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Ketogenic Diet and Hypoglycemia

ketogenic-diet-and-hypoglycemiaGrief had me wide awake at 3 a.m. on Saturday, I was trying to figure out which chores I could cram into the 14 hours before I returned to the land of migraine disability. I had admitted defeat with the ketogenic diet. One more meal was all I had left on the diet; dinner would take me back to migraine as usual.

Ketogenic Diet and Hypoglycemia: Cause and Effect

Frustratingly, even though the ketogenic diet reduced my migraine attack severity and enabled me to be more functional, it also caused hypoglycemia—which is in itself a migraine trigger. Despite a month of various fixes, I couldn’t get it under control. (I’ve actually been wrestling with it for two months. That awful nausea I attributed to dehydration was actually hypoglycemia. The wrung out feeling I woke up with each day was the fallout from hypoglycemia-triggered migraine attacks that came on while I slept.)

How I Discovered Hypoglycemia Was the Problem

After increasing to 2500 calories to gain some weight back, I woke up each day ravenous and shaky. This seemed odd—how could I be hungrier than when I ate 1700 calories a day? Knowing that a ketogenic diet could cause hypoglycemia, I began researching. Not only did I discover that it was likely I had hypoglycemia, but the nausea and accompanying symptoms of the previous month fit the pattern of reactive hypoglycemia perfectly.

Reactive Hypoglycemia

Reactive, or postprandial, hypoglycemia occurs two to four hours after eating. It’s usually a crash after eating a meal high in carbohydrates. Although I wasn’t eating many carbohydrates, my blood sugar was so low the rest of the time that I’d crash after my meal each day. It would start two hours after the meal, but I’m so used to ignoring vague physical symptoms that I didn’t notice until they got bad. Which they did like clockwork six hours after eating every night.

Treating Hypoglycemia

The treatment of mild hypoglycemia is relatively easy: eat small, frequent meals and eat a dose of carbs whenever your blood sugar dips too low. The latter was obviously out (it’s hard to dose up with carbs when you are limited to 15 grams a day). The former didn’t work for me either, since I still had a migraine attack every time I ate, so I could eat no more than two meals a day.

Desperately Searching for Fixes

I spent a month trying every possible fix I could imagine: increasing from one to two meals a day, eating the same ratio with less protein and more carbs, a lower ratio, 100 calorie snacks that didn’t seem to trigger migraine attacks (they did, the attacks just built slowly), eating more in the morning, 1 gram doses of sugar, more calories… Nearly everything worked for a day, then became ineffective. I tested my blood sugar so often that my fingertips developed callouses.

Magical Thinking

An idea came to mind a couple weeks ago that sounded like pure magical thinking: What if I increasing my ratio to 4:1 (that’s 90% fat) made the diet more effective and enabled me to eat small meals without triggering migraine attacks? I ran it past Hart and my naturopath. They both agreed with the magical thinking hypothesis.

Going for Broke

I didn’t give up on Saturday. I was clinging so desperately to the good hours that I decided to give the 4:1 ratio a shot before calling it quits. I began yesterday by cutting my protein in half so I could keep a relatively high carbohydrate content for the transition period. By evening, I felt remarkably good. I managed three 114 calorie snacks in less than three hours without a migraine attack. A migraine attack didn’t even come on in the night.

Today’s meal plan increased the protein and decreased the carbs some. Four 114 calorie snacks later, no migraine attack ensued and my blood sugar was fine (still on the low end, but manageable). Things went downhill when I ate an actual meal—it triggered a migraine attack and my blood sugar tanked. Several small snacks helped me recover and I’m up and thinking again.

Research Soothes My Worries (a Bit)

Today I learned that a person’s blood sugar range tends to be lower on a ketogenic diet than it normally is. Anything below 70 mg/dL is typically considered hypoglycemic, but 55-75 mg/dL is typical on a 4:1 ketogenic diet. This isn’t a cause for concern as long as the person doesn’t have hypoglycemia symptoms. Also, it can take a full week for one’s blood sugar to stabilize when starting on or changing a ketogenic diet. That means all my dietary tweaks have probably done just the opposite of what I intended. (I am not a medical professional—PLEASE don’t take my word for any of this information. If you’re struggling with a ketogenic diet and hypoglycemia, work with health care professionals to determine the best approach for you. I’m being very careful and consulting with doctors and dietitians as I attempt this unorthodox experiment. Still I worry my low blood sugar is causing long-term harm to my brain. I’m seeing an endocrinologist next week and am going to try get yet another opinion from a neurologist at an epilepsy clinic. Maybe then I’ll find peace of mind.)

Optimism

Obviously, there are a lot of kinks to work out, but I feel like I’m getting closer to getting them sorted. Although most of my earlier fixes didn’t last long, they were all focused on increasing my carbohydrate content. Eating more frequent meals is a far more sustainable option—and one that seems like it could work. I’ve come close to admitting defeat countless times in the last two weeks. I have shed so many tears that I’m distrustful of possible indications of success. But the signs are promising, so I’m still hopeful.

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Migraine Stigma: The Paris Review’s Infuriating Contribution

“Everyone relishes a migraine. They have a literal aura! Migraines foster the sort of pure narcissism that only intense, essentially benign pain can. We sufferers (that’s how it’s described, “migraine sufferer”) feel it is meet and right that the migraine should be dramatized in films like Pi or White Heat; this strengthens the perception that migraines are the hallmark of geniuses, or at least psychopaths.

“[Joan Didion wrote,] ‘My husband also has migraine, which is unfortunate for him but fortunate for me: perhaps nothing so tends to prolong an attack as the accusing eye of someone who has never had a headache.’ I disagree. What migraine sufferer wants to share the limelight? After all, we all know in our hearts that no one in the history of the world has ever experienced basically unserious pain like we have.”

This excerpt from an article called Head Case appeared on the Paris Review’s blog. The first reading left me furious, but I thought I must have misunderstood the post. I read it repeatedly, trying to identify the satirical angle. I sent it to Hart to see if I’d missed something. Because the Paris Review wouldn’t publish something so trivializing of a disease that can be disabling. Right? Wrong!

My first reflections on Head Case overflowed with expletives and name-calling. That’s not my style, so I set the topic aside to revisit. Here’s what I came up with.

Writers write what they know. The writer includes herself among the “sufferers,” so I can only assume she’s writing about herself—that she relishes the attention she gets from migraine, that she thinks her pain is the worst in the world. Instead of owning her feelings, she projects them onto everyone who has migraine. Of she does. It’s far easier to claim everyone with migraine has such nasty thoughts than to admit that you alone are being a jerk.

Some people probably do relish the attention they receive when talking about migraine. Some do engage in one-upmanship (though I’ve only witnessed this on the internet, never in person). But these represent a tiny slice of people who have migraine. Most of us are nothing like this. Most don’t share our stories to get attention or prove our “genius.” We share our stories to show how incredibly difficult this disease can be to live with. We share our stories because so few people understand how disabling migraine can be.

Migraine stigma is so strong that some people, like the writer of the Paris Review post, internalize it. Instead of believing the severity of migraine attacks, they think they are exaggerating or lazy, that they’re making a big deal out of nothing. My personal experience has shown me this all too clearly. In July 2013, I wrote in a Migraine.com article called Internalizing the Stigma of Migraine:

“No matter how much I write about the needs of migraineurs and work to reduce its stigma, that very stigma has insinuated itself into my self-perception. It will continue to haunt me whenever I have a migraine attack until I accept in both my mind and heart that I am not deficient or lazy, but have an illness that is in no way a reflection of my personality, desires, or attitude.”

I wrote those words almost exactly 10 years after migraine rendered me unable to work and eight years after I started this blog. I didn’t apply migraine stigma to anyone else, only to myself—and did so for years after I knew intellectually it wasn’t true. I have finally shed that internalized stigma, but cannot forget how how fervently I once believed it.

After my initial draft of nastiness, I began to pity a person who would publish such hateful things about herself. I’m still angry and find her pitiful, but it is tinged with compassion and sadness. I feel for someone who turns on herself because she has internalized this stigma. I’m sad that so many of us have done just this. But my empathy only goes so far. I cannot forgive someone for furthering that stigma by publishing such vitriol on the website of a revered literary journal.

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Migraine Stories: From Chronic Migraine to Advocate & Fundraiser

migraine-fundraiserKatie has turned living with chronic migraine into a chance to help others and raise awareness about the disease. In addition to starting a support group for people with migraine called Migraine IDAHO, she is hosting the second annual Haturday for Heads fundraiser. Haturday for Heads has already raised $740 for the Migraine Research Foundation through online hat sales (sorry, they’re sold out!) and will be hosting an in-person event in Boise this Saturday, April 23. The Boise event will be from 2 to 4 p.m. at BBQ4Life, which will donate a portion of food sales to migraine research. You can also enter to win some great raffle prizes at the event. If you can’t attend in person, Katie encourages you to share your story on social media (tagged #haturdayforheads2016) or donate to Haturday for Heads on CrowdRise.

Get to know Katie and learn more about Migraine IDAHO and Haturday for Heads in this interview she kindly did with me:

Katie’s migraine story

I remember my head hurting as a young kid, especially in the summer time and having to lay on the couch. But I don’t think I had true migraines until my teen years. Around 15 then got to a point that I decided I need to see someone. We (my parents and I) started with the eye doctor to rule out any vision issues, when my vision ended up at 20/20 we moved on to a neurologist. When I had my fist visit he asked me a question I will never forget, “When was the last time I did not have a headache?” I could not answer, I thought about it and could not remember the last day that I did not have some form of head pain.

He strapped the diagnosis of chronic daily headache with migraines on me and decided that we were going to shock the daily headaches into stopping. I spent a day at a outpatient facility having some drugs pumped into me with an IV. I do not remember what it was all I know is it made me nauseous and I vomited multiple times. It was such a terrible experience that when he asked me if it worked and my headache had stopped, I lied and said yes so that I would not have to do it again. From there over the years I tried different things, other neurologist with preventives, chiropractors, digestive health. Nothing has yet to work well.

I have had a few years here and there where my migraines and daily headache have been better and I managed without any medication. Now I have my baseline headache everyday, around a 2-4, with migraines anywhere from 3-7 days a week. I don’t get an aura, I do have sensitivity to light and noise. Most of the time my migraine is on both sides, but can be more intense on the right. I rarely get nausea, which is good because the few times I have, I ended up in the ER because the nausea was uncontrollable. Fatigue is also a big symptom for me.

What Katie wishes people understood about migraine

I wish that people understood that I did not choose this. That I am not lazy, that my house is messy sometimes because I am exhausted and it hurts to bad to move. I want people to realize that this is a disease and there is not a cure, I may find something that provides relief but I still have this disease/illness, it will not magically go away.

The motto that helps Katie cope with chronic migraine

One day at a time.

About Migraine IDAHO

Migraine IDAHO is a community, a group for sufferers to have support. A group to help raise awareness and provide education and resources on migraines. Right now there is a closed support group on Facebook. It started after I had found some national migraine support groups on Facebook. I always had felt like I was alone with migraine growing up. I felt like I was the only person who was experiencing this kind of pain. Once I got on Facebook and found others like me, it really helped learn more about my disease and accept it. So I wanted to create in Idaho a group that I never had, a place where that young girl, and all sufferers, were not alone. Eventually I hope the Migraine IDAHO can hold in-person support groups, do educational talks at school and businesses about migraine, and continue to raise funds for research.

About Haturday for Heads

Haturday for Heads is a migraine awareness and fundraising event. All the proceeds go to the Migraine Research Foundation. This year there was an online design contest for the hat design, hats that could be purchased on worn on April 23, and then an in person event at BBQ4Life. [Hat sales are over for this year, but follow Migraine IDAHO on Facebook so you can be sure to get one next year.]

For the last 4 or 5 years I have wanted to do some sort of event for that would help raise awareness and educate about migraines, raise funds for research, and strength the migraine community. I had communicated a few times with some of the folks at Miles for Migraine about getting a race here in Boise. The manpower needed and the logistics have not lined up yet, and I say yet because having a Miles for Migraine race here in Boise is still a goal for Migraine IDAHO. Anyways, I had the desire and want to do a event, I just needed a catalyst to make it happen.

I was back in school at Boise State University to finish up my bachelor’s degree and one of the last classes I took was Communication in a Small Group. We were put into small groups and our semester project was to do something that make a change in the community. When I heard what our assignment was, I instantly knew that this would be my opportunity to do an migraine event. It took some persuasion on my part, but I was able to get my group on board with the idea.

We only had two months to organize and our event in class so we keep it pretty simple. We had it at BBQ4Life and had a few silent auction items and a few of us made silly hats to wear. We raised around $200, which was great. After the event last year I had someone tell me that they were asked, “When are we going to have a Haturday for Heads in our city?” That got me thinking that I needed to make this a national if not worldwide event, and why not, migraines are all around the world. So I thought a good way to be able to include people everywhere would be to have a hat designed just for Haturday for Heads and people could wear it the day of the event and post pictures online. This way anyone anywhere, even the ones of us in bed with a migraine could participate.

I have already surpassed a lot of my goals for this year. We had some great designs submitted that were voted on. And then when the hat was available to purchase, we ended up selling 42 and raised $720. We still have the in person event at BBQ4Life, if would be great if we raised some more money, but for me the big goal there is to have awareness in the local community increased.

I have big dreams and goals for future years. This year we had people across the nation purchase a hat, next year I would love to see people internationally involved. In following years I would like to see some in person events happen in other cities. Also, if the Haturday hashtag became one of the top used tags, that would be awesome!

How you can participate even if you don’t live in Boise

Anyone who purchased a hat can post pics the day of the event with #haturdayforheads2016 to all social media sites. If you didn’t get a hat purchased in time, you can donate to the Haturday for Heads CrowdRise page. Also, if people comment, share, and post about Haturday for Heads they can be a part of it and help spread awareness. It would be great to see the internet explode with #haturdayforheads2016. Be it post in their hats, or just post about themselves and how migraine has affected them.

I am hoping I can do a live video post on Facebook at BBQ4Life, if so it will be on the event page.

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Updates to Post on Migraine Drugs & Cognitive Dysfunction, Dementia

I accidentally published an old draft of the post on migraine drugs and cognitive dysfunction and dementia is older adults. Here’s the substantially updated version.

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Some Migraine Drugs Linked to Cognitive Impairment, Dementia in Older Adults

migraine drugs linked to dementia, cognitive impairment in older adultsThis post was updated at 12:40 p.m. PDT on April 19, 2016.

What kind of long-term impact will taking migraine drugs have on my body? Am I trading a better present for more problems in the future?

These and similar questions have flitted through my mind for years. I usually push them aside—I need these drugs to function, so I don’t feel like I have much choice. Besides, an abstract future worry is so vague that it doesn’t seem to require much attention. Thanks to new research, that worry no longer seems abstract or vague.

Cognitive impairment and dementia in older adults have been linked to anticholinergic drugs, which block the neurotransmitter acetylcholine, in an increasing number of studies over the last decade. Some popular antihistamines, antidepressants, and anti-nausea meds used as migraine drugs have anticholinergic effects.

The research may not be cause for alarm, which I’ll explain in a moment. The first question you want answered is likely: Which drugs put me at risk?

Migraine Drugs With Anticholinergic Effects

This list contains drugs I’m aware of people using for migraine, but it is not an exhaustive list of anticholinergics. Indiana University has a more complete list of anticholinergic drugs (PDF). A JAMA article on the topic also includes Vivactil (protriptyline) and Compazine (prochlorperazine). ACB score refers to “anticholinergic cognitive burden,” which determines if a drug has mild or moderate anticholinergic effects.

Mild Anticholinergic Effect (ACB Score 1)

  • Actiq (fentanyl)
  • Duragesic (fentanyl)
  • Effexor (venlafaxine)
  • Flexeril (vyclobenzaprine)
  • Immodium (loperamide)
  • Valium (diazepam)
  • Wellbutrin (bupropion)
  • Xanax (alprazolam)

Moderate Anticholinergic Effect (ACB Scores 2 & 3)

  • Advil PM (diphenhydramine)
  • Atarax (hydroxyzine)
  • Benadryl (diphenhydramine)
  • Dramamine (dimenhydrinate)
  • Elavil (amitriptyline)
  • Flexeril (cyclobenzaprine)
  • Gravol (dimenhydrinate)
  • Norflex (orphenadrine)
  • Norpramin (desipramine)
  • Pamelor (nortriptyline)
  • Periactin (cyproheptadine)
  • Phenergan (promethazine)
  • Sinequan (doxepin)
  • Tegretol (carbamazepine)
  • Tylenol PM (diphenhydramine)
  • Vistaril (hydroxyzine)

Anticholinergic Burden Unknown

(have an anticholinergic effect, but do not have an ACB score)

  • Compazine (prochlorperazine)
  • Vivactil (protriptyline)

Anticholinergic Drugs, Cognitive Impairment, and Dementia: The Research

Keep in mind that:

  1. These studies do not provethat anticholinergic drugs cause cognitive impairment or dementia. They have found that a link exists between taking the drugs and cognitive impairment or dementia.
  2. All published studies have focused on older adults, most with an average participant age in the early 70s. It is speculated that increased age makes the body more susceptible to these effects, possibly because these drugs permeate the blood-brain barrier more readily in older people.

Risk depends on strength of cholinergic effect

Drugs with a mild cholinergic effect (an ACB of 1) can cause cognitive impairment in older adults within 90 days of continuous use. Those with a strong cholinergic effect (ACB of 2 or 3) can cause cognitive impairment in 60 days of continuous use. Non-continuous use can also have an impact, though the exact length of time varies. Cognitive effects were increased with the number of anticholinergic drugs a patient took. (See Just 2 Months’ Exposure to Anticholinergics Affects Cognition)

Dose matters (somewhat)

The higher the drug’s dose, the greater the risk, according to a study published in 2015. However, even at the minimum effective dose, taking the drugs for prolonged periods were linked to a greater likelihood of cognitive impairment or dementia than for those not taking anticholinergic drugs. “This is not excessive use,” said the lead author Shelly Gray, PharmD, from the University of Washington. “Many of these agents are used chronically, and chronic use—even at low doses—would put you in the highest risk category.” (See ‘Strongest Evidence Yet’ Links Anticholinergic Drugs, Dementia)

Changes in the brain

Brain imaging found lower brain metabolism and reduced brain sizes among participants taking anticholinergics, as reported in a study published this week. Participants taking the drugs also scored lower on cognitive tests than those not taking the drugs. This is the first study looking at the underlying biology of the link identified by earlier research. (See IU Scientists: Brain Scans Link Physical Changes to Cognitive Risks of Widely Used Class of Drugs)

Age of participants

The published studies I found are focused on older adults. Researchers believe that a person’s central nervous system becomes more sensitive to anticholinergic medications with age. It could be that younger patients don’t have the same risks, but that’s uncertain. This warning from Dr. Gray haunts me: ‘There is no data on how these drugs may affect younger people, but I personally will avoid taking anticholinergic agents.”

I found one study presented at a conference that looked at the ACB of younger patients with chronic pain. Participants with chronic pain had significantly higher ACB scores than healthy participants and their cognitive function appeared to be affected. The burden was greatest in patients aged 30 to 39. (See Pain Patients at Cognitive Risk From Anticholinergic Burden?)

Cognitive Impairment vs. Dementia

Cognitive impairment and dementia are very different things. Several studies show that cognitive impairment due to the drugs could be reversible. The drugs could magnify symptoms of an already present mild dementia or bring symptoms on earlier than would have happened otherwise. However, brain atrophy, as found in the study published this week, doesn’t sound reversible.

What’s the Actual Risk?

No one knows for sure. The research is concerning, but is far from conclusive. Many questions still remain. Talk to your doctors and pharmacists for advice that’s best suited to you—it will depend on your age, the medications you take and why you take them, how effective the medications are for you, what alternative medications might help you, and other health problems you may have. Please don’t stop taking your medications without first talking to your health care providers—doing so could put you at risk of other problems.

I plan to ask all my doctors and pharmacists for input. My gynecologist and endocrinologist haven’t prescribed anticholinergics, but I trust them both and want them to weigh in on this, too.

Why I’m Sharing This Research

I freaked out when I first learned about this research last year. I started to write about it, then set it aside. I decided the research was too inconclusive to scare people by reporting it. When I saw the study published this week, I changed my mind. The research is still very preliminary and I don’t want people to panic. Nonetheless, patients should be aware that this research exists so they can make an informed decision about which medications are best for them. Your doctor will probably tell you that it’s not cause for concern, but it’s better to be able to ask them about it than remain completely in the dark.

Kerrie’s Uneasy Truce

The two medications I take daily, cyproheptadine and Wellbutrin, are on the list. My paternal grandmother had Alzheimer’s and I have been afraid of the disease for as long as I can remember. I doubt I would have started the drugs if I’d known about this research. I’m not sure that’s a good thing. These medications allow me to get out of bed. The past four years have been relatively manageable thanks to them. They have improved my quality of life enough that I’ve been able to aggressively pursue other treatments.

I was terrified when I started writing this post, but I have calmed down considerably the more I have learned. This is preliminary research. Cause and effect hasn’t been established. I’m 28 years younger than the average patient in the studies. I’m actively trying to find alternative treatments to these medications. Migraine research is making tremendous strides in preventive treatment. Of course I’m still a little worried that I’m trading the present for the future. I’d be worried about that even without these drugs.

REFERENCES

American Academy of Pain Medicine (AAPM) 29th Annual Meeting. Poster 221. Presented April 12, 2013.

Anderson, P. (2013, May 22). Just 2 Months’ Exposure to Anticholinergics Affects Cognition. Medscape. Retrieved 4/18/16 from http://www.medscape.com/viewarticle/804558.

Anderson, P. (2013, Apr 15). Pain Patients at Cognitive Risk From Anticholinergic Burden? Medscape. Retrieved 4/18/16 from http://www.medscape.com/viewarticle/782520.

Cai, X., Campbell, N., Khan, B., Callahan, C., & Boustani, M. (2013). Long-term anticholinergic use and the aging brain. Alzheimer’s & Dementia9(4), 377-385.

Hughes, S. (2015, Jan 27). ‘Strongest Evidence Yet’ Links Anticholinergic Drugs, Dementia. Medscape. Retrieved 4/18/16 from http://www.medscape.com/viewarticle/838788.

Gray, S. L., Anderson, M. L., Dublin, S., Hanlon, J. T., Hubbard, R., Walker, R., … & Larson, E. B. (2015). Cumulative use of strong anticholinergics and incident dementia: a prospective cohort study. JAMA internal medicine,175(3), 401-407.

Indiana University (2016, Apr 18). IU scientists: Brain scans link physical changes to cognitive risks of widely used class of drugs [Press release]. Retrieved 4/18/16 from http://news.medicine.iu.edu/releases/2016/04/anticholinergics-brain-effects.shtml.

Risacher, S. L., McDonald, B. C., Tallman, E. F., West, J. D., Farlow, M. R., Unverzagt, F. W., … & Saykin, A. J. (2016). Association Between Anticholinergic Medication Use and Cognition, Brain Metabolism, and Brain Atrophy in Cognitively Normal Older Adults. JAMA Neurology, April 2016 DOI:10.1001/jamaneurol.2016.0580

Salahudeen, M. S. and Nishtala, P. S. (2016) Examination and Estimation of Anticholinergic Burden: Current Trends and Implications for Future Research. Drugs & Aging, April 2016 DOI: 10.1007/s40266-016-0362-5