see if that will help lower my pain and possibly put it in remission for a period of time.  I will be updating Dr. Rosenberg in two weeks with how the nerve block has either helped or not. Today I still feel pretty numb but I do have a moderate migraine (4 out of 10) right now.

My goals after yesterday's appointment are to improve my function/minimize lost time, become "good enough" with acceptable side effects rather than "perfect", realize that there is no quick fix and that it could take weeks or even months to bring symptoms gradually under control, and Dr. Rosenberg will help me manage the big picture and not each individual headache.

I feel very good about my future with Dr. Rosenberg and I believe that I will begin to see some improvement in my health.  It is very important that I hold up my end of the bargain by sticking to my sleep plan and my goal to lose one pound a week.  Is it going to be easy, no. But when has anything ever been, right?  I will keep everyone updated on my progress. Thank you to everyone who has followed me on this journey and who continue to pray for my healing.  It really helps me get through those tougher moments.  Take care, stay well, and remember that pain ends!

More Information about Dr. Rosenberg:

Dr. Jason Rosenberg is a neurologist who has specialized in headache disorders since 2006. He was the founder and director of the Johns Hopkins Headache Center at Bayview from 2006-2016.  He is currently practicing at the South Baltimore Kaiser Permanente Medical Center in Halethorpe, Maryland.

Johns Hopkins Medicine, Dome publication - Crushing Headaches





5 comments :

  1. I am so happy to hear that you found a headache specialist. It can make all the difference in the world. I wish you the best. When my cluster attacks start up, they can last 6 months...or more. My specialist was my saving grace. Keep the Faith!

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  2. I'm crying right now. You are my double. I have had migraines for 26 years. The last month I have gone through what you have gone through. I have a great neurologist that I have gone to for 12 years and she had tried many things. I am going to write down everything your doctor said and talk to her. My daughter suffers as well and we were able to get her into Thomas Jefferson Migraine Clinic and they were fantastic. I am not so free with my insurance. Some days I feel like I can't take one more day of pain or disappointment that whatever new I have tried hasn't worked. God bless you on your journey and thank you for sharing.

    ReplyDelete
  3. It is so encouraging to read your blog and hear about all the things you are trying. Thank you for sharing. I am 24 and have had episodic migraines for the past 4 years, turning chronic and daily 2 years ago. It really does make me feel better to hear someone like you who has struggled for so much longer so positive about trying new things. Thank you.

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  4. I hope you find some relief with your new plan. My wife also suffers from migraines and she's also having trouble getting her insurance to pay for a headache specialist. I'm showing her your post so she can discuss some of the options that you mentioned in your post because she is losing too much time from her job from migraines.

    ReplyDelete

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