For most of the last three years, I’ve been dealing with mysterious health issues that aren’t migraine-related (in fact, I’ve been doing pretty well migraine-wise thanks to the gammaCore). Brain fog, fatigue, joint pain, vertigo, tachycardia, and muscle pain, stiffness, and twitching have been the main symptoms. The symptoms come and go with one or two usually taking the spotlight at a time. I’ve seen a rheumatologist, several neurologists, three cardiologists, done lots of physical therapy, and had plenty of tests. I’ve been misdiagnosed with several conditions, none of which really seemed to fit what I was experiencing. And I’ve been terrified that I was in the early stages of a degenerative neuromuscular condition.

The Gist

I can say with 98% confidence that, ultimately, all the problems can come down to either side effects of supplements or vitamin deficiencies, some of which were caused by an excess of a particular supplement. The two main players have been a vitamin B12 deficiency and excess magnesium, though there have been other factors. I think I’ve found a balance. If you’re curious, the details are below.

Vitamin B12 Deficiency

The B12 deficiency is easiest to explain, so let’s get it out of the way. I became a vegetarian as soon as I went off the ketogenic diet and wasn’t diligent about getting enough B12. After a bout of severe vertigo—during which I spent the majority of three weeks in bed—and being misdiagnosed with Sjogren’s syndrome, I began supplementing B12 in earnest. It went great at first. My symptoms decreased fairly quickly after starting the supplement—the joint pain and vertigo were gone and the muscle symptoms improved, but didn’t go away completely.

Since I still wasn’t getting enough B12 in my diet, I kept supplementing it. Then the supplement became a migraine trigger. So I tried in earnest to eat more foods containing B12, which also became migraine triggers. And both the supplements and foods also seemed to cause my heart to race. It took months to sort out, but I eventually found that an occasional B12 injection did the trick for getting enough B12. After a while, I was able to eat it again without it being a migraine trigger. But the tachycardia remained.

Excess Magnesium

All the while, I continued taking magnesium at high doses, which I’ve done since 2011. I didn’t need it for most of my daily migraine management (the gammaCore took care of that), but it seemed to help with weather-triggered migraine attacks and I was hopeful it could help with some of my muscle-related symptoms. I was taking 840 mg a day. I’d been as high as 1,200 mg, so I didn’t think much of it. Until two months ago when I finally put all the pieces together and realized that magnesium was likely the cause of many of my remaining symptoms.

One of the unexpected benefits of the gammaCore is that I no longer needed medications I’d used for years, like Wellbutrin and cyproheptadine. I figured that out after they started causing side effects. It took literally years to consider that magnesium could also be causing side effects. Stopping the magnesium was another step toward resolving my symptoms (most notably the tachycardia, which was such a relief), but there was more work to be done.

Calcium and Potassium Deficiencies

My doctor said that the excessive magnesium may have caused an electrolyte imbalance that resulted in calcium and potassium deficiencies. Supplements often trigger migraine attacks for me, so sorting out that out has been a challenge. I’m getting close—I’ve found a calcium supplement I can tolerate and am working to get the right amount of potassium in my diet.

Vitamin D and Protein Deficiencies

But wait! I let a couple other things get out of whack. Always afraid of triggering a migraine attack, I haven’t taken my vitamin D diligently. I’ll take it for a while, get a blood test and see that it’s at a good level, then forget to take it until I get a new round of symptoms. Lather, rinse, repeat. I literally cannot remember how many times I’ve gone through that rigmarole in the last three years.

And that vegetarian thing? I really thought I was getting enough protein. I’d calculated the amount I needed when I was on the ketogenic diet and was mostly keeping up with it. Except I weighed 25 pounds less then and was sedentary. Between my long walks each day and the strength training I now do three times a week, I’m now considered quite active, which requires a lot more protein than I was getting.

Then There’s the Life Stuff

In addition to managing my fluctuating health, the last three years have been fairly stressful. I watched a loved one die of ALS and nearly lost another to suicide. I saw the end of a friendship with someone I once considered one of my essential people. And Hart and I have been trying to figure out what our life looks like without migraine horning in on our marriage all the time—it’s a good stress, but something to figure out nonetheless. On top of all that, I’ve worked nearly full time at TheraSpecs for much of the last year. Again, that’s a good stressor, but it’s taken too much time away from the health and self-care practices my body requires to stay healthy.

Where My Health is Now

I’m doing a lot better physically. I still have to get some dietary details sorted out and need to wait a while to be sure my symptoms don’t come back, but I think I’m basically on top of the problem. I’ll see another neuromuscular specialist next month to be sure my symptoms are really due to vitamin and nutrient issues rather than an underlying condition. But I feel like I’ve basically got it under control.

My Mental Space

I flirted with the idea of getting angry with myself for letting basic vitamins and minerals get out of whack and for taking so long to realize that the magnesium was a problem. That’s ridiculous. I’ve been working just as hard at sorting out these mysteries as I did at finding effective migraine treatment over the years. I’ve been to doctors and talked to my therapist/naturopath countless times. I’ve been trying so hard and yet I missed some things. I didn’t fall down on the job; I had a surprisingly complicated situation to figure out.

It’s been tough to have these weird symptoms at the same time as I’ve been feeling better migraine-wise. I’ve spent much time worried that I went from being disabled by migraine to either having another disabling disease or, worse, a horrible disease that would kill me prematurely with much suffering along the way. I’ve managed these emotions as they come and they haven’t been too frequent, but they’re terrifying when they do come.

But right now I’m in a good space mentally with my health and the other life stressors I’ve juggled in recent years.

What’s Next

I can’t predict what’s next, but I know what’s now and what I hope for in the near future. I’ve cut my hours at TheraSpecs back to 20 hours a week to allow more time for managing my health and, I hope, doing more writing and advocacy work. I’ve been making time for regular exercise and now need to get on top of healthful eating again (my diet isn’t terrible, but it’s not as vegetable-forward as I’d like to it be). I’m aiming for at least one post for The Daily Headche and one article or video for Migraine.com each month this year. So I hope to be around more often in the coming months!

P.S. My latest article for Migraine.com is Green Light Therapy for Migraine. The NPR story on green light therapy that circulated in December left me with more questions than it answered, so I interviewed the lead researcher to get a better grasp on the research.

Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.

Keeping up with the ketogenic diet and coordinating a new treatment (more on that soon) are taking all my energy right now. But I wanted to share my response to an email from someone who asked what my migraine attacks were like before I started DAO and what other migraine treatments I have tried. The list is too long to compile; instead, I summarized the migraine treatments that have helped me since finding the first somewhat effective one in January 2010. It’s an interesting snapshot.

I’ve had a gradual lessening of the pain since adding various treatments over the last six years. Before that, the pain rarely dropped below a 7 and regularly reached an 8-9. I also had a handful of attacks with level 10 pain, though I am very reluctant to rate my pain as a 10.

January 2010: Began using the NuvaRing continuously. Didn’t affect my baseline pain levels, but stopped the level 10 pain that came with menstrually associated migraine attacks.

November 2010: Moved to Arizona from Boston (weather was a major trigger for me). Made the migraine attacks a little more manageable, but I can’t quantify the improvement. The biggest part is that it freed up some of my energy to began researching and trying different treatments.

January 2012: Began taking about 700 mg of magnesium a day. After that, the pain ranged from 4-7 and occasionally got higher than 7 (maybe several times a month). I ultimately pushed the dose to about 1,000 mg a day.

August 2012: Began taking 12 mg of cyproheptadine. Pain ranged from 4-6 and hit a 7 an average of three times a month.

January 2014: Began DAO (diamine oxidase) in conjunction with a heavily restricted diet. My pain typically ranged from 2-4, but hit a 5 at times. This is when triptans (Amerge) were first effective for me, so I was finally able to abort migraine attacks before they got bad.

March 2015: I once again began getting migraine attacks every time I ate. The pain is usually 2-4. It sometimes hits a 5, but doesn’t get above that. Amerge is not longer a reliable acute medication. Fatigue and cognitive dysfunction are now far more disabling for me than the pain.

January 2016: Began a ketogenic diet. In the last month, I’ve been able to eat 250 calories without always triggering an attack. I typically still have at least one attack a day. (In addition to eating still triggering some attacks, I am much more sensitive to other environmental triggers and can’t go out in public without having an attack.) Amerge helps inconsistently. My pain ranges from 2-4. I can’t remember the last time it was a 5. The cognitive dysfunction is a lot better, but the fatigue is still disabling.

(I followed up with another email clarifying that I have particularly intractable chronic migraine and that this man’s wife will likely find an effective migraine treatment far more quickly than I did.)

Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.

This was in June 2009. It kicked off The Worst Year of My Life. I spent that year in horrific pain and housebound in a city where Hart and I had no support system. When I did get out of the apartment, the weather was miserable, the city was overstimulating, and people were aggressive (especially compared to Seattle’s friendly superficial social interactions). All those factors contributed to a terrible year. But the worst part was that I had given up hope of ever finding an effective treatment.

The future I saw before me was an interminable hell: days of vicious pain with no possible relief, nausea so severe I could barely eat, going to bed in tears each night wondering how I could survive another day. Even reading, which has been my escape since I learned to decipher written words, was impossible. For months, suicide seemed like the only alternative to this future.

I began writing this story after three readers responded to Blindsided By Grief by telling me they have given up hope. My heart aches for them because I know what it’s like to feel desperate and helpless. I’m also worried that I inadvertently made them feel worse. What I should have written was “I will never, never, never again give up trying to feel better.” Because I have given up before. My hopelessness multiplied already terrible physical symptoms to the point that they became nearly unbearable.

I don’t see my determination to never again give up as a sign of some superhuman strength. When my options came down to die, live in misery, or believe in a better future, the latter felt like my only reasonable option. If I stop trying to get better, I stop wanting to live. I will do everything I can to avoid feeling that way ever again. I must believe in the possibility of a better future—and that it’s my job to find the most effective treatment for me—to keep the helplessness and hopelessness at bay.

I did not realize until today what a pivotal role my former headache specialist played in my loss of hope. I have never faulted him before. He was truly sorry he could not help. But he didn’t say *he* was out of ideas, he told me that nothing existed that could help me. He told me to hang on until science caught up with me. It’s as if he took lessons in how to destroy a patient’s spirit. And to think that I found relief three years later with cyproheptadine, one of the oldest migraine preventives available.

Telling someone else to have hope won’t automatically instill it in them. Instead, I’m sharing my story to show that it’s possible to find hope again even when it feels lost for good. For me, hope came back even stronger and more realistic than it was before. Sometimes hope doesn’t feel like enough, sometimes it feels like the despair will gobble me up. But most of the time, it’s a life preserver that I cling to so I won’t drown.

Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.

This 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 & Dementia, 9(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

Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.

You may be thinking I’m lucky or that this is a problem you wish you had. I expect you’d reconsider if you saw me without a shirt on. My sternum is pronounced and my ribs are clearly countable. I look sick. I do not feel lucky. I feel sick.

Talking about unintentional weight loss is a strange thing. I used to think it was the same as unintended weight gain, just in the opposite direction. Then I gained weight on cyproheptadine and discovered how different the two are. Weight gain is almost always reviled in this culture; weight loss is typically celebrated. I see a skeleton reflected back at me in the mirror, but people keep telling me how good I look.

I am on the ketogenic diet for migraine—that is, I’m on the diet to become healthier. Yet I keep losing weight that I’m trying to keep and am likely malnourished. Neither of these things is entirely unexpected. A less extreme version of the diet is popular for weight loss and it’s well known that ketogenic diets are not nutritionally complete. The surprise is in how much difficulty I’m having managing the diet. I didn’t expect so many different, complex variables. I certainly didn’t expect to drop to a pre-puberty weight.

P.S. I’m working with my dietitian and naturopath to increase my weight and correct nutritional deficiencies. The problems I’m having with the diet are solvable. Right now I’m feeling overwhelmed by how quickly the issues escalated and expect I will be on edge until the numbers on the scale increase.

Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.

I don’t have allergies. Could I still have an issue with histamine?

Absolutely. I don’t have allergies either and have no allergy symptoms. Right now, I can only present myself as a case study and say that I’ve encountered multiple people in forums who are histamine-intolerant and do not have allergy symptoms. This is on my list of topics to investigate and I’ll present real data when I can.

What’s the name of the supplement you use and where can I buy it?

The actual name is Histamine Block and it’s available on Amazon. Histame is probably the most popular DAO supplement. It costs less than Histamine Block, but is also less potent. (I’m an Amazon affiliate, so I’ll get a small portion of the sales if you purchase through one of those links. I have no relationship, financial or otherwise, with any company that manufactures or sells DAO.)

What is an HDU?

HDU stands for “histamine digesting unit” and you’ll see it listed on every DAO supplement. It appears to be a scientific term that’s been co-opted for marketing, but the two don’t align. Currently, I only use the numbers to compare the strength of one supplement to another. I’ve also found that, so far, 20,000 HDU is most effective for me.

I don’t get a migraine or headache every time I eat, but I do sometimes and can’t connect it to any particular food. Could DAO help me?

Quite possibly. I think I’m fairly rare to have eating anything trigger migraines (or histamine intolerance symptoms). Far more common is for people to have trouble with particular foods. Certain foods naturally contain histamine or are “histamine liberators,” both of which result in even higher amounts of histamine to your system than is part of the normal digestion process. Most people don’t have as much trouble with the normal histamine release as I do, but run into problems when they eat foods that contain or liberate additional histamine.

What foods contain or liberate histamine?

This is a landmine. The short answer is that you will find many conflicting lists of histamine-containing foods online. Searching forums will confuse you even more. Here’s the list of histamine-containing foods that’s most widely regarded as accurate. You’ll notice that it also includes foods containing tyramine. The two are related (both being amines) and there’s a lot of overlap between them. Tyramine has long been suspected to trigger migraines, and possibly other headaches, so a list restricting both is a good place to start.

Starting an elimination diet is overwhelming and time-consuming and I have tons of guidance to offer. On another day.

Will DAO work if I don’t change my diet?

Maybe, but the odds are against you. Here’s a full post on DAO and diet. lAdded Dec. 3, 2014]

Are DAO supplements safe?

Yes, according to the dietician I’ve been consulting with (who is as close to an expert on this topic as you can get), my naturopath, and the recent DAO for migraine prevention study. Any of the DAO that isn’t used is flushed out through the digestive process. It’s not absorbed in any way, nor does it stick around for more than a few hours. (The information in the last two sentences is from my naturopath. I’m going to double-check it with the dietician.)

Do DAO supplements have any side effects?

None of the 117 patients who completed the aforementioned study of DAO for migraine prevention reported any side effects. That’s pretty much unheard of for a study of a drug or supplement. Online forums are a little different (and also not part of a controlled experiment).

The main side effect I’ve seen on forums is that some people say it makes them shaky. That was true for me initially. Taking the DAO only five minutes before I ate seemed to help, I think because it didn’t sit in my stomach for too long without food. I did that a few times before moving to taking it 10 minutes before eating. My intuition is that it is more effective if it has more time to release before encountering food, but I don’t know that for sure. I’ll ask my dietician about it.

Someone just told me that she flushes and sweats when she uses any brand of DAO supplement. That’s the first time I’ve heard of that side effect and I don’t know how common it is.

I sometimes react to natural supplements. Am I likely to react to this one?

I’ve demonstrated so much intolerance for natural supplements that my naturopath only prescribes pharmaceuticals for me(!), but I’m doing fine with this one. Use your own judgment to decide if the risk is worth it for you. If your reactions tend to be severe or you think the risk is too great, consulting with a naturopath or dietician before taking it would be wise.

Where did you learn about DAO supplements?

The dietician and my naturopath both recommend it. It is also commonly used among people with histamine intolerance, so it’s mentioned on forums a lot.

If I have a histamine issue, could I take antihistamines instead?

If your triggers are connected to food or eating, it appears to be more effective to take DAO than an antihistamine. Adding the enzyme you’re deficient in seems to address the problem more directly than an antihistamine. Antihistamines can also cause a strong enough rebound effect that the dietician warns against them. For now, I’m still taking 12 mg of cyproheptadine, a prescription antihistamine used for migraine prevention, each day.

If you do decide to try an antihistamine, patients with histamine intolerance (whether their symptoms are migraine, headache or something else) seem to have more success with older drugs, like cyproheptadine and Benadryl, rather than the newer ones (Allegra, Claritin and Zyrtec). I don’t know why.

What’s “histamine intolerance”?

Histamine intolerance (often referred to as HIT) is when someone has a reaction to ingesting histamine and/or the release of histamine that accompanies digestion. The reactions vary, but can include diarrhea, headache (and migraine) nasal congestion, wheezing, low blood pressure, irregular heart beats, rashes, flushing, and itching.

Histamine intolerance isn’t a food allergy, but is a food sensitivity (it’s an important distinction). It’s not widely known about, but is starting to get a lot of attention in parts of Europe (especially the U.K.) and Australia. Thanks to the internet, the information is accessible if you know where to look.

For what it’s worth, I haven’t been diagnosed with histamine intolerance, nor have I diagnosed myself with it. But it’s the best search term to find information on histamine and food, and it’s the term most people who have issues with histamine apply to themselves.

Why do you qualify so many statements with “appears to” and “seems to”?

There are a lot of unknowns about histamine and DAO. Finding solid information online is difficult and patient groups lean toward pseudoscience. While I believe I’ve sussed out reliable information, I would rather say I’m not absolutely sure about something than discover that I presented incorrect answers as fact. If I continue to feel as good as I have this past week, I’ll soon be combing through journal articles at the local university library and will pass on what I uncover.

What else do I need to know?

I’m sure I’ll be sharing much more as the week — and year — goes on. If you want to know more NOW (I sure did when I first started learning about this), here are some places to get started:

• Histamine Intolerance Awareness (website) — The food list on this site is kind of difficult to follow and some of the inclusions are questionable, but the rest of the information is a very helpful start. Genny Masterman, who put this site together, has a book called What HIT Me? It’s a good introduction and is written in an accessible, easy-to-follow style, but I found the meatiest information to be covered sufficiently on the website.
• Dealing with Food Allergies (book) — This is my favorite book for the general public, even though the title is misleading (histamine intolerance is NOT an allergy). It doesn’t contain a lot of detail, but hits all the important points and has clear, well-organized food lists. Be sure to check the sections on both histamine and benzoates (benzoates are histamine liberators). I think there’s a section on tyramine as well. The author, Dr. Janice Joneja, the dietician I’ve been working with.
• Histamine and Histamine Intolerance (journal article) — If you’re willing to wade through an academic article, this is the one to read. I’m working on summarizing it, but not sure when it will be ready to post.
• Other websites — If you come across another website and are wondering how accurate it is, please ask me. I’d like to have multiple sites to refer people to and it would be helpful to see which sites people who are new to this topic find.

Please remember that I’m not a medical professional and nothing on this site should be considered medical advice. I’m a patient reporting on what I’ve learned and experienced. I hope that it can help you with your own sleuthing, but please solicit the input of your health care team.

Related posts:

• Being a Human Guinea Pig and Digging into Clinical Research: Food and Histamine, Mast Cells and Migraine (Jan. 9, 2014)
• The Post I Never Thought I’d Get to Write (Jan. 23, 2014)
• “Histamine Block” Does NOT Block Histamine! (Feb. 24, 2014)
• Mast Cell Disorders, DAO & Food Trigger Testing (Mar. 11, 2014)
• Diamine Oxidase (DAO) is Why I’m Doing Better (May 6, 2014)
• Testing if Your DAO Level is Low (May 12, 2014)

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I haven’t written about this “diet” — what I eat isn’t healthful enough to constitute an actual diet so I have to use quotation marks — because it is unhealthful and I do not recommend it to anyone. It is an untenable solution and I worry about my nutrition all the time. Yet, I can’t let go of the life that eating this way has given me.

On this limited “diet,” I wake up each morning and know I can probably do what I have planned, rather than knowing I’ll be lucky to mark two items off my list. It enables me to have engaged and interesting conversations with my husband, make plans with friends actually be able to follow through, write regularly for Migraine.com and The Daily Headache, make meaningful decisions for TheraSpecs, exercise most days, go to yoga classes, attend therapy appointments…. In other words, subsisting on oats and rice is the difference between living a fuller life than I have in more than a decade and spending most of my time on the couch, in the unpredictable throes of a migraine.

I know I need nutrition and I don’t plan to eat this way indefinitely. It has yielded some important clues that I hope will further my treatment — I have an appointment with a dietician experienced in food sensitivities in a couple weeks and my naturopath is going to test me for metabolic disorders. While waiting for those appointments and results, I’m slowly testing high nutrition foods to see how I react. I do so with great caution. It’s hard to willingly return to the migraine cage I’ve lived in for so long.

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Upon finishing that post a few weeks ago, I wasn’t sure if the weight gain was worth the trade off. Then I asked this hypothetical question: Would I stop cyproheptadine tomorrow if it meant I’d lose the weight within a week and my daily pain would return to a level 7? No freaking way! Ten or 20 pounds is an absolutely fair price to pay for level 5 pain.

Avoiding and Coping With Migraine Medication-Related Weight Gain by Diana Lee has some excellent tips if you’re struggling with weight gain from a preventive or inactivity due to migraine.

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The most common side effects, compiled from the FDA-approved medication insert (PDF), WebMD, Drugs.com and RxList, are:

• nervousness
• agitation
• anxiety
• insomnia
• loss of appetite
• nausea
• vomiting
• abdominal pain
• dizziness
• heart palpitations
• headache
• increased heart rate
• increased blood pressure
• dry mouth

Serious side effects, according to MedlinePlus (from the National Institutes of Health), are:

• fast, pounding, or irregular heartbeat
• chest pain
• shortness of breath
• excessive tiredness
• slow or difficult speech
• fainting
• weakness or numbness of an arm or leg
• seizures
• changes in vision or blurred vision
• agitation
• believing things that are not true
• feeling unusually suspicious of others
• hallucinating (seeing things or hearing voices that do not exist)
• motor tics or verbal tics
• depression
• abnormally excited mood
• mood changes
• fever
• hives
• rash
• blistering or peeling skin
• itching
• difficulty breathing or swallowing

For a complete list of potential side effects and their severity, see this thorough list of side effects of 10 mg of Ritalin from Great Britain’s National Health Service or WebMD’s Ritalin side effects.

Personally, I was a little shaky the first couple days I took it, but less than I would be if I had a cup of coffee. Since then, I’ve been careful to eat 30 minutes after taking it, as the label recommends. My feet also seem excessively sweaty and I’ve lost a couple pounds. Having gained 13 pounds on cyproheptadine, I haven’t minded the weight loss and hope that the weight-related side effects of the two medications ultimately cancel each other out. In case you’re concerned, be assured that my casual approach to the drug is not out of a sense of euphoria, but because I’m so happy to feel like my normal self again. The absence of serious side effects makes this even easier, of course.

The possibility that the drug with disrupt sleep is a big one for migraineurs, many of who already have trouble sleeping. I take it first thing in the morning and haven’t had a problem. Because I don’t use it to manage ADD or ADHD symptoms, I don’t need multiple doses in a day. I’m not sure why, but my energy and mental clarity last all day with only one dose.

Beyond the immediate side effects of the drug, there are concerns of its potential for abuse and the effects of long-term use. You’ll have no trouble finding alarming article on either topic. I’m not worrying about either one right now. By taking only 5 mg a day and using it for a legitimate medical condition, I don’t think I’m at much risk for abuse. If I’m still on it in a year, I’ll look into the long-term effects. For now, I’m just enjoying having the mental wherewithal to write long, research-intensive posts like this one.

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Until now. Now my mind is clear(er), I have more energy, and my migraine pain is improving. Today is my fifth day on Ritalin (methylphenidate). My headache specialist suggested it after a number of patients reported a decrease in their headaches and migraine attacks after starting it for ADD or ADHD. Though I’m taking it primarily as a migraine preventive, the fact that it is a stimulant definitely adds to its appeal — the fatigue has been more debilitating than the migraine pain since I started cyproheptadine. The reprieve from my mental fog was entirely unexpected, but so, so welcome. Carrying on an intelligent conversation and following complex tasks without trouble is blissful.

Oddly, the frequency of the migraine attacks is still the same — of the five days I’ve been on Ritalin, I’ve had migraine attacks on four of them, including today. A couple times I wasn’t even sure I had a migraine. The pain was only at a level 3, but I was having trouble staying awake, which indicates a migraine attack for me. I was able to “sleep off” the worst of those attacks with hour-long naps. The overall throbbing pain I’m so accustomed to has diminished, so the pain is mostly localized and stabbing, but mild.

This is a strange and exciting new world and I’m loving it!

Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.