Estrogen, Supplements, Calcitonin and Starting Over in 2012

I try never to set myself up to fail. When you have chronic Migraine there is enough struggling and failure going on as it is. I am terrible at New Year resolutions, so I never make them.

I do give myself reachable goals however. Sometimes it’s at the New Year, sometimes it happens at the change of seasons or other milestone. This year I’m determined to make things happen!

TMI warning:

Approximately 3 years ago I was so desperate for improvement — any kind of improvement — in my chronic Migraine status, that I was literally willing to do anything to make it happen. I have had my ovaries removed, and the estrogen patch that initially helped my Migraine attacks eventually began to trigger them. Additionally, I was diagnosed with another headache disorder called Secondary (caused by something else) Intracranial Hypertension (IH) and told by a new doctor that I needed to eliminate the progesterone and the dietary supplements I had been taking. I suffer malabsorption and subsequent serious deficiencies so this made me nervous, but I wanted to be a compliant patient and did as I was told.

I continued to try to find a doctor while continuing my care with my primary care physician to get me by. I weaned myself off the Lyrica that did very little to help me, gave me kidney stones, increased aphasia attacks and had me hog-tied to a doctor every 2 months for prescriptions. I played a hunch that the Parkinson’s medicine I was taking for my Dystonia wasn’t as necessary as they had once thought and I weaned myself off that as well. Since it was known to contribute to IH too, I had hopes that I would soon be feeling better.

To my relief, the symptoms of IH vanished, and my Migraines became less frequent and severe. My severe auras became more an oddity than the rule. I started to look at life with hope again.

In the meantime, my osteoporosis began to respond to the lack of estrogen I depended on to keep my bone density where it was (which was minimal), and began to get worse despite remaining active. My Sjogren’s Syndrome resulted in severe personal dryness issues that were refractory to treatment. I began to suffer continual urinary tract and kidney infections as well as fissures, and kidney stones that required intervention — all which would respond to estrogen if I could just find a way to make it work for me instead of against me. My face aged 10 years in 2, my hair and eyelashes thinned as did my skin, and although I never considered myself an especially vain person, I felt bad that I couldn’t take the estrogen that would at least make me look better on the outside than I felt on the inside.

My vitamin D levels hit the basement again, and my inability to spend time in the sun more than 15 minutes a day only made it possible for me to bring my levels out of the danger zone for the summer.

My inflammation markers went high again (this is a serious problem in autoimmune patients like me) and my doctors urged me to consider retrying fish oil to help.

In the meantime, my Migraines slowly became more frequent again while remaining refractory to most of the few treatments I was able to try.

A discussion with my remaining doctors put us at an agreement to retry the estrogen, vitamin D and fish oil — with a couple minor changes. The fish oil would be changed to more bio-available krill oil, and the vitamin D would be changed to more bio-available D3 at much lower, more frequent doses. The estrogen would now be taken in the form of a cream that would allow direct application of doses that I could control and build on until I either reached the point where my body reacted sufficiently or I had to stop because of increased Migraine or IH.

If I begin to suffer symptoms of IH again, I have a prescription of Diamox ready to treat it.

Additionally, I was prescribed a calcitonin nasal spray in hopes that it will help my bone density improve without the problems inherent with bisphosphonates I have been on in the past. A potential side effect for this drug is “headache” so I will have to watch out for that as well.

My goal for 2012 is to get back on my estrogen therapy first, then vitamin D, then krill oil, then Calcitonin. It’s important that I try to add back each of these individually and with sufficient time between them that I know what to attribute any side effects to so it can be either adjusted or stopped.

I am a patient person. It may take me months or even a couple of years to get everything back into play. My body is very sensitive and I have many health issues to take into consideration and deal with. The trick with treating Migraine and all my other health issues is patience. In 2012 I’m going to be practicing lots of that!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (6)
  • body
    6 years ago

    I feel for you, Ellen. I had a hysterectomy when I was 34 yrs old for severe endometriosis. When I was 42 years old, I had both ovaries removed because doctors thought I had ovarian cancer (turned out to be severe endometriosis again). My migraines boomed after the surgery and getting me regulated on hormone replacement therapy took a while. What finally helped was a low dose form of natural estrogen that I still take daily. I also take calcium and Vit D3 supplements. prescribed by my doctor. Good luck with your treatment.

  • Ellen Schnakenberg author
    6 years ago

    sharron murray – It sounds like we have very similar stories! I have tried several types of estrogen, but as yet have found nothing that I can tolerate. It’s unfortunate that I wasn’t successful with any of my goals for 2012, but have a post coming out shortly about what I have going on for 2013 – lots of really good changes, starting just next week!

  • Lynne Lee Bennett-Cassaro
    7 years ago

    You have chronic Migraine, too! And, malabsorption? I have neuropathic pain/duct damage after total hysterectomy for stage4endo…been reading about chronic pancreatitis causing malabsorption/low Vitamin levels, like D(my level is 29 &B12 200ish)…also Celiac (I have CVIDs so one year gluten-free diet didn’t ease my abdominal pains)…have you been screened? Chronic pancreatitis is usually alcohol related but can be autoimmune…AND amylase/lipase are often normal and diagnosis is frequently delayed for many years. How’d your MD find IH? Any treatment for that, like a shunt? Lastly, my rheumy suspects antibody neg Sjogren’s. Sad we have so many bad things in common but glad to find you!

  • Lynne Lee Bennett-Cassaro
    7 years ago

    Whoa…shoulda proof read. Bad thumb.

  • Lynne Lee Bennett-Cassaro
    7 years ago

    Duct damage when gall bladder removed…18 months GI MD sain right-sided burning,stabbing,ripping pains COULDN’T be my gallbladder but surgery revealed it adhesions attached it to a loop of bowel and bladder squashed too (misdiagnosed IC) and uterus frozen to back of abdominal wall. So…gall bladder duct was damaged which can cause pancreatitis but I am currently getting the runaround ,again…surgeon said either the obturator damaged it or Physical Therapy pre-surgery when they thought I just had Fibromyalgia and they’d dig their elbows into my abdomen for myofascial release while rolling their eyes, thinking over-exagerrating my pain. But…autoimmune pancreas issues can cause some of your symptoms or Celiac. (Sorry…long-winded)!

  • Bethany Hamilton
    7 years ago

    Think key words for us are sensitive and patience. I hate to say that because it’s really hard when in constant pain and many times not believed or even challenged by doctors. Sometimes I just have to stop for a couple of days to sleep or whatever and only do what I can handle. That’s just my reality now.

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